missing life before ataxia

[cherry311014]

Hi,

I really miss the old me before I had ataxia. Ataxia took so much away from me and no one understands how hard it is not being able to do so many things

Does anyone else ever feel like this?

Thank you

[Ostap]

Always. Facing a new reality is difficult, if not impossible to accept. For me anyway!

[glenandgerry]

I'm so sorry you have such an awful disease at such a young age. I can't imagine how it must be for you. I don't have Ataxia - my husband has Parkinson's. He was diagnosed nearly 20 years ago and now has Parkinson's Dementia so my circumstances are very different to yours but difficult nonetheless.I wish you all the best for the future. Stay positive. Hopefully you'll find something (either supplemental, physical, mental or medical) that will help with management of your condition.

[Bearbonny]

really feel for all Ataxia sufferers my son was diagnosed in 2012 I know how much life it has taken from him, but keep going and find other things you can do and try to keep positive, I know this is easier said than done. Keep strong.

[PatsyIpswich]

Yes, I'm sure all of those here who have ataxia, have felt this way. I've had counselling CBT.. which helped me. I still feel resentful especially losing control and unable to be spontaneous. It's good to share feelings with others who do understand. X

[pinjem]

Yes, just had another ability limiting problem diagnosed and told (very nicely) I have to make the best of it. I do make the best of 'it' that I can and it took about 2-3 years to 'settle' into knowing what I can still do with ataxia and enjoy what I can. It's only 3 days since I found out I will have to stop doing several more things, I'm expecting to find lesser substitutes to keep me interested but it takes time to process, just as it did several years ago. Time will help but also help from other people, take what you can. Initially I found gentle and infrequent support from someone with MS, then someone else with Lyme's disease really grounded me nicely. Also a few hypnotherapy sessions. I was given a meditation tape, that 'gave me a break' from my perceived reality and grounded me again, a huge help to me. Contact Ataxia UK by phone for help/advice? They are wonderful. xx

[Jellybean75]

it's very hard trying not to get angry/upset looking back at things you used to be able to do. Stay focused on things you are still able to do. For me its card making and scrapbooking and I joined local groups and meet up with others who have the same interest. Plus my indoor exercise bike which takes me on virtual bike rides all over the world. Stay positive, lots here who understand what you're going through and always here to help xx

[paul456]

Hi Cherry

I have scr 6 Ataxia so I know what you are feeling I had I real active outdoor life in the old me but you have to accept the new you which is very hard and make a life with the new you in same way you did with the old you its just a different you. It has advantages every time I’m asked to do any work I’m having a bad day 😊 I’ve learned to do all sorts of things just different to what I used to do. Never give up.

Stay strong my friend and stay with this website.

[Sea_]

YES it’s very frustrating sometimes and requires so much more strength and effort doesn’t it

Thinking of ways to still do some of the things that give me joy and having a plan for every day helps me

Thank you for sharing it’s certainly challenging

Hopefully the better weather brings us outside more and makes things better somehow

Keep smiling 🤗💕

[Rezzy3]

I was diagnosed at 51 and thought I was too young to get this. Just turned 58 yesterday. I rode the bike to the beach, jumped in a cold rough ocean and fell walking out of the water. I was laughing. A couple passing by asked if I needed help and I replied “no, but thank you. I wanted to see the sand up close”

It’s all about how you look at things. You’ll go through the stages of grief and then decide if you can accept it or not. At first all I kept asking is why me. Now I just say why NOT me!

I’ve been able to inspire a few people to get up and do things they never could like lose weight, play an instrument or go fishing.

Don’t look back, don’t look ahead. Find your purpose and Live in this moment.

They say youth is wasted on the young but maybe you’re the one that will give us old timers hope.

