Z życia PTSR:
1. Odbyła się jak wiecie DEBATA!!! Aktualnie D. Czarnota – Szałkowska robi jej podsumowanie chcemy by stało się ono przyczynkiem do dalszych działań PTSR oraz spotkań z decydentami ws. dostępności do leczenia w 2022r.
2. Możemy pomóc w zrobieniu kartki świątecznej – Oddziały zainteresowane prosimy o kontakt ze mną telefoniczny lub mailowy. Kartka jest opracowana w programie canva i można ja wkleić do maila.
3. Opracowujemy wyniki ankiety rehabilitacyjnej. Raz jeszcze dziękujemy wszystkim; ostatecznie mamy 336 odpowiedzi. Mamy nadzieję, że będzie można wykorzystać to do kolejnych działań rzeczniczych, a przede wszystkim prac grupy rehabilitacyjnej.
O SM:
1. na naszym Fb można zobaczyć podkast pt. „Jak pojawienie się wysoko efektywnych terapii zmieniło rokowania dla stwardnienia rozsianego i dlaczego nie należy czekać z rozpoczęciem leczenia?
Jak wybrać właściwy lek – decyduje lekarz czy pacjent?
Na czym polega postępowanie z pacjentem chorym na stwardnienie rozsiane?
Te i wiele innych kwestii omawianych jest w piątym odcinku serii podcastów „Zapytaj o SM”. Gościem odcinka był dr n. med. Jacek Zaborski, neurolog, Kierownik Oddziału Neurologii (z Pododdziałem udarowym i rehabilitacji neurologicznej) w Międzyleskim Szpitalu Specjalistycznym w Warszawie.
Odsłuchaj podcast: https://www.youtube.com/watch?v=xr0CKZStV3g
https://open.spotify.com/episode/4QjeIbGEMBDp81w4nwKgwN
Rozmowę prowadziła Joanna Dronka-Skrzypczak, osoba chorująca na SM, edukatorka zdrowia i psychoedukatorka w zakresie psychosomatyki oraz autorka kanału na YouTube „O, choroba”. Podcast jest częścią kampanii edukacyjnej „Zapytaj o SM”, której celem jest budowanie świadomości na temat stwardnienia rozsianego oraz zachęcenie pacjentów do inicjowania partnerskiej komunikacji z lekarzem na temat swojej choroby. Po więcej informacji zapraszamy na stronę kampanii www.zapytajosm.pl.
Promujcie te materiały by dotarły do jak największej liczby młodych osób, które niedawno usłyszały diagnozę i nie chcą podjąć decyzji o leczeniu z uwagi na to, że w danym momencie czują się bardzo dobrze.
2. W czwartek 16.12.2021 ostatni webinar na wasze pytania, zadane przez formularz na www.zapytajosm.pl odpowiadać będzie lek. Artur Sadowski – neurolog. Webinar obejrzycie na naszym Facebooku w czwartek o 16:00.Nie będziecie mogli wziąć udziału na żywo? Nic straconego – webinar będzie ciągle dostępny na naszym Facebooku, na naszym Youtube oraz na stronie www.zapytajosm.pl
W przyszłym roku akcja będzie kontynuowana.
3. Czy pozytywne nastawienie wpływa na przebieg choroby Jak żyć ze stwardnieniem rozsianym? Na te i wiele innych pytań odpowiadają pielęgniarki z całej Polski na spotkaniach online zorganizowanych w ramach cyklu: „Spotkania z SM”. Terminy najbliższych webinarów:14 grudnia, godz. 17:00 – spotkanie poprowadzi Pani Anna Leszczyńska z Warszawy17 grudnia, godz. 17:00 – wykładać będzie Pani Barbara Lewandowska-Rabijak z Wrocławia. Zapraszamy do rejestracji na spotkanie poprzez stronę: www.spotkaniazsm.pl
Inne:
1. W ramach Programu Leczenia, Rehabilitacji i Wsparcia mamy już ponad 883 osób w projekcie przy biurze RG PTSR. Zapraszamy Was, byście mówili o takich możliwościach jak utworzenie subkonta zwłaszcza tam gdzie nie macie sami takiej możliwości w oddziale. Aktualnie wszystkim osobom posiadającym subkonta udostępniamy grafikę do wykorzystania w 2022 roku przy akcji pozyskiwania funduszy. Kto jeszcze nie ma może się zgłosić do Ani Zakrzewskiej 535-535-437 koordynatorki PLIiR.
2. Okres świąt dla wielu z nas jest okresem trudnym spotkania z rodziną czasem długo nie widzianą lub przeciwnie samotne święta spowodowane trwającą pandemią – prosimy Was mówcie o możliwym, bezpłatnym wsparciu psychologicznym.
Poniżej propozycja materiału do rozsyłki do członków Oddziału: „Żyję w lęku, boję się o przebieg mojej choroby, teraz, gdy jest Covid boję się jeszcze bardziej… Nie wiem jak mam sobie z tym radzić… Czasem ten strach mnie paraliżuje…” – mówi Kasia.
Nie jesteś sam. Nie czekaj i umów się na rozmowę do naszych psychologów, dzwoniąc pod numer (22) 127-48-50. Czasem warto z kimś porozmawiać – z kimś, kto wie czym jest stwardnienie rozsiane. Agata, Ilona i Iza – nasze psycholożki, dobrze znają specyfikę choroby i obawy osób z SM, bo współpracują z nami od wielu lat. Nasze specjalistki umówią się z Tobą na rozmowę w dogodnym czasie : po południu, wieczorem a nawet w sobotę. Znajdź czas dla siebie. Nie musisz sobie ze wszystkim radzić sam! Nie musisz pozostawać sam ze swoim lękiem. A może masz inne problemy i kłopoty w domu, z najbliższymi i rozmowa ze specjalistą pomoże Ci wszystko poukładać w głowie Warto spróbować.
Z poważaniem,
Anna Gryżewska
Dyrektor biura Rady Głównej PTSR
Polskie Towarzystwo Stwardnienia Rozsianego
ul. Nowolipki 2a, 00-160 Warszawa
tel. 22 241 39 86
kom. 530 339 093
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