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Mike Leist replied to the topic Tracheotomy in the forum Living With ALS 4 months, 1 week ago
I’m on a Medicare Advantage plan, and am in the U.S. I have 25 hours of skilled nursing per week, and 30 hours per week of a home health assistant. I pay zero out of pocket for this.
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Mike Leist changed their profile picture 4 months, 2 weeks ago
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Mike Leist replied to the topic Tracheotomy in the forum Living With ALS 4 months, 2 weeks ago
I had a tracheostomy, and went on a ventilator in March of 2020. I don’t regret doing it, because I wasn’t ready to die, and it pretty much eliminates the risk of respiratory failure. Life with a trach requires 24×7 care be nearby, mainly for two reasons. First, if the vent becomes disconnected, someone has to reattach it. Second, clearing mucus…[Read more]
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Mike Leist replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 7 months, 1 week ago
Dagmar –
I heard Dr. Bedlack say this at the Hope Symposium in Orlando in 2016. I am not confused. And yes, I realize MS is not ALS. That is why I specified that. Hopefully you also noticed my caveat regarding how there’s no proven ALS diet, and that I stated she has MS. I certainly don’t mean to be confusing. And to clarify, no, all reversals…[Read more]
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Mike Leist replied to the topic Have you changed your diet since being diagnosed with ALS? in the forum Living With ALS 7 months, 1 week ago
While there’s no “proven” diet for ALS success, I wanted to do all I could to give my body it’s best chance to battle it. This really became even more important when I started losing the ability to swallow, and had to use my feeding tube more and more. When insurance provides you with liquid “nutrition”, they will normally send you something like…[Read more]
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Mike Leist replied to the topic Stem Cell therapy for ALS in the forum Using our Forums 9 months, 1 week ago
Not a lot of people do this yet, because places internationally do not provide validated data that demonstrates success. And it’s expensive. There are some clinical trials that have shown promise for some patients, such as Brainstorm’s Nurown, but it’s not yet FDA approved, nor is it commercially available to the public yet.
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Mike Leist replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 10 months ago
Steve, or anyone, I’m happy to help with Tobii training or issues. I’ve been using it for 1 1/2 years, and used to work both in information technology, and as a teacher. My only limitation is that I’m have lost my voice, but can speak through the Tobii. Also, a screen can be shared with Zoom.
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Mike Leist replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 10 months, 1 week ago
In addition to the good recommendations above, if you use a text to speech app, I would recommend using a Bluetooth speaker to boost the volume. I found one that was hand-size, and had a small loop. I then attached a carabiner clip so I could attach it to my belt loop. I used that for about 3 years, along with carrying a boogie board. Once my…[Read more]
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Mike Leist replied to the topic SUPPLEMENTS TO SLOW ALS PROGRESSION in the forum Diagnosis Information and General Questions 11 months ago
Supplements :
AAKG, Ceylon Cinnamon, Theracumin, resveratol, liposomal glutathione, alpha lipoaic acid, L-Carnitine, L-Serine, Centrum multivitamin, magnesium, mushroom extractI asked the following question to my neurologist, based on the same research that recently came from Scotland. Here’s her response also:
Q: There was a study recently at…[Read more] -
Mike Leist replied to the topic Frequent, Intense Exercise is a Risk Factor for ALS – – But is it? in the forum Research Topics 11 months, 1 week ago
I did frequent, strenuous exercise, and I have sporadic ALS (no genetic test). But I’ve been involved in competitive sports since I was a kid. I was diagnosed at age 45. I continued competitive and strenuous exercise nearly two years after my diagnosis, and kept records on my strength levels in the gym throughout. I found that I lost strength much…[Read more]
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Mike Leist replied to the topic Neck drop in the forum A Forum for ALS Caregivers 1 year, 1 month ago
There’s multiple orthotic braces that are available. The most common that people start with is the headmaster. As his need for support grows, there’s others that provide more support, like the Miami J, or the Minerva brace. If you attend an ALS clinic, the occupational therapist should be able to help you choose which one would work best for his needs.
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Mike Leist replied to the topic Confused about progression of symptoms in the forum Diagnosis Information and General Questions 1 year, 3 months ago
Hi Lisa. I’m sorry to hear of your issues, and a possible ALS diagnosis. I was diagnosed 5 years ago, and here is what I have learned. I continued to exercise at normal levels for about 3 years after my first symptom. Head drop impacted my ability to paddle on the water (dragon boating was my sport ), but I continued to walk and lift weights until…[Read more]
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Mike Leist replied to the topic Living Longer with ALS in the forum Living With ALS 1 year, 6 months ago
Like many PALS, I was very physically active when I was diagnosed. I continued to be as long as I could, and kept workout journals. I noticed the more active I was consistently, the slower the disease progression. When I took time off for whatever reason, I lost strength more quickly than when I was healthy and took breaks from my routine. I d…[Read more]
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Mike Leist replied to the topic Breathing assist machine in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 years ago
I’ve found that the cough assist has been great as a training tool to keep lung capacity longer. And, as phlegm / mucus become an issue, especially in your lungs, it is a great tool.
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Amanda and
Mike Leist are now friends 3 years, 1 month ago
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Mike Leist posted a new activity comment 3 years, 1 month ago
Thank you all for the warm welcome. I appreciate it very much!
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Dagmar Munn and
Mike Leist are now friends 3 years, 1 month ago
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Mike Leist became a registered member 3 years, 1 month ago
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Hi Mike, my name is Michael Morale. I’m the Director of Multichannel Content for ALS News Today. I wanted to welcome you and thank you for joining our forum. We hope that you will take time to go through all of the open conversations that are actively in progress, and feel free to join in. We strive to bring you the information that you need to m…[Read more]
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Hello Mike, my name is Dagmar. I’m one of the forum co-moderators and wanted to welcome you and thank you for joining our forum! We hope you will take the time to go through all the open conversations that are in progress and feel free to join in. If you have any questions or concerns or even suggestions, just let us know, and we will do our b…[Read more]
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Hello Mike and welcome to the ALS forum. I am Amanda, one of the co-moderators of the ALS forum. Have a look at the forum and discussions. You are welcomed post comments, ask questions and provide feedback. We are here to provide support and information. Please let us know if we can do anything to be helpful.
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Thank you all for the warm welcome. I appreciate it very much!
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Mike Leist's profile was updated 3 years, 1 month ago