I have ataxia what stage at the mo im not sure yet

Hi Karen - Question for you - Is Diamox / acetazolamide only available in the UK or would John Hopkins have this as part of PT?

Karen Dixon said:

Paul, I read your profile. Your in the UK? Have they tried Diamox on you? or the generic would be acetazolamide. This helped me tremendously with my ataxia. I have ataxia, secondary to a chiari acquired from Ehlers Danlos. My ataxia was so bad, I had to hold onto walls to walk. 4 years undiagnosed. I visited Johns Hopkins University Hospital in Baltimore, Maryland. They have an Ataxia Clinic there. I was seen by Dr. David Zee, a leading doctor in the USA for ataxia. You may want to read up on some of his articles and discussions, and see if he has a professional relationship with another doctor in the UK, that they can recommend. Remember to live life everyday to the fullest, and do not feel sorry for yourself. My illness has bought me many friends, and the understanding of others, that have to cope with disabilities (i.e. cerebral palsy). I have 90% of my balance back, can look at lights, and swim 3-4 times per week, to keep my core muscles moving. I am also learning a new language to help stimulate my brain...keep learning new things, this will help with your brain. God Speed. Karen

Hi Lois - did the company give you a deductible to pay by chance?

Lois Sheehan said:

I'm getting a mobility chair thru Medicare

I have Sporatic SCA diagnosed (or should I say classified because they don't know how I go ataxia). I was misdiagnosed for years, I've had every invasive tests. Everything that was available and 37 blood tests on top of it. My guess is as good as theirs I think. I was a hairstylist and from inhaling all the toxin.s and absorbing them through my skin, I bet that's how I got it. But I don't really care why anymore.

And since they really don't quite know, and I know my body how it feels better than they do, I'm always working at just being a little bit better than yesterday, baby steps thats all.I listen to my body and have down days and just go with it. I push a little more on day's that I feel good and do more. It's not what I can't do that I focus on anymore it's what can I do that I focus on. Between that, changing my foods (no Gluten, no refined sugars, no alcohol, no preservitives, nothing in a bag or box anymore and focusing on regular movements (exercising) I'm realizing the more and more resultse I get, that we can help our body be as healthy as we can to be able to deal with this ataxia. Good luck on your journey with ataxia! It's a just a new way of doing things, new chapter! :0)

I totally agree with you Jeannie. The right foods & excerisng is a must for me. If I take one day &

go out to eat, I suffer for several days afterwards.And a positive attitude is important also.Some days it's hard to be postive.But usually I'll find away.Good luck on your Jorney also!

I used Forced Exercise Theory and found that has helped me. I've even been able to go back to using crutches after been too unsteady and unable to stop hands flexing just before I started. (so let go of walking aids unintentionally).

http://katilea.wordpress.com/2012/05/08/brief-update/

I’ve had sporadic cerebellar ataxia (non-hereditary?/unknown cause?) for 8 years now. The ? Is due to the act that I’m going thru genetic testing for recessive ataxia to see if any thing shows up. Anyway, it affects my balance/dexterity, speech (slurred) ad swallowing (coughingg/choking). I started using a cane about a year ago as I took some nasty falls which isn’t fun… I call it my security cane, like a security blanket for adults…ha! I find people to e very kind when I go out, holding doors etc. Because there is no cure for ataxia I find exercise really helps, keeping muscles and core s strong as possible. I also bought a book called “The Balance Manuel” on line which I like. I guess my theory is if you don’t use it you lose it so be as proactive as you can be safely. It takes a lot of effort, but it’s worth it! Ataxia is very challenging and unsettleing as it comes with fear of the unknown. You are not alone in how you feel and I wish you the best!

Hi Rose, you know when I read about the fear I totally related. I realized that's so true. For me even with the small things it usually stops me and becomes huge if I let it and don't control it it does control me! It's hard not to let it control me. I have to talk to myself to really remind myself that I can do .............(it) everyday.

The balancing manual is very interesting to me. Who is the author? I've watched some video's on youtube but wondered if there is one in paticlular that was by the same author or close to the same exercises to do. :0) Thanks! :0)

Hi Paul - On the one "script" ??? that I recently found just says "Ataxia".

