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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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My new approach to exercise of brief higher intensity sessions focusing on strength and speed is working well. I'm able to exercise more frequently with quicker recovery and more steady gains in performance. I've been exercising daily. Every day I'll do between 10 and 30 minutes of resistance training in sessions from 5 to 15 minutes duration. And twice a week I do a longer session of an hour or more of biking, swimming, or walking.

I've been focusing on whole body exercises for resistance training, my cheater versions of dips and chinups using stools and incorporating the legs in a squat. I can push myself to being completely winded and overheated to nausea in just a couple minutes doing these. Another favorite is taking a very short walk with a dumbbell in each hand. I've progressed from doing this with 2 lb weights to a 20 lb weight in each hand and am steadily making progress in speed and stability while increasing the weight. I have to use a weight lifter's wrist strap to hold on to the dumbbell in my left hand as it seems a major nerve fiber there is not coming back. The hand has gained a lot of strength and mass but only in some of the muscles, not all of them.

In my longer aerobic/endurance oriented exercising I now focus on maintaining good form instead of achieving distance. I'll do brief periods of higher speed and when I can't maintain good form I'll slow or stop and rest. I used to push myself into a much deeper state of fatigue where my muscles would often fail and sometimes I would fall. One of those falls resulted in a chipped tooth a couple months ago. But I've found I'm making gains, perhaps even faster, without grinding away while deeply fatigued.

There's still inconsistency to my performance. Some days I feel great and set new records and other days I'm dragging. Sometimes it's obvious why I'm off such as the day after a particularly high level of exertion or when coming down with a cold. Sometimes I can't explain it. The off days used to cause me concern, especially if I had a few in a row. Was I doing something wrong? Have I hit the limit for improvement and is the inevitable decline resuming? But I'm paying less attention to the off days. The good days have been coming steadily for months. They seem to come easier and more often as time goes by. Maybe there won't be a plateau at least not for years? Perhaps muscle loss is not just a result of the disease but a contributor to the disease process? And maybe gaining muscle is not just coping better with the degeneration but is fundamentally altering the disease process, restoring metabolic health and actually making continuing gains easier?

As a child I did not feel diseased. The effects of the mutant gene were subtle enough for us before "the age of onset" for us to be oblivious to having it. And the age of onset is quite variable. Perhaps we can shift that age of onset and push it off into the future long after it has occurred?
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Todd, thanks for the update. I am pleased to hear it is going so well. Many years ago I switched my exercise routine from push until there was nothing more to give to adopting the 70% rule. I push myself to 70% or so of my capability for that day and then quit that particular exercise. It changed my life. I was no longer becoming too fatigued to function or hurting myself.

I have been an advocate of exercise for some time. I feel that daily exercise keeps everything limber and humming along. I perform a long exercise program three times a week (M-W-F) and shorter exercise and stretching programs on the other days. I exercise first thing in the morning and in the early evening. During the day I will perform some quick exercises (mostly legs).
Registered: 01-08-2013
Posts: 61
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Thanks for the update Todd, I was wondering how you were doing. There is increasing science about the benefits of living well as a protective decision. As opposed to waiting til you feel well to go for that walk, deciding to go for the walk to feel well. Part of the full Range of Motion exercise plan is integrating your environment into your workout, I've learned the hard way that things I can do on my own aren't very important if I get flustered and hurt working with others so my goal this year is to engage more and see my limitations in a different context.The rib injury last month has finally healed so I'm back out cleaning up the garden. The specialist wouldn't do the root canal, so I;m waiting to have the tooth extracted next week ... penicillin and painkillers til then. I'm taking a heat sensor to London for the KDUK patients day so I can measure the change in surface temperature of anyone fool enough to arm wrestle me, I;ll let you know if you are an anomaly Smiler
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Bruce, I've read your blog posts on exercise and found them helpful. I previously interpreted the 70% rule as exercising at no more than 70% of maximum muscle force. I've had a variety of exercise related injuries and my thinking was that by avoiding pushing the limits of my strength I'd minimize the risk for injury. And I was most concerned about diminished endurance and thought longer sessions at a lower level of exertion ought to be good for maintaining endurance.

