Wow, it sounds like you have hung on bravely. I was in a similar situation before I took disability retirement, and yes, it is a challenge making a life apart from work. Like you, my spouse is my main social contact. But for me, I decided that what I needed to optimize was how long I could stay as close as possible to my highest functional level. Reducing the stress of work eased my symptoms, as it does for you, and I decided that it was more important to ease my symptoms and trust that I could find new ways to create a meaningful life and be more functional longer, than it was to burn up my functionality trying to keep doing what I HAD been doing just because it was what I knew.

For me, it has become clear that one of the big challenges of PD is not only the body changes, but the way PD forces me to re-envision my life on a day-to-day basis. Letting go of what I used to expect of myself within my surroundings WITHOUT feeling like 'a failure' is a big deal, but essential. It's important and ok to grieve the 'old you' to make room for the 'new you,' and to view that new you with kindness and curiosity.

I have had to also do something that does not come easily to me, which is to create opportunities for being social, rather than just depending on my work context to bring me that. One internal barrier for me is feeling ok about being seen having my symptoms, out in public, by people who don't know me. Part of me believes nobody will WANT to know somebody like me, but I make a conscious point of arguing with that belief. Ok, maybe some people WILL avoid me, but not everybody will, and there might be some really nice people out there that I'll miss making a connection with if I don't try.

The idea of seeking out other people who have PD in their lives is something I go back and forth on: on one hand, yes, it would be nice to be with people who understand what it's like; on the other hand, PD is not who I am and if all we share is a disease then the conversation topics get limited to that disease, and I don't want to give PD any more of my time and energy than it's already getting. But everybody is different, and ultimately it's a matter of good old Trial and Error to find out what's going to work.

So all I can offer is to make the leap of leaving work, then do at least a little thing EVERY DAY to rediscover an interest you put aside earlier in your life, or that you've always wanted to explore. Close the Book of Work, and open a new book. Only you can decide what to write on these new pages.

Best wishes and good luck!! :-)

Hi @A MyParkinsonsTeam Member, It sounds to me like you have plenty of things to do if you were to leave work, but I know it's difficult, especially when you have spent your career helping people. Many of our fellow PWPs here are retired/disabled nurses, and it seems to me they have all left work because they realized the need to take care of themselves. I take pride in what I have accomplished in my professional life, but it seems natural that a time comes when I should help the upcoming generation as best I can and then turn it over to them. So you're writing a book? I'd like to hear more about that. We just finished up an oral history about my Dad. It was surprising and moving what he had to say and I am glad we'll have it after he is gone.

Mentioned Users

A MyParki...

That's a tough question. I hear ya as I struggled through the same question of how long to try to keep working and when to call it quits due to my health. While I actually miss working and interacting with others on the job I found that I could not keep up with my job duties and Parkinson's was causing me problems with using my work computer. Also dealing with stress is a major struggle with Parkinson's and that plays a major roll in how well I can manage my PD symptoms.

For me it was a so called Perfect Storm. My job was moving cross country and my Parkinson's was getting worse all at the same time. I chose not to move cross country and I took a severance package. Then feeling unemployable due to PD I consulted with my doctor who supported my decision to seek disability as I was struggling physically to function. I was placed on state disability and now I'm approved for federal disability.

I struggle to function with normal day to day tasks and I too have found that the reduction in stress in my life helps my PD symptoms to be reduced or be at a somewhat manageable level. I still struggle around the house with normal tasks and going on any trips away from the home is often a stressful thought and situation. I hate it, but there's not much I can do about it.

Don't know if this helps you any, but this is what I have found. Do consult your physician and know that stress is not good for PD just as you have stated yourself.

Thanks,
Lee

We have a debilitating condition which by its very nature means we are going to get progressively worse, if you can finish early and enjoy life.

@A MyParkinsonsTeam Member and Sloan34, When I was going through the process last year, there is a list of degenerative diseases that automatically qualify you for disability, but PD is not on the list yet. I was denied the first time, but approved when I appealed. You still have to prove you aren't able to work. The side affects from PD meds and joint issues from the PD will help.

Mentioned Users

A MyParki...