Thursday, October 8, 2015

Six Years Later...

It's been six years since my initial stem cell treatment, and two and a-half years since my last post on the subject, but folks keep asking for updates, so here I am. 

Here is a summary of everything: I spent five weeks in a Chinese hospital in 2009 for stem cell treatment using umbilical cord stem cells. Before treatment I could exercise 20 minutes a day maybe three times a week. After treatment I could exercise two hours a day, six days a week. However, after eight months my strength and stamina began to drain away and by early 2010, I knew it was gone completely because I was back to 20 minutes, three times a week.

In late-2011, I began using a power wheelchair for mobility. In 2013, after nearly 25 years, I retired from my paralegal career because my hands had become too weak to use all day. Now I am able to walk, but not far; I can stand, but only with the help of my lifting wheelchair; and my balance is a truly scary thing. But I get to sleep in, do projects I choose and spend lots of time with my awesomely wonderful girlfriend, so it's all good!

I hope you find your own happiness, too!

Russ ~


  1. Thank you for posting an update Russ!

    I have followed your experiences and so very much appreciate an update.

    I've been recently diagnosed with FSH but began to suspect something was wrong about six years ago when my right leg occasionally felt like a wet noodle when I walked. It has gotten progressively worse, unfortunately.

    During the last year, on average, I have fallen about once a month, however in the last four weeks, I have fallen four times--twice stepping down and twice walking. As I am sure you know, you are down on the ground before you even realize that you've fallen.

    Going up stairs is now very laboring and going down them is pretty scary too and I've been pretty much confined to living on the first floor of my home.

    I wanted to experiment myself with different approaches as conclusive research is fairly thin on the matter. I did a lot of research concerning weight training and body building coupled with supplementation with things like creatine and whey protein. I tried a pretty aggressive weight lifting program, even though I was told it was risky. For I time I thought I was making progress, but then I felt I went (and stayed) backwards. My thought was to try to throw a lot of "positive" things that encouraged muscle growth to offset the negative effects of DUX4 production.

    What remains a mystery is how I was able to build muscle when I was younger even though I have always had the genetic defect. Clearly some other things are going on that weren't in the past. Despite the set-backs, I feel it was worth the effort--one never knows until one tries.

    I see from your post that you were able to exercise longer and harder, but I am curious when you were taking your stem cells and your CK levels returned to normal, did you actually attempt to build muscle with weight training? If so, did you see any positive or measurable results? Or did you primarily do aerobic exercises?

    I am considering participating in a clinical trial that may be happening shortly at Kennedy Krieger (if I qualify) and have also researched the potential positive effects of a flavonol called fisetin that is abundant in strawberries.

    It appears that fisetin may mitigate DUX4 production in muscle tissue (at least in a petri dish). I am considering supplementing my diet with it to see if if has any positive effects.

    I applaud your valiant efforts and I understand what it is to be discouraged when things don't work out as hoped. I feel that every experience, successful or not, is good to share with others who, like us, are considering options, no matter how risky or unproven.

    I hope and pray that you and I (as well as many others so afflicted) will soon see an effective treatment created by those very special individuals who are dedicated to beating FSH.

    You will be in my thoughts and prayers, Russ!

    1. Bob,

      Most all exercises for me were aerobic and did not involve weight training. My PT measured my arms and legs weekly, but we only saw muscle and muscle mass increases in the legs so that was our focus; the arms did not change at all.

  2. Russ,
    I thank you for your updated post, and know it really means a lot to us with friends and family members affected with FSHD, to follow your journey. I have been following you on You Tube and your blog since you started posting. My thoughts and prayers are always with you and hope that you continue to stay connected with all of your followers, Blessing

    It sounds like you have a great support system and believe that is important.

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