mike-leist
Forum Replies Created
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Did anybody see the article in ALS News Today, titled
<h1 class=”bio-article-content-heading bio-type-display–large”>MSC transplants found to extend survival by 4 years in ALS: Analysis</h1>
<p class=”bio-article-content-lede bio-type-display–small”>The first paragraph reads as follows:</p>
“Transplants using mesenchymal stromal cells or MSCs — a type of stem cell found in bone marrow — delivered into the spinal canal can significantly extend survival in people with amyotrophic lateral sclerosis (ALS) compared with what would be expected based on their clinical characteristics, a new analysis of trials from the early 2000s found. ”Here’s a link to the article, which contains a link to the study.
Now, I have to say, I have mixed emotions here. On one hand kudos to the research, and essentially reinforcing what NurOwn is about. On the other hand, I’m pissed. Studies from the 2000s? Following patients for 20 years? Somebody should have been shouting this from the rooftops 15+ years ago. How many people have died, and will die, based on a lack of urgency? Perhaps I’m being too critical. I don’t know. But as someone who has been at an FRS of zero, and paralyzed for approaching 3.5 years, I’m angry at the pace.
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My first symptom was sporadic slurring of my speech. Several months later, I noticed fasiculations on my tongue.
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The first thing I would do is to voice bank. Nobody gave me that advice. Secondly, I would do everything possible to get into the NurOwn clinical trial, even if it meant that I would have to move.
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In the days when Joseph Stalin was Commissar of Munitions, a meeting was held of the highest ranking Commissars, and the principal matter for discussion was the famine then prevalent in the Ukraine. One official arose and made a speech about this tragedy — the tragedy of having millions of people dying of hunger. He began to enumerate death figures … Stalin interrupted him to say: “If only one man dies of hunger, that is a tragedy. If millions die, that’s only statistics.”
The point he was trying to make is that statistics depersonalize things that happen to us, or around us. So instead, I’m going to tell you a quick story about me and ALS. Because ALS is deeply, deeply personal. But if you need something to make it personal to you, how about this: 1 in 400 people will get ALS in their lifetime. So you, or someone you know, will die from it. Because it’s 100% fatal. That should make my story more personal for you. My name is Mike Leist, and this is my story.
8. 8 years ago this month, in February of 2015, my life started to change due to ALS, slowly at first. I started to infrequently slur my speech. At first, it was only when I had a beer or two with my friends. I didn’t think much about it, and blamed it on some major dental work I’d just had done. Then it started to happen after I ate lunch, with certain types of words. I was a teacher, so slurring my words was concerning. Then one night I looked in the mirror at my tongue, and it looked like there were tiny worms under my tongue moving around. I realized something more significant was going on, and made a doctor appointment to get checked out. The first of many.
7. 7 years ago this month, after several doctor appointments and many tests, I was diagnosed with Bulbar ALS. When the neurologist gave me the diagnosis, my wife Lis was with me. He said, “You have ALS, a disease for which there is no cure. The life expectancy is 2-5 years. I suggest you get your affairs in order.” I was only 45 years old, and my world was shattered. Lis and I both sat in the office and cried a lot. On the drive home we had to pull over 3 times because I was hyperventilating. I kept picturing old couples holding hands as they walked together, and realized that was never going to be us.
We decided not to tell the kids immediately, but to wait until the end of the school year, which was only 3+ months away. Two were Freshmen and our oldest a Junior in high school, and this would be hard enough on them without having to focus on school. I told only a few friends at first, until school ended. Then after exams, we told the kids, and then co-workers, and my dragon boat team.
6. 6 years ago I had to stop teaching, because my voice had gotten bad enough that it was impacting my ability to do my job. Around 4 months after that, I lost my ability to be understood all together. So, I started using a text to speech app on my phone, and a Bluetooth speaker, to talk and amplify my voice. I also got a feeding tube, and had to start being careful about what I ate, because I was losing my ability to swallow. I had quite a few instances of choking that year, which was pretty scary.
5. 5 years ago I had my first non-bulbar functional impact, which was head-drop. I had to get a neck brace to support my head, and had to give up dragon boating, since keeping your head up while paddling is pretty important. I continued to lift weights, do cardio, and walk, but I could tell that I was losing strength in the weight room. I was also having issues with saliva, and trying different types of treatments for that.
4 years ago, I started losing my balance and falling. A lot. By August of 2019, I had to move into a wheelchair permanently for safety reasons. My functional strength was really starting to crater, to the point where I was having trouble texting on my phone by the end of the year. I got approval for, and began to use an eye gaze device.
3. 3 years ago, in March of 2020, I had a partially collapsed lung, and had an emergency tracheostomy. Because, I wasn’t ready to die. By the time I exited the hospital 19 days later, I was pretty much fully paralyzed. Since then, life has been pretty much the same. I try to make the best of a shitty situation by making the best of it, and doing the things I can enjoy, all with my eyes. I read, or rather listen to, a ton of books. I watch what I want, when I want. I do fantasy sports, and play games like cards or scrabble. I don’t know how long I can, or will want to do this. I’m 100% dependent on other people – my wife, nurses and home health assistants – to do anything physical.
