Random Thoughts for January 14

Weather Update: After almost two weeks of below freezing temperatures, it was 47 degrees yesterday. It was so warm I went out on the back deck, took my shirt off, and caught some rays (just kidding). Today the high is predicted to be 54. Yes, 54 degrees … do you believe it? The result is that Fred and I are really enjoying our walks again and my body is enjoying the warmth from the sun. (You are not hearing any complaints about the weather from me)

KDA Tissue Donation Program: Over the last few days I spent some time updating our tissue donation guide. It had been four years since the document was reviewed and several changes and updates were needed. After the update is approved, I will publish it on the KDA web site.

The major change in the rewrite of the guide had to do with emphasizing the need for preplanning (preparation prior to the passing of the individual). For the process to work correctly and to minimize any potential delays, certain items need to be completed early in the planning process. The rewrite emphasizes the need to locate a pathologist or medical center near your home that can perform the procedure.

Having human tissue samples available for Kennedy's Disease research is important when researchers are ready to transition from fruit fly and mouse model testing to a clinical trial. Testing the proposed drug using tissue samples is an effective first step in that transition.

Wheelchair Replacement: Well, we are getting close to making a decision. I have been reviewing models, options, and pricing the last few weeks. I have a conference call scheduled for today to review the pros and cons of the chairs and perhaps make a decision. My 'rep' believes the Permobil C300 is a good alternative to the C500. It appears that the major difference between the two units is the base unit. For some reason, I am a little hesitant to downgrade to the 300, because I have not personally tried that model. On the other hand, Bob, another person living with Kennedy's Disease, currently uses the 300 and really likes it.