But over the past few months my thinking has been changing. I was still getting hurt when pushing to my limits of endurance. As I tired my movements became awkward and abnormal. Posture and gait became awful. Sometimes I'd push to the point of collapse and get hurt and other times I'd get twists, strains or sprains from bad movements. So I started to focus on posture and form. Only doing a movement with the appropriate muscles and trying to avoid compensating for their fatigue by bringing in other muscles in unnatural ways. Which set me back a lot in terms of weight, speed and distance in most every activity and exercise. But then a good thing happened. Instead of being stuck on a plateau I began making progress again. Then I started looking for ways I could push the limits of strength and I found my progress accelerate. Now I've shifted so that mostly I do very brief exercises with as much focus as I can muster to maximize muscle force. I started exploring this with aquatic exercises in a swimming pool with styrofoam dumbbells. Their bulk provides resistance to motion in water such that the faster one moves the greater the resistance and one can fire their muscles as hard and explosively as one can manage with little risk of injury. Since then though I've tried to incorporate brief periods of very intense activity into all my exercising and I've found it more effective at producing gains in both strength and endurance while reducing the amount of time needed for recovery between exercise sessions.

This message has been edited. Last edited by: ToddAllen,
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Paul, good to hear from you. Tooth pain ranks near the worst, I hope the extraction went well. Don't get hurt arm wrestling, I'm looking forward to many more rematches. I can probably manage a 50% better effort than last time right now and perhaps when I push that to 500% better you'll be able to use that heat sensor on yourself and see a rise. Rumor has it the next KD conference will be Nov. 9-11th in Washington, DC. I ought to be able to go.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Todd, yes, the 70% rule was explained to me as a way to maximize effectiveness of the exercise being performed without causing injury or excess fatigue.

Performing an exercise while the muscle and posture/position are still strong is preferred to pushing yourself to the limits where other muscles are trying to support and compensate for the weakening main (core) muscles being exercised.

Performing exercises more slowly is preferred to speed since it takes greater strength to do it slowly than rapidly. It also reduces the potential for injury.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Bruce, for resistance/weight training, I agree that slow controlled motion is desirable. But for swimming, cycling and walking I find I get more out of them in much less time by focusing on speed. Sprint until I can't maintain form, rest and then hit it again. Just a few cycles of sprint and rest which doesn't take very long, at least for me, seems to produce better results with respect to improving performance/muscle growth then long sessions at a moderate pace.

Long duration moderate exercise likely has other benefits such as for the heart/blood circulation or general health and fitness and I'll continue to do it on an infrequent basis. Mostly though just to see how I'm performing and what my limits are rather than expecting it to do much for my muscles. I'm still taking a nightly hot bath and it does a great job of getting my heart rate up and improving circulation and I expect is an effective substitute for endurance exercise.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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We are saying the same thing.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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I’ve been focused on regaining health and fitness for a year. I started on a hunch with an aggressive diet cutting out processed foods, especially sugars and starches. It was a good beginning.

A year ago I could scarcely bike, swim or even walk at all. I’m now regularly taking walks of ½ a mile without assistive devices such as a walker or even a cane. I need to pause frequently but I can remain standing. With a walker I can readily go a mile in a half hour and can jog a few paces although not with sufficient control to do it safely. To develop strength I walk short distances encumbered. When fresh I can go about 50 feet carrying 70 lbs which is as far as I could walk 1 year ago not carrying anything. I have gone from barely being able to fully extend my arm overhead to change a lightbulb to being able to 1 arm dumbbell press 16 lbs and curl 13 lbs, gaining 1 lb at each in the past month.

I’ve regained the ability to do typical household chores, cook a meal, wash the dishes, clean the floors, take out the garbage, do laundry, mow the lawn, weed the garden, etc. and do many of these things throughout a single day, unthinkable a year ago. A year ago I was faced with regular surprises of being unable to do things I could previously manage. Now I am regularly surprised by things I can do again.

My initial success gave me optimism tempered by the expectation I would bounce back from having sunk so low but unlikely to sustain ongoing improvement for long. I’m still making gains in all aspects of physical performance although the pace waxes and wanes. I still consider myself disabled and when walking, swimming or cycling it is common to be passed by an obese person 20 years older. But I’ve come a long way and I envision a satisfying future of increasing ability.

I don't think I'm unique and expect the majority of people with SBMA could find it more manageable through a similar combination of factors working for me: diet, better sleep, stress management and appropriate exercise. I don’t believe I’m close to exhausting the possibilities of further refinement and improvement. My current practices for diet and exercise are distinctly at odds, almost the exact opposite of common wisdom and what I was doing during my decline.

