newly diagnosed and confused

[cobrien24]

I have recently been diagnosed with cerebellar ataxia (3 months ago) although I av had symptons around 16 years...I was wondering if stress,worry and upset can make symptoms feel worse or is it mind over matter,feel so out of control and the condition is controlling me

[HarryB Administrator]

Hi cobrien24

I am so sorry you have been diagnosed with cerebellar ataxia. But please don't despair. Although you never get over the diagnosis it does get easier as time passes and you learn to live with the condition.

The progressive nature is hard to accept and everyone progresses at different rates. You are absolutely right in that stress, worry and upset make the symptoms worse. Although easier said than done, it makes sense therefore to try and not endure these emotions. Everyone must find their own way of releasing their anger and frustration and keeping happy and calm. One of my ways (and I can't believe I am admitting this on a public forum!) is singing karaoke in the privacy of my own home on sing star on the play station. I should've said I have had cerebellar ataxia for around 25 years and am 39. Some might say old enough to know better but it works for me so what the heck!

Although you can't control the symptoms and progression, you can (and only you can) control how you react to them.

Have you joined Ataxia UK? If you haven't, I would absolutely recommend that you do. You can do so via the website ataxia.org.uk. Membership is free and the support available is invaluable. It might be too soon for you to meet others with ataxia but one huge benefit of being a Friend of Ataxia UK is receiving a quarterly magazine produced by the charity. Apart from many other things it completely reinforces to you that you are not alone. I also hope that you find this forum helpful. It is great to chat and be supported by others with ataxia, people who know exactly what you are going through. Believe me, there is not one emotion or experience that someone else on here will not have had. Never be afraid to post and/or ask questions.

Best wishes

Harriet

[LBenyon in reply to HarryB]

Good on you Harriet sing away!!!!!! Not only do have CA but Rhumatoid Arthrist as well and stress deffentlry sets my RA off I really didn't know it can set off my CA as well,the only time I think of my CA is when my speech goes funny and someone mentions my walking???

[cobrien24 in reply to HarryB]

thankyou so much for your advice and kind words reading your reply gives me some form of positive thinking....only 38 years old myself with 2 children and a wonderful partner (my rock) knowing I have family support and I am not alone is a blessing x

[LBenyon]

I too had the sytems for many years before being dianogised, I have been given no number to my CA,but since I suffer from Rhumatiod Arthrist as well I was lead to believe that stress could make my RA flare up.so I don't know if CA if this counts for CA as well??? Lorraine

[BpurceA]

Don't worry you are not alone!

Deep respect and love

Regards

Barney Purce

[maber]

Hello Cobrien24

Sorry to hear you to have cerebellar ataxia , it must of been a bit of a shock but I found it a relief to be able to put a name to what was happening to me , it wasn't just in my head lol . I found stress doesn't help , or anxiety but just go with the flow and know it will go away soon ( I have attacks but the tremors are always there )

I also find that if I feel an attack coming on if I distract myself by ( clearing out a cupboard or sorting out the ironing basket ) doing something small I can make the attack smaller I think ! It could be wishful thinking , I hope this may help you a little bit .

So glad you have family and friends support ,this is so helpful. Try taking notes when you have a new symptom then you can look back on it or ask the neurologist .

I hope some of this helps you ! We are a friendly bunch on here and all have different symptoms and I'm sure one of us can help but are all willing to listen .

Take care , from Maber

[AbbeysAtaxia]

Hi,

As I like to describe it.....

When we get stressed, our bodies release more substances like the fight-or-flight hormone Adrenalin. This usually makes nerves function faster. But, if you have malfunctioning nerves, Adrenalin might sometimes just make them mal-function faster..... Sure enough, stress can worsen almost any neurology symptoms.

The answer is to use various stress-relief methods, talking to people who understand to get emotional support, and learn to cope with situations and plan for them better to cut down stress wherever possible. By cutting down on stress, we can go better, longer.

Yes, worrying about symptoms, which leads to over-concentrating on them, can make them seem worse. Distraction, overcoming boredom and finding something to absorb us can help. Depression can also lead to worsen the perception of symptoms, and may make symptoms like fatigue and aching worse. A good night's sleep can help - it certainly doesn't help to lay awake all night worrying about things.....

I've long had Tourette's Syndrome before Ataxia, and stress makes me twitch more. The techniques above help with that, as well as my Ataxia and other symptoms, but especially the Parkinsonism.

Yes, it's tough to come with terms with a long-term condition, especially one which is slowly disabling. It's also normal to go through a period of emotional struggling with it as a way of coming to terms with it (not just once either, it may come and go). Taking a break and doing something else helps. Above all, knowing you're not alone, and you're not the only one with your symptoms helps enormously. At least you know you're not alone and you're "not going crazy"

Yours,

Abs