I have always been a fairly quiet person, prefering to listen and jump in with the odd witty comment during conversation.

Since being diagnosed I now live alone and work in a fairly quiet enviroment.

I find that it is very hard to join in with conversations these days as I find that conversation is usually to fast for me to contribute and obviousley I'm fairly self conscious.

Is this normal for someone like me that was diagnosed in 2007 but had some symptons for at least 5 years before that.

Hope this makes sense and would welcome any replies.

Sounds like me Martin.. that's why I love these forums and facebook and Streetlife etc. I can 'jump in' as much as I like LOL.

What a blessing the internet is and how thankful am I that I learned to type when I was 14 years old.

I find it a real challenge to get myself out of the front door on my own let alone socialise. However, I do run local support group. Do you attend a local support group?


Martin, I dont know about other Ataxia’s but you just described how I feel when in conversations and I am nervous. A conversation can take place and it could take me up to 3 weeks for me to truly know my answer.
There are many times when I feel comfortable enough to think clearly, the older I get, and educate myself on the internet, the more confident I feel, that in turn has made it easier to talk.
Years ago I would have never attempted even this forum.

Hi Martin!
I went through a period when slurring and gathering my thoughts was a an issue
for me. Joining in conversations was next to impossible. Other people seemed
to be able to talk so fast I had trouble even following conversations, I couldn’t
anticipate when there would be a break so I could join in.

My daughter got married last year, at that time I dreaded the wedding and having
to make small talk with people didn’t know. I swayed around the dance floor all
night so I didn’t have to speak to anyone! I hadn’t had a drink but Ataxia helped
with the swaying and I blended in! xB

I used to be noisy but now with Ataxia I'm quiet.I think it's for the best.Quality now rather than the clanging cymbal.

Dear Martin, Very timely for me that you've mentioned this, as I went out to dinner last evening with two of my girlfriends. They know I have ataxia, and slur my speech. I've become a VERY good listener, and ask a lot of questions. My grandpa always said, if you're doing all the talking, you never learn anything...,ha! Words of wisdom for sure! They also know that if they don't understand what I've said, it's OK to ask me to repeat myself, as I've told them. I feel more comfortable talking with family and friends, who know me well, as opposed to people who don't, although I have no problem telling people I have a neurological disease that causes me to slur my speech. I also say, just ask if you don't understand me and I'll repeat myself. Brain fog can be a problem for me in following conversations, plus trying to talk is tiring. So, as I've said before, I'm a good listener! Works for me..., ;o)

I can understand everything that is being said here. I too have problems talking in small groups of people, although part of my difficulty us because I am totally deaf in one ear. I am interested in the fact that it can take up to five years to be diagnosed. I suspect that I have had a very mild problem most of my life. It still is very mild but I am beginning to notice it more.

I must have ataxia then

Dear Bruce, I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (unknown cause), although thinking back, I had small symptoms starting several years before. When I was diagnosed (by a team of neurologists), it was through a process of elimination, as many neurological diseases/reasons can cause the symptoms I was experiencing. I had an MRI, which showed atrophy of my cerebellum, a nerve/muscle test (don't remember the medical term for it) and lot's of blood tests, as well as visual observation tests. The neurologists were looking for MS, Parkinsons Disease, Myothena Gravis, a brain tumor, a stroke, lack of certain vitamins, etc. I was diagnosed very quickly, within days, not years. Anyway I have my ataxia symptoms 24/7 and it is progressive, although I have no idea why. It is what it is..., ;o)

Hi Martin - I’m not so much an extrovert, as much as I used to be anyway; actually, I don’t know if I’m technically considered an extrovert or introvert. Either way, whatever I am, I’m okay with it, although this is quite a change for some (not that others’ opinions should really be a factor).

Not that I was ever a loud person, but I tend to express my feelings in other ways than just verbal now - and actually have pretty much always been like that - whether performing music, dance, drawing, etc. Now, for example, writing - I am still able to write; I find it enjoyable; it cleans out the muck in my head and allows space for new thoughts; etc.

Although I think that it’s still good to utilize your vocal cords and your social skills (if you don’t use it, you lose it thought process), I find it much more enjoyable to have a “conversation” via writing, where there’s limited disconnect/people can understand what I “say” - as to when I’m talking/not heard/slurred, slow, or weak speech.

It happens to me sometimes where it’s hard to follow conversation when people say more than one sentence in a row. Sometimes I have a hard time getting out what I’m trying to say as well. I’m pretty sure this is from ataxia, it could be possible there is some signal delays from the cerebellum causing this problem. I have really bad short term memory, probably from ataxia as well and I think that ties in with the communication problems we face. I have told some friends and family about this and most are understating and give me the chance to process what has been conversed before filling my head with more information… I joke sometimes and I will say “hold on I’m still uploading what you said into my hard drive”

Good one, Adam. I’ve got to remember that. Like Adam, I do joke about it, when I feel like it. Unlike you, Bruce, I’m an extrovert. It has to be SO hard for you. Besides hearing in only one ear - a result of my first acoustic neuroma brain surgery, 32 years ago - I have mild cognitive impairment, slur, stumble (even with a walker), and a few other things. It’s made me uncharacteristically self-conscious, depressed, etc. I was dx’d in 2009. Please know that while some things will plateau, even the progressive Cerebellar type, as I have, will just become part of you over time. That’ll give you some space to just be yourself, with all the elements Ataxia brings. Be well, Bruce, the good listener, as most quiet people are!

