Atrofia wieloukładowa
Charakterystyka, pielęgnacja i opieka

Atrofia wieloukładowa (MSA) to rzadkie, postępujące schorzenie neurodegeneracyjne charakteryzujące się kombinacją parkinsonizmu, zaburzeń móżdżkowych oraz dysfunkcji autonomicznych, takich jak niedociśnienie ortostatyczne i zaburzenia kontroli pęcherza. Średnia długość przeżycia wynosi 6,2-9,5 lat od pojawienia się objawów, które zwykle manifestują się około 50. roku życia. Leczenie jest wyłącznie objawowe i wielodyscyplinarne, obejmujące farmakoterapię (np. karbidopa/lewodopa do 1 g/dzień, fludrokortyzon, midodryna, leki antycholinergiczne), fizjoterapię, terapię zajęciową, logopedię oraz wsparcie psychospołeczne. Kluczowe jest monitorowanie i leczenie niedociśnienia ortostatycznego, które znacząco wpływa na jakość życia pacjentów, a także wczesne planowanie opieki paliatywnej i przygotowanie dyspozycji na wypadek pogorszenia stanu zdrowia.

Atrofia wieloukładowa (Multiple System Atrophy – MSA) – wprowadzenie

Atrofia wieloukładowa (Multiple System Atrophy, MSA) to rzadkie, postępujące schorzenie neurodegeneracyjne, które wpływa na funkcjonowanie wielu układów w mózgu i rdzeniu kręgowym. Choroba ta charakteryzuje się zmiennymi kombinacjami parkinsonizmu (spowolnienie, sztywność, drżenie, zaburzenia równowagi), zaburzeń móżdżkowych (nieprawidłowa koordynacja podczas chodzenia i używania rąk) oraz dysfunkcji autonomicznych (zawroty głowy przy zmianie pozycji, omdlenia, nagłe parcie na mocz/nietrzymanie moczu).1 MSA jest schorzeniem należącym do grupy atypowych parkinsonizmów, wpływającym zarówno na funkcje ruchowe, jak i autonomiczne organizmu.23

MSA dotyka około 25 000-75 000 Amerykanów, a rocznie diagnozuje się około 10 000 nowych przypadków.4 Objawy choroby zazwyczaj pojawiają się gdy pacjent jest w wieku około 50 lat, a choroba szybko postępuje w ciągu kolejnych 5-10 lat.5 MSA cechuje się gorszym rokowaniem niż choroba Parkinsona – większość pacjentów wymaga pomocy przy chodzeniu, takiej jak laska lub chodzik, w ciągu kilku lat od wystąpienia pierwszych objawów.6

Obecnie nie istnieje lekarstwo na MSA, a żadne stosowane terapie nie mogą odwrócić lub zatrzymać postępu choroby. Mediana przeżycia wynosi 6,2-9,5 lat od pojawienia się pierwszych objawów. Starsi pacjenci w momencie wystąpienia objawów mają tendencję do krótszego czasu przeżycia.7 Wiele osób zostaje przykutych do wózka inwalidzkiego lub doświadcza poważnej niepełnosprawności w ciągu 5 lat od początku choroby, a stan pacjenta zwykle kończy się śmiercią około 9-10 lat po wystąpieniu objawów.8

Opieka pielęgnacyjna w atrofii wieloukładowej

Z uwagi na brak terapii modyfikujących przebieg choroby, postępowanie terapeutyczne w MSA koncentruje się na wielodyscyplinarnej strategii kontroli objawów, z pacjentem i jakością jego życia w centrum zainteresowania.910 Kompleksowe podejście do opieki nad pacjentem z MSA obejmuje różne aspekty leczenia objawowego, rehabilitacji i wsparcia psychospołecznego.

Multidyscyplinarny zespół opieki

Pacjenci z MSA powinni być pod opieką zespołu specjalistów, w idealnej sytuacji koordynowanego przez neurologa specjalizującego się w zaburzeniach ruchu.11 W skład zespołu wielodyscyplinarnego powinni wchodzić:1213

  • Neurolog – specjalista od zaburzeń ruchu, który kieruje diagnozą i leczeniem
  • Fizjoterapeuta – ocenia problemy z chodzeniem i równowagą oraz zaleca sposoby poprawy mobilności i bezpieczeństwa
  • Terapeuta zajęciowy – pomaga poprawić wykonywanie codziennych czynności
  • Logopeda – ocenia trudności z mową i połykaniem oraz uczy strategii ich poprawy
  • Dietetyk – ocenia dietę pacjenta i sugeruje jadłospisy poprawiające problemy dietetyczne
  • Urolog – pomaga w leczeniu problemów z układem moczowym
  • Pracownik socjalny – pomaga pacjentowi, opiekunowi i rodzinie w radzeniu sobie z wyzwaniami związanymi z chorobą
  • Pielęgniarka specjalistyczna – zapewnia edukację i wsparcie dla pacjenta i opiekuna

1415

Odpowiednio przeszkolona pielęgniarka specjalistyczna może odgrywać kluczową rolę, zapewniając:16

  • Monitorowanie efektów zmian leków zaleconych przez neurologa i kontakt z neurologiem
  • Edukację i wsparcie w zakresie zalecanych leków oraz pomoc w minimalizacji skutków ubocznych
  • Indywidualną edukację dla osoby z MSA i jej opiekunów w celu zapewnienia optymalnego zrozumienia i zarządzania różnymi objawami MSA w miarę postępu choroby
  • Organizowanie skierowań do innych odpowiednich specjalistów w zespole

Ocena i planowanie opieki nad pacjentem

Kompleksowa ocena pielęgniarska jest kluczowa w identyfikacji czynników powodujących objawy i wprowadzaniu konkretnych środków zaradczych, np. dotyczących czasu podawania leków, szczególnie przeciwnadciśnieniowych i przeciwdepresyjnych.17 Rola pielęgniarki ma krytyczne znaczenie w utrzymaniu jakości życia pacjenta, wzmacnianiu jego możliwości i zapobieganiu powikłaniom.18

Podczas planowania opieki nad pacjentem z MSA należy uwzględnić:

  • Regularne monitorowanie postępu choroby i skuteczności stosowanych interwencji
  • Dostosowywanie planu opieki do zmieniających się potrzeb pacjenta w miarę postępu choroby
  • Wczesne włączenie specjalistów z różnych dziedzin do zespołu opieki
  • Przygotowanie dyspozycji na wypadek pogorszenia stanu zdrowia

1920

Ponieważ MSA jest chorobą postępującą i ostatecznie śmiertelną, pacjenci powinni przygotować dyspozycje na przyszłość wkrótce po zdiagnozowaniu choroby. Dyspozycje te powinny określać, jakiego rodzaju opieki medycznej pacjenci oczekują u kresu życia.21 Wczesne i skuteczne planowanie opieki z wyprzedzeniem oraz dyskusje na temat opieki u schyłku życia są niezbędne dla efektywnej opieki paliatywnej w MSA.22

Leczenie objawowe w atrofii wieloukładowej

Ponieważ nie ma obecnie leczenia przyczynowego MSA, terapia koncentruje się na łagodzeniu objawów i poprawie jakości życia pacjenta. Odpowiednio dobrane leki, terapie i wsparcie mogą pomóc pacjentowi żyć w możliwie najlepszy sposób i zachować niezależność tak długo, jak to możliwe.23

Farmakoterapia

Leczenie farmakologiczne w MSA obejmuje:2425

  • Lewodopa – może pomóc w łagodzeniu objawów motorycznych, ale korzyści są często tymczasowe. Około 30-60% pacjentów reaguje na typowe leki stosowane w chorobie Parkinsona, takie jak karbidopa/lewodopa (Sinemet). Zaleca się próbę dawkowania do 1 grama/dzień lewodopy przez kilka miesięcy.2627
  • Leki na niedociśnienie ortostatycznefludrokortyzon, midodryna, pirydostygmina i droksydopa, które mają na celu zwiększenie objętości krwi lub napięcia naczyń obwodowych.28 Szczególnie ważne jest leczenie niedociśnienia ortostatycznego, które może powodować ograniczenie aktywności fizycznej.29
  • Leki na problemy z pęcherzem – leki antycholinergiczne, takie jak oksybutynina lub tolterodyna, mogą pomóc zmniejszyć nagłe parcie na mocz. Nowsza klasa agonistów adrenergicznych 3 jest stosowana, ponieważ mają one niewielki lub żaden wpływ na funkcje poznawcze.3031
  • Desmopresyna – może pomóc, ponieważ nocna poliuria jest częsta w MSA.32
  • Leki na zaburzenia snu – problemy ze snem, takie jak zaburzenia zachowania w fazie REM, można leczyć lekami, w tym klonazepamem, melatoniną lub niektórymi lekami przeciwdepresyjnymi.33
  • Toksyna botulinowa – może kontrolować ustalone nieprawidłowe postawy mięśni (dystonia).34
  • Selektywne inhibitory wychwytu zwrotnego serotoniny (SSRI) – mogą poprawiać rokowanie pacjentów z MSA w porównaniu z pacjentami nieleczonymi.35

Fizjoterapia i rehabilitacja

Fizjoterapia odgrywa kluczową rolę w leczeniu MSA, zapobiegając problemom z mobilnością i zmniejszając ryzyko upadków. Dostosowane ćwiczenia koncentrujące się na równowadze, sile i elastyczności pozwalają pacjentom utrzymać aktywność przez dłuższy czas.36

Badania sugerują, że parkinsonizm jako dominujący objaw ruchowy w MSA może reagować na fizjoterapię, ponieważ koordynacja, równowaga i zaburzenia chodu mogą ulec poprawie dzięki intensywnej fizjoterapii, a także treningowi oporowemu i ukierunkowanemu na wyzwania treningowi chodu i równowagi w zwyrodnieniowych zaburzeniach móżdżkowych.37

Kluczowe elementy programu fizjoterapii w MSA obejmują:3839

  • Ćwiczenia mięśni kończyn dolnych i brzucha
  • Aerobik wodny na poziomie bioder (nie pływanie, ponieważ powoduje poliurię)
  • Trening postawy w połączeniu z farmakoterapią
  • Specjalne programy, takie jak LSVT-BIG (program leczenia ćwiczeniami dla osób z chorobą Parkinsona), które mogą znacznie poprawić objawy motoryczne40

Fizjoterapeuta specjalizujący się w zaburzeniach ruchu, takich jak MSA, może ocenić problemy z chodzeniem i równowagą oraz zalecić sposoby poprawy mobilności i bezpieczeństwa. Fizjoterapeuta pomaga również określić najlepszą pomoc przy chodzeniu, gdy jest to potrzebne. Laska lub obciążony chodzik z laserem mogą być bardzo przydatne w przypadku zamrożeń.41

Empirycznie pacjentom należy zapewnić regularny dostęp do programów rehabilitacyjnych, np. co najmniej raz w roku.42

Terapia zajęciowa

Terapia zajęciowa ma na celu poprawę wykonywania przez pacjenta codziennych czynności, co sprzyja dłuższej niezależności i lepszej jakości życia.43 Randomizowane badanie kontrolowane pacjentów z łagodną do umiarkowanej MSA, którzy otrzymywali terapię zajęciową, wykazało znaczną poprawę funkcji motorycznych i codziennych czynności.44

Ponadto poprawa jakości życia związanej ze zdrowiem była związana z otrzymywaniem terapii zajęciowej, co potwierdza znaczenie niefarmakologicznych metod leczenia w zaburzeniach neurodegeneracyjnych, takich jak MSA, które mają wszechstronny wpływ na codzienne życie pacjentów.45

Terapeuta zajęciowy specjalizujący się w zaburzeniach ruchu, takich jak MSA, może ocenić pacjenta w domu i zasugerować sposoby poprawy bezpieczeństwa, zarówno wewnątrz, jak i na zewnątrz domu.46 Może również pomóc w:

  • Dostosowaniu środowiska domowego do potrzeb pacjenta
  • Doborze urządzeń wspomagających wykonywanie codziennych czynności
  • Nauce nowych strategii radzenia sobie z czynnościami takimi jak ubieranie się czy jedzenie
  • Ocenie i poprawie bezpieczeństwa w domu

4748

Terapia mowy i problemy z połykaniem

Pacjenci mogą odnieść korzyści z wczesnego wsparcia logopedy, co ma ogromne znaczenie w wielodyscyplinarnej opiece nad pacjentami z MSA.49 Logopeda specjalizujący się w zaburzeniach ruchu, takich jak MSA, może ocenić trudności z mową i połykaniem oraz nauczyć strategii ich poprawy.50

Problemy z mową i połykaniem wymagają kompleksowego podejścia:5152

  • Regularne oceny zdolności połykania
  • Modyfikacja konsystencji pokarmów – w przypadku problemów z połykaniem zaleca się spożywanie bardziej miękkich pokarmów
  • Specjalne techniki połykania nauczane przez logopedę
  • W zaawansowanych przypadkach może być konieczne założenie rurki żywieniowej bezpośrednio do żołądka (gastrostomia)
  • Specjalne programy terapii mowy, takie jak SPEAK OUT! (Parkinson Voice Project) i LSVT-LOUD, które mogą przynieść korzyści niektórym pacjentom z MSA53

Opieka nad jamą ustną przed posiłkami i przed snem zmniejsza częstość występowania zapalenia płuc.54 W przypadku nasilenia się objawów połykania lub oddychania może być konieczny zabieg chirurgiczny w celu założenia rurki żywieniowej lub oddechowej.55

Leczenie objawów autonomicznych

Niedociśnienie ortostatyczne

Leczenie niedociśnienia ortostatycznego (OH) jest jednym z głównych zadań w leczeniu pacjentów z MSA.56 Niedociśnienie ortostatyczne jest leczone głównie poprzez edukację pacjenta i leki. Kluczem do sukcesu jest przestrzeganie zaleceń przez pacjenta.57

Niefarmakologiczne metody leczenia niedociśnienia ortostatycznego obejmują:5859

  • Stosowanie dopasowanych pończoch uciskowych lub elastycznych opasek brzusznych
  • Podniesienie wezgłowia łóżka o 20-45° podczas snu, aby zwiększyć objętość wewnątrznaczyniową i zmniejszyć niedociśnienie rano
  • Zmiany stylu życia, takie jak odpowiednie spożycie płynów i soli
  • Unikanie ekspozycji na gorące, wilgotne środowisko
  • Wykonywanie programów aktywności fizycznej z ćwiczeniami w pozycji leżącej lub siedzącej
  • Małe, częste posiłki dla pacjentów, u których poposiłkowe niedociśnienie jest znaczącym problemem60

Postępowanie u pacjentów z niedociśnieniem ortostatycznym i nadciśnieniem w pozycji leżącej może być trudne, ale często udaje się osiągnąć odpowiednią kontrolę ciśnienia krwi dzięki następującej strategii leczenia:61

  • Stosowanie leków dostępnych bez recepty o działaniu presyjnym
  • Unikanie przyjmowania płynów przed snem
  • Podniesienie wezgłowia łóżka o 15-23 cm

Problemy urologiczne

Problemy z kontrolą pęcherza są leczone w zależności od charakteru problemu:6263

  • Leki antycholinergiczne, takie jak oksybutynina lub tolterodyna, mogą pomóc zmniejszyć nagłe parcie na mocz
  • Botoks może być stosowany w niektórych przypadkach
  • We wczesnych stadiach nietrzymania moczu lekarz może przepisać leki pomagające kontrolować problemy
  • W późniejszych stadiach może być zalecane założenie stałego cewnika, umożliwiającego komfortowe oddawanie moczu
  • W miarę postępu MSA może być konieczne założenie miękkiej rurki (cewnika) w celu odprowadzania moczu z pęcherza

