Hi everyone! I am so jazzed and want to shout out to everyone that my hard work is really paying off!
I had an apt with a movement specialist in UCSF Thursday and he said that I'm doing better with my movements than I was last year! He gave me all the standard test like touching my nose, walking down the hall etc. Even though I didn't do them perfectly he said they seem to be better not worse. He asked what I was doing and I told him about my foods, like not having any refined sugar or substitutes, no Gluten, no flours, no preservatives, no additive nothing in a box or a bag as much Organic as possible. I'm taking B12 1000mg under the tong, cq10 2 1000, D3 50000mg, 1/2 multi 2X's daily, 2T coconut oil, 2Tflax seed oil, lot's of veggies and fish. I've been cutting back on dairy to where it's almost non assistant. I eat Gluten free so I can absorb all my vit and minerals I'm eating. I'm really working on focused movements in Yoga 50+ and lot's of stretching daily. I get lot's of rest 9 hours per night and sporadic naps of only 30 mins. I told him it was hard diligent work to keep this up, but I think it's worth it! I try to be balanced in everything that I do anymore. Physical, mental, and spiritual.
I know I could push to get used to doing more in my mind but my body won't go along with that thought. But I do push myself just a bit further than I did in Yoga the week before. So even though I'm not cured of this ataxia and I still have bad days overall I have conformation that what I am doing is paying off. So it motivates me to keep going!
I don't thing foods will in themselves cure ataxia and I don't think focused movements will either but together they can make a difference, they are for me! I do really believe that they help our body deal with what we have to deal with.
Please don't give in to this ataxia no matter what type you have. I know we are all different to a point but we do share a few similarities. I know it's hard work but it's worth it! Really! :0)
Thank you for letting me share here! I hope this helps motivate someone to push just a little bit more each day. Either on eating better or more focused movements.
Thanks for sharing.. this sort of post really does motivate me.. so easy to let things slip when you feel so tired.. especially at this time of year when it gets dark so early and trying to keep the muscles warm.
well done Jeannie - epecially for taking control of your own health and finding out what works for you - that's the way to go in my opinion, the docs dont know everything about this/these conditions so lets all help ourselves too!
Well done to you Jeannie. I dont't go to bed early enough - I don't exercise enough - although I'm not too bad with my food - it could be better - at the moment to many sweet things (comfort factor).
I tried C10 last year - made no difference at all. I have been taking B12 for about 4/5 months - no difference to my Ataxia (Sensory) but, I feel there is difference to my outlook etc. (of course as you will know it is needed for brain (neuro) conditition upkeep, so I will see when I have finished them all.
That's wonderful. I have to say I was going to post about the GAPS diet I am on when I was a little further into it, but I have to say so far, no gluten (or any kind of starchy veg), no refined sugars, additives have been making some difference to me too, so I'm excited to read your progress. I will post further about my travels on this food plan after I've been on it for longer.
Thanks for the encouragement everybody to keep on keeping on! I think we need to encourage one another all the time too!
I think everything just comes down to getting in a routine/habit. I've gotten into a habit with my eating which is important for anyone, even if they don't have ataxia. But I think it is even more important having it.
I also find that I'm more motivated and push a little harder because I go to a Yoga class with others. I get instructions on what to do and how to do it the right way then I use the WII in between and just have to adapt to what I can do (it may not look like everyone else's but I get there). I still have a tendency to not be as straight as I think I am in my head, but I'm getting there with baby steps.
I have to admit going to Yoga class is hard to motivate myself to get there so I use little tricks to make me go, like I go with a friend, he keeps me accountable. Then my instructor pushes me to go just a bit further than I did last time. I have talked with her about my ataxia and foods so she always give me tips of movements I need to do at home and new things she finds out about different foods.
I really think along with eating well, together everything works to my advantage and makes that difference. The other thing that I wanted to say was yes sometimes I get discouraged like everyone else does, but I think I feel like I just can't give up or in to this ataxia or I will be sunk and it will only be that much harder to get out of that funky place. I just don't have that luxury anymore like I used to. Yes I love my couch too much but I find that if I'm making everything balanced with my time of doing movements too then it's ok. Sometimes I use my Yoga belt to stretch out my legs while watching t.v. so I don't notice it. My instructor told me something that really stuck into my head. She said that when I stretch my legs to the point that it hurts, then back off just a little bit and hold for count of 30 I will get micro tears in my muscles that I stretched. So the next time when I do the same thing they heal in the stretched condition so it's a little easier to push and go a bit further the next time. She also said to visualize and isolate that muscle group I'm moving, and really think about what I'm doing in that moment. I do that with eating well too. I visualize it helping the blood go through my body and in my brain building new Neurons and new passageways. She said use that good food your eating for a purpose. So I hang on that!
