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After decades of uninterrupted decline I'm making rapid gains
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Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Stanley, thanks for your comment. I started working on a reply immediately but have been slow to get it finished. In part because I've been busy and in part because it prompted me to look up some references for things I wanted to discuss and in the process found new things which I've been chasing after. I hope I'll manage to follow up soon, perhaps tomorrow or by Thursday morning.
Location: Sacramento, CA
Registered: 07-30-2017
Posts: 3
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Thanks for your thoughtfulness Todd. No rush. I'm not going anywhere!


Stanley Chew
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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The improvements I’ve experienced are probably due to reversing all 5 biomarkers metabolic syndrome. These biomarkers are signs of chronic damage being caused by insulin resistance as one progresses towards an acute loss of blood sugar regulation recognized as type 2 diabetes mellitus. T2DM brings increased risk of many health issues including some we associate with KD such as fatigue, neuropathy and loss of muscle. I developed a wide range of symptoms/conditions associated with full T2DM despite only progressing to a borderline diabetic state. I believe KD contributes to the risk of developing T2DM and accelerates the damage of T2DM.

T2DM is exploding in the US and most countries around the world. And it is being linked to the rise of leading killers like cardio-vascular disease and cancer. It is associated with increased risk and or severity of many neurological conditions such as Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis, etc. And recent research shows severity and progression of KD are highly correlated with insulin resistance. T2DM is widely considered a progressive disease but unlike KD there is a significant and increasing number of people who have reversed it through lifestyle changes focused on 3 core elements: nutrition, sleep & stress management and exercise. I’ve found it important to address all 3 and think of them as links in a chain or legs of a stool, something only as strong as the weakest part.

I suspected I had my grandfather’s disease in my early teens and figured out it was KD at 25. I tried hard to live healthy, eat right and exercise hoping to be one of the lucky ones with KD who experience slow progression and limited impairment. In the attached group of photos, the top left is me at 33. A combination of weight training and endurance cycling and avoidance of things I believed unhealthy such as alcohol, smoking, soda pop, and fat had me relatively fit compared to typical American nerd computer programmers. But I was slowly declining and I doubled down on my efforts pursuing those things which I thought had been working. Following mainstream advice to eat less fat I went nearly vegan and I exercised even more. My decline was brutal, here’s a couple pics of me approaching rock bottom after I had given up on exercise:
Top right is New Year’s eve 2014.
Bottom left is Spring of 2015.

Bottom right taken today, age 53, after a little over a year of renewed effort, a long way from fit but on a better trajectory. I’ve done so many things it’s hard to evaluate the value of each. But I will follow up soon with my thoughts about what is helping most.

This message has been edited. Last edited by: ToddAllen,

muscle loss progression and reversal
Location: Sacramento, CA
Registered: 07-30-2017
Posts: 3
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I am very happy for your success Todd, not only for giving hope to the rest of us with SBMA, but you certainly are deserving of the miracle, because of your dedicated research, untiring efforts, and perseverance in doing all you can to help yourself. I will study your protocol closely and take away what I can. Admittedly, it is not an easy lifestyle change to follow. BTW, you look great! Keep us appraised on your progress.


Stanley Chew
Location: Rockford, IL
Registered: 10-04-2018
Posts: 2
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Well, I'm new to this. I found you on a keto website I believe lol. But I am glad that you are doing much better.

I plan on doing a similar protocol as to what you are doing. I am in a different stage though. I'm still able to run, I'm still able to lift heavy weights. I feel as if I am losing strength, but until recently, I did not feel like it had started attacking the muscle yet.

Now I feel these moving sensations of weakness and fatigue in my biceps and neck area and I find myself choking sometimes. My tongue feels heavy and every muscle on my body moves. Has your protocol helped at all with the sense of instability or the muscle movements? Does anything help with the tremors or muscle cramps?


Branden Burke
Location: Rockford, IL
Registered: 10-04-2018
Posts: 2
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Also, how quickly does it start to progress when the disease really takes hold? My twitching and faint feelings of weakness started almost 7 years ago. It progressed into muscle cramping about 3 years ago, then bulbar issues and relatively faint tremors this year.

3 years ago I had a full workup done at the Mayo clinic. Liver enzymes were normal then. Glucose and insulin were slightly elevated. Ck serum was normal. Emg had fasciculation and the muscles were cramping, but no signs of denervation. I was diagnosed benign cramp fasciculation syndrome. Which means you cramp and twitch, but they couldn't find an organic cause for it. The desease has passed neuromyotonia, and my workup suggests KD. We are awaiting genetic testing to confirm.

The reason why I ask is because I have been big into powersports. I was about to buy a very nice and expensive snowmobile. I don't want to give up on my hobbies and what brings me great joy, but I don't want to waste money on something that I can't use in 2 years.


Branden Burke
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Branden, your description sounds fairly typical for KD and the genetic test will give you a definitive answer. KD progression and expression is quite variable. The mix of symptoms, when they begin and how severe they become varies person to person. Researchers discuss how other genes, environment and lifestyle factors might affect this but there is much uncertainty.

