Is experiencing occasional periods of depression a normal reaction to having Ataxia?

I have noticed that sometimes, when I think a lot about my Ataxia a lot, I can become very depressed for varying periods of time. In reading many of the comments posted on this website, I get the impression that many people feel pretty depressed by their problems associated with their Ataxia. I don't know how many of you would agree with my observation. Maybe more importantly, do any of you believe that some people, who feel depressed about their Ataxia, might be wise to consider talking about it with a Mental Health Specialist? I am puzzled, and somewhat concerned, about all of the feelings of depression that I seem to be hearing on this site, but I cannot recall hearing anyone on here talk about getting some form of counseling, even if it is from a pastor or personal physician. Is my concern unwarranted?

20 Replies

  • Dear Jneilw51, Any chronic health condition can cause one to feel depressed. I was diagnosed eleven years ago with ataxia, but have been on a therapeutic dose of an anti-depressant for about 20 years (originally for another issue). I find it to be helpful, although I still have "down" moments. But they're short-lived, not like being clinically depressed. Several years ago I sought the help of a counselor to cope with my ataxia, which was very helpful! My best to you...,;o)

  • I saw one of the GPs at the practice last month who has not seen me for a while he immediately offered me counselling and antidepressants. at the moment I am managing OK without but I feel it is up to the patient when/if they decide to take antidepressants. I am now in a wheelchair but I focus on the positives as far as possible but some days it is hard as I can no longer do the things I used to do- play the violin. go for long walks etcI think each person reacts differently - I would rather not have ataxia but I have it so I have to get on with it and try to enjoy each day- listening to music, reading a good book or looking at programmes on TV. the thing that gets me down is the weight gain as I am not active any more and that really bugs me but no-one can suggest a good diet that would help me. any ideas on that would be helpful !!

    so we all keep going and think of doing one thing each day that gives us pleasure. make the most of every day love to you all Sylvia

  • Hi sylviagreenhalgh, weight gain is dis-stressful. I eat an egg on toast (pumpkin bread) with a sliver of cheese and lettuce for breakfast, lunch is a half a meat and salad sandwich, dinner is optional for me, if I do it it is steak and vegetables - sometimes I have Spaghetti bolongeise (comfort food) snacks for me are crackers with tomato or cheese. Larely I have fruit every other day. I haven't put on weight but I have lost tone :( I know that is not enough but I don't really move, much :( Yes I'm always starving :)

  • try raw foods

  • Hi Sylvia

    Seems we have a lot in common. I have been trying to get my head round this depression thing. In the past I had several bouts of depression and used the following methods to help;long walks in the countryside not available now due to Ataxia but for the past three years I have explored On my 2nd hand road scooter and it gave me something to focus on.

    I used to play viola and violin in an orchestra for 20 years as well as teaching music. Now I cannot play Or listen to music as suggested as I keep thinking of past occasions when I played such a piece. I escaped in the past by reading. Now this past time is difficult due to double vision. All my previous methods worked but I now feel thwarted.

    I have been in a wheelchair now for about two years and have gone from a size 12 to a 20 due to enforced inactivity necessitating a change of wardrobe.

    Depressing and expensive.

    I have come to the conclusion that those who survive this disease seem to have a positive focus.Have you found anything which has helped?

  • Hello jneil51w :) I'm sorry to hear you feel down at times. Living in a body "that just doesn't work like it did" is unbelievably depressing. Maybe it's just how someone interprets what people say - I take most of this site as valuable information - sometimes people, vent, that's cool, that's what they need. It's not shameful for someone to feel down and talk with people who are in, or been in a similar place. I see a clinical phsycologist as required and it does help. Other people say what an inspiration I am to them, and it makes me feel like a fraud, somedays, then I flee to this site, to read. Ataxia is a forever disease - I defy anyone to truly be "thrilled" about this, especially on a bad day. Your concern is a beautiful empathic observation, most people are truly sad, just at that moment, then after chatting, hopefully, feeling able to face another Ataxia day. By the way , what february said is very positive :)

  • Yes. I also feel sad about this. Is this depression?? Its very hard to be happy about this. My son keeps telling me to be positive. Is that possible? I saw a shrink (psychiatrist) and he concluded that I am too concerned about looks. Not sure I found that's useful or even true, XO N

  • This echoes my real concern for us Ataxians. A diagnosis of unremitting gloom is hard to take. However this doesn't have to be the case. Please visit my site and read about the diagnosis. There are some ways to mitigate the damage already done before we realise there is anything wrong. The key is activity of body and mind. No matter how bad we have got there is something we can do to get better. Not cured but functioning nearer to normal.

