Page 1 of 3 1 2 3 LastLast
Results 1 to 15 of 38

Thread: My little girl, an update.

  1. #1
    Registered User Rapid_Roy's Avatar
    Join Date
    May 2007
    Location
    Waukesha, WI
    Posts
    5,694

    My little girl, an update.

    As many of you know, my little girl contracted West Nile 10+ years ago. We have been to Florida to see a Dr they consulted with on the Terry Schiavo case, we saw a specialist in Toronto, and we have even been to China for Stem Cell Treatments. Now she is 15 years old, and she is still not walking, and we recently found something that, when she used it the first time almost made me cry. It's a stationary bike that you push the wheelchair right up to, strap her legs in and she pedals. There is a motor that "helps" and it graphs who is doing what, so you can actually see her muscles start kicking in on the graph. The local hospital has on here, so before trying to get one, we asked if we could use it. They scheduled 3 sessions, and in the first one she pedaled 1.5 miles! I haven't seen that for over 10 years. The next week though, she cried and did not do well at all.
    On the final try, she pedaled 2.25 miles, and they are submitting the paperwork to insurance. If insurance doesn't buy it, we feel it will be helpful enough that we are getting it whether Insurance buys it or not. I didn't really want a new GS Adventure anyway. 3
    Check out the video, she is getting big.


    It looks like my thread about nothing is gone as well, darn. 3
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  2. #2
    Registered User
    Join Date
    Sep 2003
    Location
    Virginia Beach
    Posts
    717
    keep posting - it's nice to see progress, bless all of your efforts.
    Virginia Beach
    current:14 R1200RT 75 R60/6
    past: 11 R1200RT 10 R1200RT 03 R1200CLC

  3. #3
    Registered User tourunigo's Avatar
    Join Date
    Aug 2005
    Location
    Halifax and Larry's River, Nova Scotia, Canada
    Posts
    3,309
    The other day I was wondering how she was doing. Thank you for the video clip. A thread about Something Special I suppose. Looking forward to following her (and your family's) progress with this new technology. - Bob
    saltyfogriders@gmail.com
    Salty Fog Riders Motorcycle Tourism Promotions
    Larry's River, Nova Scotia, CANADA

  4. #4
    Survivor akbeemer's Avatar
    Join Date
    Jul 2007
    Location
    Land of the Big Sky
    Posts
    4,104
    Good to get an update and see progress being made.
    Kevin Huddy
    Tm Pterodactyl MT Outpost

  5. #5
    Registered User Rapid_Roy's Avatar
    Join Date
    May 2007
    Location
    Waukesha, WI
    Posts
    5,694
    Quote Originally Posted by Weasel View Post
    keep posting - it's nice to see progress, bless all of your efforts.
    Edit: to remove my reading blunder: Thank you very much.
    I stumbled a bit, mostly because some jerks at ADV insisted I was posting stuff about her for sympathy for myself, even after I stated that was never my intention.
    I finally realized that not everybody is a jerk, and jerks should not matter, so I will go right back to posting my updates.
    Last edited by Rapid_Roy; 05-08-2013 at 03:19 AM.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  6. #6
    Registered User Rapid_Roy's Avatar
    Join Date
    May 2007
    Location
    Waukesha, WI
    Posts
    5,694
    She seems to be plateauing, so her therapist for her walking said perhaps we should take a break. We both sort of feel that this is it, and if it doesn't build up her leg strength, she may never really walk again. If you look at the video, you can see she has electrodes attached to her legs. If she doesn't pedal, the muscles are stimulated by the e-stim to activate. They are not painful, as you can see she seems content in the video. The cool part was seeing the graph and her muscles picking up more of the load right at the end. Her arms are seeming to become a bit more lazy, so we have to work on them more. It's going to be an interesting summer, and unfortunately, I won't be making the National Rally either this year. We have work to do.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  7. #7
    sMiling Voni's Avatar
    Join Date
    Mar 2003
    Location
    53 sMiles south of Alpine, TX USA
    Posts
    4,708
    Great update! Amazing new science.

