Nervous passenger

[paullymaie-]

Hi, I am 67 and have been diagnosed with Ataxia and the consultant has told me there is a sensory element as well as balance problems. What I don't understand is why I suffer from terrible fear when travelling in a car as a passenger which I never did before and as for towing a caravan, I'm really distressed by the time we get to our camp site and then spend a few days worrying about the return journey. My husband, who is my unpaid chauffeur and is generally very supportive can't understand why l want to sell the caravan and why I'm so frightened. Something I have noticed is a difficulty judging distances which causes me to stumble when out walking, perhaps that has something to do with my fears. Is this a part of Ataxia, has anyone else had this problem?

[HarryB Administrator]

Hi paullymaie-

Thank you for your post.

As you have a sensory component to your ataxia you may have a problem with your proprioception. This is knowing where your body parts are in space. This can make judging distances when moving your body parts from A to B difficult.

This may contribute in some way to your fear of being a passenger in a car and it may not. It is impossible to work out the cause without taking a full history. I think you have developed a phobia. Hopefully this would be receptive to Cognitive Behavioural Therapy (CBT) which is a type of counselling. I would advise making an appointment with your GP to talk through the problem with them and discuss future treatment options. Phobias are treatable. I would hold off selling your caravan at the moment. This fear can hopefully be successfully treated so you can enjoy caravanning again in the future!

Best wishes

Harriet

[TedTom]

Hi my friend was diagnosed with Ataxia 11 years ago. Over the last few years her worries about being a passenger with me have increased. She prefers to think it’s my driving as I get older! Inevitably I disagree and to be honest it’s one of the few things we’ve had an argument over as it got on my nerves her grabbing onto something as if we were going to bump into something or panicking because I hadn’t braked before she thought I should etc. As ever we have talked it over; I think I should’ve realised how scary it must seem for her , knowing she has real difficulties judging speed, distance , space etc because of her Ataxia. She describes It as yet another aspect of not being totally in control which is frightening. However, her advice is to try and not give up something that you both enjoy as heaven knows the Ataxia makes your world shrink too much anyway. The idea of cognitive behaviour therapy is something she wholeheartedly agrees with - when diagnosed this was something I had to virtually drag her along to but now says it was the best thing , the most helpful support she has had.

Good luck x

[Capricorn9157]

Good afternoon. I dont have your sensory condition but think something which may be related. Over hte last few years I have become increasingly 'nervous' with heights. Looking out a window at high levels is no problem but looking down to the ground and my stomach 'churns'. Even seeing something like this on the tv (which more and more programs have adopted) makes me squirm. This was never a problem before, I could climb ladders, walk cliff paths, work on rooves, virtually anything at height - but no more.

I mentioned this, in passing, to my consultant but wasnt taken any further.

Hope you find some relief and get to manage your symptoms. I can just look away.

GOOD LUCK

Steve

[Hidden]

Hi, For many years I became frightened of heights although I had happily been up towers, etc. until my late 50's I am not so scared now but I find being driven quite disconcerting and have given up driving myself because I found it difficult to make spatial judgements.

I get quite afraid when surprised, and I involentarily jump and/or squeal. This is very off puting to the driver who is distracted at the worst moments. I find it best for everyone if I shut my eyes! I am clumsy around the house as I cannot always judge distances.

So, I am afraid that it is yet another effect of Ataxia.

You sound as if you are really in fear so I would advise some CBT for that as it could well make a difference.

Good Luck,

Gloria

[stedman]

Hello Paulymale,

I have ataxia and am experiencing some of the symptoms expressed in this topic. Four years or so since my diagnosis, which thus far has proved correct, my mobility is failing, I now drive short distances on good days, use a stick for walking generally, use trolley when shopping, whilst my wife drives me to therapy classes twice a week. In my case, lack of food causes me a vision problem, proper focus, and speech slurring, I no longer answer the phone due to this. I am considering all mobility options. I still work in the garden and am pleased with efforts, I agree with the general views expressed here concerning mobility, keep ownership for as long as possible, but plan ahead.

[Trinity48]

I sympathise with you .We had a caravan for many years and I had absolutely no problem then(I never learnt to drive) but since having Ataxia 18 years I have found I have become very nervous when my chauffeur (my husband now 86) is driving I thought it might be something to do with my age,now nearly 81 ,but don't seem to be bothered when travelling with other drivers.

[jmkq88]

Its more physical then mental try to understand what you have,my wife has cellebrel Ataxia has hard time. Talking and swallowing and confined to wheel chair your one of the lucky ones for i have to do everything for her caregivers are not strong enough or knowledgable and dont want to take the task,some caretakers just doing it for money and rather get a low maintenance patient