Douglas K Powell

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]

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]

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

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]

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]

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

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]