Sandra Mikush

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 with…[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 3…[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 las…[Read more]