Car travelling

[Bfb65]

Hi, my husband suffers from generalised dystonia and a movement disorder, lately when he has been travelling as a passenger in the car it seems to be triggering his dystonia, making it very uncomfortable for him. As this is new with him I was wondering if anyone else suffered in the same way and if there is anything that will help, as going out in the car is the only thing that we can do now, thank you.

[Rkai]

Hello

I too find car travelling difficult especially for long journeys. Bumps and sudden braking was painful. My answer may not be useful but it’s what we did.

We changed our car for one proven to be the most comfortable (second hand) and had heated seat and back. The warmth was so relaxing I found it hard to get out of the car. Lastly calm relaxing music I find helpful.

If you are used to driving yourself and therefore in control it’s sometimes hard to accept being a passenger.

[Bfb65 in reply to Rkai]

Thank you for your reply and help. It's the spasms and contractions that are the worse for him. It's such a shame that you have to suffer in this way and it takes the enjoyment out of everything you to try to keep doing.

[JoLeAm1685]

In my case more than a short car trip when I descend I need a minute to get my balance in order before walking. In my view it's a combination of messaging from and to the brain which become confused. After a long train ride up to the time I am in bed my body still feels its travelling on the train. In fact on the train my brain 'accepts' the train movement as 'normal' but not when I get off.

Generalised dystonia is bizarre and is different and unique for each suffer, as indeed between one day and another, and in my case between one minute and another.

Important to remain optimistic, live within your limitations, if possible regular brain and body exercises, however small. Tai Chi has helped me mentally and physically.

[peonies18 in reply to JoLeAm1685]

Hi JoLeAm, It's interesting that you should mention the "continuing" movement. I have cervical dystonia which seems to be coming more generalised. I have had several experiences while waiting at a train station and when the train appears next to me I have to hold on to something as I risk falling over. It is as if my body wants to move at the same speed. Slightly bizarre.

Agree it is important to keep positive etc.

[JoLeAm1685]

It might simply be the rumbling noise and vibration of the train which confuses the brain. I use the 'trick' of a trolly case to keep me steady.

[JoLeAm1685]

Yes. Our defective body neuro-muscular and / or balance system cannot manage the millions of adjustments required by the moving vehicle / train. For me it requires determination and effort getting out and up and rebooting my balance system after a car / train ride before starting to walk (wobble).

I simply avoid all travel.

Swimming pool is freedom, but getting out I feel I weight a ton per step.

Nobody understands generalised dystonia like the sufferer !