I see from the many profiles, some of us are still working and some of us are not. I’m not sure if that’s due to the disease, reaching retirement age or both. For those of you who left work and went on disability, how did you know when the time was right? The thought of making the decision feels like I’m giving up or I’m being lazy…..I know that I shouldn’t feel that way, but I have always been a very hard-working person.
My current position is responsible for more work than one person could possibly handle and comes with lots of stress. I also work four ten-hour days with three days off. (The ten-hour days turn into 12-hour days when I include working through my lunch hour and the time it takes me to drive to and from work.) My major issues are exhaustion, double vision and nystagmus. I have a sedentary supervisory job with lots of computer work. The double vision makes it more difficult and take longer to complete my work. I have tremor in my arms and legs, but also in my trunk, so just sitting up for periods of time is tiring. As it is now, I go straight to bed when I get home from work and then I get up and do the same thing again for four days. My first day off, I spend mostly lying down and sleeping trying to get rested from the previous four days, the second day is a bit better and I can get some housework done inbetween lying down for periods of time throughout the day. The third day, I feel almost back to “normal,” but then it’s back to work the next day and it starts all over again.
I keep thinking that the exhaustion is going to pass and I’m going to find more energy, but no such luck so far. I know I need to exercise, but I have so little time in the four work days and am so exhausted that it’s a struggle just to get out of my chair. I am being treated with Amantadine (sp?) for the exhaustion and tremor, but I do not notice any difference after two months. They have given me Ritalin in the past, but it stopped working. I feel like it takes me three days off to recover from the previous four work days and that's not doing anything "fun." If this doesn't get any better, I don't know what I'm going to do. I'm pretty frustrated.
So, what do you think? I'm too young to retire. :(
It may be time when you don't feel safe anymore doing a job, I was a firefighter. I had an exact diagnosis from my doctor which I believe made things much easier. I worked for the federal government and received a disability retirement from them, when now is going through the process they had me also applied for social security disability benefits, I now receive both. When going through the process I talk to my supervisor and I was taking off firefighting duties and was placed on"light" duty.
Maybe there is something at your place of employment that might work for you. See if your company offers some sort of disability retirement.
As I was finishing up my post yesterday, it became clear to me that I may be closer to leaving my job than I thought. It's funny how some things become so clear when you put them down on paper.
I don't believe there is a safety issue for me as I sit at a desk all day, but the speed at which I can perform my work and sometimes the quality is not what it used to be due to the fatigue and vision problems I have. I don't believe that sitting for 11 hours a day is helping my health at all either.
I have an appointment with the neurologist who specializes in ataxia later this month and that is also when I will get the results from the genetic testing that is being done. I am going to try to hold out until that appointment, where I will hopefully receive a more specific diagnosis other than late-onset cerebellar degeneration. Depending upon what the doctor says, I believe that I will see if I could go on a modified schedule until I can't work any more.
I work for a municipality and have therefore not paid into Social Security for the past 15 years. I have been told that the city purchases its own disability insurance and the coverage is comparable to Social Security disability. (sure hope so) It would not be to my benefit at this time to take a lesser job or a part-time job as this would reduce the disability amount I would receive. The insurance company will require me to apply for Social Security disability, but I will be denied because I have not paid in.
I guess I'm just going through a period of adjustment about what I can or cannot do or whether I just can't do it as well. It's tough being a Type A personality and having these problems......guess I'm just going to have to get over it! :)
Jack, thank you again for your response; it was very helpful. :)
Jack said:
It may be time when you don't feel safe anymore doing a job, I was a firefighter. I had an exact diagnosis from my doctor which I believe made things much easier. I worked for the federal government and received a disability retirement from them, when now is going through the process they had me also applied for social security disability benefits, I now receive both. When going through the process I talk to my supervisor and I was taking off firefighting duties and was placed on"light" duty.
Maybe there is something at your place of employment that might work for you. See if your company offers some sort of disability retirement.
if you do not have an official diagnosis yet I believe would probably get turned down if you applied to Social Security. I think that there may be some sort of private insurance could get, possibly long-term health care or they do have a disability plan, possibly. Once you get an official diagnosis you may not be eligible, as I case when I tried to purchase long-term healthcare. I am using voice recognition software to compose this you might find this helpful to use, it's called Dragon. Also check with your municipality to see if your diagnosis and condition is covered
Sue said:
Thank you for your reply, Jack.
As I was finishing up my post yesterday, it became clear to me that I may be closer to leaving my job than I thought. It's funny how some things become so clear when you put them down on paper.
I don't believe there is a safety issue for me as I sit at a desk all day, but the speed at which I can perform my work and sometimes the quality is not what it used to be due to the fatigue and vision problems I have. I don't believe that sitting for 11 hours a day is helping my health at all either.
