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Sandra Mikush replied to the topic What Things Would You Do Differently If Diagnosed Today? in the forum Living With ALS 1 month, 1 week ago
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 had…[Read more]
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Sandra Mikush replied to the topic Relyvrio in the forum Diagnosis Information and General Questions 4 months, 4 weeks ago
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 bit…[Read more]
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Sandra Mikush replied to the topic Has ALS changed your perception of aging? in the forum Living With ALS 8 months, 2 weeks ago
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!
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Sandra Mikush replied to the topic Dressing up for hospitals or appointments in the forum Diagnosis Information and General Questions 8 months, 3 weeks ago
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.)
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Sandra Mikush replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 2 weeks ago
Thanks, Carolyn! I’ve learned from all of you to be insistent and persistent.
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Sandra Mikush replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 2 weeks ago
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!
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Sandra Mikush replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 2 weeks ago
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.
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Sandra Mikush replied to the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 3 weeks ago
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 the…[Read more]
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Sandra Mikush started the topic Carbon fiber vs plastic AFO in the forum Mobility Aides, Assistive Technology and Medical Equipment 11 months, 3 weeks ago
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 similar…[Read more]
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Sandra Mikush replied to the topic How Has Your ALS Changed How You Exercise? in the forum Living With ALS 1 year, 1 month ago
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]
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Sandra Mikush replied to the topic Learn About Your ALS Progression – The Precision Medicine Program (PMP) in the forum Research Topics 1 year, 6 months ago
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.
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Sandra Mikush replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 6 months ago
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.
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Sandra Mikush replied to the topic Alternative Medicine and ALS in the forum Living With ALS 1 year, 9 months ago
Thanks, Mark.
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Sandra Mikush replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 9 months ago
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.
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Sandra Mikush replied to the topic Alternative Medicine and ALS in the forum Living With ALS 1 year, 9 months ago
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.
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Sandra Mikush replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 9 months ago
Great to hear about your experience in the Healey trial. I hope to complete the screening next week and get started.
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Sandra Mikush replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 9 months ago
Glad to hear of your positive experience, Tom. I’m going next week for Healey Platform screening.
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Sandra Mikush replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 9 months ago
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]
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Sandra Mikush replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 9 months ago
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?
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Sandra Mikush replied to the topic Alternative Medicine and ALS in the forum Living With ALS 1 year, 10 months ago
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!
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