Sunday, April 24, 2011

New Post - 2 Years Post-Treatment

I've had several people email me lately asking how I'm doing now that 2 years have passed since my treatment. The positive results I initially received only lasted about 8 months after I returned from China then they simply disappeared. For the past year or so I have felt a decline in health and ability. I now use a scooter for walks longer than a block or so, and recently bought a conversion van to get around. Standing from a chair is getting very difficult. I had to stop PT given my lousy insurance and the cost. Exercise is now difficult but I do what I can.

Would I go again? No. It seems to me that the technology for stem cell treatment in FSHD is just not there yet. Maybe it will be in my lifetime, but not yet.

9 comments:

  1. I'm sorry to hear that Russ. It seems to have initial benefits, and we saw dramatic improvement in Sierra in the first 10 months or so. Unfortunately, she passed away in October.

    I hope they continue to perfect the technology so that it will be helpful long term.

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  2. Thanks for the follow up, never give up the fight. I'm sure they are working day and night to come up with some sort of treatment that is beneficial! Never give up, stay positive!

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  3. Hope you are doing better now. It is really hard to lead an easy life after treatment. My best wishes for you to get well soon.

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  4. Russ, I just watched your video and was so hopeful for you. I too have FSH MD and understand your desire to seek anything that might help. I'm getting ready to start a unique treatment/regime designed by Edgar Cayce. Who knows the outcome but like you I want to try anything I can. If I experience positive results, I will find a way to contact you.
    Linda

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  5. Linda,

    Thank you and good luck!

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