LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Monday, June 2, 2008

retirement and disability

I thought John might do better once the semester was over (May 12) and he was no longer working, but it didn't get any better. He was busy moving out of his office and trying to clear out his home study. Now that we are on the first part of our trip he seems to be doing better.

When I first raised the possibility that he had Parkinson's, I asked him if that that was the case whether he would want to retire early so he could enjoy more of his retirement. He said he wasn't ready to think about that. Within a month he was talking about retiring on disability but continuing to teach one or two on-line courses. As we explored what disability payments he might be eligible for it became clear that it was better not to work at least the first year in order to qualify for disability. He also felt he got much worse the first month after diagnosis and then stabilized once he went on Sinement. So now he has given up on the idea of being able to teach on-line, though he does have a research project he wants to continue to try to do. I hope he will be able to enjoy working on that, whether he can complete it or not.

I found it surprisingly hard to find good information about the best tactics to take when applying for disability. John first filed for disability retirement from his job. He was a state employee and the state rules are that you are eligible for disability if you can no longer do your particular job, even if you can still do other kinds of work. He started the process of filing early, though it took a long time before all the paperwork went in. The personnel office told him it was ok to file while he was still working, that they understood that people held on longer than they should. The state disability pays him his retirement as if he had worked until 65, but he has less than 20 years in the system (28 years are needed for full retirement) so it isn't that much.

When he first was hired full time for the state he had signed up for private disability insurance (at that point it was with Traveler's insurance company). We had half forgotten about it but it was a deduction from his pay and was still in effect. We got the paperwork for that sent in just before we left on this trip. If that is approved it will pay him something like $600 a month until he is 65.

The next step will be to file for Social Security Disability, which would particularly help us because we have two kids still in school (one is 15, one turns 18 in June). The standard is stricter for Social Security Disability, you need to not be able to do any job. Our local neurologist said that it is easier to get with Parkinson's than with other disease and that he will support John's case. The Parkinson's specialist said expect to be turned down and have to get a lawyer. I've seen a number of people in on-line Parkinson's group say they got it the first try. Our lawyer recommended a lawyer who specializes in Social Security Disability and I may see if I can pay just to meet with him and get suggestions before we file for the first time. I don't want to hire the lawyer to do it from the start--we can do the first applicaiton and then if John is turned down maybe we give it over to a lawyer.

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