3 Years post HSCT for PPMS

Three years have flown by! It’s almost surreal that I was in Russia this time three years ago undergoing HSCT for PPMS.  My EDSS* was 6 then, today I’d say I’m a 4 on a good day.   EDSS doesn’t take into consideration my other issues, only your physical disabilities, my main disabilities are cognitive, etc…  I still have lots of damage and issues, but physically I’m stronger due to a lot of time in the gym, walking and biking.  I’m not complaining, I was a 6 and progressing at 1 point a year that would make me a 9 now… 10 is “Death due to MS”. Obviously I’m happy with the results, and have put in the time to see what I could get back.  You can read my 1 year and 2 year post to see my symptom improvements, nothing there has changed since the first 12 months.  Other than that I really don’t have much to report. I’m often asked what my walking looks like, so I put together a video reviewing the past 3 years, and included some clips of before, during, and after. (see below)

Click below to watch the video of the past three years of progress. The music is “Rise”, by Katy Perry.

*EDSS: http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/10-2-3-29-EDSS_Form.pdf

14 Comments (+add yours?)

  1. Roger Wilson
    Aug 31, 2016 @ 01:35:29

    What an amazing story! Congratulations on making the decision to travel to Russia and be away from friends and family for that time. What great inner strength it took to stick to your conviction that was the only option left to improve. There were no options available here, and you did the research to find a path to healing.
    All the best and love from Amarillo.
    Roger & Diane

    Reply

  2. Tania
    Aug 31, 2016 @ 07:36:04

    I’m really impressed. Carry on!

    Reply

  3. Janet Swaim
    Aug 31, 2016 @ 09:13:00

    Thank you for posting it gives other MSers hope!

    Reply

  4. Lee Grenci
    Aug 31, 2016 @ 12:47:06

    Hi Vicki,

    My name is Lee Grenci and I am a friend of Brooke’s. I am 68…soon to be 69…and I’ve have ridden in the last three Bike MS rides here in central Pennsylvania (150 miles in two days). In the three years, I have raised over $24000 to benefit research and to help folks in Pennsylvania battling MS to better cope in their daily lives.

    I was wondering if you would allow me to share the link to this page with my donors. I want them to see firsthand the advances we’re making.

    Here is my personal page on the NMSS Web site:

    http://main.nationalmssociety.org/site/TR?px=13380842&fr_id=27770&pg=personal

    Thanks for considering, Vicki. Your courage is inspiring. I am in awe of you and Brooke.

    Best, and congratulations,

    Lee

    Reply

  5. Lee Grenci
    Aug 31, 2016 @ 13:39:32

    God bless you, Vicki. And thanks!

    Reply

  6. Nina
    Aug 31, 2016 @ 20:59:59

    CONGRATULATIONS, on your amazing recovery! All the best for the future, thanks for sharing your story, very inspirational!!!!

    Reply

  7. luis
    Sep 01, 2016 @ 16:44:50

    My neuro says there is no cure for the progressive from of the disease
    You are the living proof that is wrong
    Keep going
    Great inspiration

    Reply

  8. Sue
    Sep 02, 2016 @ 17:13:50

    I remember 3 years ago and how scary and crazy this all sounded with only a 50% chance of working and here you are!! A pioneer and beacon of hope for others with MS. I’m so very happy for you! May you have many many more years of joy and health.

    Sue

    Reply

  9. kickinms
    Sep 03, 2016 @ 09:28:22

    Thank you, Sue!

    Reply

  10. frank pagnelli
    Dec 13, 2016 @ 18:47:08

    Hi I got diagnoased last December with primary progressive and I was told here in Montreal that there was nothing m,uch they can do and HSCT would not help me. Please help! I recently lost dixtrerity in my hands and i dont know how fast this will go.

    Reply

  11. doria reese
    May 27, 2017 @ 11:44:20

    Vicki, how are you doing 4 years post treatment?

    Reply

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