i have had to give up work i am just to unsteady on my feet i now need to use a stick all the time, i am having a hard time making the adjustment and would welcome hearing how other people have coped.gill
Hi Gill - I was lucky enough to be able to work till I was 60 and then retired. I find that I am much slower and therefore dont have much trouble in filling the days.
Exercise is the most important thing and I do 30-40 minutes every day on my wii-fit.
Have you got your benefits sorted? you might need some help with that.
Very best wishes, Patsy
I gave up teaching about 4 years ago.I had ataxia but was not diagnosed then.I did not know why I could not cope and I had for 25 years.All my stress related symptoms went.I still use my brain but don't get paid.I initially went to work with my husband but that was when my speech was not affected and I couold answer the phone.I know I am lucky to be married to the boss and do a bit of paperwork.I don't have any money but I am happy seeing everyone and using my brain .I go once a week or twice just so that i have a routine.I am happy to just go in the corner and do some paperwork but i am very slow but i know any other boss would put pressure on me.I find having a routine helps even on my days at home.I am currentlyfilling out the forms for retirement from teaching on the grounds of ill health.I would be interested if ataxia is considered ill health??
Good luck with the adjustments.
Marie
I gave up work because I could not cope any more. It does take time to adjust but the best thing I did was go on a course called The Expert Patient Programme. It is run by NHS/PCT. It made me forget the life I had and accept my condition. I have made new friends too because we all have various conditions but cannot lead a normal social life, therefore accept it if we have to cancel arrangements. It is important to keep motivated and have things to look forward to on our good days.
I have taken up hobbies I gave up when I was working and now enjoy sewing again.
I hope you enjoy your retirement.
Pat
hi pat how can i find out more about the expert patient programme, i do keep in tuch with friends and try to do the things i have always done but its not easy thank you for your reply. gill
Like you, I'm still in the process of coping. I had to stop working as of last September, and I was fairly new to my job. Things were going well for me, and i was very excited to be starting a new career so it was hard to give it up. Now it is hard to imagine going back, and somehow I keep feeling it is temporary even though I know that it is most likely not. All I can say is don't stop doing what you CAN at home. My husband helps me to stay focused on what i CAN do, not what I CAN'T even when it is hard.
It is not well publicised but I looked it up online. I also found a leaflet at my gp surgery. It is a very popular course and they have a long waiting list but don't give up. Apart from all the useful information they share with you the best thing is the experience and how it helps to give you back your confidence. All the best - Pat
Hi Gill,
I have been working at Easter Seals Arkansas as a technology assistant for 7 years now. I have Ataxia and use a walker on wheels but as time passed people were a little unconformable about my gait and possibly falling so I switch back and forth to my walker and scooter. I mostly use the scooter at work and use my walker to come and go from work. My supervisor and many employees are aware about people with disabilities. I am blessed to have such an understanding supervisor.
Matt
Hi gill,
I made the decision to retire in may 2007. I was the Maintenance program administrator for a large prison facility in Texas for fifteen years. My ability to walk without assistance and my muscle tremors got to the point that I felt it was unfair to myself and my family to continue. It took several months to get used to not having to get up and be somewhere. Here I am almost five years later and I hardly think about my old job. I guess what I'm trying to say is please be patient with yourself and focus on things that make you happy.
Ted-
Wish I could "like" a comment as on Facebook... I appreciate your last statement, Ted, about focusing on what makes you happy. :)
Ted said:
Hi gill,
I made the decision to retire in may 2007. I was the Maintenance program administrator for a large prison facility in Texas for fifteen years. My ability to walk without assistance and my muscle tremors got to the point that I felt it was unfair to myself and my family to continue. It took several months to get used to not having to get up and be somewhere. Here I am almost five years later and I hardly think about my old job. I guess what I'm trying to say is please be patient with yourself and focus on things that make you happy.
Ted-
Ted said:
Hi gill,
I made the decision to retire in may 2007. I was the Maintenance program administrator for a large prison facility in Texas for fifteen years. My ability to walk without assistance and my muscle tremors got to the point that I felt it was unfair to myself and my family to continue. It took several months to get used to not having to get up and be somewhere. Here I am almost five years later and I hardly think about my old job. I guess what I'm trying to say is please be patient with yourself and focus on things that make you happy.
