How do you manage to stay positive when you have... - Ataxia UK

Ataxia UK
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How do you manage to stay positive when you have been told you have a progressive disability?

My first time on this page, I have got Cerebellar ataxia and have been diagnosed for 8 months now. I would like to chat to anyone who has got anything similar. I will respond to any messages.

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Hi Baby Girl123

Not very easy to answer this question but when you feel low try to think of happy positive things and obviously I don,t know your situation bbut in the main we are not in great pain (i hope) certainly writing out your worries and thoughts can help and actually getting in touch with someone in your area (where do you live?) is good all the best Ted

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hi,i was diagnosed in 2005 with late onset c/a and was of course told it was progressive ,but as all things the more we focus on it the worse it seems so try and think on the terms of i have c/a but it hasnt got me and you will come to terms with it and after a while you will hardly notice ie out of sight out of mind ,one thing i did after the first yr of feeling sorry for myself i bought a dog molly so she is now my focus so good luck and i hope this helps, mal

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Hi as TED says every case is diferant but if you gave a bit more information about yourself (age interests etc) I am sure someone who has something in comon with you will contact you.

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Hello Babygirl123,

I don't think anyone has the answer, whatever works for you... I'm not being very helpful am I? Smile as much as possible, accept your condition and that it will always be with you and will so 'use it or lose it', push your body to the limit but also listen to your body it will tell you when it's had enough! Get some good neurophysiotherapy and make sure you continue the exercises at home! The brain will always take the easy way unless you keep reminding it which muscels you 'should' be using! It's not easy to stay positive all the time we all have the odd 'blip' here and there. I am learning not to 'beat myseelf up' about these times. they soon pass, this site has helped me to recognise that, there's always someone here :) Also, I hate the terms illness or disease, I am NOT sick! wel,l maybe in the Joey Essex way ;) (the older generation would say 'cool')

Ataxia is a challenge ... embrace it

Yes I have Ataxia but it will never have me!

Hugs, from Mel

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There is no positive. It's an illusion that dr.s, physio's, and certain patients repeat. Fact is, AC sucks and there is no choice but to somehow "accept" it. I have a relatively mild (not to me) case but everything is a nightmare and I think I am living in a bad dream. A shrink hardly helped; not sure he understood how hard it is to loose confidence about doing basic things.

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Yes Neta, I'm forced to agree with you, it does 'suck' :-)

However, today I'm feeling upbeat for some reason, the sun is

shining and it's comfortably warm :-)

I felt able to drive myself to do some shopping, no small thing,

this usually happens about once a month :-)

Staying positive is only possible if you're not laid low with

troubling symptoms. CA effects everybody differently, it's not

simply a case of mind over matter. If it were, we'd all be feeling

positive all the time :-) xBeryl

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somedays are better than others when I was diagnosed I found it hard as slowly I was losing my independance I try to accept it now and make the most of my good days I spend a lot of time on facebook either chatting to friends or playing games as sadly I dont get out much as have to use wheelchair for outside what type of sca do you have I have sca6 if you on face book and want to add me feel free

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I so feel for you. Like you I am recently diagnosed but have had symtoms for about 5 years. I sometimes feel that I am falling apart but know I have to stay positive as I live alone and need to keep working. I just decided to take each day as it comes. Today I am in Spain, up in the mountains where I have an old farmhouse. It gets more difficult to get here but I am determined to keep trying. Hey ho! The sun is shining and I managed a glass of sangria.

try and stay positive and keep in touch. There are some wonderful folk out there with lots of experience who make it feel like a club! Albeit a rather exclusive club!

exercise really helps me and I am trying hard to keep mobile. We are all different, but all have a common bond.

lots of love and good wishes to you,

Adnyl

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Because being negative and having a progressive ataxia is far worse than being positive and having ataxia. Maybe being positive with ataxia is impossible, but I try to stay positive in spite of it. I know that in the future my life is going to be different, but anybody's life can suddenly change, the only difference between me and anyone else is that I know it's going to happen. So I don't see why I should dwell on what's going to happen in the future any more than the average person.

Oh, and I definitely agree with doing as much exercise as you can. From experience, if you sit and stew and think "what's the point in doing anything?", you feel so much worse.

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hi babygirl123 I was diagnosed last march after a catastrophic stroke so have ca as my stroke was at the base of my scull. my head shakes I cannot use my left arm and can only get around the house I use wheelchair or scooter outside. like B I have had a good day today and managed to put some washing out. It is hard to stay day in day out but what is the alternative sit in a corner and rock back and forth, there is always someone worse, although it is hard to see where, good luck

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Well I don't like it when peole call it a disease or illness of the brain, I makes me a bit irate.

I usually smile at them and say

I"m "ingenium velox" and give

them a nice warm smile :-)

As for dealing with it. I have good days and bad days (more bad).

But I have a routine which works for me most days.

On the days it does not? Well, thta's anotherr day.

People have their own way of handlong it.

The thing is....not to vegitate and give up.

;-) ;-) ;-)

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WOW, I wasn't expecting all those replies. Thank you all, I do try to stay positive, sometimes its hard and I get feed up. Getting out isn't too difficult at the moment I get out almost every day.I can manage with a stick or I pull my mums shopping trolley (if I need any thing from the shops). I find it helpful because I lean on it in the shops. I am 46 and I live with my 14 year old son, who helps me do things when he's not being a moody teenager, but I still do a lot of things myself. Jobs around my home do get done, at a slow speed. I do a little voluntary job in a charity shop a couple of hours a week (when I can). I live in HULL, Where the F A cup will be coming back to with the TIGERS. HAHA! just supporting my home town. Well I will say thank you all once again for answering my question you have made me feel a bit more positive already. xx Marion

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Hi babygirl123

You might laugh but the tigers nearly made it. They must have frightened Arsenal when they scored two goals in 8 minutes.

