What with both Multiple System Atrophy and Corticobasal Syndrome symptoms occurring simultaneously, I am learning to adjust to the the changes. I find a need for scooting around in my transport wheelchair more these days. I just take the footrests off of the chair and I can move around the house pretty well. The great thing about the smaller transfer chair is it does not have the large wheels so it is narrower and fits through hall ways and doorways entering the restroom and bedrooms. I can spend hours in this transport chair and it is quite comfortable.
I want you to know that I have closed my Facebook account because I don't want to support a company that is not forthcoming about sharing our personal information with business partners, let alone political campaigns. (I changed my mind about this and reversed the process of closing the account).
Nevertheless, since I won't be on social media, I will be writing more often on this blog to communicate with you that stay in touch with me.
I am having a difficult time understanding why I have the cognitive behavioral dysfunctions that accompany CBS/FTD. Corticobasal Syndrome is a part of the broader neurodegenerative disease known as Frontotemporal Degeneration. I take Namenda to slow the progression of dementia that is associated with CBS.
Karrie is so helpful and understanding. We are focusing on family and friends. We appreciate the support of our adult kids, their wonderful spouses and their beautiful children. It is a tight group!
The local Parkinson's Support group is a great place to share with patients and caregivers. Online, we stay in touch through CurePSP "go to meeting" groups.
And, of course, our Church is a great support and a caring family.
This is Multiple System Atrophy Awareness month and we encourage you to get involved. Thanks for stopping by! -- Patient-Online
5 comments:
Hi Dan,
It was so good to hear from you again and get an update. I am so far behind, I only knew about one grandchild. What a wonderful surprise to learn you will soon have four.
I am glad to hear you will be posting more often now. I think about you a lot and wonder how you are. Now I know.
Your Friend always,
Peggy
It's good to hear from you, cuz.
Hi Peggy, We are equally glad to hear from you. Thank you so much! Give Steve a shout out, will you? Hope to chat soon. Your friend, Dan
Hi Cousin, Thanks for following our blog. Love to you, Dan
Hi Dan, it's always heartwarming hearing from/ about you! HAPPY BIRTHDAY to you young man. Enjoy that wonderful family!
Love, hugs and prayers.
Terry and Michael
HI Dan-Gosh - I can't believe how long I have been "saving" this email to "respond later"....hoo boy! I had never heard fo having 2 of these horrid diseases at the same time....you are such an inspiration. My meeting is Saturday and I am going to share this with them. I have shared about your book too. You are a lucky man to have the support you do of such. loving family. I know I will never never forget what you did for my mom and me when she was sick.
You take care....sending prayers and good thoughts....
Mary (Meagher)
psI'm not getting any more postings from you so not sure what to do about that? Is it something I should be doing?
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