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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: 194
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Many of the research papers published on KD that have shown benefits are investigations of parts of the body's metabolic pathways that degrade with aging, for example the work on heat shock proteins, sirtuins such as SIRT1, the proteosome regulator PA28, the FOXO3 proteins, etc. Manipulation of these factors have been shown in cell cultures and mouse models to reduce the toxicity of mutant AR protein. There is hope to find drugs that will safely stimulate these mechanisms providing therapeutic treatments for KD.

There is another possibility. Anti-aging research into the effects of caloric restriction have shown positive effects on some of these factors. In addition caloric restriction has been shown to reduce sex hormones and a reduction of testosterone should limit the amount mutant AR making its way to the nucleus of our neurons. Caloric restriction has been shown to have numerous other positive effects not the least of which is weight reduction and as our muscles weaken having less weight to move can have a profound effect on mobility.

Caloric restriction is merely consuming less calories while hopefully maintaining adequate nutrition. Most people practicing caloric restriction long term with a goal of promoting longevity aim to cut their calorie intake by 10 to 30 percent from their historical baseline at which they would maintain a steady weight.

Most of my life I was 160-165 lbs, but in the past few years as my disability increased I began gaining weight and peaked at 173 lbs. It's worse than it sounds though because I've lost a lot of muscle. Going by typical BMI measurements I thought I was merely overweight, but when I considered the loss of muscle I realized I was actually obese. So for the double benefit of losing weight and hopefully up regulating the metabolic pathways shown to be beneficial to KD I began a serious diet for the first time in my life.

There are risks to dieting. Go too aggressively and one can lose muscle mass, bone density, and suffer a great variety of other ills. I am not a health care professional nor a nutritionist and can't offer guidance. But I informed my doctors of my plan and with their input that it seemed fairly benign, I proceeded to cut much of the carbohydrates (bread, potatoes, rice, fruit juice, anything sweetened, etc.) from my diet while maintaining my intake of protein and fat and greatly increasing my consumption of low calorie vegetables. I also began taking a multivitamin and a dietary supplement nicotinamide riboside (a form of vitamin B3) for which there is some weak evidence showing it may also stimulate some metabolic factors, in particular the sirtuins.

And I began to feel better. Enough better that exercise makes me feel even better instead of worse. And with moderate exercise my strength, endurance and mobility are improving. And my attitude is much improved. I'm looking forward to each day hopeful that these improvements will continue for some time to come.

I'm down to 164 lbs. I'm fairly certain I can safely drop to 140 lbs and I'm starting to believe I can go significantly below that unless I manage to restore some muscle mass. I have yet to form a plan of how I'll make the switch from this weight loss phase to a diet I can sustain indefinitely.

This message has been edited. Last edited by: ToddAllen,
Picture of Bruce
Registered: 09-28-2005
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Todd, thanks for sharing this personal story. A couple of years ago I began to change some of my eating habits to see if it would have an impact. Probably the biggest change was to eat a large salad each day at lunch. It has turkey or chicken for protein and then broccoli, peppers, carrots, and three kinds of beans.

I also stopped eating ice cream (a daily habit for several decades), and stopped between meal snacking unless it is something healthy.

I documented how I felt after every meal and its impact on strength. My sense of taste improved dramatically after a few months. I look forward to the salad every day. If I can't eat it at lunch, it is my dinner meal.

I exercise daily and have for many years. I an currently performing the same number of reps as I did two years ago. It is also easier (less work).

My plan is not to lose weight, but to maintain it since I am already thin.

Thanks again for sharing. I always enjoy your posts.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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Bruce, I bet your habits have done you much good.

Myself, I got fairly off kilter and have had a fast decline. My habits weren't awful and self destructive, but they've been far from ideal and got worse as I deteriorated. I'm guessing I'll make gains back towards where I could have been and then it will taper off.

After more reading and consulting with long term practitioners of caloric restriction I've learned I'm doing it dangerously fast, especially for someone with a neural issue. Supposedly most of us now have a fairly heavy load of pesticides, such as organochlorines, stored stably in our fat. If we lose the fat too fast our blood concentrations can rise dangerously high. And as many pesticides are neurotoxins its particularly bad news for those of us with neurological degeneration.

It's not entirely clear what a safe rate for us is. I suppose blood testing during weight loss is going to be the best approach.

Anyway for the moment I'm going to slow down weight loss by reworking my diet plan.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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I started out losing roughly 2.5 lbs/week but for the past week I've slowed that to about 1 lb/week in reaction to the concern about fat sequestered toxins being released too fast. I've got an appointment scheduled with my rheumatologist in a week and will hopefully get some extensive blood work done to compare against previous tests before I undertook this approach to get my health back under control. Maybe they will be able to blood test for toxins and let me know if I can safely resume a faster rate of weight loss.

Hopefully I can at least continue targeting a 1 lb / week weight loss for another 30 to 40 weeks until most of my pinchable body fat is gone. Losing the fat should do wonders for my mobility even if I don't manage to continue gaining strength for much longer. I'm currently trying to eat 2000 calories/day and it is challenging to eat so much food after a few weeks at 1000 to 1200 calories per day. Once I eliminated all concentrated carbs and have switched to eating mostly vegetables and fruits I need to eat a lot more volume of food. I've increased consumption of some higher calorie (more fat) foods such as avocados, tree nuts, olive oil and cheeses so that I could get enough calories and slow the weight loss to a hopefullly safe rate. I've switched to almost all organic foods to try to keep intake of pesticides low. I'm spending more on food but it's not all that much compared to the cost of health care and medications.

