Forum Replies Created

  • douglas-k-powell

    Member
    July 20, 2021 at 4:45 pm in reply to: AFOs: Are they worth it?

    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 broke after I fell last winter and Medicare wouldn’t pay of it – I had used my allotment. It cost me $3,100 to replace.  I have filed a appeal with Medicare.

    At that time I had two AFO’s – the one that broke was constructed with a weld and that is a weak point and where the AFO broke. My other one does not have any welds and therefore no weak points – I replaced my broken AFO with one that does not have a weld.

    I also use hiking poles to steady my gait – even with the AFO.

    When I had my first public unveiling of my AFO – I was very self conscious. Now I don’t care. I do get the occasional curious stare or question……but it doesn’t matter. It is what it is and I can’t help it – I’m doing the best I can.

    I begin the day without my AFO’s – try to exercise my feet and lower legs – I am wobbly but it is good to feel my feet on the floor. I have to be extra cautious because I am more prone to falling.

    I would not hesitate to get an AFO and hopefully your insurance covers it.

    Thanks..

    Doug Powell

     

  • 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 new ones.

    It was a wake up call for me -> I always thought supplements were safe.

    Good luck -> hope you are able to pinpoint the cause.

    Doug

  • douglas-k-powell

    Member
    January 23, 2020 at 3:41 pm in reply to: opinion at mass general

    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 and gives us all the time we need. He is compassionate, very knowledgeable and is on the cutting edge of clinical trials and technologies related to ALS and other neurological diseases.

    I see him on Tuesdays which is a designated ALS clinic day. Patients at the clinic have access to a wide range of hospital resources; physical therapists, nutritionists, respiratory therapists, occupational therapists, nurses, etc.

    He keeps me current of promising clinical trials and is open to alternative (but safe) therapies.

    I have a high regard for the Neurology Department of Mass. General.

  • douglas-k-powell

    Member
    January 15, 2020 at 10:30 am in reply to: Does 2020 hold a new future for ALS?

    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 neurologist at Massachusetts General Hospital in Boston, Ma. and I was told of some very encouraging news on the ALS clinical trial front.

    My neurologist <u>believes</u> that a cure for familial ALS is “coming soon”. He is directly involved in most of the ALS trials at Mass. General is on the cutting edge of clinical trials.  Although I do not have familial ALS and it will not benefit me directly, it will be a huge step forward and I am sure will benefit the cause for sporadic ALS treatment and cures.

    He also told me that the Phase 3 trial of TUDCA in combination with sodium phenylbutyrate is going very well with some statistically significant results. This combination has shown to greatly slow down the progression of ALS. IF all goes well, approval for this drug could be within a year.

    So 2020 is off to a promising start! It seems there are more trials and studies than ever before.

  • douglas-k-powell

    Member
    November 3, 2019 at 7:35 am in reply to: Diet and Supplements

    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

  • douglas-k-powell

    Member
    October 31, 2019 at 3:09 pm in reply to: Diet and Supplements

    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 trial in phase 3.

    TUDCA dosage: Work up to 1000 mg per day. Start at 250 mg per day for the first week and increase by 250 mg every week until reaching 1000 mg per day.

    Another supplement worth considering is Curcumin (Turmeric). This is also being investigated by Dr. Bedlack of the Duke ALS Clinic and the ALS Reversals website.  I’m not sure what the recommended dosage is, but I am taking 950 mg per day.

  • douglas-k-powell

    Member
    May 4, 2021 at 6:26 pm in reply to: Do you experience muscle twitching?

    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