New to this

Hi all hope everyone is well......

Well I'm new on here and just been reading some peoples posts.

Im 30 years old and have had cerebellar ataxia from birth i was finally diagnosed at the age of 3 after my mom and dad having many battles with the GP, who just kept say my mom was being an over protective mother. I was finally seen by doc Stuart green at Birmingham children's hospital many moons ago lol. I have tremors a wobbly gate poor speech terrible balance and co ordination. Living with this condition is such a pain but i look at life with much gladness and make the most of each day. I have 2 beautiful children and try my best to make the most of the time we spend together as special as possible for them. I get frustrated at times and would do anything to just be able to carry a drink without spilling it 😬

Even tho i live with this day in day out i feel very lucky with what i have achieved.

I look forward to speaking to you all.

John

5 Replies

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  • Hi John, my husband has Ataxia..diagnosed at 36...he'll son be 39. He is a little unsteady on his feet and also can't carry his coffee to easily anymore! I'm hoping his progression stays slow. He doesn't come on here but I find it a good source of hope. It's such a rare illness I don't think anyone I know truly understands it's impact!

  • Hi John

    Yes I'm experiencing all the symptoms you mention - you make me thankful that I've had it for just two years! I have a loving and helpful husband who is the carrier of all food and drinks in our house!

    Speak again soon - take care

    Carole

  • Welcome to this great forum, John. You will find lots of support, here, from fellow Ataxian's. I, too, have been diagnosed with CA, and have pretty much the same symptoms as you do. I wish I could hold a coffee too without spilling it. I use the molded hot beverage paper cups, with lids, which have a small sip hole. That helps a lot. Regular cups are just too hard to deal with. For cold beverages, I have plastic cups, with straws. You'll never see me with an open beverage, without a lid. I had lots of trouble getting the right diagnosis, also. I have had my CA from birth, but it wasn't proven to be CA till I was around 38, and many tests were performed, in hospital, to come up with the diagnosis.!I was uncoordinated as a kid, had balance problems, and was very clumsy when aí tried to play basketball and baseball. When I was a child it was thought I may have some form of polio. In my 20's they thought it was MS, ( demyelinating disease ), that caused my difficulties. I have gradually gotten worse, especially as I get older. I have always focused on what I can do, not what I have trouble with. By appreciating each day and helping others, I am able to put my own problems in the background and not let them get me down. Of course, that gets harder to do, as one gets older and has more physical difficulties. Best to you, John!

  • Hi John,

    Turn everything possible positive, I have the same problem with carrying drinks etc. so now I don't have to. If you have time , listen to Moonshadow by Cat Stevens.

    I hope this has helped.

  • Dear John, A Huge welcome to this site! I have Sporadic Cerebellar Ataxia (unknown cause, progressive symptoms 24/7), although not from birth. I started having problems when I was 43 and was finally diagnosed at 49. I'm 63 years young now and although my ataxia has progressed, I'm trying to be happy for what I can still do, not what I can't. Exercise for strength and balance is helpful. You sound like you have a very positive attitude, which is wonderful, even though ataxia is very frustrating and challenging! My best to you..., ;o)

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