I was swimming regularly for 3 years after my diagnosis, and my FVC score stayed in the 115-125 range. I had to stop swimming after I fell and hurt my shoulder, limiting my range of motion. Despite some improvement with cortisone and PT, I had to stop swimming. I use a rollator to walk and occasionally ride a recumbent trike, but I no longer…

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I’ve had an AFO for about a year. I started with an off-the-shelf AFO made of hard plastic, and I hated it. It was clumsy and felt less stable than no AFO. With some help from this forum, I switched to a carbon fiber AFO with enough flexibility to walk, hike and play pickleball. I’m slower and more careful these days, but I’m so much happier… Read more

I agree with others who were surprised at the downside of going on Social Security Disability and Medicare. As Radicava ORS and Riluzole came online, I was no longer eligible for copay assistance once enrolled in Medicare. The bigger challenge was that my Medicare enrollment was unexpectedly back-dated more than a year. Since my husband and I… Read more

Patty, I hope you have good luck with Relyvrio. I’ve taken it for a month and noticed no side effects. I’ve found that mouthwash before and something to eat right after are helpful (bananas, yogurt and pita chips all work for me). The best advice I got was to drink it through a straw. It goes down more quickly and must skip some of the… Read more

My dad was diagnosed at age 81 and lived to 86. He was misdiagnosed with peripheral neuropathy a few years earlier. The last year was hard, but he had some really good years and kept a positive attitude. Good luck to you!

Like others, I like to look a bit nicer for clinic appointments. Of course, I could never out-dress Dr. Bedlack! (I tried to attach a photo but can’t figure out how to do it.)

Thanks, Carolyn! I’ve learned from all of you to be insistent and persistent.

Thanks for this reply, Lisa. I’m still very active and want to stay that way for as long as possible. I like the idea of an added spring to my step and ankle support. I’m much more encouraged about getting the right AFO to stay active!

This is so helpful, Dagmar. I sent this thread to my PT to share my pALS research and told her I want a prescription and referral to an orthotics specialist. I feel so much better taking control of my situation. Thanks to you and everyone who weighed in.

Thanks to everyone for your feedback. This is a link to the AFO that an acquaintance has. She doesn’t have ALS but has permanent nerve damage that led to foot drop and ankle weakness. https://www.thuasneusa.com/product/sprystep-flex/

I know my PT is hesitant to have me fitted for an expensive AFO since I’ll continue to progress. But I love… Read more

My PT suggested an inexpensive plastic AFO for early weakness in my ankle and slight foot drop. I tried it and found it very “clunky” and nearly impossible to walk down hills (I live in the mountains). I love to hike and play pickleball and can’t imagine doing either with this AFO. A friend has a carbon fiber AFO (she has nerve damage with… Read more

This is a timely topic for me – thanks for posting. I’m about 9 months into my diagnosis (and 19 months since first symptoms), and I have tried to keep up my regular routine of core/strength training and frequent hiking. I added stretching and swimming after my diagnosis, and I especially enjoy swimming. I’ve recently noticed that I struggle… Read more

I signed up for this at my doctor’s suggestion. I have familial ALS but didn’t test for any known genetic mutations. We’re hoping that the full genome sequencing will yield some answers. Meanwhile, I’m happy to contribute to research in this small way.

Scott, I opted for the Healey trial for those reasons. I’m also in regimen D and have been participating for just over 2 months. I haven’t had any side effects, and my progression continues to be slow. I find the weekly webinars helpful and appreciate hearing from various research partners.

 

Thanks, Mark.

I learned last week that I was accepted and assigned to regimen D. I go this week for my baseline appt. Like you, I’m excited to be a part of the study regardless of whether I receive Pridopidine or the placebo.

Does anyone have experience with acupuncture to treat ALS? I’ve read the report on ALS Untangled and know that most treatments are used to relieve symptoms. I’m wondering if anyone knows of acupuncture treatments that relate to slowing progression of the disease and, if so, what regimens are used. Thanks for any insights.

Great to hear about your experience in the Healey trial. I hope to complete the screening next week and get started.

Glad to hear of your positive experience, Tom. I’m going next week for Healey Platform screening.

Can you say more about the time commitment for clinical trials? Do you mean the length of the trials or the time it takes to participate. I’ve asked to be screened for the Healey Platform, opting for that 6-mo trial instead of a one-year phase 3 trial for COMBAT-ALS (Ibudilast). I’m not sure how long I’ll be eligible for trials – I’ve heard 2 or… Read more

I’m currently exploring clinical trials and would love insights from other pALS. I have familial ALS but genetic testing was negative. Is anyone enrolling in the Healey Platform or COMBAT ALS trials?

I appreciate your perspective. I guess that was the reason Dr. B suggested I share the protocol that was used in the Chinese clinical trial that is the basis of the ALS Untangled report. I’ll keep you posted and will look forward to your website!

Mark, this is a fantastic idea! I am newly diagnosed and have found this Living with ALS message board the Dagmar’s ebook and ALS Wellness Blog incredibly helpful and hopeful. I’m incredibly fortunate to be a patient at the Duke ALS Clinic, and Dr. Bedlack and the team there are very encouraging about tapping into all kinds of resources. At my… Read more