MY LIFE WITH CEREBELLA TATAXIA

[ianrapson]

Hi my name is Ian and I am 42 years old, and have been diagnosed with Autosominal dominant Cerebella ataxia.I found out my mum has the disease also and is getting vey bad with everything that she does. My nan had the disease also and now because my disease is hereditry, it has been passed into my daughter who is 12 years old. I feel that CA is so horrible that i cry and think why i have this death sentence hanging over me. Does any body else feel the same?

[anihol]

Hi Ian. My mum is just being tested and I have a 13 yr old daughter who I am very concerned about her developing it later. I'm EA1 and so far officially I am the only one. I am 43 and have to use a mobility scooter most of the time. But.....i can still enjoy watching my daughter growing up..we go for meals together and the cinema as I can still join in with those things. There are a lot worse things out there and I am grateful that I can still function even if it is on a much smaller scale. Try to hang onto the positives. Anita

[neta]

it is horrible

[Litty]

I think we all feel that sometimes but at least we are all still here : )

[isabelalfaiate]

Hi Ian, I have cerebellar ataxia too, which was herditary, my dad had it and his sister. In that generation out of five siblings only two had it. All of them had children a total of 14 children in my generation, only I have it. all the others are older than me, I am 63, and no one shows the symptoms. My aunt who had it, had 4 healthy children. So chances are your daughter may not have it. Do not suffer in anticipation. Here in Portugal they do a genetic test at 18 only, I do not know if this is possible for you. My strategy in dealing with this is focussing on the things I am able to do instead of all the things I am unable to do. We are having terrible forest fires and many people lost their lives others lost everything. I am greatful for being alive and for my family who are so good to me. I am still very mobile because of my will power and exercise. I believe there are two days I need not worry about, yesterday because it has gone and tommorrow because it has not come, I try to live today. I witnessed my dad's deterioration, because he gave up as he did not know any better. I am so much better informed now. Being sad is not helpfull Enjoy your time with your daughter, be happy, laugh alot.

Best wishes

Isabel

[tedjohnson in reply to isabelalfaiate]

Isabel has written it brilliantly and I think we are all in the same boat Keep writing here and that will help by sharing your worries. I always think of the many people in the world who are so much worse of than 'we Ataxians'. Have you joined a local support group ( ataxia u k will give you details). They can be most useful and supportive

Very best wishes to you. Ted

[ianrapson in reply to isabelalfaiate]

Thanks for the kind words Isabel. My mum is getting really bad with her cerebellar ataxia, and y nan also had it. So as you can see because i have seen it first hand, then i know what will happen later in life. My daughter is disabled with a rare genetic disorder of epilepsy and she has also got cerebellar ataxia along side epilepsy and she is only 12 years old

[isabelalfaiate in reply to ianrapson]

Dear Ian,

I too saw my dad and aunt deteriorate and battle to get that out of my mind. But I am not my father nor my aunt and believe my circumstances will be better. They already are, I am coping much better, I am more informed and I am able to circumvent difficulties easier. I focus on what I enjoy and let tomorrow worry about itself. I am sorry about your daughter, but I am sure there will be great medical progress in time to help her generation go to this site walkingwithataxia.com/ you may find it helpful.

Best wishes

Isabel

[Carolss in reply to ianrapson]

I also have both epilepsy ane cerebral ataxia. I read that anti convulsant meds contribute to ataxia. But i cant stop taking them. A seizure can be deadly

[Trinity48]

Thank you Isabel for your encouraging words I feel so much better today after reading your message ,so good of you to post that.Best wishes.

[february]

Dear Ian, I'm so sorry you are feeling badly! I was diagnosed with Sporadic Cerebellar Ataxia thirteen years ago (unknown cause, progressive, symptoms 24/7), although I realized I had very, very minor symptoms starting about eight years before diagnosis. No one in my family, as far back as we know has/had ataxia except me! I'm 63 years young now and use a cane (stick) or rollator when I leave my home, but am still able to walk, extremely carefully, in my home without using any aides. I try to concentrate on what I'm still able to do, as opposed to what I can no longer do. I have mini-pity parties (cry) occasionally, but they're short lived, as I'm so blessed! Exercise for strength and balance is helpful, as well as eating as healthy as possible. Yes, ataxia is very frustrating and challenging, but trying to have a positive attitude helps me! As Isabel said in an earlier post, try living for today! You may want to consider talking to a therapist, as I did years ago and it was very helpful! If there's a support group close to you, that may be helpful also, as Ted suggested in an earlier post! I live in the USA and there's no support group close enough for me to attend, so I email back and forth with others that have ataxia online. And, of course, sites like this have been invaluable, as others with different types ataxia understand! Birds of a feather...,ha! My best to you..., ;o)

[Veteran250 in reply to february]

Beautiful advice Feb

[wobblybee]

Hi Ian, welcome😊

Do you know which type you have🤔xBeryl

[ianrapson]

yes i have the cerebellar ataxia that was passed on to me from my mum. I am 41 years old and have fallen over so many times because of my poor balance.I have had this disease for about 6 years and finding it really difficult at the moment

[Veteran250 in reply to ianrapson]

Ian, I am 73, I have fallen over so many times I think I am well practiced at it..... I have had a balance problem for a few years now. With arthritis in both knees. I get around the house holding on to furniture or walls.....

My regards to you.

Don.

[Chris020485]

Hi yes, im chris and im 32 I have ataxia associated with the sacs gene, it's very horrible to think what we all have to come. My son also has downs syndrome while we are unsure of my daughter yet but try and keep healthy especially mentally. I had months off work due to the fact I couldn't come to terms with it so I know how you feel. Stay strong