[Velocepede]

Hi Cherry - I totally get it and so too do the many others on this website who have had their lives massively changed by having an ataxia diagnosis. The trouble is with it being a rare disease almost noone you come across locally has ever heard of it. So this makes you feel very alone. This website has massively helped me with realising I am not alone , the feelings of loss grief and frustration and sadness coming to terms with a progressive condition are a very natural response , but try to keep positive by finding other activities or other ways of doing things. You do have to be upfront with people but generally once people know what your difficulties are they are very understanding. I joined a craft group shortly after I was diagnosed 8 years ago. It was the best thing I could have done as I met a small group of people who showed great understanding and patience and I look forward to meeting up every week though mostly for a chat and coffee. After a very long two year wait I have just started therapy with neuropsychologist to talk over those very issues of feeling I have lost my identity somehow as I am no longer the person I was. I can no longer even sign my name . Very little losses can seem so significant., but as you will see people do cope and adapt . On a good day I want to be one of those people but I agree on a bad day it is not so easy to be positive. Stay strong Cherry . Kate xx

[penelope2]

Hi, yes we are all different, have different ataxia symptoms but we all miss aspects of our life as it used to be. At family gatherings I find my speech really effects me taking part and being what I really am. Have stopped driving now so no longer am independent, another blow, the list goes on. Personally I feel angry with the NHS, I think they are letting us down. At my second Neuro physio session some years ago was told they could not help me and was discharged. The negative feelings I have turned into research into ataxia not only helping myself but others too. Find what floats your boat and what fulfils you. It is not the answer but it sure helps.

The Ataxia Helpline is very good to talk to.

Good luck.

[7151 in reply to penelope2]

Oh god i count my blessing i can still drive but no longer go boming up motorways ..x

[KiwiBob]

Hi, I am in the same boat. I have been able to get one thing back. I was a biker now I use a trike.

[Pjpuk]

I really miss not being able to walk right or take my grandkids to park it’s a horrible thing to have Siri on my phone does not understand what I’m saying does anyone know if my ataxia could have triggered when I fell and dislocated my shoulder and fractured my socket I was fine before that my bad arm that I dislocated I can’t even hold a cup of tea without it spilling it i walk like a drunk man and have speech problems with ataxia

[7151]

Hi i see your only 19! Yeh very difficult for you ..i m 73 and realised my Antakia probely starter un noticed 20 years ago ..off cours its got worse .i leared à Lot about it probablement more than my GP ..éventuellement got followed by à neurologue ..that took years but she is gréât ..physio is thé only thing that has helped i was on a waiting liste for months ..i go too à wonderful clinique that is all set up for Antakia problems ..keep strong dont let it béat you ..take care

[wobblybee]

Hi Cherry🙂 It would be good for you to be able to have contact with others of a similar age.

Log onto ..ataxia.org.uk….and search for 16-30 group

And linked to the National Ataxia Foundation..

Under 30 Years Old with Ataxia Support Group

You must have Ataxia yourself and be ages 16-30 to join this group. Parents/Spouses/Friends of people with Ataxia are not permitted.

Facebook Group: Under 30 With Ataxia

ataxia.org/support-groups/

[Ukalimcn]

hi cherry, I was diagnosed at 50, my brother 48 but he started to have issues at 18. I totally understand how you are feeling especially being so young but all we can do is try and stay positive, exercise and one day , there may be a cure🤞.

Eyes are for looking forward, no matter how hard it is ( and sure it is) , try and adapt to the new you and go for it, laughter is the best medicine, stay positive darling and best wishes, everybody on here has it but sadly some are worse than others, hopefully you are not too bad, chat on here when ever you want. Sending big hugs

[Athywhite]

Hi Cherry, I was diagnosed with Ataxia and lung cancer in 2019, i got the all clear from the cancer aftyer 2 years of chemo but there is nothing that can shift Ataxia, I absolutely hate it, it has stopped me doing all the things I loved and took for granted, the worst day of my life was when I had to sell my motor bike, then again I am lucky in some respects, I still work (2 days a week in the office and 3 days working from home) I still go to home games to watch my team and go to my local once a week for a couple of beers, I couldn't do it without the help I get from family, friends and colleagues, I retire next year as I will be 66,

[Piero]

Very much so. Even with this horrid condition however its possible to trawl happiness and pleasure from life. Valuing and cherishing your friends and your family takes one a long way down that road. Try to keep happy.