Problemy ze snem

Wiele zaburzeń snu obserwowanych u pacjentów z MSA występuje również u osób z chorobą Parkinsona, z wyjątkiem strydoru, który uważa się za spowodowany atrofią mięśnia tylnego pierścienno-nalewkowego w wyniku braku stymulacji nerwowej z powodu deplecji neuronów serotoninergicznych w jądrze szwu.64

Ciągłe dodatnie ciśnienie w drogach oddechowych (CPAP) jest leczeniem pierwszego rzutu w przypadku strydoru.65 W zaawansowanych stadiach choroby zwiększone wydzielanie z dróg oddechowych i niezdolność do skutecznego kaszlu mogą wymagać częstego odsysania.66

Problemy ze snem, takie jak zaburzenia zachowania w fazie REM, można leczyć lekami, w tym klonazepamem, melatoniną lub niektórymi lekami przeciwdepresyjnymi.67

Wsparcie psychospołeczne dla pacjentów i opiekunów

Wsparcie dla pacjentów

MSA jest chorobą wyniszczającą, która może prowadzić do emocjonalnych i psychologicznych wyzwań. Pacjenci mogą doświadczać uczuć lęku, depresji lub izolacji.68 Ważne jest, aby zapewnić odpowiednie wsparcie emocjonalne i psychologiczne, które może obejmować:69

  • Kontakt z licencjonowanymi klinicznymi pracownikami socjalnymi (LCSW), którzy zapewniają wsparcie emocjonalne dla pacjentów i członków rodziny, we współpracy z psychologami i psychiatrami w razie potrzeby
  • Organizowanie spotkań pacjentów i opiekunów oraz prowadzenie telekonferencji z pacjentami, opiekunami i lekarzami między wizytami w klinice
  • Dołączenie do grup wsparcia dla osób z MSA
  • Kontakt z organizacjami takimi jak MSA Trust lub Mission MSA, które oferują zasoby i wsparcie społecznościowe70

MSA Connect to społeczność internetowa, w której osoby dotknięte MSA mogą się gromadzić, komunikować, uczyć się i dzielić badaniami w jednej, łatwej w użyciu przestrzeni. Zachęca się do rejestracji w celu dołączenia do konwersacji na temat atrofii wieloukładowej i nawiązania kontaktu z siecią wsparcia osób, które dokładnie wiedzą, przez co przechodzisz.71

Wsparcie dla opiekunów

Opiekunowie pacjentów z MSA zgłaszają trudności w opiece nad swoimi pacjentami, nie tylko z fizycznego/organizacyjnego punktu widzenia, ale szczególnie z emocjonalnego, co sugeruje, że opiekunowie są obciążeni oczekiwanymi przyszłymi skutkami chorób neurologicznych w ogóle.72

Obciążenie opiekuna można rozumieć jako wysiłek lub ciężar ponoszony przez osobę, która opiekuje się przewlekle chorym, starszym i/lub niepełnosprawnym członkiem rodziny. Obciążenie opiekuna jest skorelowane z dobrostanem opiekuna i jego podopiecznego.73 Opiekunowie, którzy cierpią z powodu obciążenia opieką bez odpowiedniego wsparcia, są skłonni do obniżenia jakości opieki nad swoimi podopiecznymi.74

Wiadomo, że opiekun pacjenta z zaburzeniami neurodegeneracyjnymi musi przejąć wiele obowiązków, w tym koordynowanie opieki, podawanie leków, obserwowanie upadków, zapewnianie wsparcia emocjonalnego, zachęcanie pacjenta do dbania o siebie, a często nawet wypowiadanie się i przemawianie w jego imieniu, jeśli pacjent nie jest w stanie i/lub jest w trudnej sytuacji, a wszystko to jednocześnie pomagając osobie w codziennych czynnościach w miarę postępu choroby.75

Opiekunowie potrzebują wsparcia w radzeniu sobie ze stresem, z emocjonalnym cierpieniem oraz informacji na temat programów wsparcia społecznego i edukacji.76 Zaleca się następujące strategie wsparcia dla opiekunów:7778

  • Oferowanie wsparcia emocjonalnego – MSA może przynieść emocjonalne i psychologiczne wyzwania. Należy być cierpliwym i wyrozumiałym wobec bliskiej osoby.
  • Dostosowanie tempa – czynności takie jak chodzenie, mówienie, a nawet jedzenie mogą stać się trudne dla wielu osób z atrofią wieloukładową. Należy dać im czas i przestrzeń na skupienie się bez poczucia pośpiechu.
  • Pomoc w obowiązkach domowych – obowiązki takie jak sprzątanie, gotowanie lub sięganie po przedmioty wysoko lub nisko położone mogą być trudne dla osób z MSA.
  • Utrzymywanie kontaktów – MSA może być izolujące, zwłaszcza gdy mobilność staje się ograniczona. Należy pomagać bliskiej osobie w utrzymywaniu kontaktów towarzyskich poprzez przyjmowanie gości, organizowanie wycieczek lub zapoznawanie jej z technologią, taką jak rozmowy wideo.
  • Dbanie o siebie – pomaganie w opiece nad pacjentem z MSA to maraton, a nie sprint. Twoja bliska osoba z MSA będzie potrzebowała, abyś dostosował tempo i uzyskał pomoc, gdy to możliwe, abyś mógł być przy niej przez dłuższy czas.

Opieka domowa i długoterminowa

Organizacja opieki domowej

Zatrudnienie opiekuna domowego dla osoby z atrofią wieloukładową (MSA) może przynieść szereg znaczących korzyści. MSA jest postępującą chorobą neurodegeneracyjną, która może prowadzić do różnych trudności fizycznych i autonomicznych, a posiadanie dedykowanego opiekuna domowego może znacznie poprawić jakość życia danej osoby i zapewnić spokój ducha zarówno osobie z MSA, jak i jej rodzinie.79

Opieka domowa może znacznie poprawić samopoczucie osób z MSA i zapewnić bardzo potrzebne wsparcie i pomoc ich rodzinom. Opiekunowie mogą również oferować elastyczność w planach opieki, aby dostosować się do zmian stanu danej osoby.80

Opieka nad osobą z atrofią wieloukładową (MSA) może być trudna, ponieważ stan ten jest postępującym zaburzeniem neurodegeneracyjnym, które wpływa na różne aspekty funkcji fizycznych i autonomicznych danej osoby. Zapewnienie opieki i wsparcia osobom z MSA często wymaga kompleksowego podejścia, a współpraca ze specjalistami służby zdrowia jest niezbędna, aby zapewnić możliwie najlepszą jakość życia poszkodowanej osobie.81

W miarę postępu MSA pacjenci potrzebują pomocy w zakresie mobilności, kontroli ciśnienia krwi oraz funkcji jelit i pęcherza. Ta utrata niezależności wpływa na jakość życia pacjentów i członków ich rodzin.82

Opieka paliatywna i wsparcie pod koniec życia

W miarę postępu choroby MSA potrzeby pacjenta zmieniają się, a opieka paliatywna może pomóc zarówno pacjentowi, jak i jego opiekunom.83 Opieka paliatywna koncentruje się na łagodzeniu bólu, leczeniu objawów i pomocy pacjentom w radzeniu sobie z problemami związanymi z końcem życia.84

Interdyscyplinarny zespół medyczny odgrywa kluczową rolę w pomaganiu pacjentowi i opiekunom w omawianiu kwestii związanych z końcem życia.85 Nasze badanie pokazuje wyraźne luki w obecnym podejściu do planowania opieki z wyprzedzeniem, celów opieki i dyskusji na temat opieki paliatywnej u pacjentów żyjących z MSA, przynajmniej w naszym ośrodku.86

Systematyczne podejście do opieki paliatywnej w MSA umożliwiłoby osobom żyjącym z MSA i ich zastępczym decydentom podejmowanie decyzji dotyczących opieki zdrowotnej, które są zgodne z ich celami opieki zdrowotnej i ich życzeniami dotyczącymi opieki u kresu życia. Proponujemy ramy planowania opieki z wyprzedzeniem i dyskusji na temat opieki paliatywnej w MSA, aby pomóc zespołom opieki zdrowotnej w tych trudnych, ale niezwykle ważnych dyskusjach.87

W późniejszych stadiach MSA opieka paliatywna może koncentrować się na:88

  • Opiece zapewniającej komfort, leczeniu bólu i zapewnieniu godności
  • Regularnej zmianie pozycji, aby zapobiec odleżynom
  • Wsparciu emocjonalnym zarówno dla pacjenta, jak i opiekunów, w tym poradnictwie

Etapy atrofii wieloukładowej i strategia opieki

Atrofia wieloukładowa (MSA) to rzadkie, degeneracyjne zaburzenie neurologiczne, które wpływa na różne układy w organizmie, szczególnie na funkcje autonomiczne, ruch, a czasem poznanie. Chociaż postęp MSA może się znacznie różnić u poszczególnych osób, zrozumienie typowych etapów może być nieocenione przy planowaniu opieki, ustalaniu realistycznych oczekiwań i przygotowaniu się na przyszłość.89

Wczesne stadium

Porady dotyczące leczenia w początkowym stadium choroby:

  • Uczestnictwo w fizjoterapii w celu utrzymania mobilności
  • Monitorowanie ciśnienia krwi, szczególnie przy wstawaniu, w celu kontrolowania niedociśnienia ortostatycznego
  • Regularne konsultacje z neurologiem w celu śledzenia postępu choroby

90

Średnie stadium

Porady dotyczące leczenia w średnim stadium choroby:

  • Terapia zajęciowa w celu dostosowania się do ograniczeń fizycznych
  • Rozważenie urządzeń wspomagających chodzenie; oceny bezpieczeństwa w domu
  • Terapia mowy w celu rozwiązania problemów z komunikacją

91

Zaawansowane stadium

Porady dotyczące leczenia w zaawansowanym stadium choroby:

  • Korzystanie z pomocy do poruszania się, ewentualnie łóżek szpitalnych dla wygody
  • Oceny połykania, rozważenie zmian w diecie lub rurek żywieniowych
  • Opieka paliatywna może zacząć się koncentrować na leczeniu objawów i jakości życia

92

Terminalne stadium

Porady dotyczące leczenia w terminalnym stadium choroby:

  • Skupienie się na opiece zapewniającej komfort, leczeniu bólu i zapewnieniu godności
  • Regularna zmiana pozycji, aby zapobiec odleżynom
  • Wsparcie emocjonalne zarówno dla pacjenta, jak i opiekunów, w tym poradnictwo

93

Nawigacja przez MSA wiąże się z dostosowaniem do stale zmieniającego się krajobrazu zdrowia. Każdy etap przynosi własny zestaw wyzwań, ale także możliwości opieki i wsparcia. Zrozumienie tych etapów pozwala osobom dotkniętym MSA i ich sieciom wsparcia lepiej przygotować się na to, co może nadejść, zapewniając najlepszą możliwą jakość życia na każdym kroku.94

Badania kliniczne i przyszłe kierunki leczenia

Mimo że obecnie nie ma zatwierdzonego leczenia modyfikującego przebieg choroby w przypadku MSA, prowadzone są liczne badania kliniczne mające na celu znalezienie skutecznych terapii:9596

  • Obecnie testowany jest ampreloxetin, nowy lek na niedociśnienie ortostatyczne, specjalnie zaprojektowany dla osób z MSA97
  • Rozwijane są terapie przeciwciałami przeciwko α-synukleinie98
  • Badane są wielokierunkowe terapie modyfikujące przebieg choroby, w tym leczenie neuroinflammacji za pomocą mezenchymalnych komórek macierzystych (MSC)99
  • Prowadzone są badania nad biomarkerami, które mogą przyspieszyć diagnozę MSA i odróżnić ją od innych podobnych zaburzeń, takich jak choroba Parkinsona100

Program badawczy MSA w Divizion of Autonomic Disorders, we współpracy z Centrum Dysautonomii NYU Langone, prowadzi kompleksowy program badań klinicznych poświęcony atrofii wieloukładowej (MSA). Jako światowej klasy ośrodek referencyjny dla MSA, Program Badawczy Atrofii Wieloukładowej zapewnia bezpośredni dostęp do opieki klinicznej i wsparcie dla ponad 100 osób żyjących z MSA.101

Dystynktywną cechą programu jest jego translacyjne podejście do badań. Pacjenci mogą uczestniczyć w nowatorskich badaniach na różnych etapach choroby, jednocześnie otrzymując najlepszą opiekę kliniczną od dedykowanego zespołu.102

Centrum Dysautonomii zorganizowało również 6. Międzynarodowy Kongres MSA, który odbył się w marcu 2018 roku w Nowym Jorku. Było to największe jak dotąd wydarzenie poświęcone MSA, gromadzące międzynarodowych ekspertów w dziedzinie MSA, a także pacjentów. To forum sprzyjało współpracy i pomogło określić mapę drogową dla inicjatyw MSA.103

Holistyczne podejście do opieki w atrofii wieloukładowej

Chociaż atrofia wieloukładowa jest nieuleczalną i postępującą chorobą, wielodyscyplinarne podejście do opieki może znacznie poprawić jakość życia pacjentów. Kluczowe aspekty kompleksowej opieki w MSA obejmują:104105

  • Wczesna diagnoza i interwencja – im wcześniej zostanie postawiona diagnoza, tym wcześniej można wdrożyć odpowiednie strategie leczenia
  • Multidyscyplinarny zespół opieki – współpraca specjalistów z różnych dziedzin w celu zapewnienia kompleksowej opieki
  • Spersonalizowany plan leczenia – dostosowany do konkretnych objawów i potrzeb pacjenta
  • Regularne monitorowanie i dostosowywanie leczenia – w miarę postępu choroby
  • Edukacja i wsparcie dla pacjentów i opiekunów – w celu lepszego radzenia sobie z wyzwaniami związanymi z chorobą
  • Wczesne planowanie opieki paliatywnej – aby zapewnić godność i komfort w zaawansowanych stadiach choroby

Chociaż decyzje terapeutyczne w leczeniu objawowym w MSA są w większości przypadków pragmatyczne, bez formalnych dowodów z randomizowanych badań klinicznych, dostępne są opcje leczenia objawowego dla objawów ruchowych, niewydolności autonomicznej i zaburzeń snu.106

Czasami zapomniane, ale mające kluczowe znaczenie, są leczenia niefarmakologiczne, począwszy od prostych wskazówek, jak unikać objawów niedociśnienia ortostatycznego (w tym zmiany stylu życia, pończochy uciskowe lub nachylenie głowy podczas snu), po regularne terapie, w tym ćwiczenia i rehabilitację medyczną, aby utrzymać obecny stan mobilności i unikać upadków.107

Interdyscyplinarny zespół medyczny odgrywa kluczową rolę w pomaganiu pacjentowi i opiekunom w omawianiu kwestii związanych z końcem życia.108 Ponieważ MSA jest chorobą postępującą i ostatecznie śmiertelną, pacjenci powinni przygotować dyspozycje na przyszłość wkrótce po zdiagnozowaniu choroby.109

