I know there has been some discussion about this subject and there have been varied experiences of the above.Having been to another one today my query is this.
Can you think of any social things I can go to without speech,no mobility,intention tremors,no writing,sight impaired and no accurate label execpt Cerebellar Ataxia.
I am middle aged so would rather be in the disabled group rather than the elderly.
Also I am an intellectual with impaired motor skills.
I am not currently depresseed.
I don't think Cognitive Behaviour Therapy will work .
I am only concerned because I have Ataxia and am stuck in a constant bereavement cycle.
Psychologically I have more in common with those who have a degenerative label although I recognise there are different stages of Ataxia and not everyone is affected.
I feel I am losing skills every day.I don't want do gooders or young girls from psychology centres practising out theories on me.
Hi Marie.. you definitely dont belong with us old people .. especially those of us who have late onset and no slurred speech.
Despite having many things in common, psychologically, our outlook is very different. However, this group is really good for everyone so it's nice to see you posting and I hope you will get some response from others your age.
Another thing we have in common is being the wife with ataxia. We dont expect to be looked after but havent the energy to play the housewife role.
Not sure how to advise you, Marie. I am the one with the shrink and he has me talking about tough stuff from my past. Not sure that is the way to go or that it is even relevant. He thinks it is, and he also prescribes meds for me, which you might want to take as well. I am much less affected than you (so far). I think the best therapy for you is a one-on-one thing (is that what you are asking for??) where you can spill your heart and thoughts out even clumsily. It's probably beneficial to go there and try to vocalize. Maybe you have more functions than you know. You communicated your long question to this site, no? I also liked your last line. N
I don't know if this answer will apply to you but my wife and I (I'm the one with Ataxia) belong to an adult chorus in our community. This helps me with my speech. Hope this answer helps. Take care.
Dear Marie, Let me start by saying you are very brave! Ataxia is frustrating and challenging, and it's difficult to know where we belong. I know you have many limitations, physically, from what you've previously said on this site. I don't know what the answer is, as so little is known about ataxia and many people have never heard of it before. I am glad you're seeking help from a professional. How are you communicating your thoughts, as you've said many times your speech is severely affected? I can say we're all in the same boat, even though we have different types and degrees of ataxia. Glitter On Butterflies suggestion about an audio book club is a splendid idea! You're not alone in your journey! My best to you..., ;o)
I don't think about what I can do and not show my ataxiia (which it sounds like you are saying) rather I think of what I might enjoy and do it. I was diagnosed in 1988, stopped working in 1989 and started using a wheelchair in 1993.I have thick speech double vision, no eye-hand coordination, among other things all constantly progressing (a word I prefer over getting worse). Since being disabled a few of the things I have done : rode in a hot air balloon,dressed up as Santa Claus every, year doing parties etc., volunteered to ring the bell for the Salvation Army at Holiday Times, been politically active in many ways including helping to form a new chapter and attending demonstrations, have belonged to and remained active in a self-help group for many years,joined a motorcycle association and ride in a sideecar (I have not driven since 1989) got married in 1991 renewed my wedding vows in 2001. These are just a quick handful of the things I have done since being diagnosed. I don't know where you belong but I belong in the stream of life. I will not allow my ataxia to ruin my life I am now 52 years old and don't plan to stop living. If you'll forgive me your letter certainly does sound like you are depressed but the answer is NOT a shrink it IS to get out there and LIVE.I just spent 15 minutes correcting the spelling on this posts because my fingers don't work well but that doesn't mean don't do it it means work a little harder.
I loved your post! Honestly, it's perked me up no end! xB
tumbles83 said:
I don't think about what I can do and not show my ataxiia (which it sounds like you are saying) rather I think of what I might enjoy and do it. I was diagnosed in 1988, stopped working in 1989 and started using a wheelchair in 1993.I have thick speech double vision, no eye-hand coordination, among other things all constantly progressing (a word I prefer over getting worse). Since being disabled a few of the things I have done : rode in a hot air balloon,dressed up as Santa Claus every, year doing parties etc., volunteered to ring the bell for the Salvation Army at Holiday Times, been politically active in many ways including helping to form a new chapter and attending demonstrations, have belonged to and remained active in a self-help group for many years,joined a motorcycle association and ride in a sideecar (I have not driven since 1989) got married in 1991 renewed my wedding vows in 2001. These are just a quick handful of the things I have done since being diagnosed. I don't know where you belong but I belong in the stream of life. I will not allow my ataxia to ruin my life I am now 52 years old and don't plan to stop living. If you'll forgive me your letter certainly does sound like you are depressed but the answer is NOT a shrink it IS to get out there and LIVE.I just spent 15 minutes correcting the spelling on this posts because my fingers don't work well but that doesn't mean don't do it it means work a little harder.
Well said, I am just now getting used to this ataxia after brain surgery to remove MOST of a tumor.