0. There are zero treatments, or clinical trials, which offer any hope for anyone with end-stage ALS like me. There’s one treatment that’s offered some success with halting the disease with some people, but not all. And that treatment isn’t yet approved by the FDA. It’s called NurOwn, and is in a phase 3 clinical trial. But it doesn’t reverse ALS, or repair the damage that’s been done. Clinical trials will only typically allow people who have been diagnosed less than 2 years ago to even enroll. It’s going to be years yet – best case – before anything comes around that might provide even the hope of neuron regeneration. And in all likelihood, my story will have come to an end before that happens. -
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 or phlegm out of your lungs has to be done multiple times per day, with either a cough assist machine or via chest suction. Sometimes you’ll have to do this more than once an hour, sometimes you’ll go several hours without needing to do it. I would say I’m generally sleeping through the night without needing this done 5-6 nights per week, but it was more frequent at first. There’s maintenance required on the trach daily, but that’s pretty simple, and only takes about 10 minutes. You’ll want to leave the hospital post-surgery with a care plan in place that involves skilled nursing and home health aids, so that your spouse / family gets a break. Your hospital case worker will negotiate with your insurance company to put a plan of care in place for you.
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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 Jevity. If you read the nutritional label, this is not the type of stuff you want to rely on. It will give you calories and protein, but when there’s lots of ingredients you can’t pronounce, it’s pretty far removed from real food. I use Liquid Hope now as a good packaged liquid nutrition, along with smoothie recipes I’ve created based on research, and had reviewed by the nutritionist at the ALS clinic.
I once heard Dr. Bedlack, who tracks ALS reversals, say that one thing all reversals had in common is that all of them were on plant-based diets. The smoothies start with lots of fruits and veggies based on the Wahl Protocol. Dr. Terry Wahl was able to reverse many of her MS symptoms through nutrition. In each smoothie are two servings of veggies, one being either kale or spinach, and the other being things like cabbage, broccoli, sweet potatoes, mushrooms,, cauliflower, etc. I include 1 serving of darker fruits, like blackberries, blueberries, strawberries, acai, etc. Each smoothie then has plant-based protein powder, and 3 servings of healthy fats. These include nuts like almonds, walnuts, and cashews, and other fats like olive oil, and coconut oil. I also add fiber. I include supplements that are, like the foods, anti-inflammatory and antioxidants. Examples include Theracumin, Ceylon cinnamon, resveratol, and a few vitamins. My neurologist also suggested L-carnitine may also have some benefits at a cellular level for delivering energy to neurons. There’s other supplements that many other ALS patients take, but supplements are really a whole separate conversation, and what I mentioned are really just the tip of the iceberg of that topic.
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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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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 hands lost function, I started using a Tobii Dynavox.
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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 the University of Edinburgh that shows ALS/MND damage to nerve cells can be repaired by improving the energy levels in mitochondria. Can you recommend anything that might help achieve this, whether it’s through food, supplement, or medicine?
A: The next step is that the researchers at Unv. Edinburgh are working to identify such medications. L carnitine 500mg 3x/day has the strongest evidence to support its use. Alphla lipoic acid was promising in mouse models but does not have human trials to support use (but is low risk to try). CoQ10 and creatine were previously studied but did not seem to have significant effect”.These supplements are pretty inexpensive, and you can get them on Amazon, or wherever you go to buy supplements
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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 more quickly when I took breaks from my workouts / sport due to vacations. Then, 3.5 years after Dx, when I was losing my balance a lot and moved to a power wheelchair, my strength declined precipitously when I couldn’t exercise anymore. So studies aside on the causes of ALS, I can say that once I did have the disease, exercise was critical to helping me maintain strength longer. Use it or lose it applies to everyone, but to PALS even more so.
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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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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 my balance got bad, and I went into a wheelchair. I kept journals of my workouts, and learned two things about exercise and ALS:
1- Be consistent. The old addage “use it or lose it” applies to everyone, but exponentially so for us.
2- We don’t recover like healthy people. Most athletes push themselves to failure, recover, and do it again to build strength / stamina. If you train like this with ALS, you can cause your muscles to lose strength faster if those muscles are impacted. So, train in moderation.Best of luck to you in your journey.
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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 don’t believe pushing yourself to failure, like most healthy athletes do, is good for those with ALS. But doing whatever you want, with moderation and consistency, can help lessen the speed of decline.
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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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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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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 did not have Theracumin in common. Theracumin is a high bio-available brand name derivative of curcumin, which is the neuro-protective active ingredient in turmeric. He decided to run a trial using Theracumin because of some of the commonalities he saw with turmeric usage, and the potential for its properties.
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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.