Karl Schachtner
Forum Replies Created
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Well my hat’s off to both you and Amanda for the job you do! I always enjoy perusing the posts and replies here in this forum, and the excellent moderation you both provide is a big part of it.
Thank you! -
I completely lost the ability to speak several years ago. My arms and hands still work well enough to write and type (hunt & peck only). I primarily use a boogie board to communicate. I don’t bother to use the stylus that comes with it, I just use my fingernail to write on the screen and with the push of a button, it erases. Much better than a white board and no mess.
I also use a text-to-speech app on my phone but find it cumbersome to try and keep up with a conversation. I mostly use the app when I have an opportunity to “talk” to a group of people, and know ahead of time what I want to say so I have time to type it into my phone.
Recently I discovered that I can make phone calls with an IP (internet protocol) Relay service. It’s easy, I’ve used it several times when my wife hasn’t been available and I didn’t want to wait for her. You can use the service with any computer, tablet or smart phone that connects to the internet. I guess it was originally created for the deaf population and the federal government requires/contracts phone companies to provide the service free of charge! T-mobile is the company that currently provides the service (you don’t need regular cell phone service with T-mobile). Basically when you use the service, you type what you want to say, then a relay operator speaks exactly that to the person you’re calling, the operator hears their response and types it, you read the response on your computer. You continue to type back and forth with the operator while the operator speaks with the person you’ve called. I like the feeling of independence when using the service.
Cheers all! Merry Christmas!
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Hi, I’ve been on riluzole since my diagnosis over 5 years ago. I started on radicava almost 4 years ago. I’m blessed that my progression is so slow – lost my voice completely after about 1 year, got a feeding tube 2 years ago due to progressive swallowing problems but up until 1 1/2 year ago I was able to walk unaided, now I need a walker.
Whether my very slow progression is due to these medications or not, no one can know. I’ve never had any side effects and the medications are covered by insurance, so I’ll continue. Plus the infusion center where I receive radicava is convenient and close by, and all the nurses are so kind, it’s actually a pleasure! -
I also take it in a liquid form. It comes in a liquid suspension with Tudca, which is supplied to me by a compounding pharmacy, WellPack Pharmacy in Tallahassee, Florida, for $550. per month.
Funny thing about this. I was warned that it would be very, very bad tasting. But I had no idea that something could taste so bad! I gagged on it and immediately spit it out, no way I could swallow, plus it sticks in your mouth. I take it through my feeding tube. If I didn’t have the tube, I don’t think I could take it. -
Hi, I spoke to my neurologist about Amylyx AMX0035. She explained that it’s not FDA approved so it’s not available. But if I was really interested, there is a compounding pharmacy that would mix up the drug constituents to make something very similar to AMX0035. However, the downside is that since this is considered an experimental drug, insurance will not cover it, and it would cost about $500 per month. I decided it might be worth the price to try it for a while at least. A pharmacy technician called (spoke with my wife as I’m completely nonverbal) to setup the delivery and explained it was a liquid to be taken orally twice a day. Several times he warned my wife that it’s really bad tasting. I wasn’t deterred by the warning figuring I had tasted my share bad tasting medications, and how bad could it be.
I had no idea that it was possible for something to taste so bad! It made me gag, I couldn’t spit it out fast enough! On top of that it seemed to stick in my mouth, no amount of rinsing my mouth seemed to help! I couldn’t imagine how I’d ever be able to swallow this medication! My swallowing is compromised so about a year ago I had a feeding tube put in. I use it to supplement once a day and eat 2 meals normally. I thought I would just pour this liquid medication through my tube. This works but causes some complications, it tends to plug my tube. I need to use a syringe to clear it. I discovered a weird property of the medication, when it mixes with even a little bit of water, it turns into something like jello or soft wax. Plugs my tube and explains why I couldn’t rinse it out of my mouth!
It’s too soon to know if it works yet but I’ll let folks know how it goes.
Karl
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Paul, I’m 5 1/2 years since my diagnosis so, like you I’m not eligible for drug trials. But like you I’ve found observational studies to participate in. Makes me happy to think that I’m contributing in some way. My list is a little shorter than yours, but includes a couple of particularly interesting studies designed to investigate disease progression:
University of Florida – swallowing study
Mass General – Beiwe smart phone app
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I have sporadic ALS and also did frequent, intense, competitive exercise prior to my diagnosis. My disease has progressed slowly and I partly credit my condition starting out, and my continuing exercise since then. I was able to continue regular bike rides with a serious group for 3+ years. Now, 4 1/2 years from diagnosis, I’ve switched to a recumbent 3-wheeler as balance on my feet (not on bike) has become a big issue.
I don’t think exercise was the cause or that I’ll ever know the cause of my disease, but I’m definitely in the “use it or lose it” camp!