Parkinson's Disease Tulip


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Old 07-20-2009, 01:16 PM #11
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Default My best decision ever

First let me say, I was almost sixty when I decided to chuck it all. A much easier time to make that decision. Reading so much about the value of exercise and stress reduction I decided to quit earlier than may have been completely necessary. My job was very high stress and adversarial. (I gave expert testimony on financial issues in litigation.)

It's been four years since I left and I couldn't be happier with my decision. Until about a month ago I had not lost any function during the entire time. I know money is always such an issue, especially for those of you with children, but for me the trade off has been well worth it.

I got SSD on the first try. I let them (SSA) fill our the form and called my Representative's local office when I heard nothing for several months. They were wonderful and after ten months I got the OK plus ten months of back pay.

For information purposes, dxed 2000 at age 53. symtpomatic since 1997 or earlier. 25/100 Sinemet x 3 and 6mg Requip x 3.
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Old 07-20-2009, 01:28 PM #12
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I was formally diagnosed with PD in May 2006. I had been "treated" for Essential Tremor since 1998....I was 35.

I worked in law enforcement for many years, then medically retired due to an injury unrelated to PD jn 1994. I went to work in healthcare as an ER Supervisor.

My neuro & pysch both warned me that stress and fatigue are the enemy. I lasted four more months before I had to admit they were right, between work and my son having nearly died in a suicide bombing in Iraq (July 2006), I went out on disability in October 2006.

I mourned those losses for awhile, then I picked myself up, gave YOPD the middle finger and went back to figure skating, working out at the gym, took up quilting and crochet.

I try to spend my time focused on my abilities and gains, not the losses.
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Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.
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dx'ed w/Young Onset Parkinson's Disease May 2006 at age 43. Symptomatic since 1997 or earlier. DBS June 22, 2010

dx'ed w/TN on right side 2007. GK x4, last GK 02/2013
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Old 07-21-2009, 03:51 PM #13
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Quote:
I try to spend my time focused on my abilities and gains, not the losses.
Kim (Kimberly?)

Those are my sentiments exactly. Though I'd still love to contribute to my profession and feel that I can to an extent, I'm just not sure that I can do it full-time. What makes it difficult for me is the need to hide my symptoms; I am currently seeking a position and have to make it through interviews while my meds are not predictably working for me- I have seen my neuro but tweaking things takes time. Some days, I'm incapacitated by dizziness that I attribute to Mirapex; I actually have to lie down for an hour before it goes away. If I felt I was in control and making the choice, I wouldn't mourn having to give up my career. Since I feel it's the PD making decisions for me, I feel out of control and that drives me batty.

Peony- Welcome to the forum. I enjoyed reading your experience. Oddly, a few studies show educational and medical professionals have a higher rate of PD. Who knows? Please, I hope you continue to share with us.

-Laura
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Old 07-21-2009, 05:56 PM #14
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Default oh boy i am behind

this is a wonderful thread. got behind in reading.

i taught for 8 years after diagnosis; 11-12 with symptoms. Special education.

i quit when i had no energy left to recover from work.

paula

pkell i'm so happy to see you're here.
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Old 07-22-2009, 12:52 PM #15
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Thank you Paula, it's nice to be remembered. Lots of water under the bridge.
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Old 07-24-2009, 10:22 AM #16
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I have a job that works out well for me. I have my own music studio in my home and teach classical guitar with the Suzuki method to children and I also teach a few piano students. I have my mornings to do things around the house and run errands. After lunch I take a nap every day so I am ready to teach beginning at at 3:00 or 4:00 until around 8:30 with a half hour break for dinner.

When my PD symptoms began I was working as a substitute teacher. At about the same time as I began seeing a neuro, I got a long term sub position in 2nd grade. At the end of that school year, I decided working full time in a school was not for me. I had some music students at the time, but not enough to give up sub work. I worked on building up my business and as I got more students, I told the schools I was available to substitute teach fewer days. Now I have about 25 students and I only give music lessons. It does not pay as much as a school job, but it is something I like to do and am able to do.

If you are a teacher, consider tutoring. There are always students who need extra help in reading and math. It also might be possible to tutor homebound students with serious illnesses for your school district. If you can have a room in your house used only for your tutoring, it is a great tax benefit. Although my business does not make a lot of money, my music studio helps reduce our taxes, so I figure I contribute to the household income that way.
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Old 11-17-2013, 10:24 AM #17
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Default Leaving your career behind....

Old thread, but very much alive for me.

I was diagnosed with PD last September. Currently on a medical leave that is about to expire. (And on temporary disability.)

Have another 10 days to either return to work, or loose my job.
Doesn't look I can make it. Deep fatigue getting stronger...

Loosing a job I can take, but given the condition of the economy, my age, not having an academic degree, not having the political skills during the years that could help to get good references, etc. for all practical purposed this probably means also the end of my career. That is a much more difficult pill to swallow...

An added complication is I was told, while on leave, to contact the company only through the human resources department.

So I cannot talk with my supervisors/managers about changes in my job, such as working part time from home, that could make my return more tolerable.

Nothing can be done about the 2+ hours daily commute (on a good day) thought, or the 8 hours sitting in front of a computer screen.

Thanks to previous posts in this thread. I don't expect a magic formula, I'm only venting ...

Rob - (Looking for the bottle with the "Stay Positive" pills.)
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Old 11-17-2013, 05:49 PM #18
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Default Hang in there

I noticed my Parkinson's onset when I was 42 and tried to cover it up (at least I thought I was covering it up) for a good 9 years. Finally, in 2008 it became official. I continued to work full time until 2011 and my neurologist pulled the plug on my job very abruptly. It was like she walked in one day and said "your retiring now". I was way beyond the point that I should have really retired and she had continually told me that but I was too stubborn to listen. So I think one of the keys here is to discuss it with your doctor and get their honest input as to whether you are ready or not. The finances are the next issue you'll have to look into would the disability pay and any pension you have cover your expenses. At work there are several program available through the employer, and state and federal mandates to assist in the work place. Take advantage of these and see how thinks go.
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