Nicol
Forum Replies Created
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I’m guessing one’s willingness to participate in RTT could correlate with the their own experience of the  progression of the disease.  Speaking for myself, I would like to try something that has shown help for ANY pALS, especially one that has already passed Phase I and Phase II testing, because I’m two years out from my first subtle symptom and already I cannot walk, talk or swallow.  I’m relatively young 55yo, 2 kids still in college, and 2 others just starting young families.  My first grandboy is just 2yo and I’d like to meet the many others that may come, as well as see my only daughter get married.  I’m not afraid to die, Jesus is my Savior, so I know where I’ll be….but the way ALS takes you, I’m definitely NOT anticipating.  So yes, there are reasons to be cautious, but personally, I believe there may be more reasons to advocate for RTT.
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Thanks Dagmar! Â I went back and read that thread. Â I appreciate your help!
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Thanks Dagmar! Â I went back and read that thread. Â I appreciate your help!
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I, too am taking Neudexta and also stopped for about a week to test the difference.  It helps me best with my emotional crying spells, I think.  I was hoping for help with my swallowing and speaking, but don’t really see a difference in those areas. I have noticed more saliva….is this normal?  I may have to try one a day instead of 2.
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Thank you all for your kind responses – it is helpful to hear from others in the trenches.  My diagnosis journey was such a saga that I have only been to my ALS neurologist for the initial consultation after confirming the diagnosis. I was supposed to have my first clinic visit, where he has all the various therapists come in to see his ALS patients in one setting, next week.  But they just called to cancel the clinic visit, in light of the corona virus battle.  So, I haven’t been able to see any therapists yet.  Thanks again for your encouragement!