I am 51 with Ataxia that is getting worse with age. It helps so much to hear other people's stories. I Thank all of you for sharing. I was starting to crawl in a hole till I found this sight. I try so hard to keep my head up!
I so agree with that Lori... I have been contributing to ataxia groups and forums since about 2004 and am still benefiting.
Take care, Patsy
Hi Lori!!! Doesn't it! I found this site about 3 weeks ago, and it is great. I am 43, and I was diagnosed about 6 years ago. To be completely honest with you, it is horrible having this disease. It effects every single thing in my life. Not only mine, but my husband, and my daughter. It is very depressing. But, I guess, it is what it is. Keep your head up. Keep on doing as much as you can. I am right there with you. It sucks, but just keep smiling. Good luck!!!
Sharon
Wow you had a good day! I have people telling me " you only did so much" why are you tired? I feel the feeling of falling apart. I do realize it takes so much more energy to even walk. I really do want to work on my core. Was told that would really help. Really what it all comes down to. Is I have to fight harder. I need a program.
Thanks,
Lori
Michael Ward said:
53 today and 54 in August 2012
It started about 45. Nov 2010 I was offically dianosed.
Today I'm better than 1 1/2 years ago.
Diet Change.
CORE Training.
Stress Management (Work in Progress)
I'm good for a 6 hour grind then I fall apart each day.
I've learned to accept it.
Today I dig 3 holes and planted three 5 gallon plants in my garden.
Washed two cars (OK I had them washed at the car wash)
I fight this Ataxia everyday and everyday it wins.
The Goal that I have is to go as many rounds as possible.
This approach is working for me.
My program is something I have been working on.
Keep your head up and out of the Hole!
Create a program that works for you.
Staying busy is a good way to deal with it.
Kind regards,
michael
Same here we must of started around the same time. Good thing you have a husband. Im finding out men want to find a perfect women. Sure I date. But that's all. Now its to the point I will only go out with people I know. But I do have 3 wonderful children. And 2 grandchildren, that are scared of me because of the way I walk and talk. I know when they get older things will change. And I hate it when people say " Ataxia isn't so bad" I think its the worst!
Lori
butterflyflyaway said:
Hi Lori!!! Doesn't it! I found this site about 3 weeks ago, and it is great. I am 43, and I was diagnosed about 6 years ago. To be completely honest with you, it is horrible having this disease. It effects every single thing in my life. Not only mine, but my husband, and my daughter. It is very depressing. But, I guess, it is what it is. Keep your head up. Keep on doing as much as you can. I am right there with you. It sucks, but just keep smiling. Good luck!!!
Sharon
Hi I was diagnosed with congenital ataxia 2 yrs ago I’m 56. So finding out about a birth defect from parental alcohol abuse ( fetal alcohol syndrome). It really damaged both sides of my cerebellum. My husband & I were shocked by the MRI. God knows what he’s doing & the timing of my knowing so I’m as accepting as I can. Things could be worse I do as you with giving my all most days for about 6 he’s. Then I’m done. I’ve made a lot of home adaptions, even putting my bed on main level of 2 story house to prevent falls. I’ve had 10 very bad ones with bone breaks & concussions. I also need a walker to navigate & look around as I walk. I have a good attitude. Sounds like you do too. Staying positive & a sense of humor , being able to laugh at yourself as hard as it is keeps me going. Take care
Michael Ward said:
53 today and 54 in August 2012
It started about 45. Nov 2010 I was offically dianosed.
Today I’m better than 1 1/2 years ago.
Diet Change.
CORE Training.
Stress Management (Work in Progress)
I’m good for a 6 hour grind then I fall apart each day.
I’ve learned to accept it.
Today I dig 3 holes and planted three 5 gallon plants in my garden.
Washed two cars (OK I had them washed at the car wash)
I fight this Ataxia everyday and everyday it wins.
The Goal that I have is to go as many rounds as possible.
This approach is working for me.
My program is something I have been working on.
Keep your head up and out of the Hole!
Create a program that works for you.
Staying busy is a good way to deal with it.
Kind regards,
michael
Hi
I have an extremely rare form connected to my thyroid not working from birth, We suspect I've had mild symptoms throughout life but I was in my 30's before been diagnosed with it when my mobility took a turn for the worse after problems with my body not converting the thyroxine meds properly.
