Jonathan L Maddock

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]

This is such a weird disease in the way it progresses differently for everyone. My tongue (bulbar), left foot/leg are most affected. right leg somewhat. So far my torso has been excluded. I have fasciculations everywhere. My feet do involuntary jerks a few times each night as I’m trying to get to sleep.

Radicava infusions seem to slow the jerks &…[Read more]

I started Radicava September 2019, initially with a PICC line, and a chest port since December. I prefer the chest port. It interferes less with life in general, and is easier for showering.

I do my own infusions at home. I use a local hospital to access the port, and I de-access it myself.

Radicava does seem to improve talking/walking slightly.…[Read more]

I have read of various life-styles, head trauma, ethnicity, sex, etc that increase the chances of acquiring ALS. I seem to hit on a few:

1.) I’m 40% Irish decent. I read that Irish & Italian descents are more prone to ALS

2.) Exercised regularly my whole life, sometimes to extremes.

Bicycling, running, cross country skiing, down hill skiing,…[Read more]

Two thumbs up for MGH . I am seen by Dr. Katie Nicholson and a host of others in a support team that is super knowledgeable. I feel confident that I am in the best place possible for the treatment of ALS.

I was aware of the possibility of a reversal and the 45 documented cases. It has given me more optimism for a cure, and a general enthusiasm about my own health. IMO new clinical trials are going to take a fast track, leading to a more chronic (non-fatal) condition for many. A short step away from reversals.

I fully believe that this decade will…[Read more]

My L4-L5 stenosis was in fact concurrent with the first signs of ALS. I did have pain in my left foot along with pins & needles feeling, definetly caused by the stenosis. The lisping and slurring had nothing to do with the stenosis! When that started, no one else could hear it except for me and my wife (January 2019, one year ago).

I went…[Read more]

Prior to symptoms & diagnosis I was running 4 miles 3 to 4 times a week. I have a slow progression ALS, and I still power walk 2+ miles several days a week (I use an AFO on one leg), and 1/2 hour of stretching each day. I have an elliptical trainer (owned prior to diagnosis), but I’d rather walk outside until I can’t. Eventually I’ll get a…[Read more]

In September of 2018 I was getting ready for a 5K run for charity, and noticed that I no longer had the stamina I had only a few weeks ago. Also noticed a different sound to my gait as one foot slapped down instead of rolling from heel to toe. By Christmas I had slightly slurred speech, although mostly imperceptible to those around me.

I went to…[Read more]