Frankie a reex

Our forum members amaze me daily.  You all ask and answer some tough questions daily! I’m so proud that I am part of such a unique online community.  It’s a bitter sweet experience to be honest.  I’m sure you can all understand that sentiment. Carolyn, I cannot even begin to put into words how much I have learned from you. Grace to begin with. Th…[Read more]

Richard,

Any time a post is deleted or edited, Dagmar and I consult each other and include the other on the response. The member is emailed and we explain why the post or comment was edited or deleted.  In our community standards it is very clear that comments are supposed to contribute to the discussion, and provide information or support. You…[Read more]

Richard, we do support differing opinions. However, I believe several of your recent replies were deleted because you were posting (repeatedly) long lists of links rather than participating in the topic’s discussion. Each time you posted the same list a private message was sent to you outlining the what and why they were deleted.

Having ongoing…[Read more]

Shannon,

ALS effects each person differently so the exact path and length of time each pALS has is difficult to determine. Do you know if your husband has a genetic mutation or if his ALS is sporadic?  How has his progression been so far? Has it been limb onset or bulbar? All of these factors play a part in helping you understand and prepare.  H…[Read more]

@Martin,
How long does it typically take for a drug to be approved and then made available in Canada? I didn’t realize that the Canadian process was as long as the USA’s.
Amanda

Patty, I agree that you can continue keeping your body moving with at-home sessions, rather than formally seeing a PT. But a PT or OT can give you guidance on what exercises to do.

It’s not about “building up” muscles, it’s about maintaining the muscle strength you have now.

Actually, the muscles won’t break down from overwork – – it is from…[Read more]

We look forward to your future check-ins letting us know how you are doing!

What a positive report on how PT has helped you through the years! Keep setting those goals…it’s what keeps us pALS looking forward.

Rebecca, I’m happy to read that you are continuing your PT sessions. I suggest you keep a focus on strengthening your core. Plus, breaking up your at-home exercise into short sessions throughout the day. That way, you can keep your energy up and not overtax your weak leg & foot. During my 1st yr with ALS I learned the importance of adapt, adapt,…[Read more]

That’s very helpful information John, about medicare access. Thanks for sharing it – – and, along with how your PT sessions have been helping. Keeping our ALS-bodies in alignment and moving, I believe, contributes to slowing down symptom progression.

Suzanne, that’s good that you still do at-home stretches for your husband between the PT visits. So many pALS rely on only the weekly PT sessions for their movement. But bodies need to move every day – – whether we’re doing the movement, or someone is helping us do it.

I know it takes a lot of your energy to help him stretch daily, but I’ll bet…[Read more]

Cynthia,
I can “feel” so much anxiety, frustration and pain when I read your post. I’ve lost several family members to ALS; however, I can’t imagine watching your spouse or life partner suffering with ALS and then not having access to treatments that are in the trial phase. I understand that the government has a process for approving treatments…[Read more]

@John C.,

That is great news and I think your post was well written! Staying cautiously optimistic is GREAT and I’ll take that kind of feedback from someone involved in the trials. The more I talk the the team at the ALS clinic for the Pre-fALS study I am in I get the same kind of feedback. They are also part of the Tofferson study although I did…[Read more]

Iancu,

You would probably have to have a doctor prescribe the medication.  You likely cannot purchase it across country lines.

Perhaps there is someone on the forums from Canada who can provide you with more information.