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  • I also have a “hyperinflator” device, which is basically a football-shaped device that allows you to inflate your lungs fully (and more) by squeezing it, forcing air out a tube with a mouthpiece on the end. This supposedly maintains lung capacity as your diaphragm weakens and normal breathing becomes very shallow. This also serves as a manual…[Read more]

  • Here’s my wish-list, probably you’ve seen them all:
    Wheels that don’t caster outside the width of the frame. Seat arrangement allowing you to sit down without turning around. Clips for cane, grabber, etc. Fold-down shelf and cup/glass holder.

  • I have a cough assist machine. Sucks and blows, but it’s kind of aggressive – I wouldn’t want to use it for breathing. My CPAP blows in forcefully and then reduces pressure so it’s easy to push out, but it doesn’t use negative pressure. I think anything that truly aids the entire breathing cycle is pretty serious stuff.

     

  • Update: we got curious and actually weighed me this morning. I’ve gained 3 lb! Up to 138 – no wonder I can’t walk…

  • Went from 165 to 140 in the ~6mo prior to Dx, another 5 lb in the 2 mo since Dx. Can’t stand up to weigh myself any more, so any future weights will be approximations. Riluzole ruined my appetite, but after stopping that, I’m back to eating whatever I want. Mainly a liquid, high-energy, high-fat, high-protein regimen, since solid food isn’t…[Read more]

  • A couple years ago I had pretty bad leg cramps at night. My primary care doc at the time recommended vitamins B1 & B12, and darned if it didn’t work. I’m going to start taking it again to see if it affects my ALS. Got doubts, tho.

  • Bill – I never had that problem. Very rarely do I startle over anything, and it creeps my wife out. However, if I walk barefoot over a grain of sand on the floor at night, I react from the pain, but I wouldn’t call it a startle reflex.

  • Lori – re Dx: 3 rounds of EMG and NCC in 3 facilities over 2 years. They all wanted to call it neuropathy, until a sharp doc at Stanford expressed concern about MND – ALS Dx followed 2 months later.

  • Lori – No, First noticed twitching a couple years ago – very minor. Now, I’ve lost my feet and lower legs, losing the rest of me faster than I’d like, especially hands, now noticing trouble breathing, and was put on a BiPAP machine, which helps at night. So far, speech is unaffected, but I have to use 2 hands on the mouse. Graduated over the last…[Read more]

  • I’ve had noticeable twitching for a couple years, leg cramps at night before the twitches. Vitamin B1 and B12 seemed to help, so I kept taking those, as well as about 20 other supplements recommended by several sources for neuropathy, which was what all the docs said I had since my first complaint in 2018. Twitching got worse, several docs…[Read more]

  • Michael Armstrong posted a new activity comment 6 months, 1 week ago

    I started Riluzole 3 days after Dx, have seen no effect or side-effect after 10 days. I also felt that the extra 3 months would probably not be terribly enjoyable, but it gives them that much more time to come up with an effective treatment. First appointment in the Multidisciplinary Clinic is in a couple months and really looking forward to that.…[Read more]

  • Michael Armstrong's profile was updated 6 months, 1 week ago

  • Michael Armstrong posted a new activity comment 7 months, 2 weeks ago

    No, they haven’t “determined have ALS”, they’re just “concerned”. So, absent a firm Dx, there’s not much they can do. I just read a paper on ALS diagnosis that showed how much of a problem it is to diagnose, so I don’t expect any swift movement. Another paper said “Higher levels of emotional well-being are associated with slower disease…[Read more]

  • Trying to remember if I’ve already posted my Dx history, but I’ll assume not and give you the summary here.

    I haven’t been formally diagnosed. I’ve got terrific insurance, but so-so medical care which takes forever to get an appointment, and every subsequent appointment, test, etc., takes forever again. But here’s my history, briefly:
    Ca. 2005 I…[Read more]

    • Michael, I am sorry your trek through the diagnosis labyrinth took so long 🙁 So, they have determined you have ALS…
      Are you taking any medication to slow down the symptoms — like Riluzole? Yes, there’s (currently) no effective cure for ALS, but there are treatments/therapies and lifestyle behaviors you can do now, that have been shown through…[Read more]

      • No, they haven’t “determined [I] have ALS”, they’re just “concerned”. So, absent a firm Dx, there’s not much they can do. I just read a paper on ALS diagnosis that showed how much of a problem it is to diagnose, so I don’t expect any swift movement. Another paper said “Higher levels of emotional well-being are associated with slower disease…[Read more]

  • Michael Armstrong became a registered member 8 months ago

    • Hello Michael,
      Welcome to the forum! I am one of the forum moderators, as well as a person who is also 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.

      If you have any questions, concerns or even…[Read more]

    • Hello Michael, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let u…[Read more]

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