Mental health

Hi all

Having read the paper recently there is an awful lot about the benefits of exercise Whilst I agree this is very important it must make some Ataxians feel very frustrated.

This post is not for everyone only for those who are in the same boat as me.

I was diagnosed with CA about 5 years ago.I did walk and exercise in that time but now has come time when movement in my legs and talking is difficult not impossible.While my intellect tells me to exercise the body seems reluctant.

I always walked even as a child and did manual gardening.Now is the period of adjustment and a lot of self talking.I am not very good about the adjustment side..I have a lot to learn.

A while ago ago on this site there was a post about what we do to cheer ourselves up.I think we have to remember there is more to us than just a body.Mental health and well being is very important but we often forget this bit.For example I like looking at the hedgerows from my scooter.Others like pottering into town for a coffee and others do all sorts of things to make them feel better.This part of our lives is very important and are examples of various adjustments..

I started thinking about this very thing in response to various programmes on tv about transplants.

I wondered if they could transplant the brain or the bit of it is not working well like in our case the cerebellum.How much of us would remain and would we be the same person.With all these thought whirling round my head I started to think about our personalities and what makes us.I do realise it is not the part of the brain that dictate our personalities but it did start me thinking.

I decided that there was more to us than just a body.Mental well being is just as important.

When your body is struggling you compensate.Again what do you do to improve this side of our beings ie what do you look forward to doing.Am I just trying to cheer myself up or has anyone else been challenged?There is also the spiritual side of some of us but that is probably another post.


Dear Marie
Exercise is for ataxians who can do it
Not for ataxians who cannot function safely.
Preserve what residue of fitness you have
For others ie carers.

I think I know what you mean - sometimes feeling guilty about not exercising is quite depressing.

Before I was diagnosed and found out about ataxia on Ataxia UK website, I thought I was lazy. I was brought up to think that way and struggled with lack of energy but the balance issue wasnt too bad till my late 50's.

I agree it is equally important to feed the mind with beautiful thoughts and enjoy the things that make us feel good.

Patsy xx

EXERCISE is in the eyes of the doer. Repetitive motion, equpment, gyms, etc, are not requirements for exercise. It can be any movement whatsoever.Chair yoga, sitting exercises, stretching, just moving legs and flexing muscles, wiggling hands and feet, ANY water activity (you can't fall), and if you can walk, swim, bike (3 wheeler), laugh out loud, sing, ANY movement is exercise, and exercise is great for the mind and soul as well as the body. CAN'T never could do anything.

For me, sometimes showering is all the exercise I can do all day. I agree that you have to keep your mind, emotions AND body as healthy as you can, but there's no sense beating yourself up about what you can't do.

Great point!


Dear Marie
Exercise is for ataxians who can do it
Not for ataxians who cannot function safely.
Preserve what residue of fitness you have
For others ie carers.

Every movement I make makes me tired so I have to push my self to just walk. And yes, my mental well being comes first it dictates what my body will do.

Marie, That was beautifully said. Every time I see my doctor I ask why, they just cant remove that part of the brain. I think that thought all the time. I feel really guilty for not exercising. But I have to keep telling myself. That all I do in a day has to be enough. I get to damn tired if I do it all. At the end of the night if I have to go somewhere. Like Peter says. I have to push myself to walk. That has to be EXERCISER. Everyone who lives! is a doer! Everyday is a challenge. From dressing to brushing our teeth to showering, Waking up in the middle of the night to go to the bathroom in the dark. Marie you feel like a lot of us. Not all. That is because we are all different. What I think it comes down to is. People do what they are capable to do!

Hi Mary,
Any daily activity is tiring and the thought of exercises makes it worse. Yet I do and rest for a minute for each different set of exercises. There are some I cannot do but try twice and leave it. I begin my day saying I will do what I can and never set a target that I will do some how. This affects my mental health and disappointment is the outcome. I have slowly learnt to be happy with tiring days!

Well said Marie! Yes, how easily we forget about our "mental" capacities, and what else we can do for mental well-being. Like Jonas said, any movement we do counts as exercise! We must also take care of our mental needs to be truly content and fulfilled! I am ''challenged" every day, so I understand exactly where you're coming from Marie!

For me I know that exercing is really really hard most day's and I don't want to do any but that said yes all Dr's seem to say that we need more exercing day to day. I make movements as fun as I can so I don't realise that I'm moving more. I realise if I don't that it will not only effect my limbs, but my internal organ's which I really want and need to keep working. I have read if I don't no matter how I feel I have to let my head rule what I do, my organs will tend to freze up and not work quite as well or at all. I don't want that. It's important to maintain as much as I can or even get a little better. Meaning that I know better to submit to how I feel because that could go like the wind all over the place.

I always think that when there is a cure/anidote to this ataxia I want to be as healthy as I possibly can so it will work for my ataxia.

In the perfict world it would be great if we could do more exercise like everyone elce. But I feel there is always some kind of movement that even part of an exercise that can be done even if it's not exsactly. I have to work on the all or nothing thinking also, and find that grey area.

I find for me that devotionals help keep me on track and start my day and end my day with good positive thoughts! I feel everyone needs some kind of higher power. Something outside of just themselves to think about and follow. Mine is God. That looks quite diffrent to each person. For me the God I grew up knowing was a more punishing God and I gave that up getting ataxia. Now I have a friend that guides my every step, because I depend on his strenght not my own anymore.

Ask your higher power what it is that he/it wants you to do for the day in the morning. Watch how your day goes and just see.

To me now challenges are just an adventure! I have ton's of them throught the day but now I think there is a reason for each one, to teach me something I need to see/learn from.

Everyday is diffrent, and getting depressed is really easy for us ataxian's I think because we have to deal with so much. Well I choose/want to think there has to be a reason for it. I feel it makes me stop and smell more roses more than I did before.

I know we have talked about Dr Tom Clouse's site before but here it is again just in case you want to look at it to inspier you! :0)

Thanks for the response.I think a bit like Jeannie and there is a reason for our suffering.

What you are all saying about exercise is very reassuring.Do what we can.I do bed exercises now .Some do wheelchair exercises.Its getting the balance right between what we know is good for us and what we can do.Worrying about it may be counter productive.

It does take time to adjust though,from a few years ago being very active to finding movement that we previously took for granted so much more difficult. You are right Lori about the shower.For me now it is an ordeal.I need time to recover.Likewise I can't understand why getting over a threshhold now can be so difficult-it looks so weird to an observer but if we think part of our brain is damaged by trauma, disease or genetics that somehow makes it easier to understand.

Depression seems common in our community and I can understand.But a lot of us finds different ways of making ourselves feel better about our circumstances. We are all different . I just wondered what floats your boat.