Before dieting I could walk about 50 feet before risking a fall from sudden muscle collapse. And it hurt, I have a minor heel spur on my right foot and by the end of each day it was most unpleasant.

After a week of dieting I began very modest exercising, stretching, and repeating common tasks which were becoming challenging like sitting/standing, picking small objects up from the floor, etc. After another week I began taking walks outdoors with my walker and improved my speed and distance with every trip. After another week I managed a couple hundred feet shaky bike ride in first gear.

I made very rapid gains, similar to when one gets a cast off and the muscles which were immobilized begin to recondition. For the past few days I've been plateaued at walking about 1 mile / day still using a walker, and cycling 10 miles per day. On my walks I tend to push right to the point of collapse and have misjudged and fallen a couple times. Fortunately I didn't get hurt and my wife has been coming with just in case. At this level of activity I've started to get some modest muscle cramps a couple hours after a walk and that is the main factor holding me back at this current plateau. It does seem though like I'm still gaining in strength and speed and I hope to resume increasing distance if the cramping subsides.

Over the past few days I've noticed my fingers and toes have begun to uncurl. For 10+ years I've been unable to straighten my outer toes or the fingers of my left hand. But now only my pinky and the outer little toes are still unable to go fully straight, but the rest I can clench and straighten with improving control. I'm hopeful this is a sign of improving nerve function and I think it is related to my improving sense of balance. Being able to straighten my fingers means I should be able to wear gloves again. I had switched to mittens which is fine in very cold weather, but I prefer gloves when it is warmer.

The reason I'm walking so much further is I'm able to place more weight on the balls of my feet instead of walking flat footed with too much weight on my heels. And I'm able to walk with more bend in my knees. I'm hopeful that I'll soon have the strength and confidence to do short walks without the walker and I'm thinking about the day when I can jog a few paces. Even if I don't manage to rebuild much muscle mass, this still might be possible if I lose sufficient weight. Right now trying to carry around an additional 35 lbs would be crushing, so having 35 lbs less fat to haul about should be hugely helpful.
Location: Arkansas
Registered: 05-17-2012
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Thanks for sharing your experience Todd. Very interesting. Glad you are getting results with the diet. I didn't think about the long term benefit of being a little lighter weight and KD. Makes perfect sense. I have naturally lost weight since my diagnosis to the point that people continue to ask me if I am ok. I have lost about 50 pounds in 4 years. With the loss of weight I have felt the cold weather more which has made it difficult for me to stay outside when the weather is cold. I agree with you though, better to be lighter weight when your muscles atrophy.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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Hi Ron, I think tendency for most of us with Kennedy's is to fear wasting and see not losing weight as a good thing. I get weighed with most every visit to my doctors and I once asked why and he said an abrupt weight change is a warning sign. So I long thought keeping a steady weight was good even though I was merely putting on pounds of fat obscuring the amount of muscle lost. Then as I really slowed down in the last few years I began to gain weight. I began to cut back on how much I ate, but not as fast as I was slowing down and I continued to add a pound or two each year.

Here is a paper from 2011 describing how the SIRT1 enzyme detoxifies the mutant androgen receptor protein which appears to be responsible for most if not all of the degeneration caused by Kennedy's disease.
http://www.jneurosci.org/content/31/48/17425.full

And here is a paper that provides a good background on sirtuins including the SIRT1 enzyme and talks about the research into activators of these enzymes. It discusses how things such as caloric restriction, exercise and a variety of compounds are believed to promote SIRT1 activity.
http://pharmrev.aspetjournals....ontent/64/1/166.full

I went with the supplement nicotinamide riboside because it has been shown to be a precursor to NAD+ in the nucleus of cells which is needed and consumed by SIRT1 when deacetylizing proteins such as the mutant AR. And it is in the nucleus of neurons where the mutant AR protein appears to cause the most damage. A cheaper supplement, nicotinic acid, the original form of vitamin B3 might also be helpful as it is also shown to increase NAD+ levels, though not inside the nucleus of cells. Nicotinic acid is also not recommended when liver enzymes AST/ALT are elevated as is typically the case for people with Kennedy's disease. Another supplement resveratrol is also shown to boost SIRT1 activity although there appears to be a risk of kidney damage as the human trial was cancelled due to several participants developing kidney issues.

There has been a lot of research on NAD/SIRT1 with respect to aging and progressive degenerative diseases and in particular diseases of nerve and muscle. Unfortunately I have been unable to find any hard numbers regarding how much benefit can be expected from any of these approaches or at what dosage level or the amount of caloric restriction or the amount and type of exercise one should pursue. So I'm taking a shot in the dark and hoping to get lucky. And I'm hoping blood testing and EMGs might help identify what is working and how much...
Location: Arkansas
Registered: 05-17-2012
Posts: 13
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Good informative articles. Please let us know how you are doing. As you write, I hope you get lucky and figure it out.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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Ron, a couple days after my last post I had some trouble. The gains in walking and cycling were getting harder and harder to make. I went out for my morning walk and my legs gave out at a distance less than I had done my previous walk, resulting in a hard fall. That afternoon on my bike ride when stopping at an intersection halfway through the ride my leg gave out again resulting in a harder fall.

