Jeannie this is super to hear! I’m delighted for you! Long may your progress continue and you go on being an inspiration to us all!
Hugs Rx
That is AWESOME Jeannie!!! You should be very very very proud of yourself and all of your hard work!!! Yay!!!!!
That’s very encouraging! It may get hard at times but it is worth the fight. Thanks for the ideas on ways to improve and keep up the good work!
Wonderful Jeannie, all your hard work is paying off!!! You give myself and others hope! Keep up the great work!!!
Glad you have had some good news.Gives me hope with my gluten free diet.Haven't noticed any effescts yet on my Ataxia but it is early days as i have only been on it for about 2months so far.
Not coeliac to my knowlege either.No probs with digestion but who knows the cause of the Ataxia?
Thanks for all the encouragement, I think we all need it to keep going I know I depend on it! ;0)
You know I just find that I have to discipline myself all the time to stay on track to help me feel better with ataxia. I find I have to discipline myself to do what I believe is true instead of slowing to give in to how I feel! ;0) I have to amity putting reminders on my IPhone with creative alarm sounds help me focus on what I need to do and it gets me to deail with being in the moment!
My Dr is Dr John Engsrum @UCSF. Sha is still there in the Movement Center @ UCSF too. She’s apart of my health care team!!! ;0)
Dear Jeannie,
I have been coming to this site since I was diagnosed with CA 15 months ago but never chimed until now. Your post was so inspirational it brought tears to my eyes. I am so happy for you! I have just started exercising again today after taking a break for six weeks. My body rapidly declines if I do not exercise. It is frightening to me just how fast. To hear you tell your story and the hard work you do is just so inspiring. Fantastic!
Take Care and Thank You,
MJ
HEY JEANNIE, I FINALLY GOT UP THE COURAGE TO JOIN YOUR CONVERSATION.....YOU HAVE WORKED VERY HARD AND DESERVE THE NEWS YOU RECEIVED!!!! I ALSO EXERCISE DAILY IN ORDER TO MOVE ABOUT ON A DAILY BASIS. I GO TO A WEBSITE AND READ WHAT A DR. CLAUSE DID WITH HIS ATAXIA...WHICH HE DID SUCCEED!!!!! I DO LOVE TO HEAR AND READ THESE AMAZING STORIES WHICH HELP ME GET THROUGH ONE MORE DAY!! YOU GO GIRL!!! KEEP UP THE GOOD WORK AND LET US KNOW HOW IT IS GOING. YEE HAW!!!
I had surgery recently (unrelated to my ataxia) and have not been able to exercise for 2 weeks now. I see my surgeon at the end of September for a follow-up appointment. So it will be about 4 more weeks until I can exercise again. The point of this comment is I really notice a difference in my ataxia when I'm unable to exercise! I can walk for exercise (with my cane), so I've been trying to do that. But my muscle strength has declined, and keeping muscles strong has helped my ataxia. So I believe you Jeannie! Exercise really does help ataxia!!! Your yoga and pilates have really helped you maintain core strength etc. I'm so happy and proud of you Jeannie! Keep up the good work as it's paying off BIG-TIME!!!
I agree, I get over episodes much more quickly now that I'm exercising regularly.
That sounds terrific. I start a program in Sept 3 dats a week with pysical and water therapy and how to deal with the pain,
You are jazed.
I also stopped eating gluten and sugars and my ataxia has improved a lot. It has not gotten worse and I'm getting better and better. I don't know if I can completely reverse it but I have my life back. I was almost wheelchair bound when I was diagnosed by a very good doctor who said to stop eating grains and sugars. She was right, it really works. Gluten damages the cerebellum of the brain which is your balance center and sugar is also very damaging. You have everything to gain and nothing to lose by trying it for 6 months to see if eliminating those foods from your diet can help you too. I also avoid the so called "gluten free" grains because all grains have some gluten and I seem to be sensitive to even small amounts but you can test that and see what works for you. I use those items as a treat but I don't eat them every day.