Nawigacja przez MSA wiąże się z dostosowaniem do stale zmieniającego się krajobrazu zdrowia. Każdy etap przynosi własny zestaw wyzwań, ale także możliwości opieki i wsparcia. Zrozumienie tych etapów pozwala osobom dotkniętym MSA i ich sieciom wsparcia lepiej przygotować się na to, co może nadejść, zapewniając najlepszą możliwą jakość życia na każdym kroku.110

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  1. 10.04.2026
  2. www.leksykon.com.pl

Materiały źródłowe

  • #1 Multiple System Atrophy (MSA) | Movement Disorders Clinic
    https://www.movementdisordersclinic.com/multiple-system-atrophy-msa/
    Multiple system atrophy (MSA) is a rare neurodegenerative disorder characterized by variable combination of Parkinsonism (slownesss, stiffness, tremors, imbalance), cerebellar impairment (inco-ordination in walking and using hands) and autonomic features (postural dizziness, blackouts, urinary urgency/dribbling). […] Currently, there are no treatments to delay the progressive neurodegeneration of MSA, and there is no cure. There are treatments to help people cope with the symptoms of MSA. […] Physical therapy helps maintain mobility, reduce contractures (chronic shortening of muscles or tendons around joints, which prevents the joints from moving freely), and decrease muscle spasms and abnormal posture. […] Individuals may eventually need assistive devices such as walkers and wheelchairs. Occupational therapists help with home safety and learning new ways to address activities of daily living such as dressing and eating.
  • #2 Multiple System Atrophy & Parkinson’s | APDA
    https://www.apdaparkinson.org/article/planning-for-the-what-ifs-multiple-system-atrophy/
    MSA is a complex disease that, as its name suggests, is characterized by the degeneration of multiple neurologic systems. […] All people with MSA have autonomic failure, or dysfunction in neurologic systems that control the automatic processes of the body such as blood pressure, urination, sweating and bowel function. […] There are no specific treatments for MSA and treatments are therefore focused on controlling symptoms and maximizing quality of life. Many courses of treatment are similar to PD. […] Treatment of MSA focuses on symptom management.
  • #3 Living with MSA :: Fight Parkinson’s – Together we can
    https://www.fightparkinsons.org.au/living-with-msa/
    Multiple System Atrophy (MSA) is a rare and progressive neurological condition that affects multiple parts of the brain. The gradual loss and shrinkage (atrophy) of nerve cells affects multiple systems in the body and symptoms can be many and varied. […] MSA is a form of Atypical Parkinsonism, meaning that its symptoms are similar to those experienced by people with Parkinsons disease, for example stiff muscles and balance problems. […] Treatments and therapies are available to help manage symptoms of MSA, however there is no cure and we do not know of any way to prevent it from occurring or slow its progression. It is important that people with MSA see a neurologist, preferably one with expertise in movement disorders. […] People with MSA should visit their neurologist regularly for ongoing treatment and advice. If possible see a neurologist with expertise in movement disorders as they are more likely to be up-to-date with the latest advances in treatment and management.
  • #4 Multiple System Atrophy
    https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/msa.html
    Multiple system atrophy (MSA) is a slowly progressive neurodegenerative disease that afflicts approximately 25,000-75,000 Americans, with approximately 10,000 new cases diagnosed each year. […] While there is no cure for MSA, we work to control and alleviate symptoms of the disease to avoid complications and to improve the quality of patients’ lives. […] At UC San Diego Health, we use a multidisciplinary management approach for MSA. Along with a movement disorder specialist, a urologist, physical, speech, and occupational therapists and dietitians are involved in the management plan. […] Physical therapy is also very important to prevent falls and maintain and improve gait. Our physical therapist helps determine the best walking aid when needed. A cane or a weighted walker with laser light may be very useful when there is freezing. Special programs like LSVT-BIG, an exercise treatment program for people with Parkinson’s disease, can significantly improve motor symptoms.
  • #5 Multiple system atrophy: Symptoms and treatment
    https://www.medicalnewstoday.com/articles/multiple-system-atrophy
    Multiple system atrophy (MSA) is a progressive neurological condition that affects movements and involuntary functions, such as blood pressure and digestion. […] MSA onset typically occurs when a person is in their 50s, advancing quickly over the following 5-10 years. In its early stages, doctors may prescribe the Parkinson’s disease drug levodopa, but the benefits are usually temporary. However, medications are available to ease symptoms, such as sleep and bladder difficulties. […] There is no cure for MSA, and medications do not slow or stop the progression of the condition. However, doctors may recommend the following treatments to reduce symptoms. […] Medications for MSA include: Levodopa: This Parkinson’s disease drug may help improve movement symptoms, but the benefits are often temporary.
  • #6 Multiple system atrophy | Handouts | MedLink Neurology
    https://www.medlink.com/handouts/multiple-system-atrophy
    Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the central nervous system (which controls how a person moves), and the autonomic nervous system, which controls involuntary functions such as blood pressure or digestion. […] MSA tends to progress more rapidly than Parkinson’s disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Currently, there are no treatments to stop or slow the progression of MSA, and there is no cure. However, there are treatments to help people cope with the symptoms. […] Physical therapy helps maintain mobility, reduce contractures, and decrease muscle spasms and abnormal posture. […] Occupational therapists can help with home safety and learning new ways to address activities of daily living, such as dressing and eating.
  • #7 Azthena logo with the word Azthena
    https://www.news-medical.net/health/Multiple-System-Atrophy-Treatment.aspx
    People with multiple system atrophy (MSA) generally have a very poor prognosis. Their median survival is 6.2 to 9.5 years after the first symptoms appear. Patients who are older at the time of onset tend to have a shorter survival time. There are no therapies that cure or alter the disease or slow its progress, but there are many treatments available which may alleviate the symptoms of MSA. […] Therapy for autonomic symptoms, including orthostatic hypotension relies either on medications that raise the blood pressure, or on comfort measures such as a CPAP (continuous positive airway pressure) machine. A new drug has recently been approved for the treatment of orthostatic hypotension in MSA. […] Lifestyle adjustments are recommended to help patients manage orthostatic hypotension (OH). These include moving more slowly and carefully, eating smaller meals, avoiding extremes of temperature, and avoiding activities in the morning, when OH symptoms are at their worst.
  • #8 Multiple System Atrophy (MSA) – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version
    https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/autonomic-nervous-system-disorders/multiple-system-atrophy-msa
    Multiple system atrophy is a progressive, fatal disorder that causes symptoms resembling those of Parkinson disease (parkinsonism), loss of coordination, and malfunction of internal body processes (such as blood pressure and bladder control). […] Simple measures and medications can help lessen symptoms, but the disorder is progressive and ultimately fatal. […] Many people are confined to a wheelchair or are otherwise severely disabled within 5 years after symptoms begin. The disorder results in death usually about 9 to 10 years after symptoms begin. […] No treatment can cure multiple system atrophy. However, a combination of simple measures and medications may help relieve symptoms. […] Physical, occupational, and speech therapists can teach people ways to compensate when walking, doing daily activities, and speaking become difficult. Specialists in palliative medicine focus on relieving pain and treating symptoms and helps people deal with end-of-life issues. Social workers can help people find support groups and, when symptoms become disabling, home health care or hospice services. […] Because the disorder is progressive and ultimately fatal, people should prepare advance directives soon after the disorder is diagnosed. These directives should indicate what kind of medical care people want at the end of life.
  • #9 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    Without any disease-modifying treatment strategy for multiple system atrophy (MSA), the therapeutic management of MSA patients focuses on a multidisciplinary strategy of symptom control. […] In the present review, we will focus on state of the art, symptomatic treatment in multiple system atrophy and will additionally give a short overview about ongoing randomized controlled trials (RCTs) in this field. […] Most therapeutic approaches in MSA patients are prescribed off-label and based on results from studies investigating other disorders or from uncontrolled studies, retrospective analyses, case reports, or expert opinion. […] Albeit there is only a limited number of controlled clinical trials pharmacological and non-pharmacological treatment strategies and the involvement of a multidisciplinary team may have beneficial effects on quality of life in MSA patients.
  • #10 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    To date, there are no approved disease-modifying therapies for MSA. However, a broad spectrum of research approaches is currently in development for clinical trials, which could yield new opportunities in the treatment of this relentlessly progressive neurodegenerative disorder. […] The therapeutic management of MSA patients focuses on a multidisciplinary strategy of symptom control with the patient and quality of life at the center of interest. […] Evidence from open label trials and case reports suggests that parkinsonism as predominant motor feature in MSA may benefit from physiotherapy as coordination, balance, and gait impairment may be improved with intensive physiotherapy as well as with resistance training and challenge-oriented gait and balance training in degenerative cerebellar disorders.
  • #11 Multiple system atrophy | Monash Health
    https://monashhealth.org/services/movement-disorders-program/understanding-movement-disorders/multiple-system-atrophy/
    Multiple System Atrophy (MSA) is a rare and progressive neurodegenerative disorder. […] Although theres currently no cure for MSA, a range of drugs, treatments and therapies are available to manage the symptoms. […] The management of MSA is focused on optimizing quality of life, relieving symptoms and assisting patients with their activities of daily living (ADL). […] A multidisciplinary team that includes a neurologist and therapists who specialise in movement disorders is recommended for the management of the complex MSA symptoms. The appropriate multidisciplinary team members should be seen from the time the diagnosis of MSA is received. […] A nurse with specialist training in MSA can provide education and support to the person with MSA and their caregiver. This may include: monitoring the effects of changes to medications as recommended by the neurologist and liaising with the neurologist, providing education and support around the recommended medications and the assist with the minimisation of side effects, providing individualised education for the person with MSA and their caregivers to ensure optimal understanding and management of the various MSA symptoms as the condition progresses, arranging referrals to other relevant health professionals within the specialist team.
  • #12 Multiple system atrophy (MSA)
    https://www.nhs.uk/conditions/multiple-system-atrophy/
    There’s currently no cure for multiple system atrophy (MSA) and no treatments that can stop it getting worse. […] But treatment and support is available to manage any symptoms and help you stay comfortable and independent for as long as possible. […] You’ll be supported by a team of healthcare professionals who will help to create a care plan. […] For example, you may be offered medicines for sleep problems or dizziness, and speech therapy can help with swallowing and communication problems. […] Physiotherapy and occupational therapy may also be recommended. This is to help you maintain fitness and muscle strength and make your daily life easier. […] Every person’s needs will be different depending on their symptoms. […] Most people eventually need some help and support with their daily living.
  • #13 Multiple system atrophy | Monash Health
    https://monashhealth.org/services/movement-disorders-program/understanding-movement-disorders/multiple-system-atrophy/
    Multiple System Atrophy (MSA) is a rare and progressive neurodegenerative disorder. […] Although theres currently no cure for MSA, a range of drugs, treatments and therapies are available to manage the symptoms. […] The management of MSA is focused on optimizing quality of life, relieving symptoms and assisting patients with their activities of daily living (ADL). […] A multidisciplinary team that includes a neurologist and therapists who specialise in movement disorders is recommended for the management of the complex MSA symptoms. The appropriate multidisciplinary team members should be seen from the time the diagnosis of MSA is received. […] A nurse with specialist training in MSA can provide education and support to the person with MSA and their caregiver. This may include: monitoring the effects of changes to medications as recommended by the neurologist and liaising with the neurologist, providing education and support around the recommended medications and the assist with the minimisation of side effects, providing individualised education for the person with MSA and their caregivers to ensure optimal understanding and management of the various MSA symptoms as the condition progresses, arranging referrals to other relevant health professionals within the specialist team.
  • #14 Multiple system atrophy | Monash Health
    https://monashhealth.org/services/movement-disorders-program/understanding-movement-disorders/multiple-system-atrophy/
    Multiple System Atrophy (MSA) is a rare and progressive neurodegenerative disorder. […] Although theres currently no cure for MSA, a range of drugs, treatments and therapies are available to manage the symptoms. […] The management of MSA is focused on optimizing quality of life, relieving symptoms and assisting patients with their activities of daily living (ADL). […] A multidisciplinary team that includes a neurologist and therapists who specialise in movement disorders is recommended for the management of the complex MSA symptoms. The appropriate multidisciplinary team members should be seen from the time the diagnosis of MSA is received. […] A nurse with specialist training in MSA can provide education and support to the person with MSA and their caregiver. This may include: monitoring the effects of changes to medications as recommended by the neurologist and liaising with the neurologist, providing education and support around the recommended medications and the assist with the minimisation of side effects, providing individualised education for the person with MSA and their caregivers to ensure optimal understanding and management of the various MSA symptoms as the condition progresses, arranging referrals to other relevant health professionals within the specialist team.
  • #15 Multiple System Atrophy
    https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/msa.html
    Multiple system atrophy (MSA) is a slowly progressive neurodegenerative disease that afflicts approximately 25,000-75,000 Americans, with approximately 10,000 new cases diagnosed each year. […] While there is no cure for MSA, we work to control and alleviate symptoms of the disease to avoid complications and to improve the quality of patients’ lives. […] At UC San Diego Health, we use a multidisciplinary management approach for MSA. Along with a movement disorder specialist, a urologist, physical, speech, and occupational therapists and dietitians are involved in the management plan. […] Physical therapy is also very important to prevent falls and maintain and improve gait. Our physical therapist helps determine the best walking aid when needed. A cane or a weighted walker with laser light may be very useful when there is freezing. Special programs like LSVT-BIG, an exercise treatment program for people with Parkinson’s disease, can significantly improve motor symptoms.
  • #16 Multiple system atrophy | Monash Health
    https://monashhealth.org/services/movement-disorders-program/understanding-movement-disorders/multiple-system-atrophy/
    Multiple System Atrophy (MSA) is a rare and progressive neurodegenerative disorder. […] Although theres currently no cure for MSA, a range of drugs, treatments and therapies are available to manage the symptoms. […] The management of MSA is focused on optimizing quality of life, relieving symptoms and assisting patients with their activities of daily living (ADL). […] A multidisciplinary team that includes a neurologist and therapists who specialise in movement disorders is recommended for the management of the complex MSA symptoms. The appropriate multidisciplinary team members should be seen from the time the diagnosis of MSA is received. […] A nurse with specialist training in MSA can provide education and support to the person with MSA and their caregiver. This may include: monitoring the effects of changes to medications as recommended by the neurologist and liaising with the neurologist, providing education and support around the recommended medications and the assist with the minimisation of side effects, providing individualised education for the person with MSA and their caregivers to ensure optimal understanding and management of the various MSA symptoms as the condition progresses, arranging referrals to other relevant health professionals within the specialist team.
  • #17 The Challenge of MSA: Multiple System Atrophy
    https://rn-journal.com/journal-of-nursing/the-challenge-of-msa
    A comprehensive nursing assessment is key to identifying causative factors and instituting specific measures to remedy orthostatic hypotension (OH) e.g. timing of medications, particularly anti-hypertensives and antidepressants. […] The role of the nursing is critical in maintaining the patients quality of life, potentiating capabilities and preventing complications. […] Orthostatic hypotension is managed primarily by patient teaching and medications. Patient compliance is the way to success. […] Patients need continuing support and encouragement to adapt these new interventions into their daily routine. […] The medical interdisciplinary health team plays a critical role in assisting the patient and caregivers in the discussion of end-of-life issues. […] The primary care giver is the spouse in the vast majority of cases and needs to be aware of what is driving their choices.
