You're so right David and good for you! I believe doing other things (if you're physically able, of course) gives life purpose and takes your mind off yourself (which is healthy not only physically, but emotionally as well)! Ataxia doesn't define who you are as a person! Best wishes for 2013 to all!!! ;o)
OH MY GOSH!!! You guys are so great! I will take all of what you have sent to me and consider everything. Thank you so much for the support! You're the best! :) :)
One more thought on this...Saying you are unable to work now isn't a life sentence. Perhaps in a year or two you'll be well enough to work again!!
Being recently disabled this discussion is speaking to me also. Happy New Year !!!
Sue said:
OH MY GOSH!!! You guys are so great! I will take all of what you have sent to me and consider everything. Thank you so much for the support! You're the best! :) :)
Happy New Year to all! ;o)
FYI...,I take a Vitamin B12 tablet each day (started a couple weeks ago), and find it's giving me more energy and clearer thinking. It's 1000 mg time released tablet. Of course, always check with your doctor before taking anything! ;o)
Hello.
Just wanted to follow up on my original post...I finally got the answer to my question about how to decide when it is time to retire from work. I made the decision in late March when it finally became very obvious to me that I could no longer work as it was not good for me, physically or mentally, to continue to struggle to just "make it through the day." I have only been off from work for a couple of weeks so far. I'm having nightmares and waking up panicked about quitting my job and thinking maybe I could have toughed it out a bit longer. I just have to have a conversation with myself and remind myself why I made the decision and that it is what is best for me and my wonderful husband.
Thanks, again, for all of your wonderful responses. It definitely helped me through one of the many bumps I know that I will have along the way.
Sue
Arvada, CO
I only 45 years old and can not work because I don’t have control of my arms or hands and I can not walk. Wish I could work.
Work as long as you are happily able 
I don't know how old you are but even a fit person would find your job hard to do. Don't be so unkind to yourself, there are loads of things you can get immersed in if you do quit, and I think you should. I have recently been diagnosed and was advised immediately to give up work, because of the associated stress. I am nowhere near as bad as you, but the relief of not having to work has made my life so much easier, I can get up when I want, do things when I want, do nothing when I want, and although I am over 60 and have a pension, I am coping with the help of my husband. It sounds as though you are alone, think it through and see if you can manage financially, with benefits and assistance. It sounds to me as if you are fighting a huge battle and will get worse and worse, don't do this to yourself, you deserve better especially as life is hard for all us ataxia sufferers. Take care and think about it.
Hi Sue, I was a social worker for the State for 28 years. I was diagnosed with ataxia 10 years ago, but was approved for a medical retirement 7 years ago. I was on LTD (long-term disability) until my medical retirement was approved, about 3 months. LTD said I then HAD to apply for Social Security Disability. A company (referred by LTD) applied for me, I was approved, and the rest is history. Anyway, I worked with my ataxia for 3 years after diagnosis. When I was key-boarding (on the computer) with only my index fingers, writing things over and over again to make them legible and slurring my speech, to the point where I thought my clients would think I was two sheets to the wind (intoxicated, especially when fatigued or stressed), I knew it was time to throw in the towel. I had very high standards, and when I couldn't do my job to my satisfaction, I knew it was time. Hope this helps...,;o)
Hi Again Sue, Guess my reply is a mute point, as you made the decision to retire! Good for you! Have faith that you made the right decision! I wish you nothing but the best...,;o)
Hi Sue, I am so glad you decided not to go back to your job. You will feel much better about yourself with you leaving your job. Instead of them letting you go. YOU made the decision. Not them. You have a wonderful husband to help out! Your not alone. Enjoy and do things for yourself!
I have what the doctors consider to be "mild" ataxia with no eye nystagmus but quit working a while ago and got a small disability pension from the government. I was a very active journalist. My shrink says I am just lazy and that I should work but I can't imagine doing so with all the limitations at hand. Nevertheless, my advice is to stay active, whatever you do. I became a Library Fellow at a nearby library and wrote a serious book published by a university press. Though I appear fine for now, I tend to the bathroom and tea room less; ditto chatting,. But it's a library so silence is valued. I can't imagine interviewing people and scribbling notes as I once did. Good luck!
I would say to you that it sounds as if the time is really near for you. Depending if you have seen a doctor for something that would improve your situation. Are the people questioning you at work. Many did question me. I was falling asleep and hitting walls when I would walk. Plus I had passed out two times while working and ending going into hospital by ambulance two times. Yes the blurred vision started getting worse. Within that year I lasted 8 months when I thought I just couldn't handle it any more. Good thing I did quit as my superisor was going in that week to tell her boss that something was wrong with my heath and she felt it would be unsafe for me to continue. Right away I applied for Disability and got it with in the year. I had also made the decission not to drive as my eyes were very blurred and hard to vision things in. Just November of 2012 I found I would have both eyes needing catarac surgery done. Took 2 months to heal good but doing much better. Still have the moving around eyes going (nystagmus). Still refuse to drive because of the eyes.
