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Jonathan L Maddock started the topic In Loving Memory of Jonathan Maddock in the forum In Loving Memory 6 months, 2 weeks ago
Jon passed away December 19th, 2021. Our hearts are still sad, and he will be forever missed. He was a rock for us and brightened every day with his humor and wit. He was one of a kind.
With love,
Karen & Kelsey (Wife & Daughter)
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Jonathan L Maddock replied to the topic Getting involved in clinical trials in the forum Living With ALS 2 years, 3 months ago
Curtis,
Have there been any noticeable changes for you since you started the zilucoplan?
I also was randomized to zilucoplan, but started on December 18th out of Mass General Hospital Healey Center. It’s only been a short time for me, so I didn’t expect to feel any changes. I hope it at least slows it down. I’d like to go on the extension…[Read more]
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Jonathan L Maddock replied to the topic Vaccine on the horizon in the forum Coronavirus (COVID-19) and ALS 2 years, 3 months ago
Yes.
Yes, yes yes. Yes.
Sincerely,
Yes
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Jonathan L Maddock replied to the topic Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources in the forum Living With ALS 2 years, 4 months ago
Pics of my AFO I’ve been wearing on my left foot since Fall of 2019:
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Jonathan L Maddock changed their profile picture 2 years, 6 months ago
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Jonathan L Maddock replied to the topic Questions for your medical team in the forum Diagnosis Information and General Questions 2 years, 6 months ago
HORRIFYING!
The neurologist I went to took me 3 MONTHS to get my first appointment. Then ANOTHER 3 MONTHS to get on his schedule for an EMG.
He was dead on in his prognosis after the EMG, but all he said was, “You have ALS. You’re a smart guy, I wish you luck:”. That and he said I’d need a second diagnosis from another source. That was the…[Read more]
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Jonathan L Maddock replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 6 months ago
Isabelle,
I’m sorry to hear that your husband is morose about the situation. He has every right to be, but the mindset is wrong. I think getting him to a therapist and discussing the situation with a professional would be the best way of getting him to turn back toward life and enjoy what he has.
My doctors are regularly asking me if I’m…[Read more]
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Jonathan L Maddock replied to the topic NPR story on AMX0035 in the forum Research Topics 2 years, 6 months ago
I had a blogger friend, who writes about my home town, put out an article to try and get more signatures for AMX0035 early approval:
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Jonathan L Maddock replied to the topic Healey ALS Platform Trials in the forum Research Topics 2 years, 6 months ago
You should ask your neurologist if they can assist in your entry into a prescreening. The platform trial is “popular”, and entry, especially at the start-up, might be problematic.
I have done the above, and hope to be accepted into a prescreening, but there is no guarantee.
As more sites open-up, hopefully there will be less admittance…[Read more]
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Jonathan L Maddock replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 6 months ago
Lowell,
Same for me. I really can get difficult to understand, and other times I’m spot-on. I just never sound like I used to.
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Jonathan L Maddock replied to the topic To voice bank or not voice bank in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years, 6 months ago
I spent some time recording phrases listed in a three ring binder that Childrens Hospital in Boston gave me. BTW, I’m 65…. MGH gave me a referral there and CH of B set me up with a recording device and an account for uploading.
So over the course of five Saturday mornings I recorded over 3100 phrases, exclamations, questions, etc. Even a clip…[Read more]
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Jonathan L Maddock replied to the topic Are you getting a flu shot this year? in the forum Living With ALS 2 years, 6 months ago
Yes! I always do.
I had mine yesterday.
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Jonathan L Maddock replied to the topic Information or results on Radicava (Edaravone) in the forum Research Topics 2 years, 8 months ago
I was diagnosed in on July 30, of 2019, second opinion at MGH one week later. Started Radicava Sept 20, 2019.
Not knowing what the progression would be without it, I have only the statistics to go by. That’s good enough for me to continue. It helps that my insurance pays the freight.
I do think that when I’m in an infusion part of the cycle,…[Read more]
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Jonathan L Maddock replied to the topic Information or results on RILUZOLE in the forum Research Topics 2 years, 9 months ago
When I started taking RILUZOLE in August of 2019, I also started Neudexta at the same time. That being said I’m not sure which caused it, but a few days in I got dizzy and felt slightly nauseous, BUT, this was only for two or three days. Since then I have continued with both those meds, and added Radicava starting in October of 2019.
It’s…[Read more]
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Jonathan L Maddock replied to the topic Do you have difficulty eating or drinking? in the forum Living With ALS 2 years, 9 months ago
Dagmar, the Thick-it works like a charm. Easy-peasy. It really helps with swallowing small pills, and when I’m especially tired in the evening.
And as a side note, to get more calories I’ve been adding instant milk to the Special K protein drinks I buy and sending it through the blender. I’m on a 3000 calorie per day quest.
Jon
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Jonathan L Maddock replied to the topic Do you have difficulty eating or drinking? in the forum Living With ALS 2 years, 9 months ago
Hey, Dagmar….great advice on the Thick-it. I have immediately placed an order through Amazon. Small pills are a pain to swallow without something thicker. Thanks!
I’ve taken to mincing my food up in a mini 3.5 cup food processor. Works like a charm. A few weeks back I was eating “normal” food, and came close to choking. It scared me, and now…[Read more]
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Jonathan L Maddock replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 11 months ago
Sorry, I just looked to see that the copy-job I did came through in HTML language.
All you need to search for and click on is:
Show 54 study locations
Did you find it, Owen?
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Jonathan L Maddock replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 11 months ago
Owen,
It’s hard to find the locations and contacts listings. Here’s what you need to look for: “Locations” “EXPAND tr-showAndHide” title=”Show 54 study locations”></span>
<div class=”ct-header3″>Locations</div>
<span id=”EXPAND_CONTROL-Locations” class=”EXPAND tr-showAndHide” title=”Show 54 study locations”>Show 54 study…[Read more]
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Jonathan L Maddock replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 11 months ago
If you go to the link in my comment above, there is a place to click that shows all 54 sites and has a contact name and email address for each one. I reached out to four of the contacts, and got replies back within a couple of hours from each one.
They all said something like this: “I’ve added you to my list of patients who are interested and I…[Read more]
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Jonathan L Maddock replied to the topic CNM-AU8 Trial in the forum Diagnosis Information and General Questions 2 years, 11 months ago
CNM-AU8 is regimen “C” listed on the Healey Center Platform Clinical Trial https://clinicaltrials.gov/ct2/show/NCT04297683?term=Platform+Trial&cond=ALS&draw=1&rank=1
I’m virtually standing in line at four of the trial locations, waiting for enrollment to open-up. It might be May, or June before that happens. Maybe later, who knows…
In…[Read more]
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