Forum Replies Created

  • lawcarol

    Member
    August 17, 2023 at 3:04 pm in reply to: What do your typical ALS clinic appointments consist of?

    I was diagnosed with PLS in May 2020 and ALS in May 2021 during the peak of covid so I have nothing good to say about ALS clinic.  Had 2 hour waits, my Palliative Care physician constantly canceled due to childcare reasons. The only test results that were shared with me was the EMG that said ALS.  I had my first respiratory function test in August 2021 which ordered NIV but no one told me my results until I saw it posted in my chart in May 2022. By fall 2022 I learned about the Facebook groups and started getting educated.  I then went on hospice and have never regretted it. My ALS medical team was in a beautiful new facility built in 2017 in a neighborhood that my cardiologist says is a cancer cluster.  Every family I grew up with (Boomers) uses that facility or has cancer or both.  I speculate that the FDA can’t approve ALS drugs until we have the medical teams to administer them.

  • lawcarol

    Member
    August 15, 2023 at 6:12 pm in reply to: How do you connect with others in the ALS community?

    I don’t except for the Facebook groups and of course I don’t even know if they are real people.  I’ve tried ALSA support groups; back when I could speak they were so so. I was diagnosed during the peak of covid so we were on zoom and since I can’t speak there is little point to participating.  Plus the topic of preparing for death is taboo in the support group.

  • lawcarol

    Member
    August 10, 2023 at 6:38 pm in reply to: Can you help pALS and cALS navigate getting what they need?

    My experience with ALS care has been a nightmare.  Not financially because I have Medicare and a good supplement; I pay over $500 per month for these.  Plus I have declined many medications and equipment because I only have my husband and a private caregiver whom I pay hourly to help with these.  We have to get profiteering out of health care before we will see progress for victims of ALS.  This however will not happen until we transform our electoral system because the medical industry owns our elected officials and the media . Thanks for asking

     

  • lawcarol

    Member
    April 6, 2023 at 6:15 pm in reply to: What Things Would You Do Differently If Diagnosed Today?

    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 internet.  But the silver lining is that from day one I’ve been preparing to die.  The medical system is doing a terrible job with victims of ALS

  • lawcarol

    Member
    February 7, 2023 at 3:55 pm in reply to: The love of my life ( Kenneth E Steadham)

    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

  • lawcarol

    Member
    March 24, 2022 at 2:29 pm in reply to: Where do you start?

    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 for 2nd opinion that guy didn’t mention lateral sclerosis; said I had spastic paraparesis (duh).  Since then 3 ALS specialists at 2 major universities  have confirmed ALS.

  • lawcarol

    Member
    November 4, 2021 at 2:10 pm in reply to: Pre-fALS Clinic Visit

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

  • lawcarol

    Member
    October 26, 2021 at 2:35 pm in reply to: Why is ALS so difficult to diagnosis?

    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.

  • lawcarol

    Member
    October 17, 2021 at 7:37 am in reply to: Have you changed your diet since being diagnosed with ALS?

    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 years ago (pre-als) which I bought from weight loss center; sure enough, cumin was one. Immediately after i stopped taking Theracumin my appetite returned.

  • lawcarol

    Member
    October 12, 2021 at 4:58 pm in reply to: Share your tips for dealing with embarassing “bathroom” topics

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

  • lawcarol

    Member
    September 30, 2021 at 4:43 pm in reply to: Member Check In (pALS, caregivers, and other community members)

    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.

  • lawcarol

    Member
    September 19, 2021 at 11:24 am in reply to: SUPPLEMENTS TO SLOW ALS PROGRESSION

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

  • lawcarol

    Member
    September 16, 2021 at 3:57 pm in reply to: Stem Cell therapy for ALS

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

  • lawcarol

    Member
    September 16, 2021 at 3:43 pm in reply to: Stem Cell therapy for ALS

    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.

  • lawcarol

    Member
    September 16, 2021 at 2:57 pm in reply to: SUPPLEMENTS TO SLOW ALS PROGRESSION

    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 screwed up. I take a few vitamins + small amount of Baclofen. At severe fall risk (2 years with 2 wheeled walker) having clear head is #1 priority.

  • lawcarol

    Member
    August 31, 2021 at 3:05 pm in reply to: Dude about diagnosis

    <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 ALS. Plus one at Mayo Clinic Rochester (where I went twice, saw 3 , none of whom were qualified to see my ALS, and didn’t).  I also have a benign brain meningioma and my oncologist following it asked me who diagnosed my ALS, a very important question to him.</p>

  • lawcarol

    Member
    August 26, 2021 at 4:30 pm in reply to: No longer eating by mouth

    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.

  • lawcarol

    Member
    August 19, 2021 at 3:29 pm in reply to: End of Life Topics

    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.

  • lawcarol

    Member
    August 19, 2021 at 2:20 pm in reply to: No longer eating by mouth

    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.

  • lawcarol

    Member
    August 19, 2021 at 2:13 pm in reply to: In the Media

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

  • lawcarol

    Member
    August 13, 2021 at 9:35 am in reply to: Alternative Medicine and ALS

    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.

  • I see that this feed is old but for some reason it came up in my inbox today.  Perhaps because the comments reaffirm my decision to decline the feeding tube.  I am 68 have had symptoms for years and when I can no longer eat it will be time to say goodbye

  • My experience with Palliative Care physician was horrible.  It was the peak of covid.  He zoomed with the social worker but didn’t let her speak.  I learned from Facebook that with ALS we could have gotten an exemption on property taxes; the socialworker should have told me this.  I fired the Palliativedoctor but he insisted on meeting with me;  that was awkward. I asked for hospice one month after diagnosis finally self-referred after 18 months.  Ironically after 6 months on hospice I no longer wanted to die but now I’ve started the eye tech and I think I’d rather die than battle with this technology.  I’m giving my eye blink device success coach one more week. What a godforsaken disease!