new to this..

[lynn2017]

iam a 49 year old lady who has tremors and balance problems currently being diagnosed as cereballar ataxia . new to this site , from north east

[brossi65]

I also have essential tremors along with Ataxia. My neurologist put me on Gabapentin for the tremors and neuropathy and it has helped. I'm now able to write and drink liquids without spilling it. Speak to neurologist and ask him/her if it will help you. Mild exercise and meditation has helped me greatly. My balance issues are getting better. Aqua exercise is the best way to go. God bless...I hope this helps u.

[lynn2017 in reply to brossi65]

yes iam currently on gabapentin for the muscle nerve pain which doesnt make a lot of difference for myself . i find my speech is starting to become muddled to in parts . its good to know its helping you . thanks for the reply

[brossi65 in reply to lynn2017]

It takes so much patience and positive attitude in dealing with this disorder. Keep your hin up, and keep me updated. Well wishes...God bless!

[isabelalfaiate in reply to brossi65]

Dear brossi65

Tell me about the aqua exercises. I would love to be able to do them.

thank you God Bless

Isabel

[brossi65 in reply to isabelalfaiate]

I go into my son's pool and do simple exercises that difficult to do without water. I do walking, lifting legs upward and side ways (like a scissor). I also lift up with my knees bent to help strengthening my upper toghs and stomach muscles. Treading water helps all the muscles in throughout the body. This type of exercise is also very good for my Rheumatoid Arthritis, too. If u don't have a pool near bye, then join a healthcare facility that has a pool. Sometimes states allows medicare assistance to pay partial or full payment for the membership. I hope this helps... I wish u the best! God be with U☺

[isabelalfaiate in reply to brossi65]

Thank you,

I am asking because I am going for a week holiday in house with a pool and want to make use of it as much as I can, since I will not be doing my peddaling (minibike). I have a pool nearby and actually joined pool aerobics, but the instructor even though I explained my needs did not understand anything about ataxia and kept shouting at me to get away from the rope (which I used only when I lost my balance in the end I gave up).

I am going to a physiotherapy centre maybe they have the facility.

Thanks for the advice I will make the best of it.

God Bless

Isabel

[brossi65 in reply to isabelalfaiate]

Please keep e updated. One thing about aqua exercise Is not to over due because u may feel pain the next day. I don't think with ataxia u can over tax your mucles. When I sometimes overdue it, I'll wait couple of days to exercise again. I feel everything we do for our well-being must be done materially. I'm a believer when listens to their body the better out body will work with us. Have fun on your vacation. U r in daily prayers. God bless... Stay well 😎

[isabelalfaiate in reply to brossi65]

Hi brossi65,

I will do, I am also careful and listen to my body.

god bless

take care

[brossi65 in reply to isabelalfaiate]

Great! It seems both of us r on the same track, lol. God Bless!

[ladyntramp in reply to brossi65]

Hi brossi65, you people in England seem very fortunate as your neurologists take great care of you, e.g. yearly visits, medication for tremors etc. I live in Australia, can't find a support group to attend, neurologist doesn't want to see you for 5 years and when you go in 5 years time asks why you are there. I found another neurologist (as I don't like rude people) but he hasn't made another time for me to see him - and it has been 2 or 3 years since I saw him last. My family in England not only get to see their neurologist regularly but also have a support group they can attend as well as this group online (belonging to Ataxia UK). But I try to stay positive, even though some people can't seem to understand why I can't let go of certain items like plates, cutlery etc., and as for falling they tend to think I did something to make myself trip when you really don't have to do a thing; you just fall. I used to do water aerobics to ease the pressure on my joints, good idea to do it now as it will help with balance I reckon.

Stay well, stay happy. Barbara.

[Litty in reply to isabelalfaiate]

Oh tips that MAY help swimming. I used to love the water but got scared. I am so lucky because my neuro-physio came out to a pool and helped me. I use an inflatable collar and 2 dongles (one under my arm pits) to swim. I float back and the other goes under my knees.

Hope you understand and hope not too late x

[lynn2017]

you are right there positive thinking is the way forward rather then dwelling on it . you too , thank you take care

[february]

Dear Lynn2017, A HUGE welcome to this site! You'll find many wonderful people on here for support and understanding! I'm a 63 year young...,ha! woman, diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) thirteen years ago (at your age), although looking back, I had extremely minor symptoms starting about eight years before diagnosis. No one in my family, as far back as I know, had/has ataxia, except me! Anyway, I live in the USA (State of Michigan). I find exercising for strength and balance, as well as eating as healthy as possible helpful. Also, having a positive attitude helps me deal better, concentrating on what I can still do, as opposed to what I can no longer do, things like that! My best to you ;o)

[lynn2017 in reply to february]

thank you very much , its mad how different times that everyones symptoms started . mine started very young at 18 and has gotten worse ever since as i have gotten older , 63 years young yes thats right young ! ha! its nice to get replies of people and some support/ advice . that sounds like a good attitude and outlook on life to have . usa very nice , iam from newcastle in the north east of england . take care

[wobblybee]

Hi Lynn, welcome😊 Where are you in the NorthEast🤔xB

[lynn2017 in reply to wobblybee]

thank you very much newcastle spoke to you on the phone this afternoon with regards to my daughter emailing you with the email address she uses on behalf of myself , she also types the replys to these msgs also . a great help ha! speak soon x

[JillJ]

Hi, I am 51,live in the north east of the UK and was diagnosed with Late Onset Idiopathic Cerebellar Ataxia. I have had an MRI and there are no lesions. There is now some idea that it may be related to stress (the end of a very longterm relationship seems as if it may have been the catalyst). I live completely independently, and do not need a wheelchair, but am very careful and 'wooden' in the way I walk I believe. I cannot do two things at one, for example, putting my car keys in my bag as I walk along, is now a no no, and I have to stop walking, put my keys away, and then start walking again, giving full concentration to just one thing at a time! I don't have tremors at the moment, but definitely balance problems, and am resisting the urge to use a stick.

[lynn2017]

Hi jillj , dont think i had any lesions on mine also as they said it was normal. yeah its better to do one thing at a time for me i find . i have tremors and the balance problems, yeah i have my stick. when i walk i always have to stop every so often as i find fatigue comes with this also for me. its nice to speak to people from the north east of england