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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.


Terri Reinhart

It has taken awhile to really get into the new school year. I don't like getting up early and the first weeks were a bit of a shock.  Until I got used to it, I was pretty grumpy. Sometimes I even growled and snarled at my family. My daughter is much like me, so she growled and snarled right back. I had just really gotten into summer.  It was comfortable.  I wasn't ready for anything to change.  But, after a few weeks, we got into the rhythm and it just became the new “normal” routine. And I even enjoy it! Now that I am home during the day, I have time to myself, something that has always been a luxury. When summer starts again, it will be a shock to have everyone home again.

It seems this is something I can’t avoid. Whenever I find myself just getting comfortable, something comes along and changes. I barely got comfortable being married and suddenly, just like that, we were parents. I just got used to taking care of a baby, and, what do you know? The kid started to walk.

Nearly thirty years later, I can look back on all sorts of readjustment times in our family:  three children, a foster son, three foster adults, job changes, and a move across town.  And if this wasn’t enough, I was also crazy enough to insist that we have animals. Not just your average puppy or kitten; we’ve had chickens, ducks, geese, goats, rabbits, dogs, cats, guinea pigs, rats, hamsters, gerbils, fish, and a miniature donkey.

Oddly enough, the most difficult pets were the gerbils. We bought one of those colorful, plastic, expensive cages with the tubes going this way and that so they could exercise. The blasted things ate their cage. First the platforms went, chewed to confetti sized bits of colored plastic. Then together, they took down the wheel and started eating that, too. When they started in on the tubes, I put them in a glass aquarium with a top. I confess that when the first one died, my immediate reaction was, “One down, two to go.”

The adjustment to life without gerbils wasn’t too difficult.  The major changes, however, always made it feel as if our old lives had suddenly been chopped into confetti bits, too, and then thrown up in the air. When they landed, we had to try to fit all the pieces back together again. No way was it going to look the same as it had before!   What would the puzzle look like when we got it together? Would our marriage be the same? How would we all fit together as a family?

I’ve found that it’s much easier to think about these kinds of questions if I am eating chocolate chip cookies at the same time. It takes the edge off.

Our marriage would never be the same as it was before we had children. We had to step back and pick up all those little pieces of our lives. In fact, there seemed to be lots more little pieces of our lives. They included legos, matchbox cars, puzzle pieces, children’s books, and bits of unfinished peanut butter and honey sandwiches that inevitably got stuck between the couch cushions or left where we couldn’t help but step on them. Figuring out how we were going to take care of our children, remain sane, and keep the house relatively clean, as well as earn an income, took up most of our time and energy. Finding time to be together as a couple wasn’t easy, but it did make us feel young again. In fact, in trying to steal a few moments of intimate time, we often felt like teenagers trying to get away with something.

It's really okay.  Change is okay.  If we didn't have these shocks to our system to keep us awake and alert, we'd probably end up pretty boring.  It's a way to recreate our lives, renewing ourselves over and over again.  It's a challenge but a good challenge.  It's time to pick up the pieces, put our lives together, and figure out how to live in a new way. 

As we’ve gotten older, it’s been easier to make these adjustments to the various changes in our lives. We’re pros after all. We’ve been through this a lot. But the changes in our lives are a little different now. We don’t have my husband’s parents with us anymore. We miss them very much. Our sons have grown, gone to college, and come home. Our oldest son is