I had abrasions on both knees, one elbow and the side of my face and the next day I took it easy. But the following day much to my surprise my morning walk went great and I decided to change my routine. I had been walking morning and evening with a bike ride in the afternoon. When I first started out and could barely go a block either walking or biking and a few hours rest was sufficient to be ready to match or better my previous performance. But I've reached a level of exertion where I apparently need more recovery time.

Lately I've been doing a bike ride one day, a walk the next day and an hour or two of indoor exercises on the third day with most of those exercises fairly low exertion, focusing on stretching and balance, though I'll do a small amount of things I find physically demanding such as repeatedly sitting and rising to standing or going up and down a few stairs super slow trying to use the hand rails as little as possible. My indoor exercising is very unstructured and I keep changing what I do. I can't do typical exercises like push ups or even jumping jacks so I find things to do within my limits and then push a little trying to expand those limits. With the new pattern I'm back on track and making excellent gains each session. Today I walked a mile with my walker in 55 minutes and yesterday I biked 12 miles in an hour and 55 minutes. I'm continuing to lose weight, this morning I was 160 lbs, the lightest I've been since high school, though I've got about 30 lbs less muscle/more fat than I had back then and I'm expecting to drop to about 130 lbs over the next 30 weeks. I'll likely adjust that target as I get closer to it.

I had bloodwork done on the 28th of June. I'll post about when I get the report. At some point I want to do a more thorough write up detailing my succession of choices for diet, exercise and supplements/medications, the reasons for the choices and my guesses as to how well each is working. A sample size of one makes for a poor experiment, but on the other hand what we achieve in our own bodies may add insight to what researchers do with mice and cell cultures.


quote:
Originally posted by Ron M.:
Good informative articles. Please let us know how you are doing. As you write, I hope you get lucky and figure it out.
Location: rochdale. england.
Registered: 03-28-2011
Posts: 41
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Hi Todd. I find your posts of great interest, keep up the good work. - Graham.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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Thanks Graham. Maybe you will find today's post interesting/useful too.

I got my blood test results on Friday and spent some time this weekend trying to understand them. Here are my results and my current thoughts.

CPK 1432, 1144 6 mo ago, ref range 9-185 U/L
This is an indicator of muscle damage, I was hoping my change in diet and supplements would minimize the increase with resumed exercise. I was at 1760 a few years ago when I stopped exercising and far higher in my 30s when I exercised vigorously. My loss of muscle since then may be the reason it hasn't risen as high this time, or maybe the combination of things I'm doing now is helping a little.

aldolase 16.2, 18.2 2 yrs ago, ref range 2-8 U/L
This is another indicator of muscle damage. It's an enzyme found in muscle involved with glucose metabolism. The dropping level might be a sign that my regimen for addressing SBMA is helping or it might merely be an indication of my diet shifting me towards metabolizing more fatty acids and less glucose. I need to find guidance to better understand this.

Testosterone binding globulin, 81, ref range 10-80 mmol/L
Testosterone accelerates SBMA, my mother had high testosterone and developed significant symptoms of SBMA in her late 40s. I had a previous test a few years ago which also showed me at the high end of the reference range. I've been told testosterone fluctuates and multiple tests are needed to really pin it down. I was hoping my diet would have lowered it more and perhaps it eventually will. I'm going to push this strongly now with my doctors to further evaluate and hopefully come up with a way to get my level to the bottom of the reference range or lower. Dutasteride, a testosterone antagonist, is a drug that has been trialed for SBMA that I believe was shown to be modestly beneficial. I'll look into it more closely and try to decide if the benefits might outweigh the risks in my case.

human growth hormone, <0.1, ref range <10.8 ng/mL (they noted checking this twice to rule out making an error)
HGH may slow SBMA. In a study of a mouse model of SBMA growth hormone (I think IGF1 specifically) was shown to promote muscle regeneration and preserve nerve function. I wasn't expecting this result though it might explain a lot. I've long felt I've had little capacity to recover from injury. When my wisdom teeth were extracted a lingual nerve was bruised resulting in a burning sensation in my tongue. The surgeon said this was common and would resolve in a couple weeks, but 15 years later it has only subsided from a fierce burning to a mild burning. And strenous high intensity activity such as body building style weight lifting or any exertion that results in deep muscle strain can take 2 or 3 weeks to recover instead of the 2 or 3 days that it should. I know human growth hormone is used therapeutically for some conditions and I need to find out if it is appropriate for me.