  • #18 The Challenge of MSA: Multiple System Atrophy
    https://rn-journal.com/journal-of-nursing/the-challenge-of-msa
    A comprehensive nursing assessment is key to identifying causative factors and instituting specific measures to remedy orthostatic hypotension (OH) e.g. timing of medications, particularly anti-hypertensives and antidepressants. […] The role of the nursing is critical in maintaining the patients quality of life, potentiating capabilities and preventing complications. […] Orthostatic hypotension is managed primarily by patient teaching and medications. Patient compliance is the way to success. […] Patients need continuing support and encouragement to adapt these new interventions into their daily routine. […] The medical interdisciplinary health team plays a critical role in assisting the patient and caregivers in the discussion of end-of-life issues. […] The primary care giver is the spouse in the vast majority of cases and needs to be aware of what is driving their choices.
  • #19 Palliative Care Discussions in Multiple System Atrophy: A Retrospective Review | Canadian Journal of Neurological Sciences | Cambridge Core
    https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/palliative-care-discussions-in-multiple-system-atrophy-a-retrospective-review/4F1398B9A85ECA7588455DCAD237C6B3
    Objective: Multiple system atrophy (MSA) is an incurable neurodegenerative illness in which progressive symptoms, including stridor and acute laryngeal obstruction, occur. Advanced care planning and palliative care discussions in people living with MSA are not well defined. The aim of the present study is to evaluate advanced care planning and current practices in palliative care in MSA to identify opportunities for improving quality of care. […] There is no standard approach to advanced care planning and palliative care discussions in people living with MSA. We propose a framework to guide advanced care planning and palliative care discussions in MSA. […] Early and effective advance care and end-of-life planning discussions are therefore essential for effective palliative care in MSA. Our chart review shows clear gaps in the current approach to advance care planning, goals of care and palliative care discussions in patients living with MSA, at least at our centre.
  • #20 Multiple System Atrophy (MSA) – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version
    https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/autonomic-nervous-system-disorders/multiple-system-atrophy-msa
    Multiple system atrophy is a progressive, fatal disorder that causes symptoms resembling those of Parkinson disease (parkinsonism), loss of coordination, and malfunction of internal body processes (such as blood pressure and bladder control). […] Simple measures and medications can help lessen symptoms, but the disorder is progressive and ultimately fatal. […] Many people are confined to a wheelchair or are otherwise severely disabled within 5 years after symptoms begin. The disorder results in death usually about 9 to 10 years after symptoms begin. […] No treatment can cure multiple system atrophy. However, a combination of simple measures and medications may help relieve symptoms. […] Physical, occupational, and speech therapists can teach people ways to compensate when walking, doing daily activities, and speaking become difficult. Specialists in palliative medicine focus on relieving pain and treating symptoms and helps people deal with end-of-life issues. Social workers can help people find support groups and, when symptoms become disabling, home health care or hospice services. […] Because the disorder is progressive and ultimately fatal, people should prepare advance directives soon after the disorder is diagnosed. These directives should indicate what kind of medical care people want at the end of life.
  • #21 Multiple System Atrophy (MSA) – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version
    https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/autonomic-nervous-system-disorders/multiple-system-atrophy-msa
    Multiple system atrophy is a progressive, fatal disorder that causes symptoms resembling those of Parkinson disease (parkinsonism), loss of coordination, and malfunction of internal body processes (such as blood pressure and bladder control). […] Simple measures and medications can help lessen symptoms, but the disorder is progressive and ultimately fatal. […] Many people are confined to a wheelchair or are otherwise severely disabled within 5 years after symptoms begin. The disorder results in death usually about 9 to 10 years after symptoms begin. […] No treatment can cure multiple system atrophy. However, a combination of simple measures and medications may help relieve symptoms. […] Physical, occupational, and speech therapists can teach people ways to compensate when walking, doing daily activities, and speaking become difficult. Specialists in palliative medicine focus on relieving pain and treating symptoms and helps people deal with end-of-life issues. Social workers can help people find support groups and, when symptoms become disabling, home health care or hospice services. […] Because the disorder is progressive and ultimately fatal, people should prepare advance directives soon after the disorder is diagnosed. These directives should indicate what kind of medical care people want at the end of life.
  • #22 Palliative Care Discussions in Multiple System Atrophy: A Retrospective Review | Canadian Journal of Neurological Sciences | Cambridge Core
    https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/palliative-care-discussions-in-multiple-system-atrophy-a-retrospective-review/4F1398B9A85ECA7588455DCAD237C6B3
    Objective: Multiple system atrophy (MSA) is an incurable neurodegenerative illness in which progressive symptoms, including stridor and acute laryngeal obstruction, occur. Advanced care planning and palliative care discussions in people living with MSA are not well defined. The aim of the present study is to evaluate advanced care planning and current practices in palliative care in MSA to identify opportunities for improving quality of care. […] There is no standard approach to advanced care planning and palliative care discussions in people living with MSA. We propose a framework to guide advanced care planning and palliative care discussions in MSA. […] Early and effective advance care and end-of-life planning discussions are therefore essential for effective palliative care in MSA. Our chart review shows clear gaps in the current approach to advance care planning, goals of care and palliative care discussions in patients living with MSA, at least at our centre.
  • #23 Multiple System Atrophy: Symptoms & Treatment | Massachusetts General Hospital
    https://www.massgeneral.org/neurology/treatments-and-services/multiple-system-atrophy
    Multiple system atrophy (MSA) is a rare, progressive neurological condition that affects the autonomic nervous system, which controls automatic functions like blood pressure, heartbeat, and the bladder. […] Treatment for MSA focuses on improving your quality of life and managing symptoms effectively. With the right care, therapies, and support, you can continue to live meaningfully and maintain independence for as long as possible. […] Caring for a loved one with MSA can be challenging, but it is also an opportunity to provide love and comfort. If someone you know is diagnosed with multiple system atrophy, here are ways you can support them: […] Offer emotional support: MSA can bring emotional and psychological challenges. Be patient and understanding with your loved one. Encourage your loved one to use tools like canes or wheelchairs without shame—these can help them maintain independence and safety.
  • #24 Multiple system atrophy: Symptoms and treatment
    https://www.medicalnewstoday.com/articles/multiple-system-atrophy
    Multiple system atrophy (MSA) is a progressive neurological condition that affects movements and involuntary functions, such as blood pressure and digestion. […] MSA onset typically occurs when a person is in their 50s, advancing quickly over the following 5-10 years. In its early stages, doctors may prescribe the Parkinson’s disease drug levodopa, but the benefits are usually temporary. However, medications are available to ease symptoms, such as sleep and bladder difficulties. […] There is no cure for MSA, and medications do not slow or stop the progression of the condition. However, doctors may recommend the following treatments to reduce symptoms. […] Medications for MSA include: Levodopa: This Parkinson’s disease drug may help improve movement symptoms, but the benefits are often temporary.
  • #25 Multiple System Atrophy Treatment & Management: Approach Considerations, Nonpharmacologic Treatment of Hypotension and Hypertension
    https://emedicine.medscape.com/article/1154583-treatment
    The cause of multiple system atrophy (MSA) remains unknown, and no current therapy can reverse or halt progression of the disease. The extrapyramidal and cerebellar aspects of the disease are debilitating and difficult to treat. […] Drug therapy is directed mainly toward alleviation of symptoms of the movement disorder and orthostatic hypotension. Urinary incontinence, constipation, erectile dysfunction, and supine hypertension can also be addressed through pharmacologic therapy. […] Physical therapists, occupational therapists, speech therapists, and social workers can offer considerable practical help. […] Exercise of muscles of the lower extremities and abdomen, water aerobics at hip level (not swimming, as it causes polyuria), and postural training, in combination with drug therapy, are useful.
  • #26 Multiple system atrophy: Symptoms and treatment
    https://www.medicalnewstoday.com/articles/multiple-system-atrophy
    Multiple system atrophy (MSA) is a progressive neurological condition that affects movements and involuntary functions, such as blood pressure and digestion. […] MSA onset typically occurs when a person is in their 50s, advancing quickly over the following 5-10 years. In its early stages, doctors may prescribe the Parkinson’s disease drug levodopa, but the benefits are usually temporary. However, medications are available to ease symptoms, such as sleep and bladder difficulties. […] There is no cure for MSA, and medications do not slow or stop the progression of the condition. However, doctors may recommend the following treatments to reduce symptoms. […] Medications for MSA include: Levodopa: This Parkinson’s disease drug may help improve movement symptoms, but the benefits are often temporary.
  • #27
    https://movementdisorders.ufhealth.org/for-patients/movement-disorder-information/multiple-system-atrophy-primer-many-faces-same-disease/
    MSA, or Multiple System Atrophy, is a form of parkinsonism with many features that overlap with those of classic Parkinson disease and make it confusing to diagnose clinically. […] Referral to a movement disorders neurologist is recommended for proper diagnosis and symptom management. […] Treatment of MSA remains largely supportive. About 30-60% of patients respond to typical Parkinsons medications such as carbidopa/levodopa (Sinemet), and dose trial of up to 1 gram/day of levodopa for a few months is recommended. […] Physical and occupational therapies for gait and balance, range of motion and mobility, and help with activities of daily living are critical and require staff familiar with Parkinsonian patient needs. […] As a multisystem disorder Multiple System Atrophy has many faces and results in varied symptoms that require an interdisciplinary approach. Patient care begins with proper diagnosis and then focused, and even specialized, treatment of the various symptoms of MSA.
  • #28 Multiple System Atrophy-D Maybe Something Altogether–Different
    https://practicalneurology.com/articles/2018-mar-apr/multiple-system-atrophy-d-maybe-something-altogetherdifferent
    For establishing orthostatic hypotension to diagnose probable MSA, the 2008 consensus criteria give a definition of a drop in systolic blood pressure by 30 mm Hg or more, or a drop in diastolic blood pressure by 15 mm Hg or more after 3 minutes. […] Medications to treat orthostatic hypotension, including fludrocortisone, midodrine, pyridostigmine, and droxidopa, have targeted increasing blood volume or peripheral vascular tone. […] Continuous positive airway pressure (CPAP) is the first-line treatment for stridor. […] First-line treatment for bladder dysfunction is usually anticholinergics, but a newer class of 3-adrenergic agonists are being utilized as they have little to no central cognitive impact. […] As with most neurodegenerative diseases, we are at a fork in the road, with one path leading toward disease-modifying treatments and the other to symptomatic management. […] Although it is likely that MSA and PD will always be intertwined, MSA is emerging as a distinct pathology.
  • #29 Multiple System Atrophy: Causes and Treatment | Doctor
    https://patient.info/doctor/multiple-system-atrophy
    MSA is characterised by widespread glial cytoplasmic inclusions (GCIs) which are the hallmark of the disease. […] Currently, no therapy can reverse or halt progression of the disease. Management is symptomatic and targets Parkinsonism and autonomic failure. […] Management of patients with MSA will include: Management of postural hypotension: see the separate Hypotension article. Midodrine has been shown to have been of benefit in MSA. […] Management of constipation, urinary incontinence and falls. Desmopressin may help as nocturnal polyuria is common in MSA. […] Physical activity, especially in water, to prevent physical deconditioning. […] Speech therapy which may be required to help with speech and swallowing. […] The extrapyramidal and cerebellar aspects of the disease are debilitating and difficult to treat. Orthostatic hypotension is associated with reduced physical activity (and the consequent deconditioning and problems associated with this) so management of this is a particularly important aspect of patient care.
  • #30 Multiple System Atrophy-D Maybe Something Altogether–Different
    https://practicalneurology.com/articles/2018-mar-apr/multiple-system-atrophy-d-maybe-something-altogetherdifferent
    For establishing orthostatic hypotension to diagnose probable MSA, the 2008 consensus criteria give a definition of a drop in systolic blood pressure by 30 mm Hg or more, or a drop in diastolic blood pressure by 15 mm Hg or more after 3 minutes. […] Medications to treat orthostatic hypotension, including fludrocortisone, midodrine, pyridostigmine, and droxidopa, have targeted increasing blood volume or peripheral vascular tone. […] Continuous positive airway pressure (CPAP) is the first-line treatment for stridor. […] First-line treatment for bladder dysfunction is usually anticholinergics, but a newer class of 3-adrenergic agonists are being utilized as they have little to no central cognitive impact. […] As with most neurodegenerative diseases, we are at a fork in the road, with one path leading toward disease-modifying treatments and the other to symptomatic management. […] Although it is likely that MSA and PD will always be intertwined, MSA is emerging as a distinct pathology.
  • #31 Multiple System Atrophy (MSA) | Movement Disorders Clinic
    https://www.movementdisordersclinic.com/multiple-system-atrophy-msa/
    Some individuals with MSA may have significant difficulties with swallowing and may need a feeding tube or nutritional support. Speech therapy may be helpful in identifying strategies to address swallowing difficulties. […] The fainting and lightheadedness from orthostatic hypotension may be treated with simple interventions such as wearing compression stockings, adding extra salt and/or water to the diet, and avoiding heavy meals. The drugs fludrocortisone and midodrine sometimes are prescribed. […] Bladder control problems are treated according to the nature of the problem. Anticholinergic drugs, such as oxybutynin or tolteridine, may help reduce the sudden urge to urinate. […] Fixed abnormal muscle postures (dystonia) may be controlled with injections of botulinum toxin. […] Sleep problems such as REM sleep behavior disorder can be treated with medicines including clonazepam, melatonin, or some antidepressants. […] MSA tends to progress more rapidly than Parkinsons disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Some people with MSA may experience feelings of anxiety or depression.
  • #32 Multiple System Atrophy: Causes and Treatment | Doctor
    https://patient.info/doctor/multiple-system-atrophy
    MSA is characterised by widespread glial cytoplasmic inclusions (GCIs) which are the hallmark of the disease. […] Currently, no therapy can reverse or halt progression of the disease. Management is symptomatic and targets Parkinsonism and autonomic failure. […] Management of patients with MSA will include: Management of postural hypotension: see the separate Hypotension article. Midodrine has been shown to have been of benefit in MSA. […] Management of constipation, urinary incontinence and falls. Desmopressin may help as nocturnal polyuria is common in MSA. […] Physical activity, especially in water, to prevent physical deconditioning. […] Speech therapy which may be required to help with speech and swallowing. […] The extrapyramidal and cerebellar aspects of the disease are debilitating and difficult to treat. Orthostatic hypotension is associated with reduced physical activity (and the consequent deconditioning and problems associated with this) so management of this is a particularly important aspect of patient care.
  • #33 Multiple System Atrophy (MSA) | Movement Disorders Clinic
    https://www.movementdisordersclinic.com/multiple-system-atrophy-msa/
    Some individuals with MSA may have significant difficulties with swallowing and may need a feeding tube or nutritional support. Speech therapy may be helpful in identifying strategies to address swallowing difficulties. […] The fainting and lightheadedness from orthostatic hypotension may be treated with simple interventions such as wearing compression stockings, adding extra salt and/or water to the diet, and avoiding heavy meals. The drugs fludrocortisone and midodrine sometimes are prescribed. […] Bladder control problems are treated according to the nature of the problem. Anticholinergic drugs, such as oxybutynin or tolteridine, may help reduce the sudden urge to urinate. […] Fixed abnormal muscle postures (dystonia) may be controlled with injections of botulinum toxin. […] Sleep problems such as REM sleep behavior disorder can be treated with medicines including clonazepam, melatonin, or some antidepressants. […] MSA tends to progress more rapidly than Parkinsons disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Some people with MSA may experience feelings of anxiety or depression.