You see there is lots to laugh and be proud about.

J

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Hi there Jomo50, Im not into footie, as such but I do watch Hull City when they play big matches. They did well and at least they got to the cup final. They were both winners in my eyes. The city of Hull is doing well in many different ways, things are looking good for us here in ull. So how are you? I hope you are well. Have a good day x

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Dear Babygirl123, A huge welcome to this site! I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause) eleven years ago, but realize I had small symptoms about eight years before. No one in my family, as far back as we know, has/had ataxia, except me. I was in denial the first few years, as I couldn't imagine anything being "wrong" with me, as I had always been so active, athletic and healthy. I started using a cane about four years ago, as I was stubborn and wanted to do everything myself (should have started using one sooner, as I had taken some pretty nasty falls...,ha!). My ataxia has progressed, albeit slowly. Every morning, when I wake up, I tell myself "this is going to be a good day". I can't control having ataxia, but I can control my attitude about it. Therefore, I choose to have a positive attitude! Oh, I do feel sad at times, cry, and have a little pity party, but those moods are short-lived, as I don't want to waste time wallowing! I exercise for strength and balance each day, as well as stretch, as my muscles get so tight. I live in the US in the State of Michigan. I'm thankful for this site. as well as the Living With Ataxia site in this country. There are wonderful people on them for support and understanding! We are not alone in our journey...,;o)

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Hi February, like u the cause of my ataxia is unknown. There is no family member with any sort of ataxia that I know of. I have had quite a few falls at home, nothing serious just a lot of broken things which I have dropped or fallen into. It is so frustrating knowing there are a lot of things I can't do any more. Things I will have to get use to not doing because I can't do them safely. My son is good he does things for me. I know I have to try and look on the bright side things could be worse. Talking to people on this site that are having the same sort of problems as me will help, im sure. :)

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Hello baby girl

Welcome to the club, keep smilng!

I agree it is sometimes hard to keep positive - CA is with us and seems is here to stay! I often ask myself why me as I have always been fit and healthy until about 8 years ago

I was diagnosed 5 years ago and I seem to have gone downhill quite quickly.

I am now wheelchair bound, but I find exercise and friends keep me going.

I try to exercise most days, I have a recumbent exercise bike which is good as I can't fall off. I also do exercises given by my physio and I also do 1-1 Pilates once a fortnight which is really good.

Fortunately I have a very supportive husband and good friends, who call in for tea/coffee - eve if they have to make it themselves!

I would say do as much as you can, and keep your social contacts, I have often been surprised at how helpful strangers can be.

Hang on in there - don't let it beat you

Hope you manage to find a way through it that suits you

Best wishes Mary

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Hi Mary, Nice to hear from you, It is strange how these disabilities can happen for no reason and why they happen, like you say you have always been healthy so have I.Some days I feel tired all the time and don't want to do anything, but I know that I have to, for my son if not for myself as there are lots of things he can't do yet (not properly anyway). I keep up with my exercises and walk to my mums or the local shops most days. I get tired if I walk too far. So at the moment I still see people

every day and I do have my son, when he's not at school If I didn't see anyone things would certainly be different. I will try to be more positive from now.

I have got something else to do with as well now, talk to people here on this site. When my son lets me on the laptop, lol. Take care. x Marion

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Hi Babygirl123

Yes it is terrible to hear the news that you have developed C,A. but by being on this site you can see there are many like you and although we may be a little slower than we use to be we are still able to do somethings.

I know it may be hard to stay positive, but many are even though some find this difficult.

I have had CA for over seven years now, but I have good friends which is important and have made many new friend through ataxia uk and health unlocked.

I must say that I agree with what memielou has told you .It might be hard now but it does become more acceptable.

Stick in there

J

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Hello babygirl123

I was diagnosed a few years ago and am very fortunate to be in the early stages. Mine is hereditary, from my dad, so have a pretty good idea what my future holds. When I was first diagnosed i kept the diagnosis a secret, didn't want anyone to know. I think I felt a range of emotions from guilt, anger, emptyness and sorrow. I had a number of sessions with a psychologist who helped me to get my head around the situation. I then started to share my diagnosis with friends and family which made life easier.

I find I have good days and not so good days - I try to live in the now! I am very lucky that I have a fantastic supportive husband. Be gentle with yourself, let yourself have an off day, tomorrow will be different.

I go to a personal trainer twice a week, we are working hard to build some good muscle tone which will help going forward. He is a great guy and when I can't do something he modifies the movement so that I can achieve the same result.

There are a lot of things I have always wanted to do, special places to visit, motorbikes to ride - I'm not going to wait for retirement to do these things trying very hard to squeeze it all in now! When I'm snoozing in the sunshine listening to my music I don't want to have any regrets.

Have a great day - here's a smile for me oxoxo

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Hi Marina63, Thank you for your reply,

I have come to terms with it a little more now. I do feel sorry for myself a lot and I have to carry on as best as I can. Its finding out that you have got something wrong with you and doctors don't even know why it has happened. Chatting to other people that are in similar situations has helped. x

Enjoy your day. x marion

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Dear babygirk123/Marion

Where are u now?

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Hi Babygirl

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Hi babygirl. I wasdiagnosed with ICA 3 years ago Despite now being able to do absolutely nothing, I learned to accept it and deal with it so make the most of what you can do now. In fact, always focus on what you can do and not what you can’t. I can no longer write or drive and there was no warning of progression but, hey, it could be far worse. And thank goodness for this group - helps you realise you are not alone! Keep smiling. 🤗

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