MCV, 96.6, 93.2 6 mo ago, ref range 81-99 fL
This is a measure of the size of red blood cells. High results can be an indicator of macrocyctic anemia a condition that can develop in response to a B12 deficiency. A few years ago I was found to have a severe B12 deficiency which was immediately addressed by a series of injections. And followed that with an oral B12 supplement for maintenance. My neurologist was deeply alarmed as B12 deficiency causes neurological damage that untreated can become so severe it results in death. B12 is found in animal based food products such as meat, fish, eggs, dairy, etc. I had been eating mostly vegetarian for decades for ecological reasons and also believed it was relatively healthy and was oblivious to the risk of B12 deficiency without supplementation. And I had read that vitamin supplementation is unneeded for those with good diets and assumed I was doing ok. And for years I was developing neuropathies consistent with B12 deficiency that my doctors and myself assumed was somehow related to SBMA and failed to properly investigate. My doctors knew I was eating mostly vegetarian and they still failed to find this for a very long time. I've since read B12 deficiency is a commonly under diagnosed and easily prevented cause of neurological damage. And it can effect anyone, even those eating lots of animal products as there are multiple issues that can cause poor B12 absorbtion and the ability to absorb B12 declines with age. Everyone with SBMA who hasn't been evaluated for B12 sufficiency should get an evaluation and be sure they aren't deficient. Starting on a supplement before evaluation may hide the degree of deficiency. As for myself, the supplement I take is 500 mcg which claims is 8000% of the rda. It seemed ridiculously high so I faded back to taking it roughly once/week. With the tests showing my MCV value is again rising I'm going back to once/daily.

MCHC, 33.3, 34.9 6 mo ago, ref range 32-35 g/dL
When high it is another potential indicator of B12 deficiency, so I'm glad to see it falling and it might indicate increasing B12 supplementation is not needed. Supposedly there is little to no risk with supplementing B12 at too high a level so it seems most prudent to go back to the higher level for now.

WBC, 7.4, 6.8 6 mo ago, ref range 3.5-11.0 10*3/uL
RBC, 5.22, 5.17 6 mo ago, ref range 4.47-5.91 10*3/uL
hemoglobin, 16.8, 16.8 6 mo ago, ref range 13.5-17.5 g/dL
hematocrit, 50.4, 48.2 6 mo ago, 41-53%
RBC dist width, 13.1, 13.2 6 mo ago, ref range <14.3%
platelet count, 265, 254 6 mo ago, 150-450 10*3/uL
mean platelet volume, 12.0, 11.7 6 mo ago, ref range 9.0-12.6 fL
All are ok?

albumin, 5.2, 4.9 6 mo ago, ref range 3.5-5.0 g/dL
Increased blood albumin may be due to dehydration or a high protein diet. I've modestly boosted protein intake and greatly increased it as a percentage of my diet by reducing carbohydrates in an effort to retain lean muscle mass while dieting to lose fat. Water is now the only liquid I consume but I've greatly increased the amount I'm drinking. Still I think the rising albumin is an indicator more of dehydration than protein as I've long had an issue with periods of greatly elevated urine flow - such as experienced by diabetics, though I've never been found to have glucose in my urine or extremely elevated fasting blood glucose. The urination issue (and many other issues I've had) may be related to elevated norepinephrine. In the past I tried to get my doctors to look at this and was referred to a psychologist which resulted in prescriptions for anti-anxiety medications I never filled or took. Hopefully now that I have multiple blood tests showing other hormone imbalances such as the elevated testosterone and lack of growth hormone I can get some traction with an endocrinologist and get this properly investigated.

C-reactive protein, <3, <3 3 yrs ago, ref range <5 mg/L
ESR westergren, 4, 3 1 yr ago, ref range 0-25 mm/Hr
These are markers for inflammation. I think these numbers are ok. I believe my low carbohydrate diet ought to be anti-inflammatory and my increased exercise might be increasing it short term, but long term ought to be anti-inflammatory as my fitness improves. I've started eating some flax and chia both rich in omega 3 fatty acids which should be anti-inflammatory at least with respect to cardiovascular health. I've also begun taking a DHA/EPA supplement Ovega-3 500 mg/day.

glucose ser/plasma 92, ref range 60-109 mg/dL
Higher than I expected given my low carb diet. Maybe this is elevated by high norepinephrine?

chloride 98, ref range 95-108 mmol/L
sodium 141, ref range 134-149 mmol/L
potassium ser/plasma 4.5, ref range 3.5-5.0 mmol/L
anion gap 18, ref range 6-15 mmol/L
I'm glad my potassium level is not too high as I take potassium losartan for blood pressure and eat a lot of potassium rich foods. I think the high anion gap is a calculated value which is due to my chloride being low normal and my sodium being higher. And I think that may be a normal side effect of the diet I'm on.

carbon dioxide 25, ref range 23-30 mmol/L
I think this low normal value is good. Being too low can be a sign of dehydration or liver or kidney damage.

BUN 15, ref range 7-20 mg/dL
creatinine 0.5, ref range 0.5-1.4 mg/dL
glomerular filtration rate estimate, >120, ref range >59 mL/min/BSA
Creatinine is probably low due to having low muscle mass and maybe also due to high urine volume. The high calculated GFR is probably meaningless due to the likely reasons for low creatinine level.

calcium, 10.2, ref range 8.4-10.2 mg/dL
High normal is hopefully ok. Too high can indicate excess parathyroid hormone leaching calcium from bones. This would be bad in combination with long term caloric restriction which can accelerate loss of bone density, especially with aging. Could my other hormone abnormalities be related to elevated PTH?

bilrubin total, 0.4, ref range 0.1-1.0 mg/dL
ok?

total protein, 8.0, ref range 6.0-8.3 g/dL
High normal hopefully just another indication of mild dehydration?

alk phos serum 32, ref range 30-120 U/L
Low normal hopefully indicates a healthy liver? My vitamin D level was low this winter, but I began taking a supplement and I've been getting more sun with the warmer weather. Coeliac's diseas is also listed as a cause of low levels. I don't think I have it, though I do get a Coeliac's type of response to eating most legumes which I've been increasingly avoiding for the past few years.

