Hi, I am just curious as to how those who have ataxia make a living. I work as a second grade teacher because of my symptoms getting worse especially in my handwriting, my speech and the way I walk, I am thinking about quitting. However I am still able to do certain simple tasks. I am devastated thinking about this because being a teacher was my passion.
How did you cope with having to quit your job and how do you make a living?
I worked for my county government as an irrigation specialist. I worked 2 years longer than I should have, the supervisor recognized my condition and referred me to his doctor as a test. The doctor made the choice for me and I was devastated, you see I’m 47 and had already worked 31 years so I didn’t know how I was going to cope without work. I use gardening and house work to keep me busy, along with love!
I work as a technical consultant, and so far I'm still able to work - the people around me know about my "issues" so they know when I say that I can't do something or need help to do it I'm not joking about it - and so far it hasn't had a huge impact (thankfully). I know that eventually things will have an effect, but hopefully not for a while!
I was a teacher too but gave up about 8 years ago.Too much stress and too many deadlines.
I did admin P/T and that was much better. I have now given that up but it was a good interim for about 7 years.
I live off benefits,pensions and my legacy from my Mum who died last Aug.
It’ll be interesting to see some of these replies!
For myself, ataxia has prevented/discouraged me from persuing the career I was most passionate about, first of which being medicine, then architecture. This led to some severe depression.
Since, I formed and currently direct a small not for profit which assist the disabled and elderly. Recently I also moved into the hospitality industry and bought a cafe to financially support the not for profit as well as furthering my aim to branch out into youth services. Unfortunately the cafe isn’t going too well so all of everyone’s support and well wishes would be amazing!
I'm on Social Security Disability.
I worked in the high tech industry for 30 years. Gave up the job when my husband died and my symptoms started getting worse. Sold my house, bought a condo which is a godsend as the maintenance on the house was daunting. Now I get SSI, husbands pension and my own pensions to live. I could not work anymore as the pressure was too much. Now I am learning to smell the roses and slow down. When I remember my old life, my responsibilities, I am amazed at what I accomplished each day and it was all so easy. I know The Lord has a plan for us all so I try to keep a good attitude each day.
Marie Turner, I felt the same way too. I was so stressed out and had too many deadlines and all my weekends were doing work.
I’m scared and worried because I am only 32 and because I started working as a teacher not too long ago, I don’t really have much in pension.
I’m thinking I need to look for a minimum wage part time position. The thought of it is really devastating to me because I put in so much time, effort, and money in this career.
Well, anyways, I see that you all went through these challenges and made it out there so I know I will too. Thank you for all your replies!
Kudos if you live in NYC!
I retired with a small pension from my Government job (for other reasons) before the majority of my symptoms started to show. I had no problem leaving as it wasn't my passion - just a job.
Within three years I was officially diagnosed. Soon after that my husband left his long-days and very stressful job so that we could realize our dream of traveling in our RV and seeing places before I'm not able to.He still works for that company as a contractor, working from home - wherever home happens to be (long story).
I took a year off after that job, and de-stressed and relaxed. Then I started really learning web design and SEO - something I had always dabbled in and loved but never really had the time for. This is what keeps me busy these days. I love what I do. I work the days and hours I choose.
We have time left over for seeing things and doing what we want.
It's also something that I know I will be able to do for many years to come.
The key is to find something that you enjoy, that you are able to do. Something that makes you happy and keeps you positive.
Marie Turner, I felt the same way too. I was so stressed out and had too many deadlines and all my weekends were doing work.
I'm scared and worried because I am only 32 and because I started working as a teacher not too long ago, I don't really have much in pension.
I'm thinking I need to look for a minimum wage part time position. The thought of it is really devastating to me because I put in so much time, effort, and money in this career.
Well, anyways, I see that you all went through these challenges and made it out there so I know I will too. Thank you for all your replies!
Kudos if you live in NYC!
Its very hard to try and get things in place because it all happens so fast. The only thing I can think of is SSI disability .
I had to retire a few years early and really didn’t want to but after 3 years am so glad I did! I was self employed as a real estate broker and have always been an entrepreneur so have no problem figuring out how to keep busy and self start in the morning. At first I was depressed and had to go through a lot of hoops to be able to collect Social Security disability. This is different than SSI. Social security has a compassionate approval list that includes Ataxia SCA and once approved you receive the same retirement amount you would have received if 65. Even at 32 you should consider this. If you were a teacher for a few years you may have enough credits to collect full social security and retire early. The retirement will take pressure off and allow you to concentrate on your health. Plus you are still allowed to make some additional money part time either working or through a small business. I garden, take care of my grandchildren, travel to Hawaii, and am reviving all kinds of artistic crafts and am thinking of opening an etsy store to sell some of them.
What is your feeling about tutoring? There are places like Sylvan Learning center which are always looking for teachers. Also, my Aunt did private tutoring for many years. Another option could be online work. I know from my husband's ataxia that he was devastated when he couldn't do what he was trained for but he figured out what he wanted to do quickly and hasn't missed a beat. We do miss the money but sold the house, moved into a condo and I have more time to do the things I want to do, too.
I had to quit my job in 2011, a year after my worst symptoms started. It was really hard, but now I don’t regret it as I need to focus on keeping free of stress and keeping my body in shape. Plus I have an 11 year old at home I get to spend more time with. I did not have enough working credits to qualify for disability and my husband income is higher than the allowed amount for SSI. So he supports us all, and we’ve had to make a budget, some cuts, and decide what was most important to us. It was difficult, but neither one of us regrets it now. I think as time goes by you start figuring out that quality of life is more important than a career.
Hi, I was an engineer for 30 years and was taken off of work by my doctor. I had short term benefits and long term benefits plus I qualified for social security disabillity very quickly.
I was a preschool teacher which I loved and miss very much. I became very afraid I would drop or fall on the children so I decided to quit. Now I receive Social Security Disability. It is hard to survive on so little but managable. I keep myself busy with taking care of my family, clipping coupons (lol) and exercising.
i was thinking about tutoring but it is not a stable source of income. I’m thinking of doing that on the side and look for a stable job. Thank you for the reply.
Kit said:
What is your feeling about tutoring? There are places like Sylvan Learning center which are always looking for teachers. Also, my Aunt did private tutoring for many years. Another option could be online work. I know from my husband’s ataxia that he was devastated when he couldn’t do what he was trained for but he figured out what he wanted to do quickly and hasn’t missed a beat. We do miss the money but sold the house, moved into a condo and I have more time to do the things I want to do, too.
Thanks for the advice. I’ll definitely look into SS disability
maryseas said:
I had to retire a few years early and really didn’t want to but after 3 years am so glad I did! I was self employed as a real estate broker and have always been an entrepreneur so have no problem figuring out how to keep busy and self start in the morning. At first I was depressed and had to go through a lot of hoops to be able to collect Social Security disability. This is different than SSI. Social security has a compassionate approval list that includes Ataxia SCA and once approved you receive the same retirement amount you would have received if 65. Even at 32 you should consider this. If you were a teacher for a few years you may have enough credits to collect full social security and retire early. The retirement will take pressure off and allow you to concentrate on your health. Plus you are still allowed to make some additional money part time either working or through a small business. I garden, take care of my grandchildren, travel to Hawaii, and am reviving all kinds of artistic crafts and am thinking of opening an etsy store to sell some of them.
Is it possible to get your own students to tutor, I think this would be even more enjoyable.
I was a certified IT Auditor and Internet Security Expert. I was forced into early retirement to ataxia. One word of advice: have hobbies. It’s very boring at home if you don’t have kids, hobbies, volunteer opportunities, or social stuff to keep you busy.