[john hamilton]

For me, with bulbar-onset ALS, I quickly lost my ability to speak. (I’m sure that may have pleased some!) But, no worries, I got a couple of Boogie Boards (<$20, each), online from Amazon. USe them many times each day. Sort of like an Etch-a-Sketch board, but really useful for writing!

[john hamilton]

I , too, am now a head-drooper, and would be very interested in seeing a picture of your homemade device. Your good narrative makes it sound amazingly complicated, but, hey, whatever works, right?

I tried a Headmaster neck brace ($150) and a couple of foam braces @ ~ $!0. I use the foam a lot. The front creeps up to my mouth, but still keeps me from otherwise choking, due to my now low-hanging chin. I angrily returned the first Headmaster brace because it was a size too big. BUt last week I caved and ordered a smaller size Headmaster with hopes that I at least won’t see double looking up, due to my droop.

I read we PALS are each one in 10,000. Gotta keep a stiff upper lip; or at least try to keep our chins up.

[john hamilton]

Interesting, I guess, but, does mapping of population density tend to also follow the same clustering as power stations?

Me, I’m curious about the incidence of ALS diagnoses following shortly after Moderna vaccinations. I have casual data that implies about six ALS-ers were diagnosed as having ALS shortly after being vaccinated. IF not a trigger, perhaps an accelerant? Don’t suppose the FDA would have any clue about that though, right?

[john hamilton]

I had PT for about 6 months addressing symptoms before I realized they were mostly ALS -related.  But I enjoyed the trek to NovaCare and, besides, the therapist was cute! I did learn a few things from the sessions, and continued doing certain exercises at home until recently, when I was just too pooped to do them any more.

[john hamilton]

Two thinks:

1) When we click on any link, the page doesn’t roll down far enough for the link info to be visible. No big deal; just a bit clutzy.

1) Make it more straight forward for the non-techies—like me—to start a new topic.

Cheers.

[john hamilton]

81-year-old me? I focus on calories. Stlll losoing weight. Just can’t get enough calories. Lost about 25% of my 200 lbs. since January. Now, having mostly Progresso soups—some with thickener gel, Ensure strawberry drinks, and Quaker hot cereal—Oh, and lots of high-fat ice cream, and … cheesecake!

[john hamilton]

Gilad you started this topic! I’m due for a PEG consult next week. Guess I’ll be asking about this issue. Thanks.

[john hamilton]

Hey, I’m old, 81, and won the bulbar-onset ALS. Soon to get a PEG. Nothing extraordinary, but could help slow my weight loss. Had a good life, but not in any hurry to leave it! Who knows, maybe some miracle cure will suddenly be available; if not, oh well. And, yeah, I take Radicava ORS (free, essentially!). Meanwhile, I use a $20 Boogie Board to communicate with. Works pretty neat, I think.

[john hamilton]

I just got the “latest” booster last week, but I’ll bet it wasn’t the “4th” one. I’ve lost track of how many shots! Wouldn’t that be ironic if I croaked from COVID and not ALS…

[john hamilton]

For me, planning for long term care is something I prefer not to talk about! It’s tough enough—actually kind of overwhelming, I think! And to broach the subject with my souse would simply mean more agita about something that may or may not be needed! There’s emptying the house, selling the the house that we’ve had for 50+ years, selling the cars, answering sibling’s and other relatives questions. Ugh! I’ll cross that bridge…later, if necessary.

[john hamilton]

Hmm, I go to Jefferson’s ALS clinic once every three months. Much less stressful than what you describe, but also much less thorough, I think. Sure, they have me do certain “gyrations” and ask me questions, but, Hey! I kind of look forward to the events! It’s all just palliative stuff. I suppose it gives them info about my ALS progression rates. To me, the best part is being able to e-contact them as often as I wish, to ask questions about my condition.

[john hamilton]

That’s good to know! I can feel my legs seeming to get a little more clumsy each day.  Was also concerned about how long it would take to get a chair. Glad to learn there’s a “Team Gle_a_son” for PALS-ers!

[john hamilton]

“I’m not dead yet by the way.” Boy! How many times have I muttered that to my wife! And I’m not even in a wheelchair…yet.

[john hamilton]

Shucks! I just tried the NYT website that you offered, but it said, “You’ve reached your limit of free articles”

[john hamilton]

I did look into Relyvrio, but learned that my out-of-pocket cost would be roughly $9,000 a month [!]—for, they claim— possibly a few more months of survival. And that’s after Medicare and Humana coverage!! The lousy taste wouldn’t bother me, since I’m a recent PEG-tube feeder.

[john hamilton]

My two cents, contact https://www.radicava.com/patient/journeymate/

You might be able to get $!5K/year applied to Radicava.

[john hamilton]

Interesting, Dagmar! Unfortunately, if it was my message that you’re referring to, I must have accidentally zapped it when I tried to edit it later!

[john hamilton]

We just checked out-of-pocket cost with Humana.  Get this: Over $8,000 a month for Relyvrio! And what does it buy you…they say maybe a few more months at the end, i.e., the worst part of the ALS progress! With my year-old bulbar-onset ALS diagnosis, I’m as scared as anyone with ALS, I guess.  But, golly, I don’t know if I really want to sign up for it.  By comparison, Riluzole—which I take— is cheap. About $70/month OoP; and Radicava—which I also tke—is, essentially free after JourneyMate helps out!

 

But I’m open to hearing why  I shuod spend $8,000+ each month for promises of delayed “progress”.

[john hamilton]

Just a coincidence, probably, but I (now 81) had a brain bleed about two years ago, then diagnosed with bulbar-onset ALS about a year ago. Could there be a cause-and-effect connection betwen brain bleeds, strokes and ALS—especially with old folks?

[john hamilton]

Thank you Dustin! Very helpful data for getting started.  I can still walk.  No falls….yet.  But do wonder how long it takes to get a chair once ordered.  Nice to know that  much of the cost will probably be covered, one way or another.

Best.

[john hamilton]

PEG tubes…good point!  I’m deliberating about getting one, but hear a number of caveats, like, Oh, you’ll have to go back to the hospital often to get the tube unclogged; or, Gee, if you wait too long you won’t be qualified to get it; or, You need a special doc…can’t just go to the ER and expect to get a good procedure—that’s the worst option, they say! Oh, and, You’ll probably still lose weight, even if you get a PEG.

So I wait.

[john hamilton]

Nicely said, Jerry!

[john hamilton]

According to Julies Blog, Several studies show that the prevalence of ALS is higher in athletes who are exposed to repetitive brain trauma in their sport. Compared to the general population in the United States, mortality from ALS is more than four times higher in NFL football players. Several studies have shown that the odds of dying from ALS are two to ten times higher in professional soccer players in Europe. One study found that the longer a soccer player played professionally, the greater their risk of dying of ALS.

[john hamilton]

Well, I was diagnosed with bulbar-onset ALS last year, at the “young” age of 80.  Felt great up ’till then, pumped a little iron, swam, road-biked—even did self-directed rides in UK and France! But, hey, still breathing, no pain, just tough eating some things, and get tired super fast! My mind’s still fine, but the bod’s definitely fading: down from 206 to 173 in about a year.   But no pain! And certainly better off than many others my age, and certainly better off than some of those poor folks in Ukraine!

Hope I make it to 86, as Sandra’s dad did!