Carol

I wish I knew about the Facebook ALS groups.  I was diagnosed during covid and attended ALS clinics but until I found those Facebook groups 18 months after diagnosis I didn’t know it would take my speech and swallowing and breathing; long before diagnosis I was losing use of my limbs.  It just didn’t occur to me to get educated on the i…[Read more]

I’m so sorry. But I had respiratory therapy and Trilogy for 6 months and had to give it back. There was no pulmonologist so no one could adjust it; I think due to covid.

Carol, St. Paul, Minnesota

I had no idea what I had but an orthopedic PT I saw thought it was neurological. I made up Parkinson’s symptoms and got PCP to refer me to neuro. She hammered my knee again and said “how did I miss that?”  I picked neuro my friend’s son, an MD found for her after he fired 2 neuros. This neuro suspected PLS; she was dead right. Then I went to Mayo…[Read more]

<p style=”text-align: left;”>What does fALS stand for? Then I might understand the rest…</p>

Diagnosed with ALS May 2021 my story dittos much of this with the plot twist that I was born in 1952 within 2 years of my mother having bulbar polio.

Based on recommendations on this site I asked my ALS medical team about Theracumin. They advised against taking many supplements because they suppress appetite but said ok to try Theracumin, citing a recent study.  3 days on it completely knocked out my appetite.  Which prompted me to inspect the shelf full of old ‘supplements ‘ I still had from 5…[Read more]

Limiting salt produces urine output during daytime. Salt = water retention & nighttime peeing

I see i wrote this on my caring bridge today:

In music, practice and rehearsals prepare us for the performance, in the audience’s eyes but in life, especially handicapped, it’s always opening night … try not to fall on your ass unless it’s in the script.

I don’t have any GI issues but just thinking about cumin or black pepper irritates my stomach and esophagus!

Wayne, I’m so very sorry about your son.

My neurologist says his patients seeking stem cells abroad come back with infections. I live in Minnesota have seen 3 neuros there; am on list (maybe). They’ve (Mayo) been very dysfunctional especially since covid and their new computer system.

I don’t think it’s possible to discuss supplements without first identifying all one’s symptoms & other health conditions. For example I was on low dose blood pressure med & one day forgot to take it & for first time in 3 years I was not dizzy. Never took it again. Tried Riluzole for 3 weeks; couldn’t get out of bed til afternoon my head was so…[Read more]

<p style=”text-align: left;”>The problem I have with almost every post here is that we never are told anything about where the inquirer lives. What country? If U.S., what state? When I hear “my doctor ” I want to ask “how much training post-residency?”. I doctor in Mpls/St. Paul, where there are 4 physicians with the qualifications to diagnose…[Read more]

Careful about recommending meds. 10 days ago I stopped both my bp meds that I’ve been on for almost 3 years. Totally by accident I forgot to take one and my function improved so doc & i decided try going off both. I am no longer dizzy. Today in PT was able to do bunch of moves haven’t been able to do for 2 years.

I helped 3 parents (F, M, MIL) leave this world and I wish I could have just been a daughter. Now I have ALS. So…my end-of-life agent is a woman who has been my husband’s and my good friend for decades. She will do the heavy lifting, freeing my husband, son’s, siblings, and other friends to just be my loved ones.

When I’m eating that’s all I do. If I try to talk, or even listen to ongoing conversation I will choke. I haven’t been to a restaurant in over a year; have no interest in that challenge. When family or friends come over for a meal, I take a few bites, leave the rest for later, and focus on the conversation.

Once in June, watching a baseball game.  It was Lou Gehrig’s Day

I swear by pool therapy, where I move without pesky gravity. I’ve been a life long swimmer so I take to it like a fish…And I wonder why it isn’t mentioned much in these blogs. My German friend says medical pools are used a lot more there.

I sang most of my life; am 66, diagnosed w ALS 5/21 & am now experiencing dysarthria. I’ve had a ton of voice lessons. Recently I have added singing exercises to my twice weekly hour + long workout with a PT in a therapy pool. The PTs are totally intrigued. Will see where this goes.