I have an appointment with the neurologist who specializes in ataxia later this month and that is also when I will get the results from the genetic testing that is being done. I am going to try to hold out until that appointment, where I will hopefully receive a more specific diagnosis other than late-onset cerebellar degeneration. Depending upon what the doctor says, I believe that I will see if I could go on a modified schedule until I can't work any more.
I work for a municipality and have therefore not paid into Social Security for the past 15 years. I have been told that the city purchases its own disability insurance and the coverage is comparable to Social Security disability. (sure hope so) It would not be to my benefit at this time to take a lesser job or a part-time job as this would reduce the disability amount I would receive. The insurance company will require me to apply for Social Security disability, but I will be denied because I have not paid in.
I guess I'm just going through a period of adjustment about what I can or cannot do or whether I just can't do it as well. It's tough being a Type A personality and having these problems......guess I'm just going to have to get over it! :)
Jack, thank you again for your response; it was very helpful. :)
Jack said:
It may be time when you don't feel safe anymore doing a job, I was a firefighter. I had an exact diagnosis from my doctor which I believe made things much easier. I worked for the federal government and received a disability retirement from them, when now is going through the process they had me also applied for social security disability benefits, I now receive both. When going through the process I talk to my supervisor and I was taking off firefighting duties and was placed on"light" duty.
Maybe there is something at your place of employment that might work for you. See if your company offers some sort of disability retirement.
if you do not have an official diagnosis yet I believe would probably get turned down if you applied to Social Security. I think that there may be some sort of private insurance could get, possibly long-term health care or they do have a disability plan, possibly. Once you get an official diagnosis you may not be eligible, as I case when I tried to purchase long-term healthcare. I am using voice recognition software to compose this you might find this helpful to use, it's called Dragon. Also check with your municipality to see if your diagnosis and condition is covered
Sue said:
Thank you for your reply, Jack.
As I was finishing up my post yesterday, it became clear to me that I may be closer to leaving my job than I thought. It's funny how some things become so clear when you put them down on paper.
I don't believe there is a safety issue for me as I sit at a desk all day, but the speed at which I can perform my work and sometimes the quality is not what it used to be due to the fatigue and vision problems I have. I don't believe that sitting for 11 hours a day is helping my health at all either.
I have an appointment with the neurologist who specializes in ataxia later this month and that is also when I will get the results from the genetic testing that is being done. I am going to try to hold out until that appointment, where I will hopefully receive a more specific diagnosis other than late-onset cerebellar degeneration. Depending upon what the doctor says, I believe that I will see if I could go on a modified schedule until I can't work any more.
I work for a municipality and have therefore not paid into Social Security for the past 15 years. I have been told that the city purchases its own disability insurance and the coverage is comparable to Social Security disability. (sure hope so) It would not be to my benefit at this time to take a lesser job or a part-time job as this would reduce the disability amount I would receive. The insurance company will require me to apply for Social Security disability, but I will be denied because I have not paid in.
I guess I'm just going through a period of adjustment about what I can or cannot do or whether I just can't do it as well. It's tough being a Type A personality and having these problems......guess I'm just going to have to get over it! :)
Jack, thank you again for your response; it was very helpful. :)
Jack said:
It may be time when you don't feel safe anymore doing a job, I was a firefighter. I had an exact diagnosis from my doctor which I believe made things much easier. I worked for the federal government and received a disability retirement from them, when now is going through the process they had me also applied for social security disability benefits, I now receive both. When going through the process I talk to my supervisor and I was taking off firefighting duties and was placed on"light" duty.
Maybe there is something at your place of employment that might work for you. See if your company offers some sort of disability retirement.
Hi Sue. I was let go from my job of 10 years. Last year. I worked in sales so I was with the public. I was let go because the customers were going to my boss, telling him he had a intoxicated person working. The company had enough. So they let me go. Thank goodness I have been seeing a Neurologist for 2 years. My doctor was the one that got me on disability. I can not live on it because I didn't make good money over the years. But I have it. I feel it is best to leave a job. Because you know you cant do it. Instead of them letting you go. But you have to make sure about the S.S. I now have my name in a place for unemployment called DVR. They help find jobs for disabled people. Be strong. And get all the facts!
I stopped being efective 4 years ago at my diagnosis time
When you take an abnormal time to do things
Abnormal time Is longer than before
Seasonal regards
Barney
In the US SSD doesn't depend on what your diagnosis is necessarily. It's your functionality. You need your doctors to document (and you keep a journal) of what you can and can not do. Additionally, in the US if you are over 50 you only have to NOT be able to do your current job. Under 50 it's any job (McDonalds etc).
I had what is called a nuero-physic eval. It's a brain function test. It can take up to a total of 8 hours to take the test. It's basically just a bunch of games. My results showed very clearly that I was unable to work.
My last day of work, I was carried out by co-workers and driven home. That was the end of that. I kept thinking every morning, "I'm getting better (I was not), next week I can go back to work.". My employer of course had to fill the position.
