Weight Reduction
This post is about my personal challenges with weight, and managing it in light of a metabolic disorder. None of it is meant to be self indulgent or congratulatory, and I promise there are some geeky bits near the end for those patient enough to wade through the content or who want to skip to the end. Sorry for being boring, but not for being me. On with the story:
Back in the day I could have been considered a “bean pole.” I was highly athletic, and though moderately muscular any of the definition was overshadowed by being wiry (though I eventually outgrew the designation “gangly,” thank heavens). This is back when I could afford to be so physically active, and before the effects of the McArdle’s disease steadily clamped down on the stamina. More importantly, it’s when I was also getting sufficient rest to compensate for the effects of the activity I pursued regardless.
I got married, and gained the requisite 10-15 lbs. that generally comes with it, simply due to a change in lifestyle – eating more frequently, and in the company of others on a schedule of well prepared food rather than “when it suits me” and consisting of “whatever’s around.” Even with that gain though I was smack in the middle of the Healthy band of the BMI (though individual results vary depending on body type, I’m fortunate to be a good match for the algorithmic archetype). That weight stayed steady for another year.
Then: The Desk Job. In the interest of advancing my career and furthering the capabilities and savings of our family, I changed from the more free-form telecommuting gig to one that met those requirements but also required standard office attendance. I have no issue with the work, or with good work ethic, but I had been liberally making use of the telecommute arrangement to rest as necessary in order to recover from the day’s strain. With the desk job, that luxury was forfeit. Ignorant of the specific nature of my disorder at the time, I didn’t realize how disastrous this would be.
Seated at the console, plugging away on the code (Object Pascal cum Delphi RAD environment for MS IIS ISAPI filters on the MetaStorm e•Work product) I found myself wearied as usual, but unable to deal with it. I compensated by being exceptionally stubborn, and when that fell short, supplemented with anything available to increase my blood sugar (I was also drinking a lot of water, which I attributed to the poor transition from Washington’s temperate and moist environment to the Utah dessert two years before – but probably only half of what I now know would be required. Whatever the case, whenever Rachelle called I seemed to be in the bathroom). This latter strategy came with predictable side effects, and in the course of five months I put on some 40 pounds.
The rapidity of weight gain was certainly off-putting and distressing, especially as the combined weight of the entire supplemental caloric intake during this time didn’t seem to be adequate to account for the change. I did my best to stabilize and cut back on the snacks, suffering through the stupor instead, and plunging into another round of medical inquiry to find out why I was so tired so I could hopefully do something other than eat to manage energy levels – these of course were ineffectual. Later, changes in jobs, the production of very very cute children, and general demands of the conditions of life slowly edged the weight upward until finally peaking at about 250 lbs. (113kg), at the same time that the last vestiges of regular physical activity (Kishindo martial arts) feel by the wayside.
I was frustrated, to say the least, but also largely to blame – by putting myself and my needs very last, I was doing myself this dramatic (and visible) harm until it interfered with my ability to continue to serve my family. I was so bogged down, waking up exhausted (and frequently nauseous), barely pushing through the day, and repeating. Minor gains in understanding, not necessarily of my condition but my reaction to it, gave me some latitude for correction and over the course of about 2-3 years managed to move from 250 back down to about 220.
The most recent improvements have come from a very complete comprehension of the condition and my situation. The management strategy I’m pursuing now allows me to walk that thin line between capacity and injury, and to retain cognizance throughout even the long days (with few exceptions). Combined with that, I’ve been able to leverage the inability to utilize stored glucose energy to maximize natural ketosis (the same condition the Atkins and other low-carb diets attempt to induce artificially) and consume stored lipids instead – this time without the crippling side effects causing near-comatose stupor. This means that from the first day of the diet I’ve been able to realize dramatic results, as detailed below:
Down, down she goes!
The weight log starts in late January, testing out the Wii Fit I’d gotten the family for Christmas (but was unable to play with myself, having been separated from them). Return visits to the family explain the infrequent initial measurements, followed by my more permanent return in lat March. Throughout April and May I was completing my research into the effects and side effects of McArdle’s before finally establishing the current regimen. This failed to produce any effects on the weight though, so I sought out the advice of my buddy Joel – the most successful dieter I’ve ever seen. Over the course of a year his appearance completely changed, to the point that when we were re-united for a get-together I recognized his wife, and wondered who the heck was with her. Thus was born the references to the “Sexy Sexy Joel Diet” (as the diet belonging to and responsible for Sexy Sexy Joel, as opposed to the old Joel).
