tremors

Replies to This Discussion

Permalink Reply by Carol Gow on January 21, 2010 at 8:37am

Hello Becky
I don't show temours (yet) and can still eat and drink, although it takes a lot of effort. I can't write, thank goodness for credit cards and PIN's!. I am lucky in that I still have my Husband and because everything to do with money is joint he can sign and no-one is any the wiser. He covers for me a lot.
I have taken out Power of Attorney for all my affairs and I have been quite specfic. I have two attorneys, my Husband and A/N other, they can act independantly or together. I have taken out one for my affairs' and one for 'health and welfare'. It is very good I can use it whenever I want to but the attorneys cannot impose anything while I stilll have my marbles!!! Even when I have 'lost' it they have to do what I have said. I have peace of mind and that counts for a lot, everything is on a legal footing.
Let's face it this condition is enough to think about!!!
Kati one of our Community Managers has weighted wrist bands, there is a thought. They might help you. I am sure Kati will respond and when she does you can rest assured it will be sound, sensible advice.
Regards and look after yourself
Carol

Permalink Reply by becky2020 on January 21, 2010 at 9:32am

hi carol, thanks so much.I read something about those weighted wristbands and maybe they might help.ataxia has really affected me and sometimes i just breakdown and cry.ataxia is rare among black people and it is hard for people to understand you.it takes alot for me to be positive because i am relatively young and all my friends are in college pursuing wonderful careers.i had to drop out of school because writing became impossible.i have an understanding boyfriend and that makes it easier,he understands me and doesn't judge me. thanks for the advice and have a good day!

Carol Gow said:

Hello Becky
I don't show temours (yet) and can still eat and drink, although it takes a lot of effort. I can't write, thank goodness for credit cards and PIN's!. I am lucky in that I still have my Husband and because everything to do with money is joint he can sign and no-one is any the wiser. He covers for me a lot.
I have taken out Power of Attorney for all my affairs and I have been quite specfic. I have two attorneys, my Husband and A/N other, they can act independantly or together. I have taken out one for my affairs' and one for 'health and welfare'. It is very good I can use it whenever I want to but the attorneys cannot impose anything while I stilll have my marbles!!! Even when I have 'lost' it they have to do what I have said. I have peace of mind and that counts for a lot, everything is on a legal footing.
Let's face it this condition is enough to think about!!!
Kati one of our Community Managers has weighted wrist bands, there is a thought. They might help you. I am sure Kati will respond and when she does you can rest assured it will be sound, sensible advice.
Regards and look after yourself
Carol

Permalink Reply by Carol Gow on January 21, 2010 at 11:42am

Hello Becky
You are not alone, I'm sure we all get off days. I don't mind admitting that I do.
Becky I don't care if you are purple with two heads, you have Ataxia just like me. Even if you didn't you'd still be a person. I didn't realise Ataxia was rare in your race why is that I wonder? Perhaps it has never been identified. Mind you it is a rare illness. My friend says trust you to have something rare!!
Speak slowly and keep holding (press your throat) your chin up when talking, I've found this helps, By holding your chin (thus stretching your throat) you control to a certain extent, the airflow. If people can't be bothered to understand you, that is their loss.
Always remember, you are as good as the next man/woman. Everybody has something to contribute.
Keep positive.
Carol

Permalink Reply by Kati on January 21, 2010 at 2:46pm

hi

Which country are you in? I can't believe in UK they would have let you drop out of school just because you couldn't write as they would have to do a statement of educational need and provide you with an accessible computer to do your work on.

I had some weighted wristbands made as ones from sports shop were too heavy as I have very thin wrists. I can still write a little I keep practice signing my name and can manage enough to write out cards for xmas etc I use weights on and slope the desk so my arms are supported also as I write and this helps, but i have more kind of jerky movements rather than a constant tremor.

Having a keyguard on a keyboard will help with hitting the right letters and you can get free program called steadymouse to help with using a mouse. If you click on all discussions so you get the list and the search box at top you can type in words like keyguard, steady mouse etc and all the posts where I have mentioned them in the past will come up.

Permalink Reply by Paul & Gerry Huntsman on January 21, 2010 at 9:10pm

Hi Becky, I have information about stopping the tremors! I was researching Ataxia as I am interviewing a friend of mine who is living with Ataxia. I'm doing a featured article on him. He just told me about his tremors stopping! I felt compelled to pass this information on to you...I'm new with this method of communication...I don't know how to get this message through to you. I hope it makes it to you. To contact me my e-mail is adkaper@live.com and my phone number is 724-747-1655. I'll be happy to send you the article...or give you his contact information so you can chat with him. Best to you, Adrienne Kaper from Washington, PA

Permalink Reply by becky2020 on January 21, 2010 at 9:17pm

hi Addrienne thanks so much.i will definitely contact you.thanks again.