Ted-
thank you for all your replys i am trying to stay possitive and carry on doing things i enjoy only problem is most the things i like to do you need to walk about and thats grtting harder and harder.gill
because of not excertising my leg muscles(i use a mobily scooter) i have now got to have a scan for the exact spot in my theighs-both left and right-as i have deloped bursters-small balls of collective fluid in the top of my legs,most painful at night if i put any persure on them,so try to lie on my back,very difficult as back really painful with Arthris both Arthris and Axtia blamed as walk funny!!!!! Me not laughing!!!! Started on the treadmill for 5mins i will increase my time ,so im hoping i will increase my strengh in my leg muscles Lorraine
gillian barton said:
thank you for all your replys i am trying to stay possitive and carry on doing things i enjoy only problem is most the things i like to do you need to walk about and thats grtting harder and harder.gill
Hi Gill - I am in the same boat. My last day of work will be May 31 - the last day of the school year. This last week I gave up waddling around with my cane at work - or worse just sitting at my desk- and accepted that I will just have to use my wheelchair at work.I have to keep going these last few weeks for my students. I am unable to keep up my job as a high school Biology teacher after this year. I don't have the energy to walk, try to speak well enough to be understood, plan lessons, grade papers, set up labs and teach full time. Too bad - I've always loved my work - but it is what it is. I am applying for disability and my teacher's pension. I hope that I may be able to substitute part time when school starts in the Fall. I am only 48 and I'm not ready to stop trying to help kids. My school administration has been great - they even let me participate in helping select my replacement.
Keep On Keepin' On! Mary
I gave up teaching for years ago whenI was 47 .Have just applied to the Teachers Pension.I willlet you know when I hear from.It seems more difficult than you are out of service so you are doing the right thing now.I knew something was wrong so I gave up and then I was diagnosed a year later.By then I had left.I couldn't keep going so I had all the summer term off sick.
I now get DLA and that was a struggle.Good luck with the term.I paid ito the Teachers Pension since I started in the 80s.I cant write or talk very much now but until this year I continued to walkunaided.It was trying to teach Games and PE that I first noticed something was wrong.I couldn; 't balance.
Marie
From what I learned is. You have to cope with it. Its always there. It only goes away when your laying down. lol. Im now on disability and it doesn't even paid the bills. So Ataxia is something we have to live with. And mentally not ruin us! We are beautiful! We just walk funny.
I left my job two weeks before I found out that I had Gluten Ataxia. Gluten can cause ataxia and once I gave up gluten as well as dairy because I was allergic to dairy proteins I started to get better. Now 16 months later I can do pretty much anything and I'm looking for another job. Gluten attacks the cerebellum in your brain which is the balance center and once you stop eating gluten you can get better. I may never be 100% cured but I feel pretty good now and can do most anything as long as I avoid gluten and dairy. I recommend an elimination diet where you stop eating gluten for a few weeks to see if you notice a difference. It takes months for major changes so don't give up hope.
i have been retired on ill health
and finding it very hard to cope
miss the kids
i was a primary school teacher
i find days very lonely as my husband and daughter are at work
Hi Gillian,
I had to give up working 2 yrs ago now. I was a hairstylist I loved doing hair and talking with people all day long! :0) I was on my feet all the time. It really was bothering me so I tried adjusting my work space etc to contine and I did for a coupe yyears. But it became just too hard on my body.. Not being able to balance well balancing started showing up in my work. Thank goodness I only noticed it but it was only a matter of time that the people's hair would. show it I started dropping my shears and triping when I was walking from one room to another etc.
The way I look at it is it's just a new chapter in my life now not working at doing hair even though I loved it. I was doing hair for 26 years and had my own Salon for 18 of them! . I feel as if I'm still working, but just with my health now and it takes full time eatting right, sleeping exercising my brain and my body.! :0) . I find it just to difficult now to try to do things the same way I used to, so I just try to be creative about it looking at how I can do almost the same thing or change it all together. If I do try to do something that I used to do I just try to do it even a little bit diffrently in the way I want to. I adjust and manage well.I think accepting is key but that said still challenging myself just little by little. :0) it's a challange but I love this journey now! I was real angery in the beginging that I could do what I used to, but I think it's all in how you really look at it.
I focus my time on making sure I tend to my health first now and choose to make it just a little bit better than yesterday. See I believe it's ballancing everything in life that we have to focus on now. Before we got away with not having to but now we just do that's all. I feel lucky that I get to devote all my time to making my life beter everyday now. Sure I take a day off once in a while but I let my head rule and do what I know I have to do no matter really how I'm feeling because it changes when I focus and I take lot's and lot's of breaks too! :0)
That works well for me. Good luck on your journey with this ataxia also. Exspecting it to be a challenge changes it somehow! :0)
Hi Gill. I had to stop working also. I had a great job. I fell a few times at work. I think they all could see how hard it was for me just to get around. I had a really good professional relationship with my boss and all my co-workers. I was soooo surprised when I got called into his office, and got "let go" I was in shock. I thought they fired me. But, they told me I could collect unemployment for as long as I could, then I filed for disability. I am on disability now. I am not very happy with my situation. But, what can I do. Just keep our heads held high, do as much as you can. It is very hard for me also, but like I said, just keep smiling. Then I think of my daughter. I keep pushing for her!!! Good luck!!
Sharon