Posts tagged Ataxia
Living With Ataxia - Online Support Group
New member says:
“Thank you for the warm welcome. Really hoping to be a big help to others on here.”
Terrific blog post by and song lyrics by Annette about a superstar moderator, JC.
I have found Ability within my Disability.
By: J.C. Coyler
SUMMARY:
Are you coping with a disability?
A friend of mine, JC, has a very serious illness called Ataxia. The other day he sent me an email with today’s quote and said he had finally found “ability within his disability”. Everyone has a choice when facing challenging times and situations, JC made the choice to take the lemons he was dealt and make lemonade. He helps many people through his online support groups
Today’s song is for JC who is truly one of my heros. He found the strength to carry on and cast his fears aside to help others.
Today’s picture is one of my favorite pictures of JC and I. If you are facing a disabiity, look deep inside because there is a hero right inside you. JC is proof of it.
Living With Ataxia - Online Support Group
New member says:
“Thanks - I was hoping to find someone who is in the same situation or has experienced it. It’s such a cruel horrible disease. No one deserves. :-/.”
Living With Ataxia - Online Support Group
New member says:
“Thank you for the warm welcome . I have felt quite isolated with my ataxia until now…”
Diagnosis: Ataxia - Adapting your lifestyle, when there is no other choice
“Diagnosis: Ataxia”
My name is John Colyer, since my early teens I’ve had the nickname, “J.C.”. I’m about to turn 50, and would have never exspected to be in the situation I am in, for the last 10 yrs I’ve had a slow but steady downfall caused by a rare disease known as “ Cerebellar Ataxia”, it causes cerebellar atrophy, which means the part of my brain called , the cerebellum, is shrinking.
I’ve had 3 MRI’s, multiple genetic and non genetic blood test and have seen numerous Dr’s and Specialist. I didn’t recognize a problem till friends and co workers brought it to my attention. Ataxia causes your balance ,coordination and speech to deteriorate. It makes you look and sound drunk,which is ok to people when your young, not so much in your 40’s.
I had a fall in Jan 2010 and broke my left knee cap and had 2 surgeries to repair it. While recovering in bed, I found www.bensfriends.org, a support network for people with rare diseases, I joined there Ataxia support sites, American Ataxia Networking and Living with Ataxia, I had never had contact with another person with Ataxia before then, it was the first time I felt it was real and not in my imagination. It became a life line for me, a safe place to vent with others who understood my struggles. I use a Quad cane for stability when I walk, and stress and fatgue magnify my symptoms. I moderate a few sites now with Ben’s Friends and find helping others helps me, I struggle with depression and take medication to help me. An internet connection is the same for a disabled person as an able person, if I didn’t tell you I was disabled online you wouldn’t realize, I’ve learned I must just Keep Trying and Stay Strong!
Living With Ataxia - Online Support Group
New member says:
“Thank you. I did find a few answers while I was off soul searchin…, along with more questions. Ha! such is life.
I’m just trying to figure out this whole acceptance and adjustment thing… That’s a work-in-progress. But I can say that this site has helped. I’ve connected with some people and even made a real friend. The support does help a great deal. “
Living With Ataxia - Online Support Group
New member says:
“Thanks seems like a fantastic group of people. alas no evilness in me just a name I’ve had online for eons :-) wish I’d found this site sooner!”
Living With Ataxia - Online Support Group
New member says:
” Thanks for the immediate welcome! I saw your profile in the chat box when I was finishing my profile and uploading my photo. Sorry I didn’t get a chance to thank you before you signed off. Your welcome meant a lot =D “
Living With Ataxia - Online Support Group
New member says:
“Hi , thanks for replying, It feels good to know I’m not on my own. “
Living With Ataxia - Online Support Group
New member says:
“Thank you so much for such a warm welcome. I look forward to sharing and learning from others.”
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