I love to hear your stories too! I get encouragement reading them. And If you need any encouragement feel free to contact me any time too ok? I think there is power in that! We understand one another more than the outside world most of the time. :0)
I'm always interested in different food plans. Please share along your way. Did you know that there is also a food group on here you can share anything to do with the foods you eat or articles etc. I look forward to reading about it too! :0)
Lucy said:
That's wonderful. I have to say I was going to post about the GAPS diet I am on when I was a little further into it, but I have to say so far, no gluten (or any kind of starchy veg), no refined sugars, additives have been making some difference to me too, so I'm excited to read your progress. I will post further about my travels on this food plan after I've been on it for longer.
It is reading this kind of thread that helps bring us all hope and show us that there are still positives even when we may feel low due to our health condition(s).
Though I already avoid a variety of foods and drinks, the gluten free diet sounds like something I could ask my doctor about and maybe try out. I have noticed some issues after eating certain foods or drinking (non alcoholic - I don't do alcohol) beer!
Exercising the mind and body are very important and we should all do an appropriate amount of both.
Kudos to you Jeannie!!! I'm so proud of you for all your hard work! And it's paying off BIG-TIME! You are truly an inspiration to me! Ataxia is frustrating and challenging, but I, like you refuse to give in or give in! You have motivated me to do more...,so thank you from the bottom (and top...,ha!) of my heart!!! ;o)
Just so you know I had a Gluten antibody blood test at my Dr.'s office and I came out to where it showed that I wasn't intolerant at all, but my Dr. suggested that I go off anyway to just see how I felt. She said everyone is intolerant even a little bit. You don't have to have any symptoms, I didn't. I didn't see any improvement for quite a few weeks then I saw slight one's. My Dr. said not having Gluten is like having a guarantee that I'll absorbed all my foods that I'm eating just in case. Well that's all I needed to hear. That was in 2006. So because I concentrate on my foods that I do eat I want them to make an impact on my body and brain. So that's why I went and stay Gluten free. I must say that I feel that I do have a little more control not choosing any.
Good luck making the choice.
Michael said:
Jeannie,
It is reading this kind of thread that helps bring us all hope and show us that there are still positives even when we may feel low due to our health condition(s).
Though I already avoid a variety of foods and drinks, the gluten free diet sounds like something I could ask my doctor about and maybe try out. I have noticed some issues after eating certain foods or drinking (non alcoholic - I don't do alcohol) beer!
Exercising the mind and body are very important and we should all do an appropriate amount of both.
Thanks! I believe not one vit or min will make a difference on it's own. But I do believe they all serve a purpose and work together even if you don't see results right away. Don't give up! :0) Don't give up till you get your breakthrough. And then even then it will give you encouragement to go further yet! It is doing that for me anyway! :0)
dougmusical said:
Well done to you Jeannie. I dont't go to bed early enough - I don't exercise enough - although I'm not too bad with my food - it could be better - at the moment to many sweet things (comfort factor).
I tried C10 last year - made no difference at all. I have been taking B12 for about 4/5 months - no difference to my Ataxia (Sensory) but, I feel there is difference to my outlook etc. (of course as you will know it is needed for brain (neuro) conditition upkeep, so I will see when I have finished them all.
You are so right, in my opinion that the Dr.'s don't really know. I think they can give us more information about ataxia etc that we don't know. My Nero was saying hey your doing more of my job. hahahahah I have a vested interest in how things work so why not right? :0)
gfgill said:
well done Jeannie - epecially for taking control of your own health and finding out what works for you - that's the way to go in my opinion, the docs dont know everything about this/these conditions so lets all help ourselves too!
Yes I certainly will keep sharing, I've even woken up this morning being able to breath through my nose much better as it always seems to be partially blocked, so I'm finding as I go along different things have been happening to my body.
When I've been on the food plan a little longer and I feel like it really is making an impact I'll chip in to the food section.
Just for interest I also tested for not having a gluten intolerance, but was also told by more alternative practitioners I just wasn't absorbing vitamins and minerals, we sound very similar.
Jeannie Ball said:
I'm always interested in different food plans. Please share along your way. Did you know that there is also a food group on here you can share anything to do with the foods you eat or articles etc. I look forward to reading about it too! :0)
Lucy said:
That's wonderful. I have to say I was going to post about the GAPS diet I am on when I was a little further into it, but I have to say so far, no gluten (or any kind of starchy veg), no refined sugars, additives have been making some difference to me too, so I'm excited to read your progress. I will post further about my travels on this food plan after I've been on it for longer.
Congrats on your excellent progress. I really admire your self control and drive to be the best that you can be. Your words since I joined the group last year have inspired me; as well as the support of others in this valuable group. It can all be so very daunting watching our diets; exercising. I have benefited from your advice to cut out the refined sugars. It really does help keep the ataxia in check. That along with my strict gluten/soy free diet. One day at a time is the only way to get by.