  • #34 Multiple System Atrophy (MSA) | Movement Disorders Clinic
    https://www.movementdisordersclinic.com/multiple-system-atrophy-msa/
    Some individuals with MSA may have significant difficulties with swallowing and may need a feeding tube or nutritional support. Speech therapy may be helpful in identifying strategies to address swallowing difficulties. […] The fainting and lightheadedness from orthostatic hypotension may be treated with simple interventions such as wearing compression stockings, adding extra salt and/or water to the diet, and avoiding heavy meals. The drugs fludrocortisone and midodrine sometimes are prescribed. […] Bladder control problems are treated according to the nature of the problem. Anticholinergic drugs, such as oxybutynin or tolteridine, may help reduce the sudden urge to urinate. […] Fixed abnormal muscle postures (dystonia) may be controlled with injections of botulinum toxin. […] Sleep problems such as REM sleep behavior disorder can be treated with medicines including clonazepam, melatonin, or some antidepressants. […] MSA tends to progress more rapidly than Parkinsons disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Some people with MSA may experience feelings of anxiety or depression.
  • #35 Multiple System Atrophy: Advances in Diagnosis and Therapy
    https://www.e-jmd.org/journal/view.php?doi=10.14802/jmd.22082
    The clinical diagnosis of MSA requires the presence of various combinations of AF and/or parkinsonism or cerebellar ataxia. […] In a recent report reviewing clinical symptoms before MSA diagnosis using a sizable medical database, hypotension, urinary disturbance, dizziness, and disequilibrium were more frequent. […] Patients with MSA treated with SSRIs showed a better prognosis than untreated patients. […] Further studies are needed to determine whether serotonin-targeted therapy alleviates several symptoms and modifies the disease course of MSA.
  • #36 What is Multiple System Atrophy (MSA): Symptoms and Diagnosis | Max Hospital
    https://www.maxhealthcare.in/blogs/what-is-multiple-system-atrophy
    Multiple system atrophy (MSA) remains incurable, but symptom management through multidisciplinary care involving specialists such as neurologists, cardiologists and urologists can significantly enhance quality of life. […] Physical therapy plays a vital role in managing Multiple System Atrophy (MSA) by preventing mobility and reducing fall risk. Tailored exercises focusing on balance, strength, and flexibility enable patients to maintain activity levels for an extended period. […] Patients struggling with speech, swallowing or daily activities benefit greatly from occupational and speech therapies. These specialists recommend assistive devices for simplifying tasks and enhancing communication skills. […] As multiple system atrophy (MSA) advances, patients often require increasingly comprehensive supportive care, incorporating mobility aids, respiratory devices and feeding tubes, with palliative care playing a crucial role in pain management and comfort. […] Increased awareness and medical advancement are necessary to improve diagnosis care for individuals with MSA.
  • #37 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    To date, there are no approved disease-modifying therapies for MSA. However, a broad spectrum of research approaches is currently in development for clinical trials, which could yield new opportunities in the treatment of this relentlessly progressive neurodegenerative disorder. […] The therapeutic management of MSA patients focuses on a multidisciplinary strategy of symptom control with the patient and quality of life at the center of interest. […] Evidence from open label trials and case reports suggests that parkinsonism as predominant motor feature in MSA may benefit from physiotherapy as coordination, balance, and gait impairment may be improved with intensive physiotherapy as well as with resistance training and challenge-oriented gait and balance training in degenerative cerebellar disorders.
  • #38 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    In case of regular falling injury, protective garments should be considered. […] Non-pharmacological treatment options include the use of custom-fitted compression stockings or elastic abdominal binders, raising the head of the bed by 20-45 when sleeping to increase intravasal volume and reduce hypotension in the morning, but also lifestyle changes such as an adequate intake of fluid and salt, avoiding exposure to hot, humid environments and performing physical activity programs with recumbent or sitting exercises. […] Patients may benefit from early support by a speech-language pathologist, which are of utmost importance in the multidisciplinary care of MSA patients. […] Although therapeutic symptomatic decisions in MSA are in most instances pragmatic without formal evidence from RCTs, there are symptomatic treatment options for motor symptoms, autonomic failure, and sleep disturbances available.
  • #39 Multiple System Atrophy Treatment & Management: Approach Considerations, Nonpharmacologic Treatment of Hypotension and Hypertension
    https://emedicine.medscape.com/article/1154583-treatment
    The cause of multiple system atrophy (MSA) remains unknown, and no current therapy can reverse or halt progression of the disease. The extrapyramidal and cerebellar aspects of the disease are debilitating and difficult to treat. […] Drug therapy is directed mainly toward alleviation of symptoms of the movement disorder and orthostatic hypotension. Urinary incontinence, constipation, erectile dysfunction, and supine hypertension can also be addressed through pharmacologic therapy. […] Physical therapists, occupational therapists, speech therapists, and social workers can offer considerable practical help. […] Exercise of muscles of the lower extremities and abdomen, water aerobics at hip level (not swimming, as it causes polyuria), and postural training, in combination with drug therapy, are useful.
  • #40 Multiple System Atrophy
    https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/msa.html
    Multiple system atrophy (MSA) is a slowly progressive neurodegenerative disease that afflicts approximately 25,000-75,000 Americans, with approximately 10,000 new cases diagnosed each year. […] While there is no cure for MSA, we work to control and alleviate symptoms of the disease to avoid complications and to improve the quality of patients’ lives. […] At UC San Diego Health, we use a multidisciplinary management approach for MSA. Along with a movement disorder specialist, a urologist, physical, speech, and occupational therapists and dietitians are involved in the management plan. […] Physical therapy is also very important to prevent falls and maintain and improve gait. Our physical therapist helps determine the best walking aid when needed. A cane or a weighted walker with laser light may be very useful when there is freezing. Special programs like LSVT-BIG, an exercise treatment program for people with Parkinson’s disease, can significantly improve motor symptoms.
  • #41 Multiple System Atrophy
    https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/msa.html
    Multiple system atrophy (MSA) is a slowly progressive neurodegenerative disease that afflicts approximately 25,000-75,000 Americans, with approximately 10,000 new cases diagnosed each year. […] While there is no cure for MSA, we work to control and alleviate symptoms of the disease to avoid complications and to improve the quality of patients’ lives. […] At UC San Diego Health, we use a multidisciplinary management approach for MSA. Along with a movement disorder specialist, a urologist, physical, speech, and occupational therapists and dietitians are involved in the management plan. […] Physical therapy is also very important to prevent falls and maintain and improve gait. Our physical therapist helps determine the best walking aid when needed. A cane or a weighted walker with laser light may be very useful when there is freezing. Special programs like LSVT-BIG, an exercise treatment program for people with Parkinson’s disease, can significantly improve motor symptoms.
  • #42 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    Sometimes forgotten but of central importance are non-pharmacological treatments starting from simple tips to avoid OH symptoms (including lifestyle changes, compression stockings, or head up tilt while sleeping), to regular therapies including exercise and medical rehabilitation to keep the current mobile state and avoid falls. […] Empirically, patients should be provided access to rehabilitation programs regularly, e.g. at least once a year.
  • #43 Multiple System Atrophy
    https://neurosciences.ucsd.edu/centers-programs/movement-disorders/community/disease-overview/msa.html
    Occupational therapists help improve the patient’s performance of daily living activities, which promotes longer independence and better quality of life. […] MSA is a disabling disease in its advanced stage. Social support through local, regional, and national associations can play an integral role in improving the lives of patients, family members, and caregivers.
  • #44
    https://link.springer.com/article/10.1007/s12311-022-01411-6
    Patients may benefit from early support by a speech-language pathologist, which are of utmost importance in the multidisciplinary care of MSA patients. […] As the effect of symptomatic pharmacological therapy is mostly limited, exercise and medical rehabilitation play important roles in improving symptoms and patients quality of life, even though strong evidence from RCTs is limited. […] Nevertheless, a randomized-controlled trial of patients with mild to moderate MSA obtaining occupational therapy showed significant improvement of motor function and activities of daily life. […] Furthermore, an improvement in health-related quality of life was associated with the receipt of occupational therapy supporting importance of non-pharmacological treatment approaches in neurodegenerative disorders like MSA with versatile impacts on everyday life of patients.
  • #45
    https://link.springer.com/article/10.1007/s12311-022-01411-6
    Patients may benefit from early support by a speech-language pathologist, which are of utmost importance in the multidisciplinary care of MSA patients. […] As the effect of symptomatic pharmacological therapy is mostly limited, exercise and medical rehabilitation play important roles in improving symptoms and patients quality of life, even though strong evidence from RCTs is limited. […] Nevertheless, a randomized-controlled trial of patients with mild to moderate MSA obtaining occupational therapy showed significant improvement of motor function and activities of daily life. […] Furthermore, an improvement in health-related quality of life was associated with the receipt of occupational therapy supporting importance of non-pharmacological treatment approaches in neurodegenerative disorders like MSA with versatile impacts on everyday life of patients.
  • #46 Multiple system atrophy | Monash Health
    https://monashhealth.org/services/movement-disorders-program/understanding-movement-disorders/multiple-system-atrophy/
    A physiotherapist specialised in movement disorders such as MSA can assess walking and balance problems and recommend ways to improve mobility and safety. […] An occupational therapist specialised in movement disorders such as MSA can assess the person at home and suggest ways to improve safety, both inside and outside the home. […] A speech pathologist specialised in movement disorders such as MSA can assess speech and swallowing difficulties and teach strategies to improve them. […] A dietitian specialised in movement disorders such as MSA can assess the persons diet and provide them with suggested menus to improve any dietary problems they may have. […] A social worker specialised in movement disorders such as MSA can assist the person with MSA, their caregiver and family negotiate the challenges faced across the life time of the persons condition. […] Social workers are specifically trained to support you in understanding how best to manage such symptoms.
  • #47 Multiple system atrophy | Handouts | MedLink Neurology
    https://www.medlink.com/handouts/multiple-system-atrophy
    Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the central nervous system (which controls how a person moves), and the autonomic nervous system, which controls involuntary functions such as blood pressure or digestion. […] MSA tends to progress more rapidly than Parkinson’s disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Currently, there are no treatments to stop or slow the progression of MSA, and there is no cure. However, there are treatments to help people cope with the symptoms. […] Physical therapy helps maintain mobility, reduce contractures, and decrease muscle spasms and abnormal posture. […] Occupational therapists can help with home safety and learning new ways to address activities of daily living, such as dressing and eating.
  • #48 Multiple System Atrophy Treatment | University of Utah Health
    https://healthcare.utah.edu/neurosciences/neurology/movement-disorders/multiple-system-atrophy
    Multiple system atrophy (MSA) is a rare neurological disorder. It causes nerve cells in parts of your brain to gradually decline. Over time, this damage affects your bodys involuntary processes. […] There is no cure for multiple system atrophy. MSA treatment focuses on managing symptoms. A multispecialty care team approach is best because MSA symptoms vary. […] Treatment needs will change as your MSA progresses. Palliative care can help both you and your caregivers. […] It is important to work with a physical therapist. They will help you prevent falls and improve mobility. They will also teach you how to use a gait aid like a cane or walker if necessary. […] An occupational therapist will teach you tips on how to manage daily activities like eating or bathing. […] Working with a speech therapist can help you with slurred speech or swallowing difficulties.
  • #49 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    In case of regular falling injury, protective garments should be considered. […] Non-pharmacological treatment options include the use of custom-fitted compression stockings or elastic abdominal binders, raising the head of the bed by 20-45 when sleeping to increase intravasal volume and reduce hypotension in the morning, but also lifestyle changes such as an adequate intake of fluid and salt, avoiding exposure to hot, humid environments and performing physical activity programs with recumbent or sitting exercises. […] Patients may benefit from early support by a speech-language pathologist, which are of utmost importance in the multidisciplinary care of MSA patients. […] Although therapeutic symptomatic decisions in MSA are in most instances pragmatic without formal evidence from RCTs, there are symptomatic treatment options for motor symptoms, autonomic failure, and sleep disturbances available.
  • #50 Multiple system atrophy | Monash Health
    https://monashhealth.org/services/movement-disorders-program/understanding-movement-disorders/multiple-system-atrophy/
    A physiotherapist specialised in movement disorders such as MSA can assess walking and balance problems and recommend ways to improve mobility and safety. […] An occupational therapist specialised in movement disorders such as MSA can assess the person at home and suggest ways to improve safety, both inside and outside the home. […] A speech pathologist specialised in movement disorders such as MSA can assess speech and swallowing difficulties and teach strategies to improve them. […] A dietitian specialised in movement disorders such as MSA can assess the persons diet and provide them with suggested menus to improve any dietary problems they may have. […] A social worker specialised in movement disorders such as MSA can assist the person with MSA, their caregiver and family negotiate the challenges faced across the life time of the persons condition. […] Social workers are specifically trained to support you in understanding how best to manage such symptoms.
  • #51 Multiple system atrophy – Diagnosis and treatment – Mayo Clinic
    https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/diagnosis-treatment/drc-20356157
    Our caring team of Mayo Clinic experts can help you with your Multiple system atrophy-related health concerns […] Treatment for multiple system atrophy (MSA) involves managing your symptoms. There’s no cure for MSA. Managing the disease can make you as comfortable as possible and help you maintain your body functions. […] A physical therapist can help you maintain as much of your movement and strength as possible as the disease gets worse. […] A speech-language pathologist can help you improve or maintain your speech. […] If you have trouble swallowing, try eating softer foods. If swallowing or breathing symptoms become worse, you might need surgery to insert a feeding or breathing tube. A gastrostomy tube delivers food directly into your stomach. […] If you have trouble with bladder control, medicines can help in the earlier stages. But as MSA gets worse, you may need to have a soft tube inserted to drain your bladder. The soft tube is known as a catheter. […] Steps to manage swallowing and breathing symptoms. […] Bladder care. […] Therapy.
  • #52 Multiple system atrophy (MSA)
    https://www.nhs.uk/conditions/multiple-system-atrophy/
    There’s currently no cure for multiple system atrophy (MSA) and no treatments that can stop it getting worse. […] But treatment and support is available to manage any symptoms and help you stay comfortable and independent for as long as possible. […] You’ll be supported by a team of healthcare professionals who will help to create a care plan. […] For example, you may be offered medicines for sleep problems or dizziness, and speech therapy can help with swallowing and communication problems. […] Physiotherapy and occupational therapy may also be recommended. This is to help you maintain fitness and muscle strength and make your daily life easier. […] Every person’s needs will be different depending on their symptoms. […] Most people eventually need some help and support with their daily living.
  • #53 Multiple System Atrophy (MSA) – Brain Support Network
    https://www.brainsupportnetwork.org/education/multiple-system-atrophy/
    Multiple System Atrophy is a rare neurological disorder. It falls under the atypical parkinsonism umbrella. It is the third most common of the four atypical parkinsonism disorders. MSA treatments are few. All treatments are focused on symptoms. Parkinsonism may be treated by levodopa. (Some with MSA do have a response to this medication for a short period of time.) Orthostatic hypotension may be treated by a variety of medications. Urinary incontinence can be treated with medication, botox injections, catheters, or adult briefs. Therapy is worth trying: physical therapy, occupational therapy, and speech therapy. In our local support group, we have seen a few people with MSA benefit from two speech therapy programs designed for Parkinson’s Disease SPEAK OUT! (by the Parkinson Voice Project) and LSVT-LOUD (by LSVT).
