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Douglas K Powell replied to the topic AFOs: Are they worth it? in the forum Mobility Aides, Assistive Technology and Medical Equipment 2 months ago
Hi –
I have 100% foot drop in both my feet and would not be nearly as mobile (relative term!) without my AFO’s. I have two carbon AFO’s – and yes they are expensive. But they are worth it vs the cheaper plastic ones. Medicare will pay for AFO’s but only once every 3 to 5 years (don’t remember the exact duration). Unfortunately one of my AFO’s…[Read more]
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Douglas K Powell replied to the topic Complications with Riluzole and high levels of Vit C and other supplements in the forum Living With ALS 3 months ago
Hi- I do know from personal experience that too many supplements can be a problem. I was taking about 15 supplements a day and started experiencing arrhythmias.
Turns out the supplements were disrupting my electrolyte balance. I eliminated those that were problematic, have reduced the number of supplements I take and am very cautious about adding…[Read more]
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Douglas K Powell replied to the topic Do you experience muscle twitching? in the forum Living With ALS 4 months, 2 weeks ago
I have found that since I have started taking AAKG (arginine-alpha-ketoglutarate) powder supplement my fasciculations have decreased.
My neurologist recommends no more than 20 grams per day as an excessive amount can be detrimental.
Best of luck…..
Doug Powell
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Douglas K Powell replied to the topic opinion at mass general in the forum Diagnosis Information and General Questions 1 year, 8 months ago
One of my neurologists is Dr. Barry who is part of the leadership team of the ALS Clinic of Mass. General.
He first diagnosed me with lower motor neuron disease. I have been seeing him for about a year now. I like Dr. Barry very much. My wife and I find him easy to speak with. He is a good listener and we like the fact that he never rushes us…[Read more]
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Douglas K Powell replied to the topic Does 2020 hold a new future for ALS? in the forum Living With ALS 1 year, 8 months ago
Thank you for the insightful information. The last time I visited the ALS Survivor’s website the number was less than 45 – it has grown since I last visited it. This is encouraging and I also like that Dr. Bedlack is still steadfastly conducting research on this group- he is a big advocate of ALS patients.
I just came back from seeing my ne…[Read more]
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Douglas K Powell replied to the topic Diet and Supplements in the forum Living With ALS 1 year, 10 months ago
Hi Dawn-
My neurologists did not provide me with a recommended brand so I purchased the brand Nutricost TUDCA do to prices- I buy 60 capsules or 250 mg each for about $30 on Amazon. This provides me with a months supply assuming 1000 mg per day.
If you find a better price – please let me know!
Thanksl…
D Powell
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Douglas K Powell replied to the topic Diet and Supplements in the forum Living With ALS 1 year, 10 months ago
Hi- I would like to add my two cents regarding supplements. While I take many supplements (I intend to eliminate many) I want to bring to your attention two supplements which seem to be getting a lot of attention.
TUDCA-has been recommended to me by 2 neurologist and the ALS Therapy Development Institute. TUDCA is currently part of a clinical…[Read more]
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Douglas K Powell became a registered member 1 year, 10 months ago
Hello Douglas, Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010. If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even…[Read more]
Hello Douglas, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]