AST (SGOT), 66, ref range 8-37 U/L
ALT (SGPT), 53, ref range 8-35 U/L
Probably due to high CK and not indicative of liver dysfunction. I've been taking vitamin B3 as nicotinamide riboside 250 mg/day and recently added B3 as nicotinic acid 500 mg/day which at higher levels can lead to liver issues.

cholesterol 228, ref range 120-199 mg/dL
HDL cholesterol 58, ref range 40-80 mg/dL
LDL cholesterol 123, ref range 60-129 mg/dL
triglycerides 235, ref range 30-149 mg/dL
These numbers are a marker for future cardiovascular trouble. They've all been poor for a long time. I had a doctor want to get me started on statins when I was 30 which I refused because the list of side effects was the list of issues I was already experiencing to some degree. I was hoping my low carb fat burning diet would have lead to a bigger improvement. My guess this is due to my hormone imbalances in particular having elevated norepinenphrine.

I've recently read that for most accurate results on a fasting lipid panel one shouldn't exercise. From my early 30s bicycling was my primary transportation, perhaps past results are suspect. On this most recent blood test I also biked there and it was a particularly grueling ride into a headwind followed by a long walk without time to rest as I didn't allow enough time for the wind.

I don't yet know, but my expectation is strenuous exercise is raising my blood levels of glucose and triglycerides as my body tries to provide straining muscles with fuel while I don't have much muscle to soak it up.

This message has been edited. Last edited by: ToddAllen,
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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The past couple weeks have gone well. I did not plateau and am making good gains in speed and distance on my walks and bike rides.

I extracted my weight bench, barbells and weights from a dusty corner of the attic packed with stuff from past eras of life that I hadn't yet bothered to throw away. Weight lifting feels good. I had to start out with empty bars weighing just a few pounds, similar to how I could barely walk or bike when I started those activities a couple months ago. But as with those, the initial gains are great as unused, atrophied muscles start toning up. I'm increasingly sure I'm past that point now with walking and biking as it seems I'm regaining muscle mass and not just improving tone. I expect the same for the weight lifting and scheduled in my phone's calendar to take selfies once a week to document my expected transformation. I'm somewhat regretful I didn't start out taking photos though perhaps it is better to forget how bad I looked.

In my 20s I could push really hard, not suffer much for it and bounce back stronger and fitter. In my 30s, if I pushed too hard I got injuries. I started with ankle sprains but later advanced to injuring knees, wrists, elbows, shoulders and back. It seemed there were endless ways to discover chronic pain. In my 40s I went from fearing overdoing it to avoiding exertion as much as possible. When I did exert myself, such as digging a hole to bury a pet, it would leave me not just sore but fatigued for days.

The muscle cramping was probably a bigger factor than joint pain in giving up exercise. Post exertion muscle cramps don't last as long as joint pain, but can be more intense and debilitating in the short term. The cramping subsided as my activity level dropped and the joint pains eventually mostly faded away too. Until a couple years ago. As I became much weaker I found everday things becoming problematic. Sit too long at attention such as when on the computer and the steady low strain of remaining erect would lead to back and neck pain coming from both muscles and joints. Bigger exertion like rising to standing from the ground, or later from just a chair could result in strain and pain.

Yesterday evening I did a bicycle ride with a large group of people. I rode 22.5 miles in 3 hours, including several bridges, overpasses and other small hills. It was breezy and the headwinds were sometimes brutal. For the last hour I repeatedly neared collapse only to be saved by a too short pause at a stop light. When I got home I had to call my wife out to assist me dismounting the bike and get into our house without falling. Muscles were cramping and spasming throughout my body and I could barely stand. I was tempted to take a couple ibuprofen and lie down for a bit but had recently been reading body building websites which advise to eat a high quality meal immediately after a strenuous workout. The advice is for high balanced protein intake and even higher carb intake. However, I'm increasingly feeling that staying in ketosis is a significant factor in my rejuvenation so I went for the protein while risking some fats and keeping carbs low.

I poached 3 eggs and reheated a pound of previously steamed vegetables, dumped on a half cup of mixed tree nuts and a cup of plain whole milk yogurt. And on a whim took another dose of several supplements, nicotinic acid, nicotinamide riboside, B12 and coQ10. I felt better as I ate and in a couple hours I felt good, went to bed and slept great. I awoke without pain, feeling strong and energetic, a mild burn lingering in my muscles making me crave doing it again.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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For the past month I've continued to lose weight, gain a little muscle and increase my performance in every activity I measure. I'm haapy many tasks that were becoming increasingly hard, such as opening bottles, using clothespins to hang laundry, sitting down, standing up, climbing stairs, walking on grass, etc. are getting noticeably easier.

Here's my current regimen & diet.

