Tuesday, January 12, 2010

12 January, 2010

It has been just over 8 months since I returned from Hangzhou, China. I have been exercising 1-2 hours per day, five days/week since then. While my initial results were great, it seems they have leveled off and I am now losing ground. I am falling more frequently, and getting out of a chair, which was always difficult, seems to have become even more difficult. It appears my treatment only went so far for so long.

I will continue to exercise because it helps me to feel like I am doing something to deal with my muscular dystrophy. And I will continue to post here for the next 3-6 months, just in case there are changes to report.

Meanwhile, I remain supportive of stem cell treatment generally, and Beike Biotech, the company I went through for the treatment, specifically. Perhaps some day new techniques will be found to make this treatment work better for MD patients.

Thank you all for your support and kind words.

15 comments:

  1. Hi Russ,
    I am writing you from Spain. I was reading your posts full of hope for this treatment to work and improve your life.
    I hope your progress has not stopped yet and this is just part of the results. Keep on with your exercise and give good news as in earlier posts.
    Your story has given hope to a lot of people affected by FSHD.
    All the best
    Daniel

    ReplyDelete
  2. Hi Russ,
    I just saw your video. I applaud all your efforts and wish you all the best.
    Would you consider going back to China for another round of stem cell treatments?
    Cheers,
    Rick

    ReplyDelete
  3. Russ,

    From what I understand after talking to Chinese patients up in Shenyang where every month 50+ patients get treated is that it is similar to Ataxia and MS where some patients have results that last six months and some up to three years. It just depends on how lucky you are in terms of your reaction to the treatment. The patients that regress quickly like yourself usually go back for more treatments but they live in China so it is a different story for them.

    Lily

    Stem Cell Awareness Association - www.stemcellaware.com

    ReplyDelete
  4. How do I find out more? I have A nephew with m.s., he is 14 and has a live expectency of 20. WE NEED HELP.

    ReplyDelete
  5. Very incouraging.I have two sons with FSH dystrophy and just happened on this site. I've called them to view this too. I didn't know that there was anything that could be done for FSH. Thank you for documenting your treatment.

    ReplyDelete
  6. Dear Russ,

    As Daniel, I am aso writing from Spain. My 7 year old son has been diagnosed with fsh last august. He can walk pretty well but has trouble raising and keeping his arms raised. We notice a slow deterioration and were hoping your treatment would have worked.

    We admire your courage and realy hope stemcells or other treatments end up working for you, my son and all fsh suffering people.

    Regards

    Josep

    ReplyDelete
  7. Hi, Russ--

    So sorry to hear that things aren't going as well. I can only imagine how disappointing that must be after so much hard work. Like some of the other commentors, I hope that this is only a phase and that things will get better again. Take care, hang in there.

    ReplyDelete
  8. Hi Russ,

    I'm 33 and I got FSH, I'm more advanced than you, I'm in a power wheelchair, can't walk etc.

    I've been following your blog in the last few months, you did get my hopes up for a while there. I even spoke to Beike.

    Anyway, it is great to hear that your treatment actually had an impact, albeit not as long as we'd hope.

    A treatment to stop the degeneration in our lifetime is probable, I'd say.

    I'm back to not counting on it thought.

    Thanks for sharing your experience.

    ReplyDelete
  9. Dear Russ,
    my name is crystal and i am 27 years old. i was diagnosed with fsh when i was 17. the reason im contacting you is because your the first person the i found that is recieving any kind of treatment. unforunitly the Dr's. i see are useless and i haven't even gone to physical theoropy because they think it would not help. my question to you is in your experience does exercise help. you can contact me at supawoman6606@yahoo.com please email me as soon as u can thank you.

    ReplyDelete
  10. I have read your post.
    Stem cell treatment is good for many types of diseases such as diabetes mellitus, multiple sclerosis, Parkinson’s disease, Duchene muscular dystrophy, cancer, blood diseases and many others.
    Thanks.