His secret? Has nothing to do with all of those “By following these X simple rules!!1!” ads that are all over the internet, nor with fad products, “cleansing,” etc. He wasn’t even exercising – just following the old Weight Watchers™ formula for calculating caloric intake in terms of points (calories / 50 + ( grams of fat / 12 ) – ( min{ grams of fiber, 4 } / 5 ) ) and his allowance for consuming them. Using a calculator and log on his iPhone he followed the simple principles over time to great effect.
I adopted the same pattern, and am pleased to report that, per the graph above, have dropped 32 lbs. in the course of just over 3 months. At this rate I have another month and a half or so to meet my long term goals, after which I can settle into a maintenance pattern. Looking at the trend line it’s very slowly leveling out. It also has that cyclical up-tick I’m at a loss to explain – though I also admit that I haven’t gone into an in-depth analysis for them yet, as they are inconsequential to the average / long view.
For the geekiest bits: the point system, whatever its failings, works. In order to make sure all measurements are taken consistently, they’ve all been done within the same hour of the day, in the same general outfit (light sweats, t-shirt), immediately following my carefully metered exercise (metered to avoid undue metabolic or toxic distress) in the morning before any kind of intake. This does mean that I’ve artificially skewed the measurement to the lowest point in a day’s fluctuation, but given that I’m moving 10-15 lbs. of water though my system throughout the course of a day it makes sense to take a low baseline, since the peak water retention will fluctuate unpredictably (or according to parameters and timings I’d rather than make explicable by mapping when there’s an easier solution). Doing it the same way every day is what makes the biggest difference in collecting the samples, which allow me to apply a general trend analysis instead of a specific margin of error per day. All measurements have been taken on the Wii Fit in order to keep the analysis consistent and to provide a log of the output as well, which I have carefully transcribed and reproduced above using Perl’s GD::Graph module.
I have several other observations as a result of the experience, mostly regarding psychology and sociological trends, which I’ll save for another time. For now I’m excited for the day when I can stabilize enough to buy new pants (which I’d rather only do once, an account of being a cheapskate). Also, while it’s true that I may have an unfair advantage due to the super-charged ketosis, Joel’s experience demonstrates the viability of the approach without such an inside track (a track, I might add, that is not worth the side effects if it can be avoided).
Bon (pétit) apétit!
Hi There,
I just finished reading your blog regarding your experience with McArdles and want to thank you for your detail in recounting your experience.
After a liftime of feeling the way I do and two weeks of researching glucose sorage disease I am sure that I have McArdles and am exhausted living this way.
I have also come to a point in age (47) where my body no longer recovers like it use to and the symptoms are just getting worse. There are a few of us here in Seattle that have found each other because of what we have named our “mystery illness” but we have not been able to find anyone that is expert in McArdles.
I was hoping you could share your contacts here in Seattle.
I also wanted to ask if your memory and brain function was normal after getting back home and into your routine?
Thank you for sharing.
Take care
Terry
The only way to know for sure is to get in to see a Neuromuscular specialist, who can help make the diagnosis and determine and effective regimen. I’m not in the Seattle area anymore, but when I was I saw Dr. Jerold Mikszewski at the Pacific Medical Center (good guy, highly recommended).
If I follow my regimen to the letter, I can cognitively function the majority of the time and am constantly just a little bit miserable (but not as prone to injury).
If I don’t follow it, cognition frequently suffers and I’m occasionally acutely miserable and it’s never worth it.
Finding ways to do the regimen correctly while also attending to work and pressures of life is the real challenge.
If it is anything like my experience, most of the cognitive impairment will be coming from metabolic acidosis rather than any aspect of the McArdle’s disease itself. The best way to combat that is with massive quantities of water and appropriate levels of rest – start with a general proton pump inhibitor like Prilosec OTC (or some other form of omeprazole), since that will stabilize the dietary acids that get thrown out of whack, and then work your way up to at least 1 gallon of water a day (it usually takes me 1.5-2gpd to keep on top of things). Supplement with 1tsp of baking soda dissolved in 16 oz. of room temperature water if you need something a little punchier – but don’t exceed more than 3 of them in a day (and only if you’re on that high quantity of water too), otherwise sodium or alkalinity will get out of whack in the opposite direction and do more harm than good. The bicarbonate will typically take 30-40 minutes to really kick in.
Rest when you need to – actually sleep for 20-90 minutes if your body says so.
Good luck!