Daily
3:00 AM: melatonin 3 mg, nicotinamide riboside 125 mg, 1 cup water
6:45-7:00 AM: stretching exercises
7:15 AM: nicotinamide riboside 125 mg, 1 cup water
MWF
7:30-9:30 AM: bicycle 5 miles round trip, swim & water exercise 30 minutes in public pool 80F
TuThSa
7:30-8:15 AM: upper body workout - free weights
8:30-8:45 AM: cold bath 68F
Daily
10:00-11:00 AM: breakfast ~800 kCal, 3 cups water, internet/email,
algae derived Omega 3 oil dha/epa 500 mg, ubiquinol/CoQ10 100 mg, nicotinic acid 500 mg, D3 1000 IU, B12 500 mcg
1:45-2:00 PM: lunch ~250 kCal, 2 cups water, nicotinic acid 500 mg
Su
2:00-5:00 PM: bicycle ride
Daily
5:00-6:00 PM: dinner ~800 kCal, 3 cups water, nicotinic acid 500 mg
MWF
8:00 PM: 30-60 minute dog walk with wife using a wheeled walker
TuThSaSu
8:00 PM: 30-60 minute dog walk with wife using trekking poles
Daily
9:15 PM melatonin 3 mg, nicotinamide riboside 125 mg, 2 cups water
9:30-9:45 PM: hot bath 116F, max pulse 150 bpm
9:45-9:55 PM: seated recovery from bath until pulse below 100 bpm
10:00 PM: sleep without covers or just a sheet in cool room ~74F


DIET

~ 1850 kCal/day, 820 kCal fat, 770 kCal carbs, 260 kCal protein
2 tbl ground raw flax seed
2 tbl chia seed
1 tbl other seed - sunflower, sesame, hemp, mustard, etc. (ground raw, sprouted, boiled)
1 tbl extra virgin olive oil
1 tbl fat (any other oil, butter, lard, etc.)
1/4 cup nuts
1/2 cup cooked seed/whole grain (quinoa, oats, lentils, wild rice, black/brown rice, mung beans, buckwheat, etc.)
2 eggs
1 ounce animal protein (lean grass fed beef, free range poultry, organic liver, wild seafood)
100 kCal dairy (organic whole milk yogurt, ricotta or cottage cheese, rarely other cheeses)
200 kCal raw vegetables (lettuce, spinach, brassicas, carrots, celery, allium, etc.)
200 kCal steamed/boiled veg/fruit (brassicas, allium, sweet potato, squash, mushrooms, chard, spinach, egg plant, etc.)
350 kCal raw fruit (berries, tomatoes, bell pepper, citrus, avocado, melon, mango, peaches, apple, banana, etc.)

I've mostly stopped frying, grilling, baking or any other cooking that browns or blackens food. I'm eating more raw but still steam, boil and microwave quite a bit. I'm avoiding processed foods, even things like sauces and salad dressings though I use vinegars and prepared mustard.

The daily schedule is not rigid. Often other obligations interefere and I frequently have good and bad days where I can do more or less. And a lot of my daily routine involves other chores and tasks some of which are physically demanding (for me) and may impact what I do for exercise.

The diet is rough averages with quite a bit of daily variation and I use
https://cronometer.com/ to track macro & micro nutrients
I'm targeting 1 lb/week of weight loss, currently ~152 lbs (down from 173).
I expect to increase calories/taper the weight loss rate when I'm below 140 lbs
and stabilize weight when I stop seeing benefits in physical performance
and/or health bio markers, perhaps 130-135 lbs, maybe more if I can build significant muscle.

I jumped into dieting rather aggressive at 1000 kCal/day for the first 3 weeks starting mid May. Everything else I've transitioned into gradually. As I started making gains in performance and health I became more motivated to push things further and seek faster gains. Now I consider each thing I do and every bite of food an opportunity to get better and I want to make the most of it. I'm seeking new things to try and constantly evolving what I'm doing, hoping to keep making gains for a long time to come.

In my next post I plan to discuss the reasons for the various things I'm doing (and not doing), referencing the various scientific papers that motivated changes and what benefits I've perceived from the various elements of my regimen.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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Shortly after my previous post I was having issues with increasingly erratic bowel transit time leading to periodic bloating. Which also lead to erratic exercise performance although the overall trend remained positive. By the middle of September I was fairly certain I had an inguinal hernia and sought medical care. It was a somewhat tortuous process made worse by rapid deterioration of the hernia.

My current condition is a bilateral hernia that has descended into the groin and no longer reduces when lying down but is only significantly painful when standing. If it becomes acutely painful while on my back I'm advised to go to the ER for immediate surgery, otherwise I will have surgery on the 25th. If it doesn't deteriorate further the surgery and recovery should be quick and easy and I have my fingers crossed to be cleared to fly out Nov. 8th for the KD conference in San Diego.

A large percentage of men have a predisposition for this type of hernia and it is quite common. Atrophied abdominal muscles was an aggravating factor for me. My exercising, weight loss and new eating patterns might each have been factors. I don't know if I "caused" this or if it could have been avoided if I was more attuned to the risk. In every other way I've had a tremendous gain in health and performance and once I'm successfully patched up I look forward to resuming my efforts and continuing my progress.