I have been in wheelchair since 2005 when got issued my first one for full time use by NHS, but used a mobility scooter for daily dog walking since 2003.
I'm also deaf since age 16 (42 now) which was also caused by a similar 'thyroid storm' incident after 'experts' reduced my dose too much at age 16.
I have been doing Forced Exercise routine daily for a year combined with core pilates floor exercises and seen an improvement in my mobility, fatigue levels and reduction in involuntary muscle movement.
Kati
Hi Katy
Love your attitude - "Staying positive & a sense of humor , being able to laugh at yourself as hard as it is..."
Will try to learn this as and make it part of my life. Thanks.
Charmaine
Kay said:
Hi I was diagnosed with congenital ataxia 2 yrs ago I'm 56. So finding out about a birth defect from parental alcohol abuse ( fetal alcohol syndrome). It really damaged both sides of my cerebellum. My husband & I were shocked by the MRI. God knows what he's doing & the timing of my knowing so I'm as accepting as I can. Things could be worse I do as you with giving my all most days for about 6 he's. Then I'm done. I've made a lot of home adaptions, even putting my bed on main level of 2 story house to prevent falls. I've had 10 very bad ones with bone breaks & concussions. I also need a walker to navigate & look around as I walk. I have a good attitude. Sounds like you do too. Staying positive & a sense of humor , being able to laugh at yourself as hard as it is keeps me going. Take care
Hi Kait
I think I should develop my own program - will try pilates and forced exercise.
May I know which kind of forced exercise are you doing? are you do it at home? Thanks.
Charmaine
Kati said:
Hi
I have an extremely rare form connected to my thyroid not working from birth, We suspect I've had mild symptoms throughout life but I was in my 30's before been diagnosed with it when my mobility took a turn for the worse after problems with my body not converting the thyroxine meds properly.
I have been in wheelchair since 2005 when got issued my first one for full time use by NHS, but used a mobility scooter for daily dog walking since 2003.
I'm also deaf since age 16 (42 now) which was also caused by a similar 'thyroid storm' incident after 'experts' reduced my dose too much at age 16.
I have been doing Forced Exercise routine daily for a year combined with core pilates floor exercises and seen an improvement in my mobility, fatigue levels and reduction in involuntary muscle movement.
Kati
I am benefiting from this forum too.
Appreciate what people here to share and support each other.
When my world turns upside down because of this disease, I lost hope and faith.
Don't know what I could or couldn't do and what does this disease look like....etc.
I feel much better when I find here.
Thank you for setting up this forum, it is a very helpful website.
Charmaine
Hi Charmaine
Here is a post I did on my blog explaining what exercises I have been doing to help my Ataxia. I also have Dystonic movements mixed in, so have more jerky movements than a constant tremor. I don't know if it will work if that is the case for you.
http://katilea.wordpress.com/2011/12/16/the-battle-for-control/
Kati
Charmaine said:
Hi Kait
I think I should develop my own program - will try pilates and forced exercise.
May I know which kind of forced exercise are you doing? are you do it at home? Thanks.
Charmaine
Hi Michael
Love your outlook on life, I'm likeminded I have had ataxia since 18 month old and just had to learn to adapt with it. I have a routine of tai chi, yoga, vibro training and recently bought a kinect which is great for co ordination and fun I also work so this keeps me fit. As for the mind I'm studying for an OU degree alittle at a time as stress does affect me.
Totally agree with diet I eat a high protein, low refine food diet I have found this helps my muscles and combats fatique. Some days I go to bed exhasted but my moto is 'use it, or lose it'.
Sarah
Michael Ward said:
http://www.huffingtonpost.com/2012/05/04/arthur-boorman-veteran-wal...
I was inspired by this.
My brother sent this to me.
Kind regards,
michael
How are you doing butterflyfltaway? Keeping busy with your family? Your daughter has to be keeping you on your toes. If you need to vent or anything please message me. Take care!
Lori
butterflyflyaway said:
Hi Lori!!! Doesn't it! I found this site about 3 weeks ago, and it is great. I am 43, and I was diagnosed about 6 years ago. To be completely honest with you, it is horrible having this disease. It effects every single thing in my life. Not only mine, but my husband, and my daughter. It is very depressing. But, I guess, it is what it is. Keep your head up. Keep on doing as much as you can. I am right there with you. It sucks, but just keep smiling. Good luck!!!
Sharon