When you can't run and hide...
 

When the mental snowball effect happens greasing the path for your symptoms take over and you either have no place to ride out the storm, or some responsibility to stay where you are (like work), what do YOU do to cope? Anyone have any tricks? Pretend there's an earthquake than only you can feel? So far, all I do is hold on, totally lose mental focus, have hot flashes and wish I was dead. I know it's possible to forge on, as I've seen many of you do. May be it just comes with time, it just seems the disease matches me step for step with my coping to it's progression.

Thank you all so much for being there. I'm not much a contributor to the site but I sure appreciate the support I get from here.

Robert

i get angry when i think about you
 

Robert is a nice looking young man with a lovely wife. It makes me ill to see him facing this future. I met him twice at Shake RATTLE and Roll.

i don't know your work, but is it something that can include accomodations for pd? You will get to the point where you won't be able to recover for the next day, so I would get any insurance plan you can in planning for those two years between retirement and social security/medicare kick in. If you can have a plan that will work, you can at least eliminate some worry.

My friends [healthy] all have their big homes, their travel plans for retirement. Instead, downsize to the minimum - the more pd progresses, the less you will cut the grass,etc. i live in a two bedroom manufactured home in a very pretty retirement community that is kept neat and spotless. It's all i can handle. i raised my kids in the country in a big house so they have those memories. i don't want to spend my money on a house that is too big to take care of.

Eliminate all the time wasters for the sake of having them, like your own pool.....ick too much work. Been there too.

if you prepare, you might worry less. The first thing i do upon awakening each morning is decide if i'm too awake for more sleep and pop the meds as dystonia sets in. Mentally, upon awakening, i recall what i have to do that day and ask myself why i committed to anything. it's a feeling of anxiety that sets in before i'm even awake.

So don't overcommit and maybe let people know [i don't know where you are in telling others you have it,] that you are not sure whether you can make it to an invitation till closer to the time.

you may already be doing these things. you have a support group locally right? do you still see Joan regularly?

we're always here....and we all need this forum.

i always do better when i set a goal. they have to be realistic, and make sure you meet the goal. it directs your thinking and distracts you.

there are so many more but that's a start.

best,
paula

I'm right there with you...
 

Robert,

I think you may be a bit younger than me; I was pegged with ET in my early thirties; my former neuro has a wicked sense of timing...she held off until I was forty to tell me that I have an old person's disease. I had to essentially repress all this crap to make it through having an amazing kid, and to top it off, the pregnancy made my PD permanently worse, though I was assured otherwise.

I also am having a hard time coping in general and at work. Like Paula said, can't over commit, so I now err on the side of not committing at all. I was somehow blessed with the opportunity to return to work half time, but even then I have to upload with Sinemet to remain "on" for a full 8 hours- I am a teacher up for tenure this year and have not been able to reveal my condition to anyone, and I've missed a few too many days of work too. Some due to the unpredictability of med adjustments and some mental health days where i simply could not face feeling like s**t from eating Sinemet all day to keep going.

When I read that you have a trip to Ireland, I felt so many things: amazed at your bravery and work ethic in spite of the crap response you are getting from meds (I would have crumbled by this point); but ultimately the negatives always creep in some how; the anger, loss, and sadness that you or any of us have to go through this. There is such a tremendous amount of social pressure that we have and its compounded by the pressure we put upon ourselves to be that person we were five or ten years ago; the one that was "normal". That is the hardest thing for me is finding a balance; I don't want everyone to see me as that youngish teacher with PD, yet at the same time, I want to tell everyone I see in passing that I have it and it sucks.

I think that Linda Herman once said that YOPD is the "stealer of lives" and that really is the truth. The PD orgs mean well, but feed us the crap that it's not a diagnosis of desperation but of adaptation. Well, two years in, I have had enough of adapting. I don't even cry anymore, rather when alone I just yell at "it". I too am fed up most days- an anti-depressant helps keep me motivated but really if I thought performing an exorcism would help, at this point, I'd pay someone to incant in Latin, sprinkle me with Holy Water, and play Black Sabbath backwards or whatever...

Sorry to blather on; i just wanted you to know that I "get it"- I would encourage you to join us in chat some time on MSN...there is a YOPD group.
I really didn't think chatting with near strangers would do a thing, but really it is helpful to just have a space to vent with others who immediately know how you feel. I thought of therapy, but when I meet a therapist who has PD, well then, we'll talk. For now, being able to connect with others this way is a lifeline for me.

Laura

Thank you Paula and Laura. My employer knows I have PD, it's actually what made the connection to get the job rolling. I did over commit myself though, big time. My wife is back home trying to sell the house and I'm in Atlanta. It's strange but the anxiety is so strong I swear I can taste it.

same boat!
 

RD,
I was diagnosed with PD 6 years ago, earlier it was not so bad but lately, specially, last year has been very tough. I tried my best to work full time, be involved in my daughter's life (she is 11 now) like any mother would do and yet there are times, when my best efforts are not enough.

Right now, I am facing the reality of PD. Just as you say, I finally make adjustments to life with PD and the PD monster is one step ahead of me. I am starting on a new job and my employer knows that I have PD and in fact PD is one of the reasons for getting this job. This is a wonderful opportunity for me both at professional and personal level. I am happy about this job, but for the first time in my life, I am doubting my abilities to get the work done and I am going into this venture with anxiety rather than confidence. Does this sound familiar to you> You are not alone and this is not how any of us planned our future to be.

You asked how do others cope with the realities of PD: Paula and Laura gave great advice and here is my two cents worth.
First sigh of relief for me is that my boss knows about my PD, so do coworkers and a few others I feel should know. I do not advertise my PD but do not hide it either. So far this strategy helped me
-I tend to take on too many things, but learning to say NO and delegate and trust others to do their job. It may not be how I would have done or 100% right....who can tell the difference between 95% and 100% anyway?
-I think letting go of control, seeking help when needed, accepting that my effort is 100% but my productivity is less than 100%, a job well done now as opposed to an excellent/ superb job , have made a difference to my life.
-One reason I push myself so much is my kid, she needs me and I am not going to let PD rob me of being a mom.
-And HOPE that something will come out of research to make me feel better.

I hope this helps you. Good luck and Best Wishes for your job. Keep posting!

Girija

Girija your post does sound familiar

My heart goes out to all of you who are too young to have to cope with the terrible compromises and painful decisions that attend PD. I am not you nor are my children but the understanding is still there. I think there is no age where coping with this miserable thief in the night is acceptable.

My only advice is try and find something to do about which you are passionate. I have been lucky enough to find my passion after ten years of PD and a great deal of wasted good productive time. If only I could have that time back how much I think I could improve my personal production and with that my self esteem. I spent so much time waiting for it to get worse instead of really utilizing the time to achieve something.

In my other life I was a CPA and when I first started I was forever saying "but that's not fair' to which my mentor would invariably laugh at me and say "who ever told you it was going to be fair?"

Parkinsons Disease is not fair either but nobody ever said life was fair.