Adrienne E Kaper said:

Hi Becky, I have information about stopping the tremors! I was researching Ataxia as I am interviewing a friend of mine who is living with Ataxia. I'm doing a featured article on him. He just told me about his tremors stopping! I felt compelled to pass this information on to you...I'm new with this method of communication...I don't know how to get this message through to you. I hope it makes it to you. To contact me my e-mail is adkaper@live.com and my phone number is 724-747-1655. I'll be happy to send you the article...or give you his contact information so you can chat with him. Best to you, Adrienne Kaper from Washington, PA

Permalink Reply by nati cepeda on January 21, 2010 at 11:07pm

hi becky,
i have some tremors. i could barely walk with liquids. i know its hard to get help. i dont qualify for ccoupons and i have a daughter. i manage with ss and credit cards, but there is really no help. i have a bs in computer science and been working since i was 14. i stop working a year and a half ago and i feel the need to keep working. i moved to florida and cant even get a license to drive so even if i could of work i wouldnt be able to. i tried to get a doctor so i could start a new process to get it, but i dont have insurance and private insurance rejected me. atleast my daughter has medicaid so thats a relief. thinks r tough and we just have to keep trying. exercise a lot and eat right. ur young just move a lot. i know that we feel like not getting up, but do. do a lot of things that involve hand movement.

take care of ur self

Permalink Reply by Paul & Gerry Huntsman on January 21, 2010 at 11:47pm

Nati! Goodness...please check out what I wrote to Becky. I have information that you may want to investigate. My name is Adrienne Kaper. You can e-mail me at adkaper@live.com and I will e-mail you the information. I have a friend who has Ataxia and just recently his tremors have stopped.

Permalink Reply by becky2020 on January 22, 2010 at 7:03am

hi nati, i am so touched by ur story.it makes it harder for me because i am only 25 so i wondewr what kind of a future i will have.yes we need to take care of our general health too and i am now trying to eat healthier too.i really wish we could all meet and share stories, ataxia makes one feel so alone.take care too, becky.

nati cepeda said:

hi becky,
i have some tremors. i could barely walk with liquids. i know its hard to get help. i dont qualify for ccoupons and i have a daughter. i manage with ss and credit cards, but there is really no help. i have a bs in computer science and been working since i was 14. i stop working a year and a half ago and i feel the need to keep working. i moved to florida and cant even get a license to drive so even if i could of work i wouldnt be able to. i tried to get a doctor so i could start a new process to get it, but i dont have insurance and private insurance rejected me. atleast my daughter has medicaid so thats a relief. thinks r tough and we just have to keep trying. exercise a lot and eat right. ur young just move a lot. i know that we feel like not getting up, but do. do a lot of things that involve hand movement.

take care of ur self

Permalink Reply by Kati on January 22, 2010 at 9:19am

Hi adrienne maybe you could share with the rest of this forum about this miracle that completely stops tremors?

I would like to see a link to this product and evidence that it does what it says it does. The managers of this site will not tolerate people trying to sell products to our members under the guise of a cure for Ataxia or Ataxia symptoms. Please send proof of your claims to katilea@live.co.uk so they can be checked out.

Perhaps your friend could join himself and tell us what worked for him.

To LWA members: we would encourage you to be wary of people offering to cure you, as from my past experience the so called cures are claimed to cure many other acute or progressive conditions also! Please be cautious before paying out for these products.

Permalink Reply by nati cepeda on January 22, 2010 at 10:53am

goodmorning,

i know its hard i am only 28 and my daughter 5 and i wonder how our future is going to b. i tell myself take it day by day and try to help yourself the most everyday so tomorrow ill wake up feeling the same or better. i need to b good for her because i am a single mother and her father is in another state and doesnt even call her. i only have one family member here and she has her hads full. i dont want to lean on her too much. i cant even have my daughter in school till next year because i dont drive and cant walk a mile. i dont know how to stop tremors, but dont have too much caffein or sugar, would help.
take care :-)

becky2020 said:

hi nati, i am so touched by ur story.it makes it harder for me because i am only 25 so i wondewr what kind of a future i will have.yes we need to take care of our general health too and i am now trying to eat healthier too.i really wish we could all meet and share stories, ataxia makes one feel so alone.take care too, becky.

nati cepeda said:

hi becky,
i have some tremors. i could barely walk with liquids. i know its hard to get help. i dont qualify for ccoupons and i have a daughter. i manage with ss and credit cards, but there is really no help. i have a bs in computer science and been working since i was 14. i stop working a year and a half ago and i feel the need to keep working. i moved to florida and cant even get a license to drive so even if i could of work i wouldnt be able to. i tried to get a doctor so i could start a new process to get it, but i dont have insurance and private insurance rejected me. atleast my daughter has medicaid so thats a relief. thinks r tough and we just have to keep trying. exercise a lot and eat right. ur young just move a lot. i know that we feel like not getting up, but do. do a lot of things that involve hand movement.

take care of ur self

Permalink Reply by Paul & Gerry Huntsman on January 22, 2010 at 5:35pm

Hi Kait! Did you get my e-mail? I live in Pennsylvania, USA...and I guess you live in the UK. I was wondering if my e-mail message got to you. Just in case you didn't get my e-mail please check the updated profile that I did Paul Huntsman. You can read his profile. I came across "Living With Ataxia" while researching Ataxia. I'm writing an article on Paul Huntsman as he has had success with stopping the tremors that were very disruptive to his everyday living. I'm sure you understand. If you check his profile, you can read his testimony. Hope this is helpful. ~Adrienne

Kati said:

Hi adrienne maybe you could share with the rest of this forum about this miracle that completely stops tremors?

I would like to see a link to this product and evidence that it does what it says it does. The managers of this site will not tolerate people trying to sell products to our members under the guise of a cure for Ataxia or Ataxia symptoms. Please send proof of your claims to katilea@live.co.uk so they can be checked out.

Perhaps your friend could join himself and tell us what worked for him.

To LWA members: we would encourage you to be wary of people offering to cure you, as from my past experience the so called cures are claimed to cure many other acute or progressive conditions also! Please be cautious before paying out for these products.

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