  • #54 The Challenge of MSA: Multiple System Atrophy
    https://rn-journal.com/journal-of-nursing/the-challenge-of-msa
    Increased respiratory secretions and the inability to cough effectively required frequent suctioning. […] Mouth care before meals and at bedtime lessens the incidence of pneumonia. […] Daily exercises will maximize and maintain the patients flexibility, strength, balance and coordination skills. […] Assistive devices e.g. hand rail, tub bar, shower chair, allow a patient to retain independence in ADLs. […] A speech therapists evaluation will suggest appropriate exercises and devices that facilitate communication.
  • #55 Multiple system atrophy – Diagnosis and treatment – Mayo Clinic
    https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/diagnosis-treatment/drc-20356157
    Our caring team of Mayo Clinic experts can help you with your Multiple system atrophy-related health concerns […] Treatment for multiple system atrophy (MSA) involves managing your symptoms. There’s no cure for MSA. Managing the disease can make you as comfortable as possible and help you maintain your body functions. […] A physical therapist can help you maintain as much of your movement and strength as possible as the disease gets worse. […] A speech-language pathologist can help you improve or maintain your speech. […] If you have trouble swallowing, try eating softer foods. If swallowing or breathing symptoms become worse, you might need surgery to insert a feeding or breathing tube. A gastrostomy tube delivers food directly into your stomach. […] If you have trouble with bladder control, medicines can help in the earlier stages. But as MSA gets worse, you may need to have a soft tube inserted to drain your bladder. The soft tube is known as a catheter. […] Steps to manage swallowing and breathing symptoms. […] Bladder care. […] Therapy.
  • #56 Multiple System Atrophy Treatment & Management: Approach Considerations, Nonpharmacologic Treatment of Hypotension and Hypertension
    https://emedicine.medscape.com/article/1154583-treatment
    Management of orthostatic hypotension is one of the major tasks in the treatment of patients with MSA. […] Increased salt and fluid intake maintains plasma volume. […] Small, frequent meals may help patients for whom postprandial hypotension is a significant problem. […] The management of patients with orthostatic hypotension and supine hypertension can be challenging, but adequate BP control is often achieved with the following treatment strategy: Use of over-the-counter medication with pressor effects, avoidance of fluid intake at bedtime, and raising the head of the bed 6-9 inches.
  • #57 The Challenge of MSA: Multiple System Atrophy
    https://rn-journal.com/journal-of-nursing/the-challenge-of-msa
    A comprehensive nursing assessment is key to identifying causative factors and instituting specific measures to remedy orthostatic hypotension (OH) e.g. timing of medications, particularly anti-hypertensives and antidepressants. […] The role of the nursing is critical in maintaining the patients quality of life, potentiating capabilities and preventing complications. […] Orthostatic hypotension is managed primarily by patient teaching and medications. Patient compliance is the way to success. […] Patients need continuing support and encouragement to adapt these new interventions into their daily routine. […] The medical interdisciplinary health team plays a critical role in assisting the patient and caregivers in the discussion of end-of-life issues. […] The primary care giver is the spouse in the vast majority of cases and needs to be aware of what is driving their choices.
  • #58 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    In case of regular falling injury, protective garments should be considered. […] Non-pharmacological treatment options include the use of custom-fitted compression stockings or elastic abdominal binders, raising the head of the bed by 20-45 when sleeping to increase intravasal volume and reduce hypotension in the morning, but also lifestyle changes such as an adequate intake of fluid and salt, avoiding exposure to hot, humid environments and performing physical activity programs with recumbent or sitting exercises. […] Patients may benefit from early support by a speech-language pathologist, which are of utmost importance in the multidisciplinary care of MSA patients. […] Although therapeutic symptomatic decisions in MSA are in most instances pragmatic without formal evidence from RCTs, there are symptomatic treatment options for motor symptoms, autonomic failure, and sleep disturbances available.
  • #59 Multiple System Atrophy Treatment & Management: Approach Considerations, Nonpharmacologic Treatment of Hypotension and Hypertension
    https://emedicine.medscape.com/article/1154583-treatment
    Management of orthostatic hypotension is one of the major tasks in the treatment of patients with MSA. […] Increased salt and fluid intake maintains plasma volume. […] Small, frequent meals may help patients for whom postprandial hypotension is a significant problem. […] The management of patients with orthostatic hypotension and supine hypertension can be challenging, but adequate BP control is often achieved with the following treatment strategy: Use of over-the-counter medication with pressor effects, avoidance of fluid intake at bedtime, and raising the head of the bed 6-9 inches.
  • #60 Multiple System Atrophy Treatment & Management: Approach Considerations, Nonpharmacologic Treatment of Hypotension and Hypertension
    https://emedicine.medscape.com/article/1154583-treatment
    Management of orthostatic hypotension is one of the major tasks in the treatment of patients with MSA. […] Increased salt and fluid intake maintains plasma volume. […] Small, frequent meals may help patients for whom postprandial hypotension is a significant problem. […] The management of patients with orthostatic hypotension and supine hypertension can be challenging, but adequate BP control is often achieved with the following treatment strategy: Use of over-the-counter medication with pressor effects, avoidance of fluid intake at bedtime, and raising the head of the bed 6-9 inches.
  • #61 Multiple System Atrophy Treatment & Management: Approach Considerations, Nonpharmacologic Treatment of Hypotension and Hypertension
    https://emedicine.medscape.com/article/1154583-treatment
    Management of orthostatic hypotension is one of the major tasks in the treatment of patients with MSA. […] Increased salt and fluid intake maintains plasma volume. […] Small, frequent meals may help patients for whom postprandial hypotension is a significant problem. […] The management of patients with orthostatic hypotension and supine hypertension can be challenging, but adequate BP control is often achieved with the following treatment strategy: Use of over-the-counter medication with pressor effects, avoidance of fluid intake at bedtime, and raising the head of the bed 6-9 inches.
  • #62 Multiple System Atrophy (MSA) | Movement Disorders Clinic
    https://www.movementdisordersclinic.com/multiple-system-atrophy-msa/
    Some individuals with MSA may have significant difficulties with swallowing and may need a feeding tube or nutritional support. Speech therapy may be helpful in identifying strategies to address swallowing difficulties. […] The fainting and lightheadedness from orthostatic hypotension may be treated with simple interventions such as wearing compression stockings, adding extra salt and/or water to the diet, and avoiding heavy meals. The drugs fludrocortisone and midodrine sometimes are prescribed. […] Bladder control problems are treated according to the nature of the problem. Anticholinergic drugs, such as oxybutynin or tolteridine, may help reduce the sudden urge to urinate. […] Fixed abnormal muscle postures (dystonia) may be controlled with injections of botulinum toxin. […] Sleep problems such as REM sleep behavior disorder can be treated with medicines including clonazepam, melatonin, or some antidepressants. […] MSA tends to progress more rapidly than Parkinsons disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Some people with MSA may experience feelings of anxiety or depression.
  • #63 Multiple system atrophy – Diagnosis and treatment – Mayo Clinic
    https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/diagnosis-treatment/drc-20356157
    Our caring team of Mayo Clinic experts can help you with your Multiple system atrophy-related health concerns […] Treatment for multiple system atrophy (MSA) involves managing your symptoms. There’s no cure for MSA. Managing the disease can make you as comfortable as possible and help you maintain your body functions. […] A physical therapist can help you maintain as much of your movement and strength as possible as the disease gets worse. […] A speech-language pathologist can help you improve or maintain your speech. […] If you have trouble swallowing, try eating softer foods. If swallowing or breathing symptoms become worse, you might need surgery to insert a feeding or breathing tube. A gastrostomy tube delivers food directly into your stomach. […] If you have trouble with bladder control, medicines can help in the earlier stages. But as MSA gets worse, you may need to have a soft tube inserted to drain your bladder. The soft tube is known as a catheter. […] Steps to manage swallowing and breathing symptoms. […] Bladder care. […] Therapy.
  • #64 Multiple System Atrophy-D Maybe Something Altogether–Different
    https://practicalneurology.com/diseases-diagnoses/movement-disorders/multiple-system-atrophy-d-maybe-something-altogetherdifferent/30257/
    Many nonmotor symptoms seen in patients with PD are more clinically significant in patients with MSA. […] For establishing orthostatic hypotension to diagnose probable MSA, the 2008 consensus criteria give a definition of a drop in systolic blood pressure by 30 mm Hg or more, or a drop in diastolic blood pressure by 15 mm Hg or more after 3 minutes. […] Medications to treat orthostatic hypotension, including fludrocortisone, midodrine, pyridostigmine, and droxidopa, have targeted increasing blood volume or peripheral vascular tone. […] Many sleep disorders seen in patients with MSA are also seen in those with PD, with the exception of stridor, which is believed to be caused by atrophy of the posterior cricoarytenoid muscle resulting from lack of neural stimulation owing to depletion of serotonergic neurons in the raphe nucleus.
  • #65 Multiple System Atrophy-D Maybe Something Altogether–Different
    https://practicalneurology.com/diseases-diagnoses/movement-disorders/multiple-system-atrophy-d-maybe-something-altogetherdifferent/30257/
    Continuous positive airway pressure (CPAP) is the first-line treatment for stridor. […] Bladder dysfunction occurs in patients with both PD and MSA, and measurement of postvoid residuals (PVRs) can also help distinguish between PD and MSA. […] First-line treatment for bladder dysfunction is usually anticholinergics, but a newer class of 3-adrenergic agonists are being utilized as they have little to no central cognitive impact. […] As with most neurodegenerative diseases, we are at a fork in the road, with one path leading toward disease-modifying treatments and the other to symptomatic management. […] Although it is likely that MSA and PD will always be intertwined, MSA is emerging as a distinct pathology.
  • #66 The Challenge of MSA: Multiple System Atrophy
    https://rn-journal.com/journal-of-nursing/the-challenge-of-msa
    Increased respiratory secretions and the inability to cough effectively required frequent suctioning. […] Mouth care before meals and at bedtime lessens the incidence of pneumonia. […] Daily exercises will maximize and maintain the patients flexibility, strength, balance and coordination skills. […] Assistive devices e.g. hand rail, tub bar, shower chair, allow a patient to retain independence in ADLs. […] A speech therapists evaluation will suggest appropriate exercises and devices that facilitate communication.
  • #67 Multiple System Atrophy (MSA) | Movement Disorders Clinic
    https://www.movementdisordersclinic.com/multiple-system-atrophy-msa/
    Some individuals with MSA may have significant difficulties with swallowing and may need a feeding tube or nutritional support. Speech therapy may be helpful in identifying strategies to address swallowing difficulties. […] The fainting and lightheadedness from orthostatic hypotension may be treated with simple interventions such as wearing compression stockings, adding extra salt and/or water to the diet, and avoiding heavy meals. The drugs fludrocortisone and midodrine sometimes are prescribed. […] Bladder control problems are treated according to the nature of the problem. Anticholinergic drugs, such as oxybutynin or tolteridine, may help reduce the sudden urge to urinate. […] Fixed abnormal muscle postures (dystonia) may be controlled with injections of botulinum toxin. […] Sleep problems such as REM sleep behavior disorder can be treated with medicines including clonazepam, melatonin, or some antidepressants. […] MSA tends to progress more rapidly than Parkinsons disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Some people with MSA may experience feelings of anxiety or depression.
  • #68 Multiple System Atrophy (MSA) | Movement Disorders Clinic
    https://www.movementdisordersclinic.com/multiple-system-atrophy-msa/
    Some individuals with MSA may have significant difficulties with swallowing and may need a feeding tube or nutritional support. Speech therapy may be helpful in identifying strategies to address swallowing difficulties. […] The fainting and lightheadedness from orthostatic hypotension may be treated with simple interventions such as wearing compression stockings, adding extra salt and/or water to the diet, and avoiding heavy meals. The drugs fludrocortisone and midodrine sometimes are prescribed. […] Bladder control problems are treated according to the nature of the problem. Anticholinergic drugs, such as oxybutynin or tolteridine, may help reduce the sudden urge to urinate. […] Fixed abnormal muscle postures (dystonia) may be controlled with injections of botulinum toxin. […] Sleep problems such as REM sleep behavior disorder can be treated with medicines including clonazepam, melatonin, or some antidepressants. […] MSA tends to progress more rapidly than Parkinsons disease, and most people with MSA will require an aid for walking, such as a cane or walker, within a few years after symptoms begin. […] Some people with MSA may experience feelings of anxiety or depression.
  • #69 Multiple System Atrophy | Peter O’Donnell Jr. Brain Institute | Condition | UT Southwestern Medical Center
    https://utswmed.org/conditions-treatments/multiple-system-atrophy/
    As MSA advances, patients require help with mobility, blood pressure management, and bowel and bladder function. This loss of independence affects quality of life for patients and their family members. […] Our licensed clinical social workers (LCSWs) provide emotional support for patients and family members, in partnership with psychologists and psychiatrists as needed. Our LCSW team organizes patient and caregiver meetings and conducts conference calls with patients, caregivers, and clinicians between clinic visits.
  • #70 Home – Mission MSA
    https://missionmsa.org/
    Looking for clarity, I searched the internet and found [Mission MSA]. I learned how to cope with this incurable, progressive disease through [Mission MSA] conferences. […] For patients and caregivers battling a disease like MSA, organizations like [Mission MSA] make all the difference. Access to a community of other individuals facing the same diagnosis and the unknowns that come along with it, rely on each other to make it through. The resources available are invaluable in the navigation of the diagnosis and the diseases progression. […] This international group advocates for research, fundraising and provides support for patients and caregivers. This organization has given me hope. […] MSA Connect is an online community where those affected by MSA can gather, communicate, learn, and share research all in one easy-to-use space. Sign up today to join the conversation about multiple system atrophy and connect with a supportive network of individuals who know exactly what you are going through.
  • #71 Home – Mission MSA
    https://missionmsa.org/
    Looking for clarity, I searched the internet and found [Mission MSA]. I learned how to cope with this incurable, progressive disease through [Mission MSA] conferences. […] For patients and caregivers battling a disease like MSA, organizations like [Mission MSA] make all the difference. Access to a community of other individuals facing the same diagnosis and the unknowns that come along with it, rely on each other to make it through. The resources available are invaluable in the navigation of the diagnosis and the diseases progression. […] This international group advocates for research, fundraising and provides support for patients and caregivers. This organization has given me hope. […] MSA Connect is an online community where those affected by MSA can gather, communicate, learn, and share research all in one easy-to-use space. Sign up today to join the conversation about multiple system atrophy and connect with a supportive network of individuals who know exactly what you are going through.
  • #72
    https://link.springer.com/article/10.1007/s42087-024-00445-y
    Multiple systemic atrophy (MSA) is a progressive neurodegenerative disease, also characterized by autonomic failure in varying degrees of severity. Caregivers are central to the care and support of people with MSA. This paper aims to investigate and discuss: (a) the most common emotions and reactions among caregivers of MSA patients and how these affect their psychological well-being, (b) the change in caregivers quality of life during the progression of the patients disease, (c) what are the specific experiences and challenges related to communicating with patients, (d) new strategies and pathways of psychological and social support for caregivers. […] Caregivers of MSA patients report the difficulty of caring for their patients, not only from a physical/organizational point of view but especially from an emotional point of view, suggesting that caregivers are burdened by the expected future effects of neurological disease in general.
  • #73
    https://link.springer.com/article/10.1007/s42087-024-00445-y
