Sunday, June 14, 2009

June 13, 2009

Here's a new video of me walking earlier today (on top), and one from May (below). I'm not seeing much difference, but you tell me.

Otherwise, I still feel good and have the energy, most days, to get an hour or more exercise in. Standing is still difficult - not much change there so no videos just yet. I'll keep posting good or bad.



  1. How long were you told for seeing results?
    I understand everyone is different. I am researching on having a simular procedure done. Dr's say, I have M.D. but don't know what kind. Ins. won't cover the $8,000 blood test I was told to have done in order to find out. Doesn't make sense to me...but that's another story for another 6pak ;)
    Thanks in advance for your response. Any other info. will be appreciated.
    Take care and maintain

  2. Hello Sean,

    I was told it would take 3-6 months before I would see results - and that would depend on how hard I worked on PT and home exercising (I currently spend 1-1.5 hours per day on this).

    Yeah, insurance seems pretty worthless these days for anything, including that DNA test you refer to. I'll be happy to give you more info if you want to email me at

  3. Hi, Russ !
    I'm Pungucz Karoly from Transilvania, i see you now you walk without stick, very good!!!
    Our walking is very similar, i also walk almost like you, i'm very curious how you will walk after4 months. I hope the cure will continue in every month better and better!
    Good strenght for the everydays exercises!

  4. Hello, Karoly,
    Yes, I feel more confident in my walking now, so I did this video without my walking stick. I do believe the stem cell treatment, combined with daily exercise, has helped my muscles to rebuild at least a little bit.

  5. I was analyzing your videos and comparing how you walked. It looked positive to me. 1)It took you the same amount of time to walk between two lines but you walked without a crutch on latter. 2)Your popping of leg motion when lifting it to step is less pronounced in the latter. 3) your head is higher and your shirt is tucked in(hee hee) which means you have more confidence or you just remembered a belt. I hope all is as well as can be Russ, and keep going tough!

  6. Deor,

    Thanks for the post. Yeah, I dressed up for everyone in that last video! I decided I looked fat in all my other videos, but it was mostly due to the clothes! - that, and it was much cooler at the time. Now its summer and I can dress down a bit.

  7. Anne Harland Canadian FSHD NetworkAugust 10, 2009 at 12:28 PM

    Russ:Thank you for taking the time to post/blog your experiences...I am watching your progress with interest.I have FSHD and will be going to china in October...for travel not stem cell transfer.I am hopeful that you will continue to progress however if that is not the case you have already done A GREAT DEAL for yourself and many did not give made an tried. BRAVO to you and best of luck.

  8. Hi man, i've FSH too but im very suspicious about whatever i read and see on the internet. I hope that you are realy getting better since your last post, cause that's the first time i realize there's hope. However this videos you uploaded proves nothing to me and i'll tell the reason.
    First of all its unbelievable that there's no such a medical center in the US or UK. I walk almost the same way you walk in the video and from my experience i can tell you that the cane cant provide any help cause your/our arms have not enough power. I can walk with a cane and show that i hardly standing up in a video and in another video that im totally different, its a matter of mood, a matter of fatique.
    I dont say that your are not having a problem or you are not going better.Ofc i believe that you are going better since you visit China cause its the first time you had physical
    Anyway i will say so more, but believe me i wish you are going better every day cause of the stem cell treatmeant.
    Be well man. I hope you post again.

  9. Hey Russ,

    First of all, I think you're incredible to share your life with strangers by means of this blog.

    Secondly, I congratulate you on being positive, confident and persistent in dealing with FSHD. Hats off to you dude..........think you're remarkable.

    I suffer from FSHD too.......and walk a little worse then you......walk with a crutch and s.o.'s assistance.......but fortunately, I think i'm relatively positive about my life.........if we look close enough there's a lot to be positive about.

    I admire you with the physical exercise you takes great strength of mind and will to continue working with the muscles you have......however, we cannot deny that we do have muscles that work and if we don't work them we kind of lose them.

    I have a question for you Russ. Regarding the umbilical cord stem cell treatment you did (i've been contmeplating the same thing for 2 years but I haven't gone for it so far) did they have to get a particular type of umbilical cord from s.o. whose blood type matched yours or not? Just does that work......

    There's a Dr. Omar Gonzalez in Mexico who does the same treatment for a lot less money I believe...........

    I still have doubts about everything though.......

    Anyway, I'm 45 and you're a little older but doing a lot better........keep it up man!

    best wishes,