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Carol

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@lawcarol

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    Carol replied to the topic Where do you start? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 10 months, 1 week ago

    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]

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    Carol replied to the topic Pre-fALS Clinic Visit in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 2 months ago

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

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    Carol replied to the topic Why is ALS so difficult to diagnosis? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    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.

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    Carol replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 1 year, 3 months ago

    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]

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    Carol replied to the topic Share your tips for dealing with embarassing "bathroom" topics in the forum Living With ALS 1 year, 3 months ago

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

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    Carol replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 3 months ago

    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.

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    Carol replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 4 months ago

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

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    Carol replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 1 year, 4 months ago

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

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    Carol replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 1 year, 4 months ago

    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.

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    Carol replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 4 months ago

    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]

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    Carol replied to the topic Dude about diagnosis in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 4 months ago

    <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]

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    Carol replied to the topic No longer eating by mouth in the forum Living With ALS 1 year, 5 months ago

    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.

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    Carol replied to the topic End of Life Topics in the forum Living With ALS 1 year, 5 months ago

    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.

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    Carol replied to the topic No longer eating by mouth in the forum Living With ALS 1 year, 5 months ago

    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.

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    Carol replied to the topic In the Media in the forum ALS In The Media 1 year, 5 months ago

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

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    Carol replied to the topic Alternative Medicine and ALS in the forum Living With ALS 1 year, 5 months ago

    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.

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      Dagmar Munn replied 1 year, 5 months ago

      Water therapy, water walking, and swimming are wonderful! I’ve enjoyed them too, through the first 5 years of my ALS. I agree, walking in water “without gravity” is so satisfying. Only had to give it up when the process of getting into a suit, getting there, and reversing it all became too time-consuming and energy-draining. Switched to home…[Read more]

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    Carol replied to the topic "Talking Myself into New Habits" – A Column That Can Help pALS Talk Themselves into Talking More! in the forum Flash Briefings 1 year, 5 months ago

    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.

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    Carol became a registered member 1 year, 6 months ago

    • Profile picture of Dagmar Munn
      Dagmar Munn replied 1 year, 6 months ago

      Hello Carol,

      Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.

      If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]

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      Amanda replied 1 year, 6 months ago

      Hello Carol, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]

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