    I for one really appreciate your sharing.

    Voni
    http://www.bigbend.net/users/glaves/
    Live fully. Laugh deeply. Love widely.
    BMW MOA Ambassador / FOM / Roving Forum Moderator/
    Selected Friends of Wile E Coyote/ A Million BMW sMiles

  8. #8
    Just me rad's Avatar
    Join Date
    Apr 2003
    Location
    Santa Cruz
    Posts
    830
    wow! She did great, you must be thrilled. Keep it up, dad.

  9. #9
    Registered User PeoriaMac's Avatar
    Join Date
    Aug 2003
    Location
    Washington, Illinois
    Posts
    780
    Roy, I am very happy for you and your family! All the best, Mac
    Mac
    1986 R80RT, 2005 R1200GS
    Livin' Large On The Lake

  10. #10
    You stupid, fix it! r11rs94's Avatar
    Join Date
    Jan 2006
    Location
    Tiverton, RI
    Posts
    5,149
    As always, you and your family are in my prayers. Hope all goes well getting the insurance.
    The thing about traveling is, you never want it to end and you can't wait to get home.
    I answer to Roy, Chief, or Sarg.
    04 R-1150-RT current bike. 94 R-1100-RS74,383, Sold, 78 R-80/7, K.I.A by a D.U.I
    www.OceanStateBMWriders.com

  11. #11
    Cage Rattler wezul's Avatar
    Join Date
    Nov 2006
    Location
    Glen Ellyn, IL
    Posts
    3,613
    Quote Originally Posted by Rapid_Roy View Post
    Thanks Bruce, you are a good friend.

    I stumbled a bit, mostly because some jerks at ADV insisted I was posting stuff about her for sympathy for myself, even after I stated that was never my intention.
    I finally realized that not everybody is a jerk, and jerks should not matter, so I will go right back to posting my updates.
    Boy, are you confused.

    get yer wezuls straight boi
    GOD bless

  12. #12
    Registered User lbarbee's Avatar
    Join Date
    Jul 2011
    Location
    Garner, NC
    Posts
    311
    Roy,
    We have never met, but I enjoyed the update. I have found that blogging about the trials in my life cathartic. You write it and we will read it. No sympathy from me, only cheers, encouragement and compassion my friend.
    I'm not sure about miracles, but human determination and a positive attitude can make amazing things happen.
    Keep up the good work dad!
    Lynn
    Lynn
    2008 BMW R1200RT (most fun you can legally have)
    2002 BMW R1150RT
    2008 Kawasaki Versys

  13. #13
    IBA #44567 Ken F's Avatar
    Join Date
    Sep 2009
    Location
    SW, MO
    Posts
    1,220
    Roy, I had no idea that West Nile could do that, until I read your post and researched it.

    So, your post did do some good- in so much as sharing important information.

    I too have been wondering of late how she was doing, and I'm glad to see the progress.

    Bless your family Roy, and you for being a good Dad!

    Ken
    IBA #44567 Pres. Springfield BMW Roadriders
    "Two things are infinite: the universe and human stupidity; and I'm not sure about the the universe."
    -Albert Eienstein

  14. #14
    Registered User Rapid_Roy's Avatar
    Join Date
    May 2007
    Location
    Waukesha, WI
    Posts
    5,694
    Quote Originally Posted by wezul View Post
    Boy, are you confused.

    get yer wezuls straight boi
    GOD bless
    Oops, I missed that. Sorry Bruce, I'll straighten my weaels immediately.
    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

  15. #15
    Registered User Rapid_Roy's Avatar
    Join Date
    May 2007
    Location
    Waukesha, WI
    Posts
    5,694
    Quote Originally Posted by Voni View Post
    Great update! Amazing new science.

    I for one really appreciate your sharing.

    Voni
    Thank you.
    I am sorry, and I didn't want to interrupt you too much from the group you were talking to already in Sedalia, but I had to at least say Hi.

    19 BMWMOA Nationals under my belt, and I have no idea what I am doing.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •