July 28, 2003
September 9, 2003
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Rigged Myself to Use Computer
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Discharged from Sister Kenny. However, my halo was not due to come until September 29th, and though Courage Center had earlier said they might accept me as the first resident with a halo, in the end they could not since they had not yet trained their staff to care for someone with a halo. (Actually, they are just beginning that training this summer over one year later!) My options were either a nursing home or for mom to become a full-time nurse and therapist. I did not want to become a burdeon and felt it would be too great a task for my family so actually suggested that I go to a nursing home instead, but Mom would hear nothing of it and aggressively learned my cares from the very helpful nurses at Sister Kenny.
After moving to Mom and Dad's farm just outside of Albany, MN, it did not take me long to figure out how to get back on the computer... About the only thing I could do that time. However, it required 15 minutes of setup including supports for both arms, since I didn't have the strength to hold them up myself against gravity. I moved one mouse with my right hand, and pressed the buttons on a second mouse with my left hand after a pencil was taped to my fingers. I also began experimenting with a copy of Dragon NaturallySpeaking voice recognition I had picked up in Russia the summer before. Uncannily forecited wasn't it?
Looking back, spending those few weeks at home before going to Courage Center was a good thing. It gave me a chance to reconnect and recharge outside of an institutional environment under the sometimes overwhelming, but greatly appreciated, support of family, friends, and neighbors. Itis through trying times such as this that the intimacy and support that develops within smaller communities shines brightly. Further, those 3 weeks were allowed to pass smoothly with the help, care, and support I received from the nursing, home health care, and therapy staff of the Albany Area Hospital & Medical Center.
October 2, 2003
Checked into Courage Center in Golden Valley MN for rehab. This is a long story I will have to come back to...
June 15, 2004
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My New Wheelchair Accessible Home
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After 8.5 months, probably four months longer than I needed to be there for lack of a place to go and a wheelchair to go there in, I finally moved out of Courage Center rehabilitation Institute and into my new wheelchair accessible home in Maple Grove, Minnesota. Moving into a house on my own was a challenge, but has worked out well in the long run. There are just so many unknowns that can leave one a bit fearful. At first, I attempted to continue with some occupational therapies and exercise through the State-fit program at Courage Center, however they are administratively so disorganized I finally gave up after 2.5 months of struggle and frustration. In September, I went through the formality of a new seating clinic with the more cooperative folks at Sister Kennyso I could get one of the standing wheelchairs I've been working on for so long. They were much more accommodating in meeting my outpatient occupational therapy needs and goals through October and November. I will be wrapping up with occupational therapy with two more sessions now in December, at least until after I've completed and recovered from all of the tendon transfer and forearm FES implant surgeries it looks like I will be going through during the first half of 2005.
December 2, 2004
Update: Both my wheelchair and van are finally actively in the ordering processes with the various agencies. I will be getting a Balder Finesse F-290 standup wheelchair and a 2005 white Pontiac Montana with a 12" lowered floor and either EMC or IDS hand controls including electronic gas and brake and horizontal steering.(I actually got a Levo Combi, since the owner of Balder decided to play dirty business and basically screwed me after six months of waiting! I have little respect for people who try to do business this way and do not live up to their commitments.)
January 19, 2005:
Functional Electrical Stimulation Forearm Implant: In mid-March I am scheduled to return to the FES Center in Cleveland, Ohio to undergo preoperative testing to support the research followed by the forearm implant surgery on my left arm and hand. During the same surgery the tendon of my brachioradialis muscle will be transferred to my wrist. My arm will be casted for 3 to 4 weeks after the surgery followed by six weeks of exercising the muscles that haven't been used since July 2, 2003. (On November 18, 2004 I flew to Cleveland, Ohio to be evaluated to participate in an experimental procedure to restore limited hand functionby electrically stimulating the paralyzed muscles in my forearm. I was accepted and will be the 3rd person in the world to receive the updated 12 channel system. Learn more and watch videos at: Preliminary Testing.)
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