    The burden of the caregiver can be understood as the effort or burden borne by a person who takes care of a chronically ill, elderly, and/or disabled family member. The caregivers burden is correlated to the well-being of the caregiver and his client. […] Caregivers who suffer the burden of care without adequate support are led to reduce the quality of care of their clients. […] It is known that the caregiver of a patient with neurodegenerative disorders has to take on many responsibilities, including coordinating care, administering medication, watching for falls, providing emotional support, encouraging the patient to take care of him/herself, and, often, even speaking up and speaking out on his/her behalf if the patient is unable and/or in distress, all while assisting the person in activities of daily living as the disease progresses.
  • #74
    https://link.springer.com/article/10.1007/s42087-024-00445-y
    The burden of the caregiver can be understood as the effort or burden borne by a person who takes care of a chronically ill, elderly, and/or disabled family member. The caregivers burden is correlated to the well-being of the caregiver and his client. […] Caregivers who suffer the burden of care without adequate support are led to reduce the quality of care of their clients. […] It is known that the caregiver of a patient with neurodegenerative disorders has to take on many responsibilities, including coordinating care, administering medication, watching for falls, providing emotional support, encouraging the patient to take care of him/herself, and, often, even speaking up and speaking out on his/her behalf if the patient is unable and/or in distress, all while assisting the person in activities of daily living as the disease progresses.
  • #75
    https://link.springer.com/article/10.1007/s42087-024-00445-y
    The burden of the caregiver can be understood as the effort or burden borne by a person who takes care of a chronically ill, elderly, and/or disabled family member. The caregivers burden is correlated to the well-being of the caregiver and his client. […] Caregivers who suffer the burden of care without adequate support are led to reduce the quality of care of their clients. […] It is known that the caregiver of a patient with neurodegenerative disorders has to take on many responsibilities, including coordinating care, administering medication, watching for falls, providing emotional support, encouraging the patient to take care of him/herself, and, often, even speaking up and speaking out on his/her behalf if the patient is unable and/or in distress, all while assisting the person in activities of daily living as the disease progresses.
  • #76
    https://link.springer.com/article/10.1007/s42087-024-00445-y
    To date, few studies specifically addressed the caregivers burden of patients with MSA. […] The results emerging from our study are in line with the few data previously reported on Multiple System Atrophy caregivers experiences. […] According to the literature on MSA diseases, there are at least four reasons why caregivers prefer to take care of their loved ones suffering from illness on their own: the perception of poor quality of nursing home care, the excessive costs of both outpatient and inpatient services, the patients desire to stay at home and finally the patients preference to receive care from a family member or known person. […] Thus, the caregiver needs support in managing stress, and coping with emotional distress and needs information on social support programs and education.
  • #77 Multiple System Atrophy: Symptoms & Treatment | Massachusetts General Hospital
    https://www.massgeneral.org/neurology/treatments-and-services/multiple-system-atrophy
    Multiple system atrophy (MSA) is a rare, progressive neurological condition that affects the autonomic nervous system, which controls automatic functions like blood pressure, heartbeat, and the bladder. […] Treatment for MSA focuses on improving your quality of life and managing symptoms effectively. With the right care, therapies, and support, you can continue to live meaningfully and maintain independence for as long as possible. […] Caring for a loved one with MSA can be challenging, but it is also an opportunity to provide love and comfort. If someone you know is diagnosed with multiple system atrophy, here are ways you can support them: […] Offer emotional support: MSA can bring emotional and psychological challenges. Be patient and understanding with your loved one. Encourage your loved one to use tools like canes or wheelchairs without shame—these can help them maintain independence and safety.
  • #78 Multiple System Atrophy: Symptoms & Treatment | Massachusetts General Hospital
    https://www.massgeneral.org/neurology/treatments-and-services/multiple-system-atrophy
    Go at their pace: Activities like walking, speaking, and even eating may become difficult for many people with multiple system atrophy. Allow them time and space to focus without feeling rushed. Your patience helps them feel valued and included. […] Help them with chores: Chores like cleaning, cooking, or reaching high or low objects can be difficult for people with MSA. Offering help with these tasks can make a big difference. […] Keep them connected: MSA can feel isolating, especially as mobility becomes limited. Help your loved one stay social by hosting visitors, arranging outings, or introducing them to technology like video calls. […] Take care of yourself: Helping to care for a patient with MSA is a marathon not a sprint. Your loved one with MSA will need you to pace yourself and get help when you can, so you can be there for him or her over the long term.
  • #79 Multiple System Atrophy Care or MSA Care – FCP Live-In
    https://www.liveinhomecare.com/care/multiple-system-atrophy-care-or-msa-care-caregiver-in-home-home-care-live-in-services-agency-solutions/
    Hiring an in-home live-in caregiver for someone with Multiple System Atrophy (MSA) can offer a range of significant benefits. MSA is a progressive neurodegenerative condition that can lead to various physical and autonomic difficulties, and having a dedicated live-in caregiver can greatly improve the individuals quality of life and provide peace of mind for both the person with MSA and their family. […] In-home care can significantly enhance the well-being of individuals with MSA and provide much-needed support and assistance to their families. They can also offer flexibility in care plans to accommodate changes in the persons condition. FCP Live-In caregivers can play a crucial role in enhancing the quality of life for individuals with MSA and supporting their families in managing the challenges of the condition.
  • #80 Multiple System Atrophy Care or MSA Care – FCP Live-In
    https://www.liveinhomecare.com/care/multiple-system-atrophy-care-or-msa-care-caregiver-in-home-home-care-live-in-services-agency-solutions/
    Hiring an in-home live-in caregiver for someone with Multiple System Atrophy (MSA) can offer a range of significant benefits. MSA is a progressive neurodegenerative condition that can lead to various physical and autonomic difficulties, and having a dedicated live-in caregiver can greatly improve the individuals quality of life and provide peace of mind for both the person with MSA and their family. […] In-home care can significantly enhance the well-being of individuals with MSA and provide much-needed support and assistance to their families. They can also offer flexibility in care plans to accommodate changes in the persons condition. FCP Live-In caregivers can play a crucial role in enhancing the quality of life for individuals with MSA and supporting their families in managing the challenges of the condition.
  • #81 Multiple System Atrophy Care or MSA Care – FCP Live-In
    https://www.liveinhomecare.com/care/multiple-system-atrophy-care-or-msa-care-caregiver-in-home-home-care-live-in-services-agency-solutions/
    Caring for someone with Multiple System Atrophy (MSA) can be challenging, as the condition is a progressive neurodegenerative disorder that affects various aspects of a persons physical and autonomic functions. Providing care and support for individuals with MSA often requires a comprehensive approach, and its essential to work closely with healthcare professionals to ensure the best possible quality of life for the affected person. […] Its important to select a reputable agency like FCP Live-In to ensure that caregivers are properly trained and qualified to provide care for individuals with complex medical conditions like MSA. They can also offer flexibility in care plans to accommodate changes in the persons condition. FCP Live-In caregivers can play a crucial role in enhancing the quality of life for individuals with MSA and supporting their families in managing the challenges of the condition.
  • #82 Multiple System Atrophy | Peter O’Donnell Jr. Brain Institute | Condition | UT Southwestern Medical Center
    https://utswmed.org/conditions-treatments/multiple-system-atrophy/
    As MSA advances, patients require help with mobility, blood pressure management, and bowel and bladder function. This loss of independence affects quality of life for patients and their family members. […] Our licensed clinical social workers (LCSWs) provide emotional support for patients and family members, in partnership with psychologists and psychiatrists as needed. Our LCSW team organizes patient and caregiver meetings and conducts conference calls with patients, caregivers, and clinicians between clinic visits.
  • #83 Multiple System Atrophy Treatment | University of Utah Health
    https://healthcare.utah.edu/neurosciences/neurology/movement-disorders/multiple-system-atrophy
    Multiple system atrophy (MSA) is a rare neurological disorder. It causes nerve cells in parts of your brain to gradually decline. Over time, this damage affects your bodys involuntary processes. […] There is no cure for multiple system atrophy. MSA treatment focuses on managing symptoms. A multispecialty care team approach is best because MSA symptoms vary. […] Treatment needs will change as your MSA progresses. Palliative care can help both you and your caregivers. […] It is important to work with a physical therapist. They will help you prevent falls and improve mobility. They will also teach you how to use a gait aid like a cane or walker if necessary. […] An occupational therapist will teach you tips on how to manage daily activities like eating or bathing. […] Working with a speech therapist can help you with slurred speech or swallowing difficulties.
  • #84 Multiple System Atrophy (MSA) – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version
    https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/autonomic-nervous-system-disorders/multiple-system-atrophy-msa
    Multiple system atrophy is a progressive, fatal disorder that causes symptoms resembling those of Parkinson disease (parkinsonism), loss of coordination, and malfunction of internal body processes (such as blood pressure and bladder control). […] Simple measures and medications can help lessen symptoms, but the disorder is progressive and ultimately fatal. […] Many people are confined to a wheelchair or are otherwise severely disabled within 5 years after symptoms begin. The disorder results in death usually about 9 to 10 years after symptoms begin. […] No treatment can cure multiple system atrophy. However, a combination of simple measures and medications may help relieve symptoms. […] Physical, occupational, and speech therapists can teach people ways to compensate when walking, doing daily activities, and speaking become difficult. Specialists in palliative medicine focus on relieving pain and treating symptoms and helps people deal with end-of-life issues. Social workers can help people find support groups and, when symptoms become disabling, home health care or hospice services. […] Because the disorder is progressive and ultimately fatal, people should prepare advance directives soon after the disorder is diagnosed. These directives should indicate what kind of medical care people want at the end of life.
  • #85 The Challenge of MSA: Multiple System Atrophy
    https://rn-journal.com/journal-of-nursing/the-challenge-of-msa
    A comprehensive nursing assessment is key to identifying causative factors and instituting specific measures to remedy orthostatic hypotension (OH) e.g. timing of medications, particularly anti-hypertensives and antidepressants. […] The role of the nursing is critical in maintaining the patients quality of life, potentiating capabilities and preventing complications. […] Orthostatic hypotension is managed primarily by patient teaching and medications. Patient compliance is the way to success. […] Patients need continuing support and encouragement to adapt these new interventions into their daily routine. […] The medical interdisciplinary health team plays a critical role in assisting the patient and caregivers in the discussion of end-of-life issues. […] The primary care giver is the spouse in the vast majority of cases and needs to be aware of what is driving their choices.
  • #86 Palliative Care Discussions in Multiple System Atrophy: A Retrospective Review | Canadian Journal of Neurological Sciences | Cambridge Core
    https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/palliative-care-discussions-in-multiple-system-atrophy-a-retrospective-review/4F1398B9A85ECA7588455DCAD237C6B3
    Objective: Multiple system atrophy (MSA) is an incurable neurodegenerative illness in which progressive symptoms, including stridor and acute laryngeal obstruction, occur. Advanced care planning and palliative care discussions in people living with MSA are not well defined. The aim of the present study is to evaluate advanced care planning and current practices in palliative care in MSA to identify opportunities for improving quality of care. […] There is no standard approach to advanced care planning and palliative care discussions in people living with MSA. We propose a framework to guide advanced care planning and palliative care discussions in MSA. […] Early and effective advance care and end-of-life planning discussions are therefore essential for effective palliative care in MSA. Our chart review shows clear gaps in the current approach to advance care planning, goals of care and palliative care discussions in patients living with MSA, at least at our centre.
  • #87 Palliative Care Discussions in Multiple System Atrophy: A Retrospective Review | Canadian Journal of Neurological Sciences | Cambridge Core
    https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/palliative-care-discussions-in-multiple-system-atrophy-a-retrospective-review/4F1398B9A85ECA7588455DCAD237C6B3
    Our study demonstrates that there is no standard approach to advanced care planning and palliative care discussions for people living with MSA at our centre. A systematic approach to palliative care in MSA would enable people living with MSA and their substitute decision makers to make healthcare decisions that are aligned with their healthcare goals and their wishes for care at the end of life. We propose a framework for advance care planning and palliative care discussions in MSA in order to help guide healthcare teams through these difficult but vitally important discussions.
  • #88
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Management Tips: – Use of mobility aids, possibly hospital beds for comfort. – Swallowing assessments, considering dietary changes or feeding tubes. – Palliative care might begin to focus on symptom management and quality of life. […] Management Tips: – Focus on comfort care, pain management, and dignity. – Regular repositioning to prevent bedsores. – Emotional support for both the patient and caregivers, possibly including counseling. […] Navigating MSA involves adapting to an ever-changing landscape of health. Each stage brings its own set of challenges but also opportunities for care and support. By understanding these stages, individuals affected by MSA and their support networks can better prepare for what might come, ensuring the best possible quality of life at every turn.
  • #89
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Multiple System Atrophy (MSA) is a rare, degenerative neurological disorder that impacts various systems in the body, notably the autonomic functions, movement, and sometimes cognition. While the progression of MSA can differ greatly from one individual to another, understanding the typical stages can be invaluable for planning care, setting realistic expectations, and preparing for the journey ahead. Here, we outline the four general stages of MSA, each marked by distinctive symptoms and challenges. […] Management Tips: – Engage in physical therapy to maintain mobility. – Monitor blood pressure, especially upon standing, to manage orthostatic hypotension. – Regular consultations with a neurologist to track progression. […] Management Tips: – Occupational therapy to adapt to physical limitations. – Consider assistive devices for walking; home safety assessments. – Speech therapy to address communication challenges.
  • #90
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Multiple System Atrophy (MSA) is a rare, degenerative neurological disorder that impacts various systems in the body, notably the autonomic functions, movement, and sometimes cognition. While the progression of MSA can differ greatly from one individual to another, understanding the typical stages can be invaluable for planning care, setting realistic expectations, and preparing for the journey ahead. Here, we outline the four general stages of MSA, each marked by distinctive symptoms and challenges. […] Management Tips: – Engage in physical therapy to maintain mobility. – Monitor blood pressure, especially upon standing, to manage orthostatic hypotension. – Regular consultations with a neurologist to track progression. […] Management Tips: – Occupational therapy to adapt to physical limitations. – Consider assistive devices for walking; home safety assessments. – Speech therapy to address communication challenges.
  • #91
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Multiple System Atrophy (MSA) is a rare, degenerative neurological disorder that impacts various systems in the body, notably the autonomic functions, movement, and sometimes cognition. While the progression of MSA can differ greatly from one individual to another, understanding the typical stages can be invaluable for planning care, setting realistic expectations, and preparing for the journey ahead. Here, we outline the four general stages of MSA, each marked by distinctive symptoms and challenges. […] Management Tips: – Engage in physical therapy to maintain mobility. – Monitor blood pressure, especially upon standing, to manage orthostatic hypotension. – Regular consultations with a neurologist to track progression. […] Management Tips: – Occupational therapy to adapt to physical limitations. – Consider assistive devices for walking; home safety assessments. – Speech therapy to address communication challenges.
  • #92
