Comments on: Weight Reduction http://blog.paultomlinson.net/2009/10/weight-reduction/ Forest, trees, and balance within. I guess. Mon, 25 Jul 2011 00:18:05 +0000 hourly 1 http://wordpress.org/?v=3.0.1 By: Paul http://blog.paultomlinson.net/2009/10/weight-reduction/comment-page-1/#comment-1714 Paul Tue, 26 Oct 2010 21:05:13 +0000 http://blog.paultomlinson.net/?p=185#comment-1714 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! 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!

]]> By: Terry Mann http://blog.paultomlinson.net/2009/10/weight-reduction/comment-page-1/#comment-1713 Terry Mann Tue, 26 Oct 2010 20:18:15 +0000 http://blog.paultomlinson.net/?p=185#comment-1713 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 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

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