I had such plans for an active old age but that has all changed. It is true that this ataxia is worse for young people with their whole life ahead of them but people my age (68) also have many future plans.
I have had a very active life and don’t feel that it is over yet. This ataxia has forced me to sit on the sofa all day while my mind keeps on racing around. I can’t even get angry about this situation. It is how it is.
I feel the same way. I don't know what to say. I am ten years younger than you and cant think of anything beyond the "today". I also had big plans but everything is complicated now. N
I feel ataxia has robbed me of my future I am nearly 52 (May) and cant do all the things I would like to do with my grandaughter I remember my dad was older than me when he took bad so he had time with my children when they were younger and often took them to coast etc I cant even push her in buggy I dont make plans now as never now how I am going to be day to day I appreciate good days as I dont get them that often but I to have accepted this is my life now and I must make the best of it by being positive
Dear Gossy and Klazien
Age is only a matter of your mind. I am 67 and have had progressive ataxia for 6 years now. There are lots of things i can't do, but there are some I can. There were some things I could have done, but didn't. So don't just sit on the couch and feel sorry for yourself. Get out there and do something you can. If you can't do it one day there s always another.
J
Ataxia is very frustrating and challenging. I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause)10 years ago, although i believe I had some small symtoms before that time. I'm 59 years young now. I was in mayor dental for several years that anything couple be wrong with me, as I has always been so healthy and active. I had my "pity party" moments...,ha! I finally realized I was Washington a lot of precious time feeling sorry for
myself, lamentine on all I couple no longer do. Therefore, I picked myself up by my bootstraps and embraced all I could still do! Is it hard at times...,YES!!! But lífe is good! I won't give up or give in to ataxia, as I may not be able to control having it, but I can control my attitude about it! So I'll keep exercising for strength and balance, eat healthy, rest when tired and keep doing the all the things I enjoy, for however long is meant to be! (Ataxia can cause depression/anxiety, but there's wonderful help for that!). ;o)
I think everyone experiences this differently. For instance my 15 year old with F.A. is refusing to even contemplate the fact that despite her hard work and dedication to horse riding, she may not be able to ride in the future. My mother is 92 and can hardly walk. Her life is very poor quality. She wants to die. I am 72, perfectly healthy - yet I do not want to be around much after 85! - Your
MIND is obviously very bright and active! - Read and read - and more importantly - WRITE! How about doing a blog! I'm sure it would be of help and comfort to other Ataxians to share the bad days as well as the good.
All power to you Klazien!! x
Hi Klazian,
When I'm having a 'lying on the sofa day' my mind is usually active too. I feel so well
just sitting absolutely still, and my mind wanders on to all the jobs around the house
that have fallen way behind! I was never majorly house-proud to start with but now
things have gotten beyond a joke, particularly the windows, I cannot clean windows
without leaving smears.
When I've got the energy, I prefer to be outside doing some gardening, a slow potter
around in the fresh air sometimes works wonders for me.
I wonder why it is that sitting still makes me feel as though I could tackle anything
without difficulty.
Anyway, today has been a good day and I feel quite optimistic.
Best wishes
Beryl
Ditto
I think it's because, when your sitting quiet on your own, you can make all your worries go away.
That's my theoy anyway!
Personally its difficult for any age and its difficult if your also diagnosed later in life as it takes time to get your head around things.
I got diagnosed with things at 43 of which i was born with and all the things that have gone on in life that has made me feel like i going mad half the time.
If your born with something and understand from a young age some how its not too difficult then it will be when they get a lot older and start to understand more.. I not very good at explaining and everyone will have different opinions and mine are all in the nicest way possible. When your elderly and had a good life it may be hard but yet to be expected sometimes.
So it does not matter what age we are we all question 'why'! And it takes us all differently on how we cope with things and you must listen to what your body says to you . If you have to rest all day then rest everything else can wait.
Take each day as it comes is my thinking.
Today was ok for me so helped moved daughters bedroom around then when sat to have Sunday dinner i could barely use my knife and fork to cut a roast potato or Yorkshire pudding n i am 43 it really is frustrating and my family watching !! Do you want me to cut it for you and i snap NO am not 83 yet hahaha see how the mind thinks .
Bless and take care xxxxxcaroline xxxxx
There's no point crying over spilt milk.
Let´s just make the best of it !!!!!!!!!!!!!
Regards
Jurgen
I think that age is not a factor in how well someone deals with ataxia. Ataxia robs everyone affected by it of a future they thought they'd have, no matter how old they are.
It is true that age doesn’t matter in how one deals with ataxia. My attitude is bad because I can’t do anything I used to like doing anymore except reading and that gets harder since I am going blind.
In the beginning it took some time to really understand that this condition would not, like every sickness in the past, get better. Mentally I knew it but it took some time to really get used to it.
I don’t know if it is ok to complain on this blog. After all, we all have or problems with ataxia.
I used to love horse riding, walking my dog in the countryside, doing craft work, house renovation and roaming around each new place that we lived (there were very, very many)
But I have found out that riding for disabled in South Wales is only for children, I can’t have dog anymore, my hands shake too much plus I can’t see enough to do any arts & crafts or do house renovation and can’t go anywhere anymore without someone else getting me there. So I have tried getting interested in other things but that didn't work.
It is lucky that nowadays I am always too tired for anything and mostly don’t care about my situation anymore. I don't even know why I am writing this.
My husband is very supportive and I realize that also his live has been blighted by this ataxia. My four adult children all live far away in different countries and I don’t know anybody here so he is my only companion. Some people don't have that so I shouldn't complain.
Hi Klazian,
I used to be very interested in patchwork and 'arty' projects. Unsteady hands and
wobbly eyes make this challenging! I made a chocolate cake for my husband's
birthday, even spreading melted chocolate evenly took concentration, I had to
improvise to tidy it up!
Regards
Beryl
Hello
Like you I was very active and full of plans for what I wanted to do. I feel robbed I do try tgo make the best of things but I keep remembering what I was like and what I did. Everything reminds me. Never mind onwards and upwards.
Take care
Fifa
Feeling robbed is about the most apt description. I look at projects I completed
and wonder how I ever managed to do them. These days I spend too much time
on my laptop, sitting still is so restful, but it's hard to get moving again if I sit too
long.
I remember reading some advice on this site that I think is very useful.
Try to plan your day. Break it up into managable segments. Try to do something
you enjoy.
Beryl
How do you know when to let go I am 52
Particularly when there are teenagers at stake
And a long suffering wife!
I have had diagnosed sc? For 5 years
And have just let go the purse strings due to necessity
I am muddled when adding simple figures!
Regards
Barney
I feel the same as a lot of you.My hobbies all involve movement of some sort especially wobbling hands put the kaibosh( not sure how to spell it)on things.
I have got to change all my hobbies now which I have been doing for 50 years or so.
Old ladies have to help me now.At least I am still alive-just.
I have just had almost 2wks 'sofa sitting'. Today, fingers crossed, it looks as though
things are looking up! I actually showed some interest in putting the washing machine
on, and vacuuming, although no where near speedy! I had to put my reading glasses
on to sort the clothes, so frustrating!!
Frustration is never ending. I know we have to devise another way of doing things,
in fact think ourselves lucky if we can still tackle things we want to do. But, when
you're having a 'down time', this isn't easy to bear in mind.
During the 'sofa sitting', I just switched off completely, was completely immobile, I
simply couldn't galvanise myself to do anything.
But, moan over, things to do!
Best wishes
Beryl
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