Skeeter and various other devices (computer, tablet) are my companions in solitude. I'm still aware of the loss of coordination (speech, gait, hands), but they aren't. It can be easier to be in the company of inanimate objects. I don't need to give them any thought or consideration. Ironic that that's important to me, given that no one in my life makes any demands on my time.

I've come to differentiate peaceful solitude from lonely isolation–I don't think I grasped the difference when I was young. I always thought the more people around, the better–even as a shy child. I still prefer being with people and enjoy social occasions. My important peeps know about my Ataxia and don't care. I'm grateful for that. But, I don't foresee a time when I don't think about how my struggles appear to others, however close they are. In solitude, I can choose to not care.

Solitude may afford me the opportunity to figure things out on my own but, some day it's going to backfire on me. Family and friends always struggle with offering just the right amount of help–too little, too much, too early, too late? I'm often the one to get it wrong. I remember my children, hearing me fall out in the garage, trying to decide whether to ask if I needed help. I'd always said, "Trust me. If I need help, I'll ask." They could hear me on one side of the door and I could hear them. I should have just told them I was OK. Elizabeth gave in, checked that I was conscious, intact, and then went back in the house. Sometimes you just have to say, "Oh, to hell with it," and do what you think is best, no matter what a person with disabilities says. Life's too short to spend worrying about emotion when the physical is more urgent.

One morning, I met my friends for our customary breakfast club. Afterward, Jackie walked me to my car and reluctantly left me to get into my car and drive home. Tripping over a sidewalk crack, I promptly fell head over rollator onto my face and into the street. After ascertaining that nothing was broken and I had all my teeth, my next thought was, "Thank God there's no one around!" That sounds a bit self–destructive and if indeed I had hurt myself, I would have been grateful for the help. But, I was able to get in the car and drive home, thinking about how I was going to explain my face. Aside from the facial abrasions, I made Angelina Jolie look thin-lipped. My vanity needed to be put aside for awhile.

It's hard to deal with another personality change–the increase in “touchiness”. I was always known for not being sensitive (as opposed to insensitive). I've noticed that sensitivity increases as solitude decreases. On occasion, I have to give myself the surreptitious "timeout". If you are Ataxic, you’re also assumed to be unhealthy, demented or deaf (prior posts). I have to make a special effort not to sarcastically snap, "Thanks for the tip!", my sister-in-law's "Ooh–ooh, let me write that down" or my personal favorite, "Gee, I never thought of that". I'd like to say I don't, but I do–often. After all, I am my mother's daughter and she was such a smart ass. Sometimes, I feel like I don’t have the same “freedom to fail” that other people have. Not that I want to...break a glass, fall, forget, etc...but I’d like to at least be able to without the event being attributable to Ataxia, even though it probably is.

Although I've always been easy-going and friendly, I find I need to be more thoughtful toward that end now. I do want family and friends to look forward to being around me, rather than dreading the encounters. One challenge is convincing people that leaving me home in solitude is not punitive, without seeming to be reclusive or becoming reclusive. Skeeter has made a major improvement, as I have a way to venture out more. But, I still love quiet solitude and have learned to enjoy my own company (never thought that would happen).

I am, by nature, a nice person, but Ataxia has caused me to be an occasional stinker. I ran into a former co-worker in the grocery store last week. Fortunately, I had makeup on, so when she (trying to be gracious) said, "Tammy! You look good!" I took a deep breath, paused, and said "Thanks" instead of "How the @#*& should I look?" When I got home–timeout! All I can rely on is that I'm not known for being a stinker. When I am, I hope the unwitting victim remembers that.

The lesson: “What a lovely surprise to discover how un-lonely being alone can be.”–Ellen Burstyn

"Carry a cellphone"–Tammy Schuman

Speaking in public is difficult but if you are full of confidence and love trying after getting failure then you can speak anytime at any place with your own style.some will judge , some will make fun.its their stupidity.dont mind.our job is to speak more and more :slight_smile:

Hi Patsy

Thanks for your reply, unfortunately my nearest support group aproximately 6 miles, was disovolved as the lady that ran it passed away. The nearest after that is 25 miles but again I discovered it is temporarily disbanded. I am at a bit of a loss but thankfully we have this great website which has been a huge help to me.
Patsy said:

Sounds like me Martin.. that's why I love these forums and facebook and Streetlife etc. I can 'jump in' as much as I like LOL.

What a blessing the internet is and how thankful am I that I learned to type when I was 14 years old.

I find it a real challenge to get myself out of the front door on my own let alone socialise. However, I do run local support group. Do you attend a local support group?


I learned something today from this conversation. I have a little difficulty following some conversation now too (especially in large groups) but didn't associate that problem with ataxia.

I've always been more of a listener than a talker (I'm an introvert) so it hasn't been too much of an adjustment however it can get frustrating when you get lost in some conversations because I seem to have missed something.

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It's nice to be a quiet person

I am an extrovert in my head but Ataxia has made me quiet.

Hi again Martin - I think that listening is a great and rare skill. Things might change, and however this change looks, it can be seen as a strength - new or continued.

Also, I came acrossed this information on ambivents - that most of us use both sides of our brains: