Newly diagnosed

[Carolss]

I am 79 yrs old and have recently been diagnosed with cerebellum ataxia. I see it as a death sentence. Some feedback please

[HarryB Administrator]

Dear Carol

Thank you for your post.

A diagnosis of cerebellar ataxia is life-limiting - it makes life more challenging but it is certainly not a death sentence.

The diagnosis can be terrifying but you will learn to cope with and manage your symptoms on a daily basis. I know it is difficult but t is essential that you and your approach remain positive. Keep your focus on the things you can do, not the things you can't. Although there are no treatments and cures available for the ataxias yet there is a wealth of anecdotal evidence that exercise is helpful. Keep moving. If you don't use it, you lose it!

I am sure you feel that your world has been turned upside down at the moment. Things will get better. Use this forum. There are plenty of people on here who have been where you are and are ready to give you all the support they can.

Best wishes

Harriet

[geneticallygeneric in reply to HarryB]

Hi Carol,

Ataxia certainly is not a death sentence. Also, ataxia at 79? You lived most of your life already. Think of us poor folks who got ataxia at a young age!

[Carolss in reply to geneticallygeneric]

i know that getting this in later life is definitely better than young. And I have lived a long life .....but i don;t like the way it will probably end, i am actually freaked out about it all and just hope it progresses very slowly . is it possible that it doesn't progress?

[geneticallygeneric in reply to Carolss]

I'm afraid about what the future holds for me as well and I try not to think about it as it freaks me out. But I do believe one can slow down the progression of the disease considerably. Take care of both your body and mind.

[Carolss in reply to HarryB]

thanx

[ConfusedAtaxian]

I got CA 3 years ago aged 63. Looking back, I think it started earlier. If you search the posts, you’ll find a poem ‘“My description”” which explains a lot. I took early retirement to make the most of life, travel etc. then contracted Ataxia. It’s a cruel disease but wlll not ruin my life. It may have put paid to nearly all my hobbies but I stay positive and laugh at myself as I must look pretty daft to others! Keep smiling and make the most of the time because I am very different in ability to when first diagnosed. I wasted 2 years in self-denial.

[wildstyler]

It's whatever you make it. See life as a challenge, and rise to it.

[hsilverman1]

It depends on the type of Ataxia you have. Have you been genetically tested? A good place to start.

I myself was diagnosed with Episodic Ataxia 2. That was in 1995. I use a walker and cane.

No wheelchair as of yet.

Go to an Ataxia Center for help.

Always,

HRS

[Carolss in reply to hsilverman1]

You have had it for 25 yrs and just now having walking problems. i sometimes use a cane. do u find it depends on the day. sometimes almost everything is fine,,,and then one day i get dizzy and stumble a lot and need a cane. on 2 occasions i could not stop walking backwards and one time my walking got faster and faster and. i couldnt stop and walked into a garage door.

[Edward1943]

I echo what Harrit sayso. Exercise does help. Do what you can for as long as you can. At least you are able to comment!

Johnp

[pinjem]

I have cerebellar ataxia. I am much younger than you, it affects everything except sitting in an armchair. I appreciate what I have. What I can do. Acceptance is key, not fighting it, but working with, around, and despite it. Life is a death sentence. I have found things that make me feel useful. It is difficult sometimes, especially when you first realise what it could mean. I actually feel lucky to be warm, fed, able to see around me. I had hypnotherapy , just 3 sessions that gave me a shove in the best direction, about 3 years ago. Looking inwards is destructive sometimes.

[Carolss in reply to pinjem]

THANX

[Jimbob7492]

I am 71 yrs old and was diagnosed 5/6yrs ago. I, like you, thought it was the end of the world as I know it! It is not! Each day is an enormous challenge, some you win some you break even, some you lose. What you can develop is an enormous sense of achievement in some of the silly things you thought you would never do again.

Have courage my friend and keep checking out the support groups. People are there and will listen. Luv

[Carolss in reply to Jimbob7492]

THANK U

[Susie1972]

Hi,

After 2 n half years of tests being normal I finally got diagnosed Sept 2018 with idiopathic ataxia. To be honest I felt better in myself as I now know what I am dealing with. All my troubles are just leg related, can't dance jump walk backwards, run etc or kick a ball with my 11 yr old. It really gets me down at only 47 but life has dealt me this card and I have to adapt! You will feel better eventually now u know wat is is you have. You won't see Neuro often so Have a chat with ur gp if u are down, mine doesn't know much about it but I take baclofen and gabapentin at night to stop cramps.

Welcome to the group, chin up

Sue

[deliusfreak]

Dear Carol

Obviously, you feel downhearted right now, but I'll tell you a little of my experience. My younger brother was diagnosed when he was 28. When I was 41 I was diagnosed with Multiple Sclerosis, which was later corrected to SCA. I am now 69, cannot speak, type slowly with my left hand only and am very happy. Why? Because I try not to think of the past or the future. I genuinely wish you well Carol! But moping about your situation will only make you worse and eat at your heart!

best wishes

Ray

[Carolss in reply to deliusfreak]

what makes u happy

[Carolss in reply to deliusfreak]

THANK U

[Wedny1]

I reflect on what everyone else says here I was diagnosed at 43yrs my youngest was 1yr old and have never been able to do the sort of things that I did with my other kids! Each day is a challenge bit I look to the future and stay positive always. It's not a death sentence live your life.

[Carolss]

THANK U

[coat2003]

TAKE CARE OF YOUR BODY and above all YOUR SOUL. ACCEPTANCE is the key, not fighting it, you'll end up like Sancho Panza, fighting with windmills...utterly useless.