Mike Leist

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.

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]

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]

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]

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.

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.

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]

Supplements :
AAKG, Ceylon Cinnamon, Theracumin, resveratol, liposomal glutathione, alpha lipoaic acid, L-Carnitine, L-Serine, Centrum multivitamin, magnesium, mushroom extract

I 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]

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]

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.

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]

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]

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.