Since I'm an optimist I was sure I would be back to work by "next" month. After years of that, my husband suggested it was time to file for disability.
I was turned down the first time (most in the US are), then got a lawyer and within 2 months was approved. Lawyers get 20% of the back payments only in the US.
Julie, I had that same testing done. What fun it was. I was getting mad at the math. I didn't do to well on the memory games . I wasn't turned down for SS. But it takes 6 months to kick in. I lost a lot in that 6 months. I have my name in the DVR there threw unemployment. They do do much for the disabled. ( Now I see why this country is broke) They just bought a special van for a man, because he had back issues. They pay for health care if you dont have it. They will do whatever it takes.But they do work with you on finding something to make you happy.
I gave up teaching about 5 years ago.I had experienced stress and depression for years.All that went.I could not understand why I was getting slower,tried to keep up but couldn't then the symptoms of my ataxia came out..So now I have joined the ranks of the retired, have to wear a bib,push a walker but mentally I feel fine.I did not feel ready at 48 to retire but I am very glad I did.
I have found getting a sympathetic doctor has helped.Perhaps you could give up your present job with its stress and spend the next few years or so doing a job that maybe doesn't pay as well but releases you from stress which makes ataxia symptoms much worse.I went through the dilemma myself a few years ago and don't regret giving up a stressful job.
Hi Sue - In my case, I didn’t really have a choice due to emergency brain surgery, a coma, a loss of a lot of “regular” functioning, etc., but I would think that once you can’t do your job would be a good time to consider your options.
Sounds like me, except I was a secretary. I was getting slower and slower at my job, and feeling anxious because I couldn't work as quickly as I used to.
Marie Turner said:
I had experienced stress and depression for years.All that went.I could not understand why I was getting slower,tried to keep up but couldn't then the symptoms of my ataxia came out..So now I have joined the ranks of the retired
....I went through the dilemma myself a few years ago and don't regret giving up a stressful job.
Marie
I also agree with what Jonas said:
The fact that you are questioning it is a harsh wake up call that the time is getting close.
It sounds like emotionally your ready! I bet you (like me) loving to do crafts have lots of projects to keep you busier than you think. Being a type A you will always find things you can do! You just need the time to find out and take care of you!
I did hai,r modified my work station and tried to make it easier to work as long as I could. I needed (I felt) I needed to keep taking care of everyone elce until I couldn’t do as good of a job that either was needed or that I wanted t do! You’ll know one day you wake up and your just over it! You’ll know when it’s more important and you need to take time for your health! Emotionally and physically. Trust yourself!
Hi Sue, I was a social worker for 28 years. I've been retired for 6 years now (I'm 58). I had 600 cases and used a computer to do much of my work. I kept working for 3 years with ataxia, but applied for a medical retirement when I was key boarding with just my index fingers (I have some neuropathy in my hands), writing things over and over again, and slurring my speech when talking on the phone. Stress makes ataxia worse, and although I loved my job, I knew I was having problems doing it. I don't give in or give up, as I fight my ataxia, but I just knew it was time. My company offered Long Term Disability (LTD), until my medical retirement was approved, but then they told me I HAD to apply for Social Security Disability (SSD). I eventually was approved for that, and the rest is history...,ha! Best Wishes! ;o)
I sympathize with you. I'm in the process of letting go of my former job (supply chain coordinator - good one, for a coordination disorder LOL). I loved doing it very much, and I was quite good at it, but stress and fatigue make it impossible for me to keep up the work, and have a good private life also. I was giving priority to the work, neglecting my responsabilities to myself and my health: cooking properly, doing my exercises, doing fun things to relax, etc. I needed almost all of my spare time to recover.
People have said to me 'accepting is not giving up', 'everyone deserves a life' and 'you owe it to yourself to take the time to do your exercises for your health' but that did not emotionally sink in until I got my puppy in October, a true wake-up call. He depends solely on me, and where I had no problems giving all my energy to work instead of myself, I now have to make 'energy reservations' for him. And of course the regular care and exercise for Dorus are very good for me too! He also reminded me of what's really important in life, and that's not just working.
It's still difficult not to feel guilty, particularly because my physical ataxia symptoms are still subtle, and to find a good balance in life. Fortunately, I'm getting professional help to find out what kind of work, in what way, suits me best, so I can make the most of my skills, but also have enough energy left for other things in life. I don't know what the laws are in your country, but it's also good to have professional advice on how to handle this situation financially, as if the emotional part is not difficult enough ;-)
I wish you all the best for 2013 and sincerely hope you will find a good balance in life! High-five from Dorus!
I also work (just a bit at a local Health Club - for the membership) I ride my recumbent trike to work, but the most satisfying thing that I do is to volunteer up at church (help cleaning and ... simple stuff). All the volunteering keeps me connected with PEOPLE and the exercise keeps me able to volunteer. It's kind of a BIG circle of ... positiveness that keeps me going. All this in/by the strength of God, he is my ROCK!