Jonathan L Maddock

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]

Yes.

Yes, yes yes. Yes.

Sincerely,

Yes

Pics of my AFO I’ve been wearing on my left foot since Fall of 2019:

https://photos.app.goo.gl/hiTiVMC7Zy4XW5gb9

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]

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]

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:

Jon Maddock: All In Against ALS

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]

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.

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]

Yes! I always do.

I had mine yesterday.

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]

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]

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

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]

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?

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]

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]

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]