Falling asleep still happens being home. It is like I am so tired I can fall asleep sitting at my desk typing and not even know I dozed off. Another reason I will not drive.
I am so sorry to hear of your upcoming decision. If you are single by yourself. Your decision will be rough but you know what? You will have to decide soon as this is not going to get better for you. You have to make your mind up that you do not get the choice in this matter. You must look at your life as being what it is and dealing with each day as it comes. Bottom Line. Sorry but there is no easier way to look at this disease. If you are married it will be nice to have someone to help you through this.
I tell you as it is. Life will be different but I assure you that you can still live normal. Just do things slower and take your time. Yu can always check out to see if you can live in a ficility where they have cords in your bathroom and it alerts the nursing home close by that you have an emergency in your home and they come to check on you. Every night you slip a paper under your door to let them know your ok. Morning do the same. Just so they know your ok. Otherwise you live on your own and come and go as you pease.
I don't know how old you are or if married so I hope some of my ideas help in some way for you. Good luck on your decision but remember you are the only one who knows how much more do you take. Once that decision is made.....trust me you will feel such a satisfaction of knowing you finally picked yur future out. If you live in a town theres lots you can do to keep bust. I live in a small town and can't walk well but can ride my 3 wheel bike with my basket and go ride and check out garage sales, lots of visiting. Invite people for lunch. Or I go out to lunch. I joined a Bible study that I love. Again keeping in contact with everyone. Life is what you want and what you make it to be. I love my life and myself. I have been diagnosed with my ataxia for 2 years now and I still feel as if I have a great life. Big change but I try to think of
things to keep busy.
Good luck on your choices and keep in mind to make your life comfortable for yourself. If you find you are over tired you will want to make a decision real soon before you wear yourself down to worse health. The thing is this. Think of yourself first and make the most important decision as soon as possible. God Bless and take care.
Thanks, again, everyone for your responses. I am going to print off this discussion and read it everytime that little voice in my head questions whether I made the right decision.
Oh....and Neta? I was upset when I read your post. I am also working with a shrink. Most people would not know there is anything wrong with me by looking at me (especially if I'm just sitting) as most of my symptoms are subjective. One of my biggest hurdles is worrying that others will think I'm lazy. (I know I shouldn't care what other people think, but I do.) I know how I feel. If I were you, I would talk to my shrink and let them know how I am feeling and if that doesn't work, maybe consider finding one that doesn't make me feel like he/she is passing judgement on me. Just a thought.....
Thanks again everyone!
Sue
Denver, CO
DearSue,
Frankly, I don't even know why I speak to the shrink instead of just taking the meds which he offers for anxiety and depression.)He is very nice and experienced but believes that I am making everything worse by torturing myself because I have to wear things like flats. He has counseled me NOT to read sites such as these (where many are,it seems, more disabled than me) and the Internet (on ataxia) in general. I am notsure that I agree. While I find it hard to believe that psychiatrists can ameliorate physical issues, I still go to him.I have what neurologists have termed "mild" ataxia induced, they think, by an auto immune issue. But its not mild to me, a real life changer. Bye now . N
PS I also worry (too much) what people will think (I am young.). But I am slowly weaning myself off that. I spoke more frankly about this to my father (age 91) this week and he took it better than I thought. My mother, 89, is another story but she has her own problems....
Sue said:
Thanks, again, everyone for your responses. I am going to print off this discussion and read it everytime that little voice in my head questions whether I made the right decision.
Oh....and Neta? I was upset when I read your post. I am also working with a shrink. Most people would not know there is anything wrong with me by looking at me (especially if I'm just sitting) as most of my symptoms are subjective. One of my biggest hurdles is worrying that others will think I'm lazy. (I know I shouldn't care what other people think, but I do.) I know how I feel. If I were you, I would talk to my shrink and let them know how I am feeling and if that doesn't work, maybe consider finding one that doesn't make me feel like he/she is passing judgement on me. Just a thought.....
Thanks again everyone!
Sue
Denver, CO
Hi -This is kind of off-topic, yet not.
This blogger did a great job of clearly explaining some things. Even though it’s regarding an aneurysm, most can relate:
http://faithfueled.wordpress.com/2013/04/22/this-one-is-for-us/
That was beautiful . Thanks for sharing it.
Glitter on Butterflies said:
Hi -This is kind of off-topic, yet not.
This blogger did a great job of clearly explaining some things. Even though it's regarding an aneurysm, most can relate:
http://faithfueled.wordpress.com/2013/04/22/this-one-is-for-us/
Even though I miss my job, I quit mainly so I would have time to exercise and take care of myself. Slow down the progression. I still volunteer and some people work part time.
Glitter on Butterflies, I read then link, a real eye-opener for sure! Thanks for sharing..., ;o)