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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 program after the trial, but I have nothing to base that on. Just a feeling.
I hope you do well.
MemberNovember 25, 2020 at 1:40 pm in reply to: Ankle-Foot Orthosis (AFOs): Your Questions, Tips and Shared Resources
Pics of my AFO I’ve been wearing on my left foot since Fall of 2019:
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 BEST advice he gave out that day. I had no idea what ALS was going to do to me. He didn’t offer me any ideas. I drove back to work, sat in the parking lot and Googled ALS. Dumbfounded. Didn’t sleep for A WEEK (or at least not well).
A WEEK AND A DAY after the first diagnosis I was being seen at the Mass General Hospital Neurology Dept. I Even saw Dr. Merit Cudkowicz stop in the room I was in. I recognized her from the online information about MGH.
I was in the right place. I should have gone there from day one. Their knowledge and empathy are unsurpassed. It’s a one-stop shop for PT, OT, Speech & Swallowing, clinical trials, and near immediate responses from the patient portal messaging center.
Needless to say, my diagnosis was horrifying that first week. I’m doing great, now , 1 year and two months later.
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 doing OK and how is my attitude. I am so fortunate to have a faith and belief in a higher power. That gift has bouyed me.
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:
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 pressure.
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 of me playing trombone.
I’ve uploaded about a third of that. The uploads take a long time.
I haven’t tried, nor needed it yet. I hope not to, but who knows?
Dagmar’s opinion is valid (when is it not?). So supposedly when my voice banking is married up to whatever current software is available, the synthetic voice will sound something like me. Some of the things I recorded might just get played back exactly as I said them, no need to synthesize what is already perfect, right?
I’m not sure if I wasted time, or made a worthy investment. But it wasn’t that much time to do it, so I thought it was worth giving it a shot.
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, that fasciculations are somewhat diminished & cramping happens less often. Not much else different.
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 impossible to figure out if they are helping to prolong my life or not. I have to go with the statistics that say that they do.
I also continue to stretch and walk, although both are getting more tiring more quickly.
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.
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 I’m much more careful about what I’m eating.
I try not to drink out of a bottle anymore, I got tired of spraying the place. I sip from a glass, put my chin down, then swallow.
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>
<span id=”EXPAND_CONTROL-Locations” class=”EXPAND tr-showAndHide” title=”Show 54 study locations”> Show 54 study locations</span>
Click on the that, and it will expand to show you a lot more. They really bury it, and it’s unobvious. Let me know if this helps.
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’ll reach back out to you when we’re ready to get started. Feel free to check back in with me at any time as well if you want an update on when we might be ready. Right now, I’m hoping for June.”
<p style=”font-weight: 400;”>It feels like I’m waiting in line, anyway.</p>
My contact at Mass General Hospital said, “All sites are autonomous in how they will begin their enrollment process. I know you live in NH so please reach out to any of the other sites close to you including one in NH and two others in MA so that you have covered all of your bases. We do anticipate much interest in this trial and want to give everyone opportunity to obtain a screening spot if they meet criteria. We expect we will hear from many, many people initially and will work very hard to enroll as best we can in a systematic way so that we run a good trial and obtain solid data.”
She was very happy for me when I told her I had made contacts. I feel like this is a train I want to get on, and if I can’t make it at one station, I’ll try the next. When I mentioned this to my neurologist, she thought it was a great proactive thing to have done, but also said she really would like it if I could stay at MGH for the trial because of a couple of things. One, we could have appointments on the same day saving me travel time. Secondly, has a sincere interest in me, and can follow what’s happening more closely. I hope I can, too.
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 any event, I just had a virtual appointment with my neurologist at MGH this morning, and she has said that she can think of nothing that should stop me from being selected for the trials, other than too many qualified people. Since I’m close enough to four of the testing sites, I’ve given my information to all four. Hopefully I now have better odds at being selected.
So, to answer your question, maybe I’ll be in a trial for CNM-AU8, but I won’t know for some time. Good luck to you! If nothing else, you’re getting some gold to wear.
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 this as needing help with everything you want/need to do.
Keep up your optimism. One day at a time.
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 & twitching down, but only on the days I’m infusing.
I just bought some magnesium pills. Thanks for the tip….I’ll give it a try.
MemberMarch 5, 2020 at 5:52 pm in reply to: Radicava? – – What advice, comments or tips do you have?
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. I’m taking it for the long haul and slowing of progression. That’s hard to assess, but my insurance is paying for it, so bring it on. Anything to give the miracle discovery more time to happen!
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, inline skating, figure skating, sailing…
3.) Two known concussions. One in my 20’s when I was hit by a car while bicycling. Second one in 2016 when a car passed illegally and hit my car head-on.
I’m turning 65 in March 2020 & was diagnosed July of 2019. Symptoms had begun in August of 2018. My hunch, and only my hunch is that the car crash/concussion in 2016 was the trigger point. After the accident it took a couple of months for my ability to concentrate to become normal. I had nerve damage that caused my eye pupils to now always be of different size (Horners Syndrome).
Who knows what mysterious concoction of circumstances caused the ALS? Someday it will be more identifiable.
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 prove a major turning point. God bless to all, and I pray for you to hold on while the miracle is on our doorstep.