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Management Tips: – Use of mobility aids, possibly hospital beds for comfort. – Swallowing assessments, considering dietary changes or feeding tubes. – Palliative care might begin to focus on symptom management and quality of life. […] Management Tips: – Focus on comfort care, pain management, and dignity. – Regular repositioning to prevent bedsores. – Emotional support for both the patient and caregivers, possibly including counseling. […] Navigating MSA involves adapting to an ever-changing landscape of health. Each stage brings its own set of challenges but also opportunities for care and support. By understanding these stages, individuals affected by MSA and their support networks can better prepare for what might come, ensuring the best possible quality of life at every turn.
  • #93
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Management Tips: – Use of mobility aids, possibly hospital beds for comfort. – Swallowing assessments, considering dietary changes or feeding tubes. – Palliative care might begin to focus on symptom management and quality of life. […] Management Tips: – Focus on comfort care, pain management, and dignity. – Regular repositioning to prevent bedsores. – Emotional support for both the patient and caregivers, possibly including counseling. […] Navigating MSA involves adapting to an ever-changing landscape of health. Each stage brings its own set of challenges but also opportunities for care and support. By understanding these stages, individuals affected by MSA and their support networks can better prepare for what might come, ensuring the best possible quality of life at every turn.
  • #94
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Management Tips: – Use of mobility aids, possibly hospital beds for comfort. – Swallowing assessments, considering dietary changes or feeding tubes. – Palliative care might begin to focus on symptom management and quality of life. […] Management Tips: – Focus on comfort care, pain management, and dignity. – Regular repositioning to prevent bedsores. – Emotional support for both the patient and caregivers, possibly including counseling. […] Navigating MSA involves adapting to an ever-changing landscape of health. Each stage brings its own set of challenges but also opportunities for care and support. By understanding these stages, individuals affected by MSA and their support networks can better prepare for what might come, ensuring the best possible quality of life at every turn.
  • #95 Multiple System Atrophy Research Program | NYU Langone Health
    https://med.nyu.edu/departments-institutes/neurology/research/divisions-centers/autonomic-disorders/multiple-system-atrophy-research-program
    The Division of Autonomic Disorders, in conjunction with NYU Langones Dysautonomia Center, leads a comprehensive clinical research program dedicated to multiple system atrophy (MSA). As a world-class reference center for MSA, the Multiple System Atrophy Research Program provides direct access to clinical care and support to more than 100 people living with MSA. […] We offer patients the opportunity to participate in research studies focused on understanding the causes and evolution of MSA; developing and approving new symptomatic treatments of MSA; and discovering treatments that can stop or slow the progression of neurodegeneration in MSA. […] Our goal is to improve the quality of life of people who have MSA and their families, and eventually find a cure. A distinctive hallmark of our program is its translational approach to research. Patients can participate in cutting-edge research studies at various stages of the disease while also receiving the best clinical care from our dedicated team, led by Horacio Kaufmann, MD.
  • #96 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    To date, there are no approved disease-modifying therapies for MSA. However, a broad spectrum of research approaches is currently in development for clinical trials, which could yield new opportunities in the treatment of this relentlessly progressive neurodegenerative disorder. […] The therapeutic management of MSA patients focuses on a multidisciplinary strategy of symptom control with the patient and quality of life at the center of interest. […] Evidence from open label trials and case reports suggests that parkinsonism as predominant motor feature in MSA may benefit from physiotherapy as coordination, balance, and gait impairment may be improved with intensive physiotherapy as well as with resistance training and challenge-oriented gait and balance training in degenerative cerebellar disorders.
  • #97 Multiple System Atrophy Research Program | NYU Langone Health
    https://med.nyu.edu/departments-institutes/neurology/research/divisions-centers/autonomic-disorders/multiple-system-atrophy-research-program
    We continue to have a number of clinical trial opportunities that are open to patients with MSA according to their specific needs. […] We are currently testing ampreloxetine, a new drug for orthostatic hypotension specifically designed for people with MSA. […] The Dysautonomia Center also organized the 6th International MSA Congress, held in March 2018 in New York City. This was the biggest ever event devoted to MSA, gathering together international experts on MSA, as well as patients. This forum fostered collaboration and helped to define a roadmap for MSA initiatives. […] The Division of Autonomic Disorders offers a United Council for Neurologic Subspecialties (UCNS)accredited Autonomic Disorders Fellowship. Young physicians entering the program learn to diagnose and manage patients with autonomic disorders, with special emphasis on MSA.
  • #98 Multiple System Atrophy: Advances in Diagnosis and Therapy
    https://www.e-jmd.org/journal/view.php?doi=10.14802/jmd.22082
    This review summarizes improvements in understanding the pathophysiology and early clinical symptoms of multiple system atrophy (MSA) and advancements in diagnostic methods and disease-modifying therapies for the condition. […] Symptomatic treatment has limited efficacy in MSA, and no treatments suppress or alleviate disease progression. However, notable advancements have been achieved in the development of antibody therapies against -synuclein, multitargeted disease-modifying therapies, including mesenchymal stem cell (MSC)-mediated neuroinflammation treatments, and other symptomatic treatments, such as selective serotonin reuptake inhibitors (SSRIs). […] The proposed new category of possible prodromal MSA with very low specificity is expected to undergo continuous refinement with emerging data, particularly from prospective investigations and biomarker studies.
  • #99 Multiple System Atrophy: Advances in Diagnosis and Therapy
    https://www.e-jmd.org/journal/view.php?doi=10.14802/jmd.22082
    This review summarizes improvements in understanding the pathophysiology and early clinical symptoms of multiple system atrophy (MSA) and advancements in diagnostic methods and disease-modifying therapies for the condition. […] Symptomatic treatment has limited efficacy in MSA, and no treatments suppress or alleviate disease progression. However, notable advancements have been achieved in the development of antibody therapies against -synuclein, multitargeted disease-modifying therapies, including mesenchymal stem cell (MSC)-mediated neuroinflammation treatments, and other symptomatic treatments, such as selective serotonin reuptake inhibitors (SSRIs). […] The proposed new category of possible prodromal MSA with very low specificity is expected to undergo continuous refinement with emerging data, particularly from prospective investigations and biomarker studies.
  • #100 Multiple System Atrophy Research Program | NYU Langone Health
    https://med.nyu.edu/departments-institutes/neurology/research/divisions-centers/autonomic-disorders/multiple-system-atrophy-research-program
    The MSA Research Program is dedicated to developing tools to improve the diagnostic accuracy of MSA, particularly in the early stages. We are researching methods to help clinicians identify people with MSA, before the characteristic abnormalities emerge so that there may be a chance to prevent them. […] We are also collaborating with basic researchers to discover new biomarkers that can accelerate the diagnosis of MSA and distinguish it from other similar disorders, such as Parkinsons disease. […] Having been involved in pivotal trials for drug approval, we understand the care and attention to detail that is needed to test new treatments to find ones that are safe and effective for people with MSA. […] Our nursing and medical staff are trained to monitor patient safety when participating in research trials, and we ensure that all our studies meet regulatory requirements necessary for good clinical practice.
  • #101 Multiple System Atrophy Research Program | NYU Langone Health
    https://med.nyu.edu/departments-institutes/neurology/research/divisions-centers/autonomic-disorders/multiple-system-atrophy-research-program
    The Division of Autonomic Disorders, in conjunction with NYU Langones Dysautonomia Center, leads a comprehensive clinical research program dedicated to multiple system atrophy (MSA). As a world-class reference center for MSA, the Multiple System Atrophy Research Program provides direct access to clinical care and support to more than 100 people living with MSA. […] We offer patients the opportunity to participate in research studies focused on understanding the causes and evolution of MSA; developing and approving new symptomatic treatments of MSA; and discovering treatments that can stop or slow the progression of neurodegeneration in MSA. […] Our goal is to improve the quality of life of people who have MSA and their families, and eventually find a cure. A distinctive hallmark of our program is its translational approach to research. Patients can participate in cutting-edge research studies at various stages of the disease while also receiving the best clinical care from our dedicated team, led by Horacio Kaufmann, MD.
  • #102 Multiple System Atrophy Research Program | NYU Langone Health
    https://med.nyu.edu/departments-institutes/neurology/research/divisions-centers/autonomic-disorders/multiple-system-atrophy-research-program
    The Division of Autonomic Disorders, in conjunction with NYU Langones Dysautonomia Center, leads a comprehensive clinical research program dedicated to multiple system atrophy (MSA). As a world-class reference center for MSA, the Multiple System Atrophy Research Program provides direct access to clinical care and support to more than 100 people living with MSA. […] We offer patients the opportunity to participate in research studies focused on understanding the causes and evolution of MSA; developing and approving new symptomatic treatments of MSA; and discovering treatments that can stop or slow the progression of neurodegeneration in MSA. […] Our goal is to improve the quality of life of people who have MSA and their families, and eventually find a cure. A distinctive hallmark of our program is its translational approach to research. Patients can participate in cutting-edge research studies at various stages of the disease while also receiving the best clinical care from our dedicated team, led by Horacio Kaufmann, MD.
  • #103 Multiple System Atrophy Research Program | NYU Langone Health
    https://med.nyu.edu/departments-institutes/neurology/research/divisions-centers/autonomic-disorders/multiple-system-atrophy-research-program
    We continue to have a number of clinical trial opportunities that are open to patients with MSA according to their specific needs. […] We are currently testing ampreloxetine, a new drug for orthostatic hypotension specifically designed for people with MSA. […] The Dysautonomia Center also organized the 6th International MSA Congress, held in March 2018 in New York City. This was the biggest ever event devoted to MSA, gathering together international experts on MSA, as well as patients. This forum fostered collaboration and helped to define a roadmap for MSA initiatives. […] The Division of Autonomic Disorders offers a United Council for Neurologic Subspecialties (UCNS)accredited Autonomic Disorders Fellowship. Young physicians entering the program learn to diagnose and manage patients with autonomic disorders, with special emphasis on MSA.
  • #104
    https://link.springer.com/article/10.1007/s12311-022-01411-6
    Although therapeutic symptomatic decisions in MSA are in most instances pragmatic without formal evidence from RCTs, there are symptomatic treatment options for motor symptoms, autonomic failure, and sleep disturbances available. […] Sometimes forgotten but of central importance are non-pharmacological treatments starting from simple tips to avoid OH symptoms (including lifestyle changes, compression stockings, or head up tilt while sleeping), to regular therapies including exercise and medical rehabilitation to keep the current mobile state and avoid falls. […] Empirically, patients should be provided access to rehabilitation programs regularly, e.g. at least once a year.
  • #105 Symptomatic Care in Multiple System Atrophy: State of the Art
    https://pmc.ncbi.nlm.nih.gov/articles/PMC10125958/
    In case of regular falling injury, protective garments should be considered. […] Non-pharmacological treatment options include the use of custom-fitted compression stockings or elastic abdominal binders, raising the head of the bed by 20-45 when sleeping to increase intravasal volume and reduce hypotension in the morning, but also lifestyle changes such as an adequate intake of fluid and salt, avoiding exposure to hot, humid environments and performing physical activity programs with recumbent or sitting exercises. […] Patients may benefit from early support by a speech-language pathologist, which are of utmost importance in the multidisciplinary care of MSA patients. […] Although therapeutic symptomatic decisions in MSA are in most instances pragmatic without formal evidence from RCTs, there are symptomatic treatment options for motor symptoms, autonomic failure, and sleep disturbances available.
  • #106
    https://link.springer.com/article/10.1007/s12311-022-01411-6
    Although therapeutic symptomatic decisions in MSA are in most instances pragmatic without formal evidence from RCTs, there are symptomatic treatment options for motor symptoms, autonomic failure, and sleep disturbances available. […] Sometimes forgotten but of central importance are non-pharmacological treatments starting from simple tips to avoid OH symptoms (including lifestyle changes, compression stockings, or head up tilt while sleeping), to regular therapies including exercise and medical rehabilitation to keep the current mobile state and avoid falls. […] Empirically, patients should be provided access to rehabilitation programs regularly, e.g. at least once a year.
  • #107
    https://link.springer.com/article/10.1007/s12311-022-01411-6
    Although therapeutic symptomatic decisions in MSA are in most instances pragmatic without formal evidence from RCTs, there are symptomatic treatment options for motor symptoms, autonomic failure, and sleep disturbances available. […] Sometimes forgotten but of central importance are non-pharmacological treatments starting from simple tips to avoid OH symptoms (including lifestyle changes, compression stockings, or head up tilt while sleeping), to regular therapies including exercise and medical rehabilitation to keep the current mobile state and avoid falls. […] Empirically, patients should be provided access to rehabilitation programs regularly, e.g. at least once a year.
  • #108 The Challenge of MSA: Multiple System Atrophy
    https://rn-journal.com/journal-of-nursing/the-challenge-of-msa
    A comprehensive nursing assessment is key to identifying causative factors and instituting specific measures to remedy orthostatic hypotension (OH) e.g. timing of medications, particularly anti-hypertensives and antidepressants. […] The role of the nursing is critical in maintaining the patients quality of life, potentiating capabilities and preventing complications. […] Orthostatic hypotension is managed primarily by patient teaching and medications. Patient compliance is the way to success. […] Patients need continuing support and encouragement to adapt these new interventions into their daily routine. […] The medical interdisciplinary health team plays a critical role in assisting the patient and caregivers in the discussion of end-of-life issues. […] The primary care giver is the spouse in the vast majority of cases and needs to be aware of what is driving their choices.
  • #109 Multiple System Atrophy (MSA) – Brain, Spinal Cord, and Nerve Disorders – Merck Manual Consumer Version
    https://www.merckmanuals.com/home/brain-spinal-cord-and-nerve-disorders/autonomic-nervous-system-disorders/multiple-system-atrophy-msa
    Multiple system atrophy is a progressive, fatal disorder that causes symptoms resembling those of Parkinson disease (parkinsonism), loss of coordination, and malfunction of internal body processes (such as blood pressure and bladder control). […] Simple measures and medications can help lessen symptoms, but the disorder is progressive and ultimately fatal. […] Many people are confined to a wheelchair or are otherwise severely disabled within 5 years after symptoms begin. The disorder results in death usually about 9 to 10 years after symptoms begin. […] No treatment can cure multiple system atrophy. However, a combination of simple measures and medications may help relieve symptoms. […] Physical, occupational, and speech therapists can teach people ways to compensate when walking, doing daily activities, and speaking become difficult. Specialists in palliative medicine focus on relieving pain and treating symptoms and helps people deal with end-of-life issues. Social workers can help people find support groups and, when symptoms become disabling, home health care or hospice services. […] Because the disorder is progressive and ultimately fatal, people should prepare advance directives soon after the disorder is diagnosed. These directives should indicate what kind of medical care people want at the end of life.
  • #110
    https://pspawareness.com/blogs/psp-q-a/navigating-the-four-stages-of-multiple-system-atrophy-msa?srsltid=AfmBOopKL23y7Fpz4Vx9NMA0F9AZfUc4Nj_UdpANPd5JQ7hmoHpshUDZ
    Management Tips: – Use of mobility aids, possibly hospital beds for comfort. – Swallowing assessments, considering dietary changes or feeding tubes. – Palliative care might begin to focus on symptom management and quality of life. […] Management Tips: – Focus on comfort care, pain management, and dignity. – Regular repositioning to prevent bedsores. – Emotional support for both the patient and caregivers, possibly including counseling. […] Navigating MSA involves adapting to an ever-changing landscape of health. Each stage brings its own set of challenges but also opportunities for care and support. By understanding these stages, individuals affected by MSA and their support networks can better prepare for what might come, ensuring the best possible quality of life at every turn.