Standard dietary advice is to eat 3 meals daily of a low fat, high carbohydrate diet from a food pyramid with a base of grains, lots of fruit and vegetables and a moderate amount of protein from lean meats and low fat dairy at the very top. This is a recent thing, it occurred within my lifetime and the story behind it reeks with flawed science and political corruption. This diet works ok for some of us when young and ever fewer of us as we age. Add in SBMA, a disease with major metabolic aspects and it is a recipe for trouble. A high carbohydrate diet elevates insulin, especially if those carbs come from fast digesting refined sugars and starches. In liquid form such as sodas and supposedly healthier options like fruit juices the impact is worse. Eating from morning to night keeps insulin chronically elevated, a driving factor in chronic conditions we associate with aging such as metabolic syndrome, type 2 diabetes, cardiovascular disease, cancer, neurodegenerative diseases such as alzheimer's and sarcopenia.

A high fat very low carbohydrate moderate protein diet lowers insulin and restores insulin sensitivity an essential step in regaining insulin's effectiveness as a promoter of amino acid uptake to drive protein synthesis in muscle. Lowered insulin means ingested calories aren't being pushed into storage as fat which reduces hunger and makes weight loss easier. Losing fat, especially visceral fat, helps restore hormonal balance and improves the functioning of vital organs such as the liver and heart.

A vital component of a healthy diet is not eating. Our bodies have distinct modes, growth in a fed state and recycling and repair in a fasted state. We spend too much time in the fed state accelerating diseases of growth such as cancer and degenerative diseases because of insufficient recycling and repair. Through a high fat diet, lowered hunger and an enhanced ability to burn fat for energy fasting becomes a readily accessible tool. I don't have a strong opinion yet of how fasting should be pursued regarding factors such as frequency, duration and intensity. A fast can be absolute, no calories ingested, such as when sleeping or it can be moderate such as when one consumes a restricted diet for longer periods of time.

I've been doing roughly twice monthly 5 day long pseudo fasts of 200 to 1000 calories per day, restricting carbs and protein below 20 grams each daily. I’ll eat as much fat as I need. If my energy is lacking, if I feel cold, weak or fiercely hungry I'll consume fat such as a cup of green tea with coconut oil or cream. To maximize time spent in a more deeply fasted state I tend to eat a single meal per day, typically soup or a salad. I’ve tried pure fasts but struggle to sustain them more than a couple days.

When not fasting I normally skip breakfast and eat a large lunch and supper each with roughly 35 g protein, typically eating only between noon and 6 pm and I'll drink whey protein spiked with additional BCAAs and other supplements, ~16 g protein before bed. I embrace fats, even saturated fats. I keep carbs low, roughly 40 g net not counting fiber. I avoid refined vegetable oils which are prone to oxidative damage and have a high ratio of omega 6 to omega 3 and avoid high heat cooking that sears or browns foods which can increase glycation, oxidation and other damaging processes.

When feasting and especially when fasting I’ve found it vital to get enough salt. When I had high blood pressure I was warned into a fear of salt but now add a teaspoon or more a day to my food improving in many ways I how feel and perform and my blood pressure is now quite good without medication.

As for exercise I used to believe in moderate exercise of long duration. But I've been transitioning to minimizing volume and maximizing intensity and getting better results. It's possible to shift many activities and exercise towards peak intensity for minimum duration. I’ll do brief all out efforts resting long enough to enable the next effort. It’s a poor way to rack up miles but a great way to maximize benefit in minimal time and minimize fatigue and recovery time.

This style of exercise may provide less cardio benefits than prolonged moderate intensity exercise. But I get a cardio workout by taking a very hot bath each evening before going to sleep. It promotes relaxation and better sleep. It relaxes blood vessels dropping blood pressure, accelerating heart rate and maximizing the perfusion of muscle with blood enhancing growth and repair. I can get my heart rate well into the cardio zone and keep it there longer than I can by exercise. While bathing I practice meditation/mindfulness boosting relaxation. It’s an opportunity to connect mind to body and improve the ability to evaluate progress.

Extreme heat can increase expression of heat shock proteins which have been shown useful in reducing the toxicity of the mutant AR protein. Maybe due to elevated heat shock proteins I can now tolerate temperatures that would have been scalding. Hot baths can be dangerous, I often push myself into heat shock, sometimes faintingly weak, where I can just slide over the edge of the tub and onto a towel on the floor. Overdoing it and failing to get out of the tub would be bad but I’ve developed a good sense of my limits. If you try it ease in gradually, slowly increase temperature and duration as you learn your limits.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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I've had another setback, hopefully minor. I injured my left knee, probably a tear of meniscus cartilage, which if I'm lucky will fully heal after a few weeks. For the moment I have to stay off of it which isn't too hard since I had previously been preparing for losing the ability to walk by installing an elevator in our home and other changes to make all the essentials (bed, bath, kitchen, etc.) accessible from my homemade mobility scooters. I'm also pleased to discover that with my renewed strength using crutches is fairly easy and I had little trouble going up and down stairs on crutches when my wife and I joined her father for dinner on Memorial day.

