@smikush
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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 2 hours, 42 minutes 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 9 hours, 36 minutes 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 3 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 3 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 3 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 3 months, 3 weeks 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 3 months, 3 weeks 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 3 months, 3 weeks 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 3 months, 3 weeks 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 3 months, 3 weeks 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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Sandra Mikush replied to the topic Alternative Medicine and ALS in the forum Living With ALS 3 months, 3 weeks ago
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]
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Sandra Mikush posted a new activity comment 4 months, 2 weeks ago
Thanks. I saw those and found them helpful. My husband and I are working through sharing my diagnosis with our family and closest friends now. A cute story: My youngest son is high-functioning autistic, so I used the concept of ALS and MND as a “spectrum” similar to Aspergers/Autism when I explained my diagnosis. I told him I had very early sta…[Read more]
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Sandra Mikush posted a new activity comment 4 months, 3 weeks ago
Thank you for your welcome and for moderating this forum. I’m so sorry that your family has such a history with ALS and am grateful for your volunteering for research. We thought my father had sporadic ALS, but now I’ve begun the genetic testing and my siblings and children are concerned about what this may mean. When I get my results, I may reach…[Read more]
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Sandra Mikush posted a new activity comment 4 months, 3 weeks ago
Thanks so much for this forum. I’ve also enjoyed your website and have shared your book with several family members. I feel like I’m drinking from a fire hose as I try to take in so much information in my first week post-diagnosis. My main questions are about how much to share and when about my diagnosis. My only outward sign of ALS is a weak left…[Read more]
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Hi Sandra, I understand your hesitancy in sharing your diagnosis with friends and family. I think back and can see my own hesitancy was from feeling embarrassed (how silly of me!), unsure of what to tell them, and not wanting their pity. Looking back, I realized that I needed to accept my diagnosis, it was up to me to show others I was doing OK…[Read more]
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Thanks. I saw those and found them helpful. My husband and I are working through sharing my diagnosis with our family and closest friends now. A cute story: My youngest son is high-functioning autistic, so I used the concept of ALS and MND as a “spectrum” similar to Aspergers/Autism when I explained my diagnosis. I told him I had very early sta…[Read more]
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What a thoughtful and unique way to explain your ALS to your son!
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Sandra Mikush became a registered member 5 months ago
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Hello Sandra,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
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Thanks so much for this forum. I’ve also enjoyed your website and have shared your book with several family members. I feel like I’m drinking from a fire hose as I try to take in so much information in my first week post-diagnosis. My main questions are about how much to share and when about my diagnosis. My only outward sign of ALS is a weak left…[Read more]
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Hi Sandra, I understand your hesitancy in sharing your diagnosis with friends and family. I think back and can see my own hesitancy was from feeling embarrassed (how silly of me!), unsure of what to tell them, and not wanting their pity. Looking back, I realized that I needed to accept my diagnosis, it was up to me to show others I was doing OK…[Read more]
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Thanks. I saw those and found them helpful. My husband and I are working through sharing my diagnosis with our family and closest friends now. A cute story: My youngest son is high-functioning autistic, so I used the concept of ALS and MND as a “spectrum” similar to Aspergers/Autism when I explained my diagnosis. I told him I had very early sta…[Read more]
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What a thoughtful and unique way to explain your ALS to your son!
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Hello Sandra, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I l…[Read more]
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Thank you for your welcome and for moderating this forum. I’m so sorry that your family has such a history with ALS and am grateful for your volunteering for research. We thought my father had sporadic ALS, but now I’ve begun the genetic testing and my siblings and children are concerned about what this may mean. When I get my results, I may reach…[Read more]
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What a thoughtful and unique way to explain your ALS to your son!