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]

Oh, my….I certainly hope not or we’re both in the same place.

Nicol, I’m at work right now, so I can’t go into any length. I just want you to know that the fact that you can still eat and communicate verbally, albeit not the way you used to, says to me that you are not in an end stage.

I don’t know the definition of end stage, but I perceive…[Read more]