The injury occurred on a walk for exercise. Lately I've been walking unassisted, no walker or poles, and walking in bursts as briskly as I can manage. And trying to make a transition to being able to jog again. I can jog in 3.5 foot deep water in a pool. I can jog a few strides with a walker. And I can do a few half strides unassisted. My atrophy was much more severe on my right side both arm and leg than on my left side. I don't know why, but my hunch is that the long duration endurance exercise to exhaustion I used to do was harmful and being right handed I pushed my right side harder and used it more during post exercise recovery which accelerated the atrophy. With my switch to brief high intensity exercise I'm regaining muscle and my right side is catching up with my left but still about 10% weaker.

On my walk I made a few attempts at jogging able to push off with sufficient vigor from my left leg but my right leg is still lacking. The efforts quickly fatigued my right leg and then while merely walking briskly my right leg buckled. Assisted with walker or poles I can often recover and not fall when a leg buckles. For the first time in as long as I can remember I recovered unassisted forcefully shifting weight onto my extended left leg. Which thrilled me but in hindsight I should have taken the fall as it was too much for my left knee and something gave way inside. At the moment it didn't seem like much and with the resulting burst of adrenalin from the near fall I walked on for several more minutes. But by bedtime it was obvious there was a problem as my knee began swelling and stiffening.

That was nearly a week ago and the swelling is gone but the knee is still tender. I'm contemplating resuming swimming but probably should wait a couple more days. These setbacks are frustrating. I've made a lot of progress in the past year. But the pace is uneven. Sometimes I make great gains over just a few days and it motivates me to push to keep the gains coming. With each plateau I feel added pressure to refocus my efforts to break through again. Which leads to reminders like this one that Kennedy's disease imposes limitations that must be respected.
Picture of Bruce
Registered: 09-28-2005
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quote:
meniscus

Todd, sorry to hear about the injury. It was about fifteen years ago I tore my left leg meniscus during a fall. The orthopedic surgeon wanted to operate to repair it. I did some research and declined. I added some exercises to help rebuild that area and was religious in my regularity of exercise. Five years later it was x-ray'd and the tear had totally healed. Good luck!
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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From what I've read if the joint is binding up then surgery to remove displaced material is helpful. But it can also lead to an arthritic joint and recovery without surgery when possible is better long term. My knee got crunchy/grindy at the peak of swelling but is now moving fairly smooth so I'm hopeful it will heal well on its own. I've been looking at exercises for meniscal tears on the internet and hope the tenderness fades soon so I can start.
Registered: 01-08-2013
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Sorry to hear of the set back Todd. Healing can take longer than we like ... be patient
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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quote:
Originally posted by BC Paul:
Sorry to hear of the set back Todd. Healing can take longer than we like ... be patient


Hi Paul, I hope I'm being sufficiently patient. After 2 weeks I resumed walking without crutches though not fast or far. There is little pain although the knee gets hot if I use it much. I think it will be a while before I try jogging again.
Location: Sacramento, CA
Registered: 07-30-2017
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I am new to this forum, although I, as the majority of us with KD, have been struggling with this disease for many years. I am totally fascinated by the reversal of the phenotypic manifestation of your disease, Todd. You have delved wholeheartedly into the research of our condition, and unlike some of us who have avoided the matter (because it can be rather depressing and admittedly, there is also an element of denial). It is truly a miracle that you have reversed the disease to such a significant degree, mainly through lifestyle changes which include a healthy diet, supplements and intelligent graded exercise. I suppose, not everyone of us with KD, are as disciplined and motivated as you have been, so I'd like to pick your brain to tease out the factors that you feel have been most important to your success. Specifically, when did you start taking nicotinamide riboside, and did you subsequently find that it aided your exercise tolerance? Similarly, what about DHA/EPA, and CoQ10? Most likely, it is the total program that has worked for you, and it may not be possible for you to list the factors or supplements which have had the greatest benefit. Nevertheless, I am also curious from a scientific standpoint to understand if there is one or the combination of supplements which
have addressed the pathophysiology of KD and thus allowed your additional efforts, particularly exercise to benefit you.


Stanley Chew
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