Update on Don (Angelman Florida)

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crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
I had Pm'ed him a while back to see how he was doing. He wrote back today and said I should post this on the forum as well.



Don's reply:

Hi Crystal, it has been a long time and much has transpired. I lost Mom on August 18th, it was very difficult but wonderful at the same time... she literally died in my arms at home. She died very peacefully - literally she did not even take a last breath - her just stopped. As for me, I am doing very well now, she was my whole life and it has been a really difficult adjustment going from caregiver to trying to just care for myself.. I have a new Rheulmatologist - it turns out I have both Ankylosing Spondylitis and Rheumatoid Arthritis. He started me on Remicade in December and I am now WALKING with only one cane! I have not sat in my wheelchair for 27 days straight! What a powerful drug and what an amazing turn of events! My first RA doctor had me on Humira and it did start me standing and at least my Mom got to see me standing up before she passed. Please tell me how are doing and please feel free to post this so the others can get an update also - I just don't know where to post it.. I pray all is well with you.
God bless, Don
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Don

My definition of being alive: laughter and still having the ability to laugh at yourself!
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
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Country
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State
New England
City
Anytown
Thank you for this update. It is so nice to hear from our members and learn that they are doing well!
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Yes, thank you. Too many members just wander away into the night and we never know what has happened.

AL.
 
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