Sandra Mikush
Forum Replies Created
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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 with this type. I use a Thuasne SpryStep. It fits great in my sneakers and hiking shoes and didn’t even require a larger size. If your PT recommends an AFO, make sure you are clear about what activities are important to you so that you get the right model.
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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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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 idea of an AFO that allows me to be active for as long as possible. I’ve tried pickleball with my plastic AFO, and it’s ok, but hiking on hills is really awkward.
Did you get fitted for an AFO through your ALS clinic, or did you go to an orthotics professional? Is it possible to try different forms to see which provided the support you needed?
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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 push-ups and planks as my left arm gets weaker, and I’m tiring more easily during some of the leg exercises and hiking. I’ve cut back on some of my repetitions, and my hiking is much slower, using poles to give me added balance. I appreciate the idea of breaking up my exercise routine into shorter segments.
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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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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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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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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 last Clinic visit this week, I asked about acupuncture and was impressed that Dr. B encouraged me to pursue that and share his report on the ALS Untangled website. Dr. B treated my dad late in his progression, and his hopeful and realistic approach made a huge difference to my family. I’m so grateful for those of you who are advancing a positive approach to living with ALS.
Sandra
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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 been getting private insurance through the ACA marketplace, I technically was breaking the law by being on Medicare (ant least on paper) and ACA at the same time during the previous year. It’s been a nightmare trying to resolve this issue, and we may be liable for repaying our ACA subsidy to the tune of more than $18,000.
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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 bitterness taste buds. I also put it in a jar with a lid so I can shake it up and better dissolve the powder. Good luck!
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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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Thanks, Carolyn! I’ve learned from all of you to be insistent and persistent.
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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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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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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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Thanks, Mark.
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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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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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Glad to hear of your positive experience, Tom. I’m going next week for Healey Platform screening.
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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 yrs from symptoms or diagnosis.
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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!
