Clint Williams
Forum Replies Created
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Hi Dagmar, Great topic, especially for the father of teenaged girls. I can’t reduce stress enough! What types of body scans do you use? I’ll be in Scottsdale stopping by BioMed in November for thermography scan as a diagnostic tool. Please clarify therapeutic scans you are referring to. Might you also include sauna and massage at stress-reducing therapies? Thanks, Clint
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I’m taking the 3Rs plus Neudexta and a handful of supplements to try and slow progression. I can’t believe how familiar all these stories sound. I too became symptomatic 2 weeks after second Moderna covid Vax. Coincidence, or not, I’m doing all I can to survive longer for my family. My Rs cost me about $0. My Cigna PPO pays for everything except minor copays and Relyvrio. For that, I was contacted by the Amylyx Care Team who granted the medicine to me. Try them. I also have copay assistance from Radicava. My key move was enrolling with Synapticure, who advocates for me every month. I pay out of pocket to see their Neurologist, but the care nurse, genetic counselor and drug advocacy are free!
As to whether I’m slowing anything, who knows. Bulbar symptoms are worsening and now me neck and upper body are weakening. Call me bobblehead!
Regarding HealingALS, Dagmar, they fully qualify their information and encourage you to do what resonates with you. Access is free. They have set up a database for tracking treatments and declines (or progress) with hopes of piecing together a regimen that is helpful. At least they provide hope and actionable items, which allopathic doctors generally do not. They promote some quackery also, but we’re all trying to learn how to live a better life. Tish, Scott, Heather, Rita, Dr. Cowden and the rest at HealingALS should be commended.
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Hi, I developed moderate dysarthria within 2 weeks after completing the first round of the Moderna Covid vaccine. My ALS diagnosis was offered 5 months later in October 2021. Can’t ignore the timeline, but I continued to get the next 2 boosters as recommended by medical professionals. At this time I’ve decided to stop Covid vaccines and I’m detoxing for metals and other environmental contaminants according to protocols described on healingals.org. Homeopathic doctors associated with Healing ALS say I can detoxify my body of the vaccine. Meanwhile, my bulbar symptoms have continued to worsen, and I’ve tested positive for ATXN2 expansion, a possible genetic factor. I’m taking the 3 Rs, as well as BIIB105, a clinical trial drug from Biogen where I’m presently in the open label stage. All medical professionals say there isn’t enough data to support a connection with the Covid vaccine. Hopefully, I’ll live long enough to rule this out as a cause for my ALS.
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Lisa, I’ve seen in person the presentations from Lisa Jamarillo at BodyScience and it’s very compelling. However, my assessment is in line with Amanda’s – too costly and somewhat suspect on the marketing side. I’m in the ALS Clinic at UCSD (monitoring my passing at best) and I’m also participating in a clinical trial for my gene mutation there (BIIB105). The BIIB105 trial pays for any and all expenses for me (or you) to participate – maybe find a trial? Synapticure has nurses, doctors and specialists that helped me identify the trial in my own back yard where UCSD ALS Clinic had not done enough gene testing. I’ve also been working with Tish and Scott at Healing ALS. I find their assessment methods (tests on body and home) to be very helpful in ruling out environmental factors, improving diet/supplements/other protocols to maintain quality of life, and most importantly, deciding what to do for the safety of my extended family – I do exhibit the ATXN-2 gene mutation though nobody that I know of in my lineage developed ALS except me. Thanks for the backup Synapticure! I recommend you look at the HealingALS.org website, liostenm in on some Zoom meetings and as they say “do what resonates with you.” Body and environmental sampling can be done at home and sent overseas if necessary to reputable labs (see Healing ALS for sources). I don’t believe a trip to Body Science is the best use of your time and resources. I pray we find a cure soon, but in the meantime, try not to panic, take ani-anxiety meds, do your research, do what resonates with you and enjoy life – I suspect for all of us that nature will eventually take it’s course until we find a cure. Best wishes for a long and rewarding life experience!
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This is a great question. I’m sure one size doesn’t fit all. I’ve been diagnosed with bulbar onset for over a year with over 2 years of symptoms. We’re trying all the meds, but I can still sense the progressing symptoms. So far, I’ve only looked at my prior directive and it still seems valid, but times are a changing. I’m watching my step-father goes through the process that awaits me at some point in the future. He’s now in hospice care, not eating or drinking, and the end is near. Most striking is the love and support that surrounds him as he slowly slips away. My new plan is to have a major cardiac event and go quickly, but this is unlikely given the process of ALS. I know I don’t want a trach, but I can hardly speak anyway, so I guess I will wait for lung infection or malnutrition in the end. It’s hard to translate this to legalese, so I plan to speak with my wife, doctors and lawyer in order to document my wishes. Seems like I still might have a couple years, so I remain flexible for now.
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I too regret not banking my voice earlier. It was never even mentioned by my Neurologist or anyone at the UCSD ALS Clinic. My speech was too impacted by the time I made my recordings – sounds too robotic. Now I’m working with Bridging Voice to improve on the Acapela voice that was recorded. In fact, BV is collecting old voicemails from my friends to improve my synthetic voice. No cost and fingers crossed. Record as soon as you have a diagnosis. Team Gleason will do it for free!
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Yes, insurance and medication were my first obstacle also. I had good private insurance that approved everything and then my company changed providers, so we started over again on approvals right in the middle of my diagnosis and start of treatment. I somehow found Synapticure and they became my noisy advocates. They’re specialists include care coordinators, neurologists, dieticians, voice preservation and AAC, geneticists, etc., etc. My guardian angels.
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My goal for any trial is to first utilize the best available medicines, then join a trial that is targeted at my type of ALS (Bulbar). Why the University Doctors are more concerned about the “purity” of their guinea pigs is beyond me – it’s a big ask to stop taking something that prolongs your life for the betterment of mankind. In fact, UCSD ALS Clinic told me that being on Riluzole and Radicava were OK for their trials and offered to get me “stable” on RadicavaORS before signing up for a trial, and then failed to deliver the Rx. Thankfully, I found another doctor that followed through. Now, I want to get “stable” on RadicavaORS and AXN0035 before considering a trial. Is this selfish? Or just sensible?
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RadicavaORS is commercially available, but at a cost$$. There are copay assistance programs from the manufacturer and others, and commercial insurance offers good coverage in my case.