A Reminder to Mark Your Calendars … and Other Comments

Thank you

Thanks to everyone who responded to my request for help. I appreciate your thoughts and will attempt to incorporate your ideas into future articles. Sunday's article will be on Financial Planning, a requested topic.

Two researchers will be guests in upcoming chat rooms

Join us for the May 1 and May 15 chats because we have two special guests. Or, if you cannot join us, make certain you read the transcripts after they are posted on the KDA website.

May 1, 10:30 AM EDT, we have Lenore Beitel, Ph.D. Lady Davis Institute for Medical Research, SMBD-Jewish General Hospital, Montreal, Quebec, Canada. Lenore was awarded a research grant from the KDA this last winter to further study the role of the proteasome and its ability (or lack of ability) to degrade mutant androgen receptors (AR).  She hopes to determine directly if the mutant AR really does 'clog' up the proteasome.  Up to this point, most of the evidence for such an effect is circumstantial.

May 15, 10:30 AM EDT, we have Parsa Kazemi-Esfarjani, B.Sc., Ph.D. is a researcher for the Department of Pediatrics, Division of Genetics, Institute for Genomic Medicine at the School of Medicine, University of California, San Diego. Parsa is also a 2009 KDA grant recipient. His research will attempt to determine whether, and to what extent, the mutant androgen receptor (AR) in the muscle contributes to both muscle atrophy and motor neuron degeneration in Kennedy's Disease.  They have produced a mouse model with Kennedy's Disease which they can remove the mutant AR gene just in the muscle cells (this is due to a genetic manipulation), leaving the mutant AR intact in the rest of the cells.  This type of research will hopefully show which cells and tissues are the most important for the timing of the appearance of Kennedy's Disease symptoms (i.e., the onset) and/or the pace of their progression. With this knowledge, they will be able to develop therapies for Kennedy's Disease more effectively and target them to the appropriate tissues.


 
More reasons to like my Permobil

The more I use my new chair, the more I find ways to use the features to my benefit. One that I was not aware of has shown up over the last couple of weeks. I realized that if my legs feel a little weak, I lift the seat up a little higher to make it easier to stand. Conversely, if my legs are stronger, I just raise the lift seat a little. I know it does not sound like a big deal, but if it were you trying to stand up, you would know what I am talking about.

I mentioned earlier the ability of the chair's controller arm to slide to the side and back along the armrest. This is convenient, but I never realized how convenient until I used it with the seat height option. Sliding up to any height table is now much easier. I flip the controller to the side and roll slowly forward as I adjust my seat height to comfortable fit underneath the table. It is perfect and makes eating so much easier when I am out on the town. It is especially useful when our cat takes ownership of my office chair and I need to work out of my wheelchair. Why don't I just move the cat? Read his short story and you will understand why.


 
I am thankful I live in the South

Being a Yankee and spending some time in Canada, I cannot say enough about how much I love the North. That being said, this winter was extra tough on me. It seemed to tax my muscle strength more than normal. The legs acted as if they were on vacation the first couple of months this year. I was very concerned when taking showers this winter because I did not feel safe getting in and out of the shower stall. Fortunately, spring arrived just in time and my leg strength came back nicely. Since the warm-up, showers are not a concern once again. Whew!