I made progress toward my goal of being able to jog again and was expecting to show off with a short jog at the KD conference. Pretty sure that won't be happening, but I'm still hopeful I'll be able to walk from the airport to the hotel.

A few recent numbers:
weight 140 lbs
resting blood pressure 105/65
resting pulse 65
triglycerides 104
hdl 79

So my outlook with respect to cardiovascular disease is much improved. I'm starting to like the way my body looks and feels with better muscle tone everywhere and gaining a little muscle mass in my chest and arms. I still have pinchable fat in all the typical places, probably 20 lbs worth and expect to be roughly 125 lbs by the end of the year at which point I will change focus from losing fat to gaining muscle.

After surgery I want to write in detail how I've been evolving my regimen and why with references to relevant research and my impressions of what has been most effective for me.

But for now, here's a few things I've found interesting/helpful:

Since the paper in July showing a high fat diet is amazingly beneficial for mice with KD I've been upping my fat intake, even saturated fats which I used to fear. And this makes me much more comfortable doing so...
YouTube: Dr. Peter Attia: Readdressing Dietary Guidelines

I've also been experimenting with heat and cold stress as therapy via baths. And then I stumbled on this which has provided much guidance in refining my practices.

Scroll down past the big blank spot on this page to read Dr. Rhonda Patrick's discussion with many references of the effects of heat stress therapy.

And her report on the benefits of cold therapy.
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
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My hernia surgery date got bumped up and it was repaired laparoscopically Oct 20th. The hernia was making life miserable and untreated might have lead to a miserable death so it is amazing to be living in a time and place where one can go to a hospital, be put to sleep and wake up cured a couple hours later with only 3 tiny incisions to show for it.

My post-op condition was more tender than hoped. I wanted to avoid pain killers but I needed some for a few days. A small amount of groin swelling and discomfort still lingers but I've resumed the activities and exercising I was doing prior to surgery. I'm itching to resume body building type weight lifting but need to heal more, though the recommendation not to lift more than 10 lbs for 6 weeks post surgery is too conservative.

I flew to San Diego on Nov. 8th to attend the KDA conference and managed a goal of walking everywhere during the trip, including between the airport and my hotel. I can't jog yet, but I'm optimistically exercising and rebuilding the needed muscles. The hernia caused a month of inactivity but little muscle loss despite eating so little I lost 10 lbs of weight. My confidence I can manage KD with diet and lifestyle is growing.

Most everything about the trip and the conference was wonderful. Highlights were being greeted warmly by Susanne Waite and Dr. Diane Merry at the banquet, both of whom I had only seen over a decade ago at a previous conference in Chicago. I intend to make these conferences an annual event going forward. Of the presentations I was most delighted with Cindy Jordan's. She playfully pointed out how woefully inaccurate/outdated the description of KD is on the NIH's website when one takes recent research into consideration.

I started to notice the discrepancy six months ago when I began this latest effort to address my hastening deterioration. Looking back I see how I was still influenced by the misinformation of the NIH and I regret the wording of past posts. My current thinking on KD will also need revision. I hope I'll connect with a doctor or researcher interested in helping me verify, demolish or tweak my current beliefs as an accurate conception of this disease is key to managing it.

KD is no more a neurological disease than diabetes. Much of my deterioration was due to having undiagnosed/untreated type 2 diabetes. I'm glad it wasn't diagnosed and treated because the standard of care for diabetes is to treat the symptoms and not the cause. I was increasingly expressing all of the symptoms of type 2 over the past 20 years though the most defining one, very bad blood glucose homeostasis hadn't gotten sufficiently bad.

Type 2 diabetes is caused by eating more carbs, especially high glycemic carbs, than one's body can healthily process leading to elevated insulin as the body uses its final trick to keep blood glucose from rising too high. Insulin is a potent hormone stimulating such vital processes as the uptake of amino acids for protein synthesis in muscle and other tissues. Like other signaling mechanisms in biology, chronically elevated insulin blunts its signal. Our blood glucose rises to damaging levels that can no longer be ignored and doctors prescribe additional insulin to save lives. The problem is too much carbohydrate exceeding the body's most potent coping mechanism. The answer is to reduce carb consumption not more insulin.

Last year there was a "metabolic therapeutics" conference hosted in Florida where many doctors and researchers shared their knowledge of the benefits of consuming fat for treating diabetes, cancer, heart disease, and neurological disorders. The conference was recorded in it's entirety and can be found on YouTube or here under RESOURCES/2016 archive
http://metabolictherapeuticsconference.com/

As you cut carbs you have to get calories elsewhere. Too much protein is as bad if not worse than too much carbs. The last choice, one that produces no insulin response, is fat. The frustration of the presenters with the current medical establishment's lack of focus on nutrition and the institutionalized mistaken demonization of fat is palpable. Fat has drawbacks for those with impaired fat metabolism but it doesn't appear to be a common severe issue. Over consumption of carbs is a common severe issue as the epidemic of diabetes and related metabolic disorders is growing.

