Has anybody with Ataxia got anger/bitterness issues?
anger: Has anybody with Ataxia got anger... - Ataxia UK
anger
Written by
klazien
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12 Replies
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Hi i think we have to get over it.Yes of course i was angrey but soon realised there are other illness far worse deap breaths and if nessasary see à psychologue ! Xx
It isn’t unusual to experience fluctuations in coping with emotion ..when diagnosed with ataxia.
I experience this myself..generally I’m a placid easy going person but…every so often I feel I have little to no control over anger, and this can erupt over the simplest of situations. Thankfully this doesn’t last too long …but it exhausts me.
I'm Beth's mum and carer. Beth's SCA is quite advanced and severe and she has mood disturbance as part of it. She (and I) can get angry at the ataxia and the degeneration, anger may not change anything BUT I think it's a very human part of the grief process and I think it's healthy to be able to recognise the feeling. Feelings themselves aren't wrong tho what we do with them can be, it's worth seeking help if it's a long term issue or causing you to do things you regret. Beth's GP has said she is open to giving Beth antidepressants if her mood gets particularly low, I've been trying to hold off until she's 30 ( she's 28 just now) but I hope I'm responsive to her needs when the time comes. If you Google ataxia and mood disturbance you will get some info. Take care, Jennie
The National Ataxia Foundation has a FAQ sheet entitled 'Frequently asked questions about cognition and emotion in cerebellar disorders'
Yes but only for a short time.. no point in letting it control me. Find something to laugh at and distract yourself. Life's too short xx
Yes I get bitter, (you've caught me at the right time). I used to physically be very active also had driven for over 40yrs and now rely upon my mobility scooter coupled with decent weather to even get outside. However my bitterness usually subsides after a day or two especially when thinking of others that are worse off.
Thank you for your answers. Living a very active live for the first 60 years of my live Ataxia free, was great and I feel sorry for those who started much earlier.
Knowing that it is incurable and progressive is ok for people my age but not for younger people.
I don’t feel angry/bitter but was told by my family that I am.
In the beginning after my diagnosis in 2005 I had problems with anxiety so via a psychiater had tablets for that for a very short time only.
I cannot walk anymore, talk only with difficulty and I am also almost blind (a separate issue) so that does not help.
But having a very supportive husband does. Plus having books and newspapers online with the ability to enlarge fonds.
It is weird that so many people think that anybody with a disability has only one disability. Also that a physical disability is the same as having as well a mental disability.
I don't think there's a right or wrong way to do this, everyone is different. I've read a lot about emotions and emotional regulation and some of it is within our control and some of it isn't and I guess the trick is to know when you need help and get it. It's not wrong to feel any emotion, it's what you do with it that matters. Take care x
From what I understand, the cerebellum is the part of our brain that controls emotions so as it atrophies, we will experience fits of anger. I myself get so frustrated that I yell all sorts of expletives at the top of my lungs. Good thing it doesn't last long and that I live alone. 
Best.
I often get frustrated and think "why me?" but it soon passes. I try to keep positive cause I don't want it to 'take over'. I'm still in control, albeit shakily lol.
I'm relatively young (in my mid 50's & was diagnosed in my 30's). I feel like I should be able to do more but unfortunately it's not meant to be.
Sometimes I even laugh at some of the things I do. I think I feel grateful for the things I have and can do, cause there are a lot of people worse off.
I used to help out at a nursing home & saw some awful things that people endured. Differing ages too.
Yes I can't walk (which for me is one of the hardest things to cope with, especially when I see people not struggling & just taking it for granted), my speech is awful, I struggle eating & drinking, I have nystagmus & other problems too but I try not to let them get me down. It's no wonder I get frustrated at times but I can't change anything, so...
People who have ataxia deal with lots of issues but we cope cause what choice do we have?
Sorry for rambling.
You need to see a GP to help direct you to the appropriate mental health professional. I have used counselling and meds for many years to smooth out my life caused by the disabilities having Ataxia
I took part in a study by Beyond Coealic, a US organisation at Sheffield ataxia clinic for cognition and the impact the brain or in our case the cerebellum not working properly has on mood. Doctors know the effects of a long term chronic and progressive illness has on an individual but unfortunately although we all should have access to talking therapists, in reality this doesn't happen.
Was told at the time of the test when people are asked how ataxia affected their mood they often said it was like grieving. The loss of their life of how it used to be, things they used to be able to do, it's no wonder with ataxia when it can be such a struggle that it impacts our mental health.
There is also an aspect of it physically and chemically affecting the brain and low mood.
So yes we all have anger, get irritable, feel sad, have moments of loss, anxiety for the future etc. Know what works for us, music, deep breathing, a good film all help me.
Be kind to ourselves we have a lot to deal with.
