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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Good Timing

Terri Reinhart

Timing is everything, so they say. I'm not sure exactly who they are, but in this case I'll give them credit. Timing is important. It's the difference between a gourmet dinner and something we feed to the chickens. Good timing was getting to the bank to refinance our mortgage on the day the interest rates hit their lowest. Bad timing was arriving in Chicago at the same time as a major flood.  

Not great timing was applying for a scholarship the day before the due date to an almost full conference when the scholarships were first come, first served. I had seen the emails about the Annual Meeting for PCORI (Patient Centered Outcomes Research Institute) and hadn't even considered going. I couldn't afford it. I didn't open up the specific info and didn't see the scholarships until it was almost too late. I applied anyway, just because. 

The day of the scholarship announcement came and I heard nothing from PCORI. I did receive a phone call, however. It was my sister letting us know that her 27-year-old daughter, Jenny, had been diagnosed with a rare cancer, a high grade sarcoma. My niece is very close to us geographically and in our hearts and with her parents in California. I knew we needed to be present for her and make sure she had the support she needed. I was glad I hadn't heard from PCORI at that point.

Things moved very quickly after Jenny's diagnosis. I took care of her 16-month-daughter while Jenny had a PET scan and MRA. After taking everything into consideration, they decided they would go to the Sarcoma Center at UCSF for treatment. She and her husband had already decided they wanted to move back to California. Jenny wanted to be close to her family. They went back last Thursday and had their first appt at the Sarcoma Center on Friday. 

The good news is the doctors were very positive. The cancer has not spread and they are confident it can be treated. More good timing. Jenny and her daughter will stay there and her husband will come back to Colorado to work on getting his job transferred to California.

Two hours after I received this good news, I got an email confirming my hotel room for the Annual Meeting in Virginia. Nothing else, just the confirmation from the hotel. I made a few calls and waited. And waited. Last evening, I finally emailed my mentor and said I was assuming I wasn't going anywhere so maybe I should just cancel the hotel. 

Ten minutes later, she wrote back and another email came with the rest of the details. Yes, I had indeed received a scholarship and they would make arrangements for me to come. I sat and stared at the screen in shock while the puppy we are watching calmly chewed a hole in my 2nd best shirt - while I was wearing it. I kept staring wide-eyed, mostly because with all the to do, I had forgotten my meds and wasn't blinking. Timing again.

I freaked out for approximately ten minutes. I can freak out quickly if I need to. I felt badly I would miss seeing my brother and sister-in-law who are in town - BUT - now I know there's someone here in case there's an emergency with our parents. I was sorry to miss my daughter-in-law's father, who is also visiting - BUT - he will be helping out with the grandchildren. If there was ever a time when I could get away, this was it.

Chris encouraged me to go. He knows I enjoy travel and enjoy working with PCORI. I'll learn a lot and meet a lot of people. And I'll probably come back exhausted. If the scholarship notice had arrived on time, I would have declined. The timing wasn't right until I knew Jenny and her family were settled.

Chris, meanwhile, will have a nice quiet week, mostly to himself as Emma is back in classes during the day.

Good timing.