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Well…3rd diagnosis after a 2nd EMG. MGH thinks it was caught fairly early so eligibility for clinical trials are good. Breathing is 100% normal. Time to focus on Mood, Food and sleep. My support network is closing ranks which is amazing to feel.
Already I feel the ever present frustration of the weakness setting in. It’s like a Lin annoying buzz that doesn’t go away. As a life long athlete accepting this fate will be the hardest challenge ever.
Already I feel the ever present frustration of the weakness setting in. It’s like a Lin annoying buzz that doesn’t go away. As a life long athlete accepting this fate will be the hardest challenge ever.
Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,452
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
Sorry but glad they are talking trials. how is that proceeding? Did you meet with the research nurse? Did they prescribe riluzole and radicava? Since you need 30 days on those before enrolling are they getting those started? Did they draw genetic testing?
it isn’t an easy journey and adjusting is a constantly moving target. You will almost certainly have periods of denial. It is common and completely normal. We had a thread a couple of years ago where a number of us reported asking our doctors if they were sure-even a year or more after diagnosis. Keeping ahead of things while you don’t want to do so really does help. I finally learned that when something becoes a tiny bit hard you should start looking for a solution. Don’t wait until it becomes nearly impossible. This is true for me with super slow progression. It is even more critical for medium or fast progression to stay ahead of things. The other thing I have noticed is some cope by trying to do things as close to the same way as possible. Others embrace alternate methods with goals of independence and preserving energy. The latter tends to work better
it isn’t an easy journey and adjusting is a constantly moving target. You will almost certainly have periods of denial. It is common and completely normal. We had a thread a couple of years ago where a number of us reported asking our doctors if they were sure-even a year or more after diagnosis. Keeping ahead of things while you don’t want to do so really does help. I finally learned that when something becoes a tiny bit hard you should start looking for a solution. Don’t wait until it becomes nearly impossible. This is true for me with super slow progression. It is even more critical for medium or fast progression to stay ahead of things. The other thing I have noticed is some cope by trying to do things as close to the same way as possible. Others embrace alternate methods with goals of independence and preserving energy. The latter tends to work better
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