    I retired in March this year but spent the last 25 years as a psychotherapist and if anyone wants someone to talk to who a) understands the condition, and b) knows how to listen without telling you it's your imagination or not real then send me a message and I'll give you my number. The only cost is your phone bill.

    I'm just putting together my next post for my site on ways to improve balance.


  • Hi Nigel,you sent me your number but I do not know where can you send it to me again please as I would love to have a chat. 😊

  • I'll send it via a message to you on here.


  • I don't think that your concern is 'unwarranted' at all and I would say to anyone with ataxia: get help- from a counsellor, mental health specialist, priest, friend, family member- whenever you need this. We are all different. Sometimes, we feel 'positive' (Hate that word!); some days we feel resigned; some days we feel terrible. People often try to offer us logic, but this an unpredictable, illogical condition and on the bad days, we just need love. I feel that we need to accept the range of emotions that we face, without bearing our anger/sadness so that it is a burden to others. On my worst days, I go on YouTube and sing along to my favourite hymn- I am careful to put the headphones on! i also think that each one of us needs to feel proud of having come so far without having lost all dignity and sense of humour. I hate it when we are called 'brave', but, hey, respect to us all!

  • It's pretty normal feel depressed sometimes if you have a long-term condition. I have Ataxia and have had problems related to having very low self-worth sometimes. I did see a counsellor a few years ago and that helped a lot. I would suggest that anyone who has problems gets counselling, even if only for a short while. My mood can still vary a lot, but I feel more able to cope with it. I think to is important consider mental well-being - exercise helps, being involved and active, doing things you enjoy, trying not to be isolated; it all helps. Hope you feel better soon.

  • Hi jneil, I have gone through a period of depression for about 4 years. I now feel that I've come through that and accept my condition as it is at present. However if I think about things I can no longer do I still feel very sad.

    I s saw regularly a counsellor and I can contact her any time I need a session. This made a huge difference to me.

    I try to take pleasure in the smaller things in life. Like the beautiful colours of the trees at the mo, the sun on my face . . .

    I'm sure when my ataxia limits me even further I shall seek help from the counsellor again.

    It s very difficult to make the first step and ask for help but afterwards it's so much easier with someone to talk to whose not directly involved in your life.

  • I liken it to grieving. Like grieving about the loss of a person, one grieves over the loss of a different live and one's loss of abilities.

    I looked for grief counselling. They have that for people who have lost someone but not for anyone who has lost their physical ability, whether it is Ataxia or something else like the loss of sight or the loss of a limb.

    Grieving fades with time (except for occasional flashbacks) and one gets used to this different life. I don't mean it becomes less painful but it won't be foremost in one’s mind anymore.

    During this initial period anti-depressant and counselling might help.

    My Ataxia started 10 years ago and my own experience with counselling at that time was not so good. How can it help for an able bodied person to tell you that it will get better? You know that it never will and you don’t want to whine on about your hopeless life. I probably had the wrong psychiatrist. Anti depressants helped me for the first several years. They also helped with my bouts of anger and bitterness.

    Now I don't take anything anymore. I have gotten used to this new life and although all the things I used to love doing such as art work, horse riding and house renovation are over, I can still read and feel too tired for all the rest anyway.

    Also, according to what I have been reading on some other forums, things can get much worse. Hopefully that won't be for a long time yet.

  • Hi, yes I too have down days when I feel sad and frustrated that I can't do the things I used to - going out on my own, driving and going for walks with my husband. I am in a wheelchair now and it sometimes upsets me to see every one else walking. Fortunately I have a supportive and understanding husband though the ataxia has changed his life too. I do try to stay positive, my best thing is doing Pilatess once a fortnigght with a great guy who piggy backs me up and down to his 1st floor studio!

    I was also prescribed amitriptaline, originally for restless legs but when I came off it my mood dropped, so am back on it and mood hasiproed.

    Keep smiling


  • Hi jneilw51,

    As many people have said, it's completely to be expected that you will feel down/sad/depressed coming to terms with a lack of personal ability. The only thing that is different is the level of how it affects you, and what you can do to improve these affects.

    For some, a simple chat with a fellow sufferer may be enough. For others, talking to a professional counsellor is the only solution. And, in certain cases of depression, only a medical solution will work.

    Do what is right for you.

    Personally, but for the time being only perhaps, a simple chat will get me through "down" periods. I'm now trying to identify what, if anything, actually causes these sad days. They are usually self-inflicted by my own feelings of loss - of not being able to do certain things in the future, all of the things my peers can still do now. But I'm now also finding that these periods are usually triggered by a simple comment. Today, I passed a couple, and heard the guy say to the woman "[inauduble mumble]....stick" as they passed. This seems to have been enough.

