I'm so jazzed! I have to share with you about my Nero visit today! He had me do the usual tests (walking the coreadoor, hand eye following the finger, balancing heal up and down my shin, he also had me bend down and pick his pen up (I felt like I was in Yoga class) which I was able to do them better than the last time he saw me last Jan 2012 ) He asked me "What have you been doing with your diet and are your exercising?"
I told him I'm going to Yoga 50+ concintrating on my balancing and focused movements in everything I do throught the day and I'm taking Pilates once a week also (quite a few times it's been one on one beause no one else showed up that day, which is fine as far as I'm concirned but the only problem which is also good maybe she works me more because it's a indivigual session and I don't have to pay for that) . I'm working on getting my legs stronger, my ankels stronger and my core stonger to help support me. I told him it was a full time job. As much as I'm concintrating on my movements and working my butt off I would think that I'd be a muscle man but I don't look like I have any. I told him that I'm trying to get my endurance up by walking on the treadmil and exercing on the wii fit plus. That I'm always looking and reading to find out more ways to get better.
He said "Clearly to me you've actually gotten better as far as my notes reflect." He said you need to keep up eating the way your eating now and exercising like you have been. I think we won't have you take another MRI until 2014 now since your last MRI's haven't shown degeration. I asked him if he thought I stoped it. He said "We don't really know. You may have. Time will tell us more. " I told him I've been praying that it would stop and asking God to help give me the disapline to exercise because I'm not really fond of having to do it, but I'll do almost anything because I want to get more normal, or close as I can. I said "Do you think I can?" He smiled and said "I think that what your doing with your foods is helping nurish your cells and exercising your body and those cells that your making up for the area's in your brain that are not working, soanother words the good cells are getting much stronger to compansate. By them taking over who knows what can happen long term. Let's hope for the best. That's one of the reason's we want another MRI in 2014 to see. " I told him about my not having any Gluten and how it's making a diffrence along with no having any flour or refined sugars etc, I said since I've done that my MRI's seemed to stop. He said"I think your doing the right thing not having any, clearly it's working. If it's not any problem for you to do it I would suggest that you stay off even though the testing didn't show Celiac. Alot of people that have ataxia being off any form of Gluten can help them even in small amounts. People don't always notice how it's helping them" (I wanted to tell everyone here that because I think it's really important to know even if it's challenging to others around us. By not having any we are actually doing something great for our brain, even if we don't feel any diffrent).
I am really jazzed about this new's. That means all my hard work is paying off. It gives me a shot in the arm to continue. Now I don't know which things I'm doing now are making the diffrence for me so it's kinda a bummer that I have to keep doing all of them. Because they might be working together and who know's what is or isn't working!
So thank you for your support in helping me and your continued support here. I appreciate that! :0)
That is beyond wonderful Jeannie. I am so happy for û! I love your posts as they always give me ideas. Question about the Yoga and Pilates, more yoga though. I had always heard that the goal of yoga was to clear your mind, thus allowing not good stuff in. I want to try the Pilates but not sure about the yoga.
The Yoga that I am doing is for 50+.Its mainly streching poses, it helps get my joints and legs more limber to move then I can work on getting stronger. When they chant or whatever they do I pray and dround that part out. My Montra is the word GOD.
Pilaties is symilar to Yoga but more intense. It builds strength! Did you google Pilaties or check out on YouTube yet?
Liz, I found a great youtube video to show you what I am doing. I started only being able to do 10 of the 100's now I can do over 100. I can also raise my legs now. I used to shake like crazy now I'm more fluid all over.
Try this sometime. It is a workout! :0) You could do this! http://www.youtube.com/watch?v=lCg_gh_fppI&feature=related
Here is a video for people doing Pilates with disabilities even in a wheelchair. http://www.youtube.com/watch?v=KlSuPuLozCk
There are lot's of video's with modifications to use towels, bands, even men's ties you can use to help strech out your legs/handstrings. I have to use a band but have been gradually using more resistance bands after 4 1/2 months working on this. It took me 4 months to start to feel as if I was doing Pilates ok. But I still need instructions because I forget how to do these.
When I started doing the 100's I hated them because I could only do 1-2 4 months later I can do the 100's and beyond! Who knew, not me! :0) But taking babysteps and not rushing to do more I'm concintrating on my form mostly and I'm slowly able to do more. I love it, it wakes up my body and I'm moving better!
I sometimes have to do it a few times throught my day when I get stiff to limber my body up again. I don't get why I keep getting tight after I strech. But I guess it's getting less and less each time so maybe someday......................? I have something to shoot for anyway! :0)
I am so pleased for you
Did you tell him about the inspiration that you give to others
Because your wisdom and receipes give us something new to try
My excercise classes are going well
i went to the Rehabilitation center yesterday and he has referred me for speech therapy and phsiotherapy
so looking forward to the changelles they bring, but tired after my exercise class, thats why i've been quite
I am doing the normal exercises recommended by the therapist and postponing the use of a wheelchair and do not know for how long? I feel slightly better. You are a source of inspiration to me and honestly I do not like exercising but do it out of compulsion to enjoy some mobility! Your goal oriented program has motivated me and thanks for that. Good luck and good health.
great story and great news.
thanks for sharing.
