Hello

[Lockmaster]

Hi everyone my name is Phil and i live in Liverpool. I was diagnosed with Cerebellar Ataxia 12 months ago and i hope to get some more understanding of my condition and any tips on how i can deal with it day to day. Cheers

[wildstyler]

Hi Phil

My name is Kevin, I was diagnosed the same as yourself 8 years ago ,just get on with life. I am now 68, it's not what you have, but how you deal with it.

Good luck

[auntiesally in reply to wildstyler]

your dead right kevin

[wildstyler in reply to auntiesally]

Thanks

[auntiesally in reply to wildstyler]

do you go on holiday abroad, if yes how do you manage the airports,

[wildstyler in reply to auntiesally]

I ski every year, I find the airports no problem, in fact people who aren't supposed to, fall over more than I do, I think it is probably that I am so aware of my Ataxia that I try harder.

[auntiesally in reply to wildstyler]

ski!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! blinkin marvelous,

[wildstyler in reply to auntiesally]

I think you might be being impressed too easily, I have skied a lot ,it gets me used to falling over, which I am a natural at. But I'm afraid I have all the gear but no idea.

[auntiesally in reply to wildstyler]

I see a lot of people with the gear but no idea, but put it into your head that you have the gear.........................and the idea

[Hope99]

Hi! I found this forum quite recently too. I'm sorry about your diagnosis. I don't have Ataxia but myself but there is an unidentified SCA in my husband's family. My husband and I have times when we are fearful about the future for him and our kids but I have found this forum so supportive, there is definitely a sense of us all being in this together and loads of support, information and hope. I hope you get what you need here. X

[ddmagee1]

I've had CA for a number of years. It started out mild, but now has progressed where it causes me great difficulty, at times. CA symptoms and severity vary from person to person, depending upon the root cause of the CA. My best advice would be to, always, stress the positive, and minimize the negative. For me, I used to have mild tremor in hands and neck. Now, it's become a problem that interferes with eating, buttoning up coats, etc. I take my time and don't rush when eating and getting dressed. My balance is off and I've fallen a number of times. Having a walking stick helps. Jerky movements with my hands and legs can be embarrassing, so I do stretching exercises and try to remain as mobile as I can, which helps. So, rather than concentrate on what I've lost, I do the best with what I still have. Being socially active and being around understanding people is a big help. This support group forum is particularly helpful to me. The type of CA that I have is rare, and I've only seen a couple other people with obvious symtomology! Mine is not due to an inherited disorder, therefore the National Ataxia Foundation, in the USA, where I live, doesn't have much of an outreach for people like me. On their website, they promote helping those with inherited Ataxia. Phil, I have heard the health service in Your country is very supportive of all Ataxians, so that should be a good resource for you! I wish you the best, Phil! Cheers, and welcome to the healthunlocked.com Ataxia community!

[Mermaidia11]

Hello fellow northerner! Welcome to this forum. It's rubbish this ataxia malarkey isn't it? How is it starting to impact on your life?

How is it starting to impact on your life?

The brain injury charity at Norton Street in Liverpool is where I have been referred, they have coffee mornings, a library about brain disorders and counsellors. I think they also give welfare advice as well.

I have cerebellum ataxia

as well, and I haven't found the energy to visit yet!

You are not alone and will get plenty of advice and support here.

Sending love and light – it's a hard to cross to bear, but it is manageable And what other choice do we have, but to be brave and make friends with people who understand

[Lockmaster]

Thank you everyone for all your support! Really appreciate it and feel much better knowing that im not on my own and there are some understanding people!

Speak soon

Phil

[margaretm]

Hi Phil,

Greetings from a fellow Northerner. My tips are to get your GP to refer you to a local neuro physio, who will come to your home and devise a customised exercise plan for you and, whenever it is offered, accept well-meaning help.

Good luck!

[Lockmaster in reply to margaretm]

Thanks a lot i will pay my doctor a visit this week and ask. Cheers

[february]

Dear Phil, A HUGE welcome to this site! I live in the USA, in the State of Michigan, but have found this site to be very helpful! I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) thirteen years ago, although I had very minor symptoms starting about eight years before diagnosis. I find doing exercises for strength and balance, as well as eating as healthy as possible helpful! My best to you..., ;o)

[auntiesally]

hi, from over the water!

ask for phsyio, then do the exercises at home, remember if you dont use it you will loose it, well not everything!

take care

[Mermaidia11 in reply to auntiesally]

Aunt sally are u on the Wirral?!

[Lockmaster in reply to Mermaidia11]

No sally i am from the other side woolton near town

[auntiesally in reply to Mermaidia11]

yes, near sunny new brighton!

[Mermaidia11 in reply to auntiesally]

I am v close to you then aunt Sally ! New Brighton is lovely – hello from a few miles away!

Do you have to go to North Street in Liverpool ?

[auntiesally in reply to Mermaidia11]

hi, no I go to see DR Paniker at clatterbridge, I have only been seeing him since last year. He is a lovely person as is his secretary.

[Zigalig]

Hi Lockmaster,

Welcome to the forum, I joined other forums when I was diagnosed almost 6 years and came off them as they were all doom and gloom which I didn't need - but this site is great - although it sucks to have ataxia everyone on this site is helpful with advice on dealing with what helps them and I would highly recommend finding your local support group - phone Ataxia UK and they will help or look on the website. I was in denial for the first 5 years, it is like grief apparently and you will have very good and a few very bad days. But go with it and be good to yourself and nap if you need. I went gluten free which was an amazing help although both my antigliadin tests were negative. Get physio exercises and do them regularly. I am waiting for a neuro physio appointment as this is what you need for ataxia but doctors often don't know.

Keep positive and concentrate on what you can do (it's taken me 5 years!!!)

Good luck, Amanda