I'm kind of thinking that it's cellebellar since I had a AVM bleed in the cerebellum; to be sure, this might sound like a silly question, but how do I find out for sure?

thanks for responding, i have progressive cerebellum ataxia the exact type i am not sure , i am still waiting for my results to come back, its been 8 weeks so far!! for yourself have you had a brain scan ? if not it could be wise to have one

Julie A. said:

Hi Paul - On the one "script" ??? that I recently found just says "Ataxia".

I'm kind of thinking that it's cellebellar since I had a AVM bleed in the cerebellum; to be sure, this might sound like a silly question, but how do I find out for sure?

I apologize for anybody I have not been on here Going through a lot right now Not that anybody else is not God bless all live and light

Sorry I haven’t been online Going through a lot like most of us God bless love in light

we do are best to cope

Hey Michael, I'm with you on your thoughts here! What ever works I say! Trial and error, challenges each day! I look forward to them now. One I know there going to come regardless so why not imbrase them right? :0)

Not having any of those things you wrote about has made huge improvents in my health to where I can manage this ataxia much better than when I wasn't.Letting go of refined sugar in combo with all flour has somehow stoped my degeneration of my cerebellum. Strange foods that we all have access to could do that! But food is made up of molecules like meds so maybe that thought needs to change. In some cases it did take me a few tryies before I went off completly and stayed off. But because I've gained so much more in life that it's all worth doing or should I say not doing it made since and still does! :0) Working at being as healthy as I can be now I believe helps my body tackel each symtom of this ataxia so I'm more in control of my body. Who knew? :0)


P.S I was told men sweat, women perspire hahahahahaha!


Jeannie Ball said:

Hey Michael, I'm with you on your thoughts here! What ever works I say! Trial and error, challenges each day! I look forward to them now. One I know there going to come regardless so why not imbrase them right? :0)

Not having any of those things you wrote about has made huge improvents in my health to where I can manage this ataxia much better than when I wasn't.Letting go of refined sugar in combo with all flour has somehow stoped my degeneration of my cerebellum. Strange foods that we all have access to could do that! But food is made up of molecules like meds so maybe that thought needs to change. In some cases it did take me a few tryies before I went off completly and stayed off. But because I've gained so much more in life that it's all worth doing or should I say not doing it made since and still does! :0) Working at being as healthy as I can be now I believe helps my body tackel each symtom of this ataxia so I'm more in control of my body. Who knew? :0)

Unfortunately right now I only have my phone which I’m thankful for Butex hubbytook the wires to my router and I have no internet at home

Hi Paul, Nobody knows what our futures hold. I have somewhat the same ataxia you do. Exercise is the key to helping. Every morning we wake up we have ataxia, no matter what we eat or if we exercise. We still have ataxia! But the key is to do what makes you feel good or happy. We have a horrible disability. But it is what we were dealt with. And there is nothing we can do to get rid of it.

Lori


But keep positive please
Lori said:

Hi Paul, Nobody knows what our futures hold. I have somewhat the same ataxia you do. Exercise is the key to helping. Every morning we wake up we have ataxia, no matter what we eat or if we exercise. We still have ataxia! But the key is to do what makes you feel good or happy. We have a horrible disability. But it is what we were dealt with. And there is nothing we can do to get rid of it.

Lori

Sorry it took me so long to give you info. regarding "The Balance Manuel" Jeannie. This manuel would be helpful for anyone with balance issues. Mike Ross is the author. He's a physical therapist. If you Google "the balance manuel-mike ross" it should come up. Initially, you'll see FREE balance exercise videos then the pitch to sell an online manuel. As I didn't an online manuel, I emailed Mike to find out if he sold a paper version. He emailed me back, gave me the link and I was able to order (for $19.99) a paper manuel. It came in the mail within days and I've been happily using it ever since. Also, periodically, I get Free videos and hints online from Mike for additional balance exercises/info. Let me know if you have any trouble getting the site and I'll try to help...(of course, this includes anyone that's interested)...

You're welcome Jeannie!!!

Thanks Rose for this link http://www.youtube.com/user/TheBalanceManual I find it very helpful! :0) There are exercise movements that are in Yoga and Pilates. This is great to find! :0) Thanks again! :0)