My blood glucose control remained better than that recognized as defining type 2 diabetes and yet I speculate I was diabetic because I developed the symptoms and I expressed all of the biomarkers commonly known as "metabolic syndrome" recognized as an excellent predictor for developing diabetes. With the reduction of carbs the biomarkers and symptoms are improving. I feel better and my issues with KD have become more manageable. I'm gaining muscle and performance while losing weight. Insulin is regaining its anabolic power. I save some of my daily ration of protein and carbs to eat after a hard workout. I rest for an hour or so post meal, then take a very hot bath. After recovering from the bath I go to bed and immediately fall into a deep rejuvenating sleep. I awake with a sense of how hard I've worked each muscle and feel the renewal. In the morning I take a very cold bath. It momentarily feels awful but afterwards I feel energized and painless which fadingly lasts several hours.

There is synergy between KD and diabetes. KD contributes to skeletal muscle loss which as the primary sink for glucose disposal increases ones propensity for diabetes, especially as our metabolisms degrade with aging. Recent research shows a down regulation of proteins involved in glucose metabolism in KD. Diabetes probably accelerates KD. Both have been shown to involve mitochondrial impairment of the most common variety, membrane depolarization, and I expect damage from each source is additive.

Diabetes on top of KD is a factor for many of us. Metabolic syndrome is increasingly common for the population at large and it probably is a more common and severe issue for those of us with KD. One of the KD conference presentations was about fatty liver. Fatty liver and hyperlipidemia are common among those with KD and those with diabetes. The presenter stated fatty liver can be managed with an appropriate diet. When I questioned her she stated the appropriate diet was a "healthy low fat diet"! KD will remain untreatable as long as experts keep telling us the exact opposite of reality and we remain dumb enough to believe them.

Muffins were served each morning at the conference and I watched in silent horror as people with KD and apparent metabolic issues ate them. When I was in the ICU at the University of Chicago Medical Center after surgery they offered me food from their "healthy" menu almost all choices high carb, many high glycemic, with not a single healthy fat to be found. Fasting was the healthiest choice offered. I told some of the KD researchers I have been in and out of ketosis over the past 6 months mostly while calorie restricted but am currently doing very well after further cutting carbs and dramatically upping my fat intake to remain in ketosis while slowing weight loss. Concern for the damage I might cause to my health was expressed... Most KD researchers focus on finding drugs to treat KD. I hope it will be possible to get someone to consider the ideas and experience of a non-expert such as myself.

With the involvement of others, especially doctors and researchers, ideas could be tested quickly and refined to better manage the disease without the delays inherent in testing and approving drugs. Professionally tested lifestyle recommendations would help KDers to start helping themselves. I'll increase my efforts to improve fitness and strength and perhaps achieve enough success to inspire someone to take notice and undertake the effort to test my approaches to KD.

For those with KD desiring further info, I suggest reading "The Wahls Protocol" by Dr. Terry Wahls. I previously skimmed it a few months ago after someone mentioned it here in the forums and reread it while flying to/from the KD conference. It's about a physician's self treatment for MS and their journey to health culminating in a ketogenic diet somewhat similar to where I'm currently at. And it goes into greater detail on many issues than I can address in a forum post.

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Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 194
posted   Hide PostReply With QuoteReport This Post  
Months ago when my walking began improving with diet and exercise I wondered if I'd be able to jog again if I lost enough fat and gained a little muscle. Eventually I became confident to the point that it was disappointing and somewhat discouraging when it didn't happen as fast as I wanted. In the last month I've begun jogging a few unsteady steps. I can only do it when well rested. I barely get airborn on the first few strides and then I'm in danger of falling and must stop. The exertion leaves me barely able to walk without a pause to rest. As pathetic as this is, I look back at where I was and feel satisfaction and I hope this is a beginning.

I'm evolving my thoughts and approach to managing this disease. I'd like to stop calling it Kennedy's disease. Maybe call it Kennedy's challenge. I'm hoping/believing I'll manage to live a relatively normal full life with modest impairment irregardless of if/when a treatment is found.

My hernia, the surgery and recovery showed I can fast or go very low calorie for a while without major muscle wasting. And I've learned I can gain muscle faster when I'm not trying to lose weight. I got down to 138 lbs and was a few lbs ahead of my targeted 1 lb/week weight loss and switched focus to gaining muscle. Now I'm 145 lbs. I can only imprecisely measure fat/muscle with skinfold calipers which suggest increasing muscle mass and a slight decrease in bodyfat %. I've also gained strength. While I have excess fat I intend to spend more time in weight loss mode but hope in time to transition to spending more time building muscle.

Building endurance had been my goal and I was tracking how far I could walk or bicycle. Lately I've been more focused on strength and I've found it more effective to exercise more intensely for less time. Instead of going for a long walk at a slow pace, I'll walk as fast as I can for a few minutes until I'm about to collapse, rest for a minute and continue for about 15 minutes total. Winter weather encourages this approach outdoors, but this pattern has been effective for all of my exercising, weight lifting, stair climbing, etc.

Along with exercising for strength I was eating for strength, eating more protein especially whey concentrate and BCAAs and eating a little carbohydrate with dinner such as sweet potato or a piece of fruit and throughout the day eating high fat foods to satiety.

But now I'm back to trying to lose 1 lb/week and counting calories again. One thing new I'm trying is one day a week of near fasting. I've only done this a couple times so far and I'm not yet sure I'll find it worth continuing.

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