In my case much of what I had been attributing to KD I now believe was due to the combination of KD plus type 2 diabetic severity blood sugar swings when eating a low fat high carb diet and other factors such as poor sleep, stress, some nutritional imbalances/deficits, inappropriate exercise, and probably some toxin exposures. More recently I believe I have been significantly impacted by a mold problem at home and a periodontal infection that probably started when my blood sugar was poorly controlled. For me KD started early with some symptoms in my teens but progressed slowly until about 30. Then it began accelerating and by my mid 40s I deteriorated very rapidly. Over the past 2 1/2 years as I've found and addressed factors impacting my health many symptoms that are core clinical aspects of Kennedy's disease, weakness, muscle wasting, cramps, tremors, laryngeal spasms have been getting better. I still have ups and downs. Sometimes I figure out why but more often not. How long my ups can continue exceeding my downs remains to be seen.

I find much of my tremors and fasciculations are related to momentary fatigue especially under stress and cramping is aggravated by deep over exertion. If I take it easy symptoms tend to be slight and when I over do it they can be brutal. The worst cramps I ever experienced were in my early 30s when I was much more capable of sustaining higher levels of exertion. I think it is vital to push myself hard at times but too much too often clearly becomes counter productive.

I've given up many activities that were once important to me such as skiing, motorcycling and hang gliding. I don't regret at all pursuing any of them and still think I might do any or all of them again some day. Don't give up on your hobbies and joys while doing your best to make good decisions about how much to spend on them. Don't rush your decisions, expect you will be able to continue most things, perhaps at diminishing levels of time and intensity for quite a while. How long you will desire to keep doing something is perhaps as important as how long you will physically be able to do it.
Registered: 08-02-2009
Posts: 206
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Hello Branden,

Concerning the question about how fast KD progresses, there is an excellent resource that can be found at this link: http://kennedysdisease.blogspo...ennedys-disease.html It leads to a scientific paper that goes into great detail about the age of onset for the various symptoms.

By the way, most scientific papers on KD say that one loses about 2% of one's strength each year. So the rate of loss is relatively slow.

Concerning the question about whether to buy the snowmobile, of course, you're the only one who can answer that for yourself, probably after getting the results of the genetic test for KD and maybe after reading the paper I referred to just above. But if you want my advice, I'd say buy the d**n thing. Most likely you will enjoy it for a few years, and if you get to the point where you can't enjoy it, you can always sell it, but meanwhile you had the enjoyment.

For my part, the question is not whether I can do the activities I used to enjoy, but rather, what is the risk? For example, I used to enjoy skiing, but if I do it now, I get very sore the next day, and furthermore, there is the risk of falls and injuries due to weak leg muscles. So it is not inability that is stopping me, but rather the risk. That's why I have made transitions to lower-risk activities than what I used to do.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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quote:
By the way, most scientific papers on KD say that one loses about 2% of one's strength each year. So the rate of loss is relatively slow.


The 2% figure is an average, largely based on coarse fuzzy data from questionnaires asking people about dates of past symptoms/milestones. A similar process has been applied to people without KD producing the figure of 1%.

But if anyone continuously tracks strength their line is jagged on both short and long timescales. Everybody experiences things such as sickness, injury, trauma and stress resulting in periods of accelerated decline. Often those are interspersed with periods of recovery where gains are made. On a short time scale exercise is a stress which weakens but when enough things go right results in enhanced strength after recovery.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Adding onto Todd's comment. For me, I go through periods of stability and then have a "slide." It is my term for when I experience an onset of weakness that might last a couple of days or longer. Most of the time, my strength bounces back to 'near' previous levels with only a slight noticeable weakness in a muscle group.

The two percent number is a reasonable average to consider over a period of time. Yet, as Todd mentioned, other health issues might play a part in experiencing a faster rate of decline in a particular muscle group. For example, if you have an illness or injury that does not allow you to use your legs for a period of time. Atrophy occurs in non-KD patients as well as those of us with KD. The experience might be worse for us with KD because atrophy might already have occurred.

As Todd and I believe, the right types of exercise and a good diet can help you remain ambulatory longer and recover quicker.
Registered: 01-11-2019
Posts: 13
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All i can say is wow what an amazing read. I didnt want it to end. Please keep updating this with how you are getting on and any changes you have made to you exercise and diet plans.

This is why forums like this are vitally important. I have learned more reading this thread than anywhere else and its from the people who are actually going through this.

Not only is it informative but gives hope to people suffering from KD and puts into perspective just how important exercise and nutrition is, and how it is possible to slow down or even hakt progression.

Well done. You should write a book.

I have a couple of questions.

I have the exact same symptoms you had regarding metabolic syndrome and insulin resistance. Do you think its vitally important that this is addressed first and get the body out of that state before embarking on exercise or do you think both need to be done together. Can pre diabetes be cured by nutrition alone or is exercise needed simultaniously.

Do you think that it will be harder for people with low testosterone to gain muscle back?

Thanks
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Thanks, I'll follow up with a longer answer when I get a chance.

It's nearly impossible to give specific advice on exercise or diet because we all can be very different even if we share a disease. I recommend working on both together along with any other things that could be impacting your health such as poor sleep. But don't jump in with crazy big changes, make adjustments gradually and try to watch for signs of trouble and for what is helping.
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