Thanks you guys!!! ;0) I guess with really hard work we all can get even a little better. Trust me if I could do this everyone can do this too! Who knew that the other parts of my brain would finally start taking over! I want more!!! ;0) I guess I’ve been and kinda still am impatient because I want it all now! ;0) But I’m forcing myself to take baby steps, and a great side effect is I’m actually having more energy. I guess the babysteps do start adding up to allot. ;0). ;0). ;0)
Just lost my post!!!
Great encouragement Jeannie well done.
I am trying Tai Chi - had three lessons .. so far so good.
Great news Jeannie and thanks from too for the motivation and encouragement.
I have had phases of different exercising, focussing on core development and at the moment I am doing wii fit exercises virtually every morning.
I live in retirement apartments and the residents have engaged a tai chi teacher on Wednesday evenings. Not a good time for exercising but... I have rallied myself and been to first three classes. So far so good.
lol here it is !!!!
I have had some improvement in fine motor skills and been able to work a Nintendo DS again. I did get the XL version (larger screens) as I felt a bigger screen would help and have found a larger stylus which I have put foam around middle to make it chunkier to grip, but still I'm back on my art exercises again which I had previously had to stop.
At the minute I seem to require something to copy so using the Art Academy game but I'm hoping by the time I have finished it I will once again be able to look at something and just know how to draw it and how to get my hand to go where I want it to so what I draw resembles what I'm looking at!
For now Tracing is my exercise or watching the game draw a line then me copying it, hopefully somewhere along the way my brain will figure out how to re route itself so I can do it myself.
I had found with writing, last year when I was writing xmas cards I had to type out people's names first and copy it. so when I was researching I tried hand writing some stuff where was only a few words or a paragraph copying directly from the screen. I do think it helped I was able to write a cheque recently without needing the date, name of person to write it to and amount in words already typed out to copy from.
I noticed with communication aid too I was using grid mode more and the symbols on the buttons as a memory aid for the word I was looking for. We can de-skill ourselves very quickly if we aren't careful and give up on doing things ourselves too early cos maybe its quicker or easier for someone else to do it for us.
The average non-disabled person only uses a tiny percentage of their brain for what most average people can do daily, so there's quite a bit spare up there with the potential to be re-trained if you think about it!
I'm so happy for you, Jeannie.
The mysterious of brain is so amazing.
Keep your good work !!
"He smiled and said "I think that what your doing with your foods is helping nurish your cells and exercising your body and those cells that your making up for the area's in your brain that are not working, so another words the good cells are getting much stronger to compansate. By them taking over who knows what can happen long term. Let's hope for the best. That's one of the reason's we want another MRI in 2014 to see. "
Wonderful news. Bravo!
I feel it really is the answer. Gluten free, sugar free and more and more exercise.
I am so much better.
The other day, my fish tacos came with flour tortillas. Within 15 minutes I was stumbling every few steps.
I recommend every one try this for at least 3 months. You have nothing to lose but weight!
Well done this is fantastic. I hope your routine continues to bring you improvements.
CONGRATS, Jeannie! I am so happy for you.
Yippie!! Good work Jeannie! How wonderful to get a doctors positive feedback on everything you are doing to turn your health around.
That is wonderful news Jeannie! Although I still don't have a official diagnosis my FNP who works with my neurologist was surprised by the improvement that I had shown just over the last few months of being off of gluten. When I first saw her I couldn't walk a straight line at all and my reflexes were off (just some of the symtoms I was having). The last time I was in I could walk in a straight line with no problem and my reflexes were improving. I see a chiropractor on a regular basis (after I found out I had fibromyalgia a few years ago) and he has helped me more through regular adjustments and encouraging me to be on the right diet than any doctor has. He believes that everyone should eat a clean diet and we would see fewer illness that are caused by lifestyle. I appreciate the fact that he is on the Paleo diet because of what he learned through school not because he was sick and it has offered me a whole lot of support. I'm still working on incorporating regular excercise. Trying to keep up with 3 kids is a workout in it's self. I'm hoping once school begins again I can get on a regular schedule during baby's nap. I've done a little Pilates and that does seem to work well for me. I know it can be hard to think that you will have to eat this way for good but the longer I am away from that food the more revolting they are to me. Now when I look at all the things I used to love I see pain and falling and they are no longer appealing. Keep up the good work!
That's great to hear, Jeannie. Who is the neurologist you are with now?
I have not heard back from Dr. Sha. Don't know if she is still in UCSF.