NOTE: This blog is now available as a book with added comments and thoughts. It is a fundraiser for MSA research. Please consider purchasing either a kindle version from the Kindle store @$3.99, the Paperback version at Amazon @$19.99 and letting all your friends and family know. We can help find treatments and a possible cure for MSA and other alphabet diseases! It can be purchased here.
Also visit my original, "all-purpose" blog http://www.justsomeposts.blogspot.com/

Thursday, March 4, 2010

What next?

I know I have not posted anything new since the recap of all the existing posts from my original blog. This is turning out to be more difficult than I thought. If you read the previous posts you may have noted a theme - I was typically writing from emotion or passion from the moment. To try to post "informationally" is harder than I imagined when I thought of doing this separate blog. I am still working on how to get motivated to write without it becoming just a medical chart of my wife's disease.

A quick update on that - we continue to battle the daily battles; dressing, eating, using the facilities, etc. All seem to be more difficult as days go by. We have been playing with the medications to try to work on what my wife sees as her most annoying symptom - the tremors. It amazes me how such a small change can in dosage can affect her so much. She is now taking 1 1/2 tablets of 25/100 Sinemet (carbidopa/levadopa) every three hours. We have tried going to two tablets every three hours. That one half of a tablet - 33% more totally sedates her. My daughter (that helps care for her during the day when I am at work) and I both have been amazed at how "drugged" that small increase makes her. We also tried 1 tablet every two hours, but that seems not to work as well. So we stay at 1 1/2.

I will continue to work on trying to formulate a format for this so I can do posts regularly. Like I said, I don't want it to turn into a medical chart; but I also realize I can't wait for a passionate moment to do a post like I did in the past. Any ideas or suggestions are welcomed.

If you know anyone with this disease, or you yourself have been diagnosed with MSA - my wife and I would love to hear from you. Drop me a response and we will get back to you. From what I read there are about 7 people per million that have this evil disease. That means there are not a whole lot of people, but there are enough that communication and fellowship is possible.

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