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Posts tagged "gilenya-ulotka"

Spoko post Jacka o jego SM. Wpisuje się doskonale w moim zdaniem najbardziej tra…

Spoko post Jacka o jego SM. Wpisuje się doskonale w moim zdaniem najbardziej trafną formułę opisującą tą wredną chorobę – "Jedyną rzeczą, która łączy chorych na SM jest niepewność".

http://profile.ak.fbcdn.net/hprofile-ak-frc3/t5/373043_201925903159684_1231697234_s.jpg

Jack Osbourne
DWMS – DANCING WITH MS When I first signed up to do Dancing with the Stars, one of the first questions I was asked was “how will having MS affect your ability to perform throughout the season?” The truthful answer is…I had no idea. Although since being diagnosed in May of 2012 with relapsing-remitting MS (RRMS) I’ve been able to maintain a very active, and somewhat healthy lifestyle, I hadn’t had the opportunity to really figure out my limitations. I’d participated in numerous adventure races, lasting 12-24 hours, but doing something like that is completely different than training 7 days a week, 40 hours a week. You can’t really prepare for a schedule like this. Fortunately, over the past 10 weeks, I haven’t had any severe symptoms, other than the odd bit of tingling down my leg and the occasional bout of fatigue. In a weird way, I’ve found myself somewhat holding my breath, because although I feel good and confident in my ability to continue to perform, you never really do know what tomorrow is going to bring. For people who have MS, I think you’ll be able to relate to that feeling. It’s funny, every week after the show, we all line up and do a big red carpet press line, and the question that every single reporter asks me is how are you feeling – any aches any pains? But we all know what they’re really asking. The truth of the matter is, today I’m good. I’m feeling strong and confident in my ability to continue on. It’s funny, no matter how much information there is out there about MS, it still carries a negative stigma. Nowadays if you find a treatment that works for you, you exercise regularly, eat right, and take care of yourself, you really can have a chance at a relatively symptom free life. (I use the term relatively loosely) I’m not saying everyone with MS can do DWTS, but it doesn’t mean you can’t set an achievable goal and strive to achieve it everyday. No matter who you are or what you struggle with, that is something we are all capable of. And right now my goal is to win that mirrorball trophy. The interesting thing about DWTS is that it is a competition of progress, it slowly ramps up it’s intensity as every week goes by, so although you hit the ground running, you don’t hit the ground sprinting (that’s this week). I’m ready to sprint. I owe a lot of that to my partner Cheryl Burke. Cheryl believes in me in a way that has made me believe in myself. In my moments of doubt, I know that Cheryl always has my back. I can’t quite put into words how moved I am by all the people who have reached out to me online. It truly means a lot. ***Just know this, if that day does come where I do win this mirrorball, know that I didn’t just win it for me, but I won it for all of us with MS.***

Światowy Dzień SM minął mi pod znakiem gorączki… a z SM to naprawdę słabe połą…

Światowy Dzień SM minął mi pod znakiem gorączki… a z SM to naprawdę słabe połączenie.


Polska: ŚWIATOWY DZIEŃ SM 2012 – PTSR
www.symfoniaserc.pl
Znamy już datę i motto Światowego Dnia SM 2012. Będzie on częścią 3-letniej kampanii MSIF (Międzynarodowej Federacji Stwardnienia Rozsianego). Slogan całej kampanii to „1000 Twarzy SM” (1000 Faces of MS), stawia on w centrum pacjenta – osobę z SM. PTSR – sclerosis multiplex – stwardnienie rozsiane;…

No to jutro Big Day… a raczej G Day! Dzisiaj wydalem pierwsze 8tys zl z mojej…

No to jutro Big Day… a raczej G Day! Dzisiaj wydalem pierwsze 8tys zl z mojej 'skarbonki' ktora zapewne szybko sie skonczy w tym tempie. Ale naprawde chcialbym sie w koncu lepiej poczuc, chociaz na chwile. Jutro o 12 sciskajcie mocno kciuki a ja biore pierwsza tabletke Gilenyi!

Dodatkowe badania

Przed rozpoczeciem leczenia za 9k miesiecznie postanowilem zrobic jeszcze badania wykluczajace inne dziwne choroby. Ale znowu te koszty sa przerazajace – panel badań na borelioze to 600 zl, jeszcze inne wymagaja wysylki do Oxfordu, nawet nie chce znac tej ceny…

Mam takie opcje leczenia do wyboru: Gilenya – 86 zgonów po pierwszym podaniu Ty…

Mam takie opcje leczenia do wyboru:

Gilenya – 86 zgonów po pierwszym podaniu
Tysabri – ok 1,16% zapalenia mózgu, 20 zgonów
MItoxantron – 55 zgonów / 0,1%

A wszystkie kosztuja jakis majatek… Takze Gilenya wychodzi w miare bo po aspirynie tez sie zgony zdarzaja, ale mimo wszystko rozkminka jest dosc ciezka..