Jerry
tumbles83 said:
I don't think about what I can do and not show my ataxiia (which it sounds like you are saying) rather I think of what I might enjoy and do it. I was diagnosed in 1988, stopped working in 1989 and started using a wheelchair in 1993.I have thick speech double vision, no eye-hand coordination, among other things all constantly progressing (a word I prefer over getting worse). Since being disabled a few of the things I have done : rode in a hot air balloon,dressed up as Santa Claus every, year doing parties etc., volunteered to ring the bell for the Salvation Army at Holiday Times, been politically active in many ways including helping to form a new chapter and attending demonstrations, have belonged to and remained active in a self-help group for many years,joined a motorcycle association and ride in a sideecar (I have not driven since 1989) got married in 1991 renewed my wedding vows in 2001. These are just a quick handful of the things I have done since being diagnosed. I don't know where you belong but I belong in the stream of life. I will not allow my ataxia to ruin my life I am now 52 years old and don't plan to stop living. If you'll forgive me your letter certainly does sound like you are depressed but the answer is NOT a shrink it IS to get out there and LIVE.I just spent 15 minutes correcting the spelling on this posts because my fingers don't work well but that doesn't mean don't do it it means work a little harder.
Well said, I am just now getting used to this ataxia after brain surgery to remove MOST of a tumor.
Jerry
tumbles83 said:
I don't think about what I can do and not show my ataxiia (which it sounds like you are saying) rather I think of what I might enjoy and do it. I was diagnosed in 1988, stopped working in 1989 and started using a wheelchair in 1993.I have thick speech double vision, no eye-hand coordination, among other things all constantly progressing (a word I prefer over getting worse). Since being disabled a few of the things I have done : rode in a hot air balloon,dressed up as Santa Claus every, year doing parties etc., volunteered to ring the bell for the Salvation Army at Holiday Times, been politically active in many ways including helping to form a new chapter and attending demonstrations, have belonged to and remained active in a self-help group for many years,joined a motorcycle association and ride in a sideecar (I have not driven since 1989) got married in 1991 renewed my wedding vows in 2001. These are just a quick handful of the things I have done since being diagnosed. I don't know where you belong but I belong in the stream of life. I will not allow my ataxia to ruin my life I am now 52 years old and don't plan to stop living. If you'll forgive me your letter certainly does sound like you are depressed but the answer is NOT a shrink it IS to get out there and LIVE.I just spent 15 minutes correcting the spelling on this posts because my fingers don't work well but that doesn't mean don't do it it means work a little harder.
I do admire your courage Tumbles.What a lot of things to achieve after diagnosis.It is all very inspiring.
For me I had the diagnosis about 6 years ago and limped on doing my old hobbies with adaptions.It is only this year that I have reached the end of the road and I have to do new things.
At the end of the conversation with this girl from the psychiactric services we touched on false guilt and Rules for Living.
I think firstly with others who have been diagnosed with a sporadic ataxia with no obvious cause feel as if we may somehow have coontributed and it is up to us to put it right.I have racked my brains to think how I may have made things worse.Did I drink too much,was I too stressed etc.Can I do anything to help.?? I go roound and round in circles.Does anyone else do this.? If it was a known disease you would accept and move on.
Similarly I have always done housewifely things.It is very strange for me having to hand over things I have done and have someone else doing things-there is a role reversal and I am having to get used to it.Although I have had Ataxia for about six years the impact has only been this year.
I do go out and about,am never bored or lonely but can't get my head round this speech thing.There is a big contrast between the old me and the new.It is like coming to terms with the person you have to be.This takes time and is a process.I wonder if anyone else is going through the same mixed up emotions?
I am concentrating on what I can do now.
I see myself as disabled not elderly.
I like the audio book idea.I do belong to a book club but feel a nuisance.
If a "Shrink" (Therapist) is too off putting that is understandable. However, you do need at least one person who is clear headed and can help you put things into perspective. I learned one very important thing that I want to share; Even the most intelligent person on the planet, be they a Physacist, Rocket Scientist, Brain Surgeon or judt a Street Sweeper, they all share one thing, we all share it - our emotions have an I.Q. of ZERO! When it comes to our feelings, they don't think things over - they just jump in full speed. You need someone who can help you find your way to be the Master of your emotions. I'm still working on it myself. It's kind of like perfection, a nice goal but you can never get there. Don'esn't mean we stop trying! Cheers and keep talking - the worst you can do is hold it all in.
I think we are all banging our head against a wall insofar as therapists are concerned. Believe me if the ataxia disappeared or lessened, we would need these therapists like a hole in th head. But in the meantime, that's what our society prescribes when it cannot provide hard solutions. We are told/taught to accept fate and these people, all very nice and well meaning, are the medium for such beliefs, I have one,. He is nice, ethical and reassuring. But fact is, though I have some interesting flaws in my personal history, which cause him to wince, I think it has nothing to do w ataxia. Neve rtherless, I go to him. It's an activity, a chance to talk (physically challenging) and it's a place I can share my fears so it's usefful. Not entirely sure about what you said. Mark Davidson said:
Dear Marie,
If a "Shrink" (Therapist) is too off putting that is understandable. However, you do need at least one person who is clear headed and can help you put things into perspective. I learned one very important thing that I want to share; Even the most intelligent person on the planet, be they a Physacist, Rocket Scientist, Brain Surgeon or judt a Street Sweeper, they all share one thing, we all share it - our emotions have an I.Q. of ZERO! When it comes to our feelings, they don't think things over - they just jump in full speed. You need someone who can help you find your way to be the Master of your emotions. I'm still working on it myself. It's kind of like perfection, a nice goal but you can never get there. Don'esn't mean we stop trying! Cheers and keep talking - the worst you can do is hold it all in.