Ataxia and depression

[chute1]

hello I am new here so I'm sorry to be sad. I have been living with cerebellar ataxia for over 20 years but have also had quite severe depression.my mental state is quite unstable at the moment, my Ataxia has always effected my speech so the depression has meant I've stopped talking through finding it so tiring.does this sound familiar to anyone?

[ddmagee1]

Yes, I have a partially paralyzed vocal chord that does make my speech a little shaky at times, if I talk very long. I have trouble swallowing sometimes, and my balance has caused me some bad falls etc. Living with the many symptoms and up and downs of Cerebellar Ataxia can be very challenging, to say the least. It is very easy to feel depressed when parts of one's body are not working right, and cause pain, fatigue, frustration etc. Having a good support group that one can count on to show at least a little understanding, is extremely important for me, when I feel depressed over my slowly deteriorating condition. Seeing doctor's a few times a year, where they clinically assess one's condition, with perhaps, seemingly, not much empathy, is not enough to help a depressed Ataxic person, in my opinion. Having a considerate and helping family, friends that stick with you, through thick and thin, and being in a support group of others, who suffer with the difficulties of living with Ataxia, can help one overcome the depression that often comes with chronic illness and dysfunction.

[Trinity48 in reply to ddmagee1]

Yes I totally agree with everything ddmagee1has posted,so well written-- I'm sure that's how we all feel especially when one has led such an active life and after many,many years of deterioration how does one look to the future?

[TWITTERING in reply to ddmagee1]

Sounds just like my son. I am so desperate to find help for him. We live in Chichester, and cannot find any one, or person,to support us,He is 41 and has limited access to the internet, also lives on his own,which is why I am contacting the group.His condition affects his legs and balance, and eye sight . How do you get support.

Thank you .

[stjamesangel]

I also have stopped talking and can't use the phone. I find this very distressing. I feel isolated and alone. I can't even use a pen, as I stopped being able to write last year, I am fed up apologising to couriers and delivery men. So your not alone, we are always here for you.

Angela

[tommi47]

Hi Chute 1,I think almost all of us have the same problem.

When I was told in Hospital by a junior Doctor he told me my speech would not get better

(no one could understand what I was saying ) I told him it will get better because I would talk and talk until it does.

Although my speech is far from perfect people can understand me.

I use diffrent words with the same meaning,talk a lot slower and over enforsise words that I struggled with,I could not say sixty six as an example.

I realy hope this helps and I can't spell ( enforsise ).

Best Wishes,

Tom.

[wildstyler in reply to tommi47]

Good for you Tom.

[tommi47 in reply to wildstyler]

Thank you wildster.

[Wobblymum]

I agree with everything you said. It is difficult to accept after you've had a very active life. How do you accept it and move on? It's good to know I'm not alone feeling like this however where do you go to meet people in the same situation, particularly when you can't talk? I have a very supportive family, I don't know what I'd do without them. I would hate to be on my own with this condition.

[wildstyler in reply to Wobblymum]

I must admit it would be difficult on my own,thankfully I'm not, I probably am more active now that I have retired. How do I accept it ? I find n d it best to realize that it can't be altered, so make the best of what you have, I have done London Marathon twice etc.so now when my running is pathetically slow I just remind myself that I don't want to do that distance again anyway.

[isabelalfaiate]

Hi Chute 1, I am sorry you feel depressed. I also suffer from ataxia but my speech is not affected so far. Don´t let depression get to you, I know it is hard but think of something positive that you still have. Try and change your focus from things you no longer can do to things you can still do. I never stop talking so that will also hit me hard, but I try not think about that. I live each day and in the present, to me the past is gone and the future has not come yet, worrying is not going to change anything but is going to depress me. I find it easy to type (I am a translator and have typed all my life) Find something you are good at and focus on that. I read a lot, knit, crochet and am even able to look after my eleven month old grandson. I am always happy and joking (even about myself) and that helps me. I hope you feel better and remember you have ataxia, ataxia does not have you.

Best wishes, Isabel

[february]

Dear Chute1, A HUGE welcome to this site! I'm so sorry you're feeling so sad, but I understand, as I've also been dealing with my ataxia for about 20 years also! I'm on an anti-deppressant, originally for a different reason and find it helpful for this condition now! Years ago, I talked with a therapist, as I was having a hard time dealing/accepting my ataxia! I was very active/athletic before this new "normal". I agree with others that having a support system/ talking to others with this condition who truly understand is helpful. Sometimes I get so frustrated with this, especially having to repeat what I'm trying to say, as I slur my speech so much! Also, writing/printing is such a challenge, as well as physically not being able to do things due to my lack of coordination, etc. No wonder we get so tired! Ataxia affects everything! But I refuse to let it define who I am as a person!I exercise (slowly...,ha!) for strength and balance and eat as healthy as poassible. Please know you're not "alone" in your journey! My best to you..., ;o)

[Litty]

It is hard and we all feel depressed at times. I have never had any talking therapy but my husband is a great believer and has found it useful. I think it is easy for us to forget the strain and pressure our loved ones are under too. He still sees a special neuropsycologist when he needs to and they really understand.

Ataxia is very cruel but we have to try and tell ourselves to be as cheerful as we can for our loved ones. Try to get outside once the weather gets warmer. Fresh air helps me. Physical exercise is good.

It is important to keep exercises your vocal chords (for instance I am trying to say this as I write, because I do not talk enough). When alone I listen to the radio and try to repeat people and TRYING to sing along to favourite songs is good. Thickeners in my drinks help.

Try to remember what you enjoyed doing in your spare time or a hobby and adapt it if difficult. You will be surprised what you can do still. For example I enjoy working with clay. Obviously I cannot use a potter’s wheel so I shape things using bubble wrap and use molds for shapes. I am hopeless at it but I have started colouring too. TRY to push yourself.

[chute1]

thankyou for all the supportive responses it's very helpful at this time, today u have tried to keep busy all day so I don't get low.i think it is one thing at a time.

[Guyb]

it sure sounds familiar it sounds just like me im Guy so if you wanna chat im always here or in sheffield halamshire

[wildstyler]

Ataxia is best dealt with by just getting on with life.

I was diagnosed with cerebellar ataxia (genetic) about 7years ago

I go to the gym three times a week and run three times a week

My speech is affected but I refer to the fact that my children never listened to me anyway, so now that they can't understand me it is no problem.

I am now 68 and refuse to have my lifestyle altered unduly.

[Hidden in reply to wildstyler]

Good for you wildstyler, don’t let anything get you down, you’re an inspiration, best wishes from Judd123.

[wildstyler]

What you are experiencing with your speech is normal.

Don't worry,

[stjamesangel]

Ataxia has robbed me of my speech, I don't talk or use the phone. Having a conversation is impossible because I get asked to repeat what I've said and I find it very distressing.

[ddmagee1]

Speech therapy may help. One would have to discuss this, with their neurologist and/or GP, because each person is a little different, depending upon type and progression of Ataxia. Because the neurosurgeon and neurologist told me that I have a partially paralyzed vocal chord, and I get a bit hoarse and have a shaky voice at times, I have found breathing and enunciation exercises helpful.

[Guyb]

i have the same problems speech,gait,balance,grip,breathing ifind the more i try to explain to people the worse it gets and people sometimes to talk to my partner like im not ther or im a dog like oh heslooking well or how is he i think more needs to be done to educate people

[Jobbo16]

I suffering from around 2 with depression with my ataxia affecting badly. I to suffer from speech I needly had ticket from Police until I slowly explained my speech it horrible suffering from depression as people don't understand