    ReplyDelete
  11. Natural Herbs Clinic,s Natural Herbal Remedies For Inclusion Body Myositis is the best possible and efficient treatments for such diseases are now easily available for you.... http://www.naturalherbsclinic.com/Inclusion-Body-Myositis.php

    ReplyDelete
  12. Hello Everyone, I want to share my testimonies to the general public on how this great man called Dr Lusanda made me happy. I have been suffering from Parkinson's disease for 3 year and i had been receiving treatment from my doctor. A day came when i was searching for information about this deadly disease when i saw a testimony of a lady who was cured from HERPS SIPHILIS-2 by dr. Lusanda, she also gave an email address on how to contact this doctor and advise we should contact him for any sickness that he would be of help, so I wrote to Dr Lusanda telling him about my Parkinson's disease he told me not to worry that i was going to be cured!! hmm I never believed him, well after all the procedures and remedy given to me by this man. Few weeks later I started experiencing changes all over me as the Dr assured me that I have been cured, after some time I went to my doctor to confirm if I have be finally healed behold i was told i have fully recovered.if you are there surfing from this deadly Parkinson's disease or any other diseases i will advice you to contact him on his working email: drlusandaherbal(AT)gmail(DOT)com or website on www(dot)drlusandaherbal(dot)weebly(dot)com i assure you that he will help you just as he did for me.

    ReplyDelete

  13. My husband was misdiagnosed with PD in 2000. Very rapid deterioration and many queries eventually led to MSA (Multiple System Atrophy) diagnosis. A horrible, horrible condition robbing people of independence, dignity, movement, speech, continence, ability to swallow and breathe.we didn't know what to do we tried everything possible medically, we were waiting for his death then one day our daughter got back from work with the email of a herbal Dr saying her friend from work told her about a testimony on how Lusanda cured her mom from PD and it truely worked, we were desperate and sceptical but my daughter told me we got nothing to loose and i decided to give it a try. 4 weeks after he started taking the herb he regained his speech and today my husband is fully rocovered from this deadly disease called PD, this isn't a BS it is real you can also contact dr Lusanda on drlusandaherbal@drlusandaherbal.com or website on www.drlusandaherbal.com

    ReplyDelete
  14. My husband was misdiagnosed with PD in 2000. Very rapid deterioration and many queries eventually led to MSA (Multiple System Atrophy) diagnosis. A horrible, horrible condition robbing people of independence, dignity, movement, speech, continence, ability to swallow and breathe.we didn't know what to do we tried everything possible medically, we were waiting for his death then one day our daughter got back from work with the email of a herbal Dr saying her friend from work told her about a testimony on how Health Herbal Clinic cured her mom from PD and it truely worked, we were desperate and sceptical but my daughter told me we got nothing to loose and i decided to give it a try. 4 weeks after he started taking the herb he regained his speech and today my husband is fully rocovered from this deadly disease called PD, this isn't a BS it is real you can also contact Healtth herbal clinic on healthherbalclinic@gmail.com or website on www.healthherbalclinic.weebly.com

    ReplyDelete
  15. My husband was misdiagnosed with PD in 2000. Very rapid deterioration and many queries eventually led to MSA (Multiple System Atrophy) diagnosis. A horrible, horrible condition robbing people of independence, dignity, movement, speech, continence, ability to swallow and breathe.we didn't know what to do we tried everything possible medically, we were waiting for his death then one day our daughter got back from work with the email of a herbal Dr saying her friend from work told her about a testimony on how Health Herbal Clinic cured her mom from PD and it truely worked, we were desperate and sceptical but my daughter told me we got nothing to loose and i decided to give it a try. 4 weeks after he started taking the herb he regained his speech and today my husband is fully rocovered from this deadly disease called PD, this isn't a BS it's real you can also contact Health Herbal Clinic on healthherbalclinic@gmail.com or website on www.healthherbalclinic.weebly.com

    ReplyDelete