    And as a result, here I am. Typing out all of this nonsense, on here, helps me. Knowing that it might help somebody, even if just slightly, helps me too. This helps me grow after being made to feel small.

    Iain :)

  • My husband has had counselling and will probably have some more very good

  • I have suffered with chronic depression for the last three years not long after being diagnosed and have had two 6 weeks admissions to the "loony bin" once after taking an overdose and once after very nearly taking one. I'm grieving for my life and angry that I've lost most of what I was. I'm sitting here now at stupid o'clock after just over 3 hours sleep and my "black dog" is steadily getting bigger. I've been on anti-depressants for nearly 4 years but every so often they just stop helping and it takes over. Motivation, interest etc is all gone and even knowing that I have a busy social calendar this month is filling me with dread and thinking of excuses to get out of it. I'm no longer the life and soul of the party, I'm the one watching everyone dancing and having fun whilst sitting in my wheelchair on the sidelines. Ataxia takes everything that you used to and want to be again. I hate it and everything about it. Life is crap with bloody Ataxia and there's no way back. I've had 2 nasty falls recently and the one before last frightened me so much I don't want to go out. I used to work with challenging people and I had to deal with aggressive behaviour and the likelihood of getting assaulted every day but now I'm afraid to step out of my front door. People are constantly staring at me and I feel bloody useless and guilty that people have to do things for me. My Hubbie is great but even he looks worn out even though he says he's not. What can I offer him ? Nothing, not even a decent sex life as Ataxia has taken that too. I'm in constant pain and today he had to cut my dinner up for me as my hands were hurting so much. Everything that I loved doing is an effort there's no positives to Ataxia, I don't want to just "get by and exist" I WANT TO LIVE MY LIFE AND BE NORMAL !!!!!!

    What's the point ??????

    Sorry, but it's all b******s. Nothing helps 😩😩😩😩😩

  • Bevvick, I hate to say this, but many of the feelings which you have described have come to dominate my outlook on life particularly in the past few years. I feel very guilty about that because, when I really look around myself, I see so many people who would have every right to feel way worse about their lives than I do about mine. Yet, many of them seem to be very happy. How am I different from them that I should feel worse about life than they do? I think that part of the difference could be that we can clearly remember just recently having a very happy life, so we can feel that we have suffered a huge loss in a relatively short amount of time. In fact, I can see the loss of so many opportunities for happiness in my life as causing me to have an entirely new, maybe not so happy, life. So, I am asking myself to try to adapt to leaving one type of life while trying to cope with creating an almost entirely new life. I think that I may be mourning the loss of having the type of life that I have had up until I started having symptoms of Ataxia. At the same time that I am feeling sorry about that loss, I have a fear of the kinds of challenges, and disappointments, that my new life might bring to me, and whether I can handle what comes my way. For me, the depression, I believe, comes from the fear I have that I might not be able to handle the challenges of my future without the security that my life used to give me. What I try to keep telling myself is that it is great to have happy memories of the past, but that my thoughts should be focused on how I can best adapt to my physical changes so that I can search for new things that I can plan to do to help me to enjoy today, and look forward to tomorrow. Because there are things about me that I am too close to really see, I have found it to be helpful to ask friends to help me to plan future activities. So, Bevvick, thanks for your thoughts because they helped me to get in touch with some of my feelings which, all too often, I try to ignore.

  • Hi jneilw51,

    It has been really good for me to read your post and all the replies about depression as I have mostly good days at the moment but occasionally I just have a really black day - as someone else mentioned it is just sparked by something. It has been something I have just tried to deal with as I am going through the menopause (I am 55) and I don't know what is what! I told my GP about my mild depression and he just gave me the number of the NHS Talking Therapy line. I phoned them and they are just not able to deal with someone who has been given a life changing diagnosis. I am having a nightmare with getting a physio appointment and an appointment at the ataxia clinic in Oxford, so I have given up for the moment as I am tired of all the hassle and wrong appointments that have come through. Last year I spoke to a psychoanalyst about something else and he said it's like dealing with grief, for your past life etc. So I will try and see a therapist when I feel a bit tougher and my ataxia support group say I need neuro physio as it addresses balance and other things affected by ataxia.

    I have to say I have mild severity at the moment so walk much as I can. My weekly yoga class is great. It definitely is also 'state-of-mind' as well as doing things (like walking) to create muscle memory. I have just bought some dumbells to us whilst watching TV as I know my arm muscles are wasting. It sucks to have ataxia!!

    Have you looked at the website 'walkingwithataxia'?

    Kind regards and wishing you the best,


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