Haven't posted for a while. We've been back for over two months now. There's not much change, for better or worse. Aside for the sprained ankle, we've noticed that Richard has a few minor setbacks in choking, manual dexterity and energy level. Perhaps Richard will ask his doctor to increase the dosage of Prozac to control the choking. The power web OT finger exerciser is on order and will be arriving soon. In terms of energy, Richard is resuming his Creatine powder drinks that he had let lapsed after we came back from China.
On a positive note, Richard is doing better at our weekly Pilates class. He's not huffing and puffing. Also his walks on the treadmill are steadier, faster and longer. He continues to go to the Y and uses his recumbent bike to maintain strength in his limbs. Lately, he's taken to wearing an eye patch over one eye while riding in the car to lessen his double vision. I can't help but laugh every time I glance at my rear view mirror and see this pirate in my car.
It is hard to keep up with the daily exercise regimen at home. I think that's why staying at Nanshan produced better results. At the hospital, Richard is removed from the conveniences and luxuries of home so that his main focus is his daily PT and OT. Once back home, there are the cable TV, the internet, books, magazines and newspapers, not to mention a soft, comfortable easy chair to tempt him into taking it easy.
Our friend and fellow Nanshan Ataxian, Nick, recently sent us an interesting link about a man who gave a presentation at this year's NAF (National Ataxia Foundation) conference about his unique system of training someone with Ataxia to walk unassisted:
http://www.walkingwithataxia.com/
Richard is in the process of checking it out. It would be great if it works. Thanks, Nick!
There are two annual events that we plan on attending. They are:
ACARM (All California Ataxia Research Meeting) held at Irvine, CA on October 14, 2007
http://home.comcast.net/~fernandesml/ACARM6.pdf
and the NAF Annual Membership Meeting held at Las Vegas, NV on March 28 - 30, 2008
http://www.ataxia.org/pdf/2008AMMDestinationInformation.pdf
Our stem cell class at Stanford starts next Monday. I have yet to do the first assignment which is to read the first chapter of the lecturer's, Christopher Thomas Scott, book. Richard and I are looking forward to learning more about the subject. It is a good thing that there's so much progress made and yet for the afflicted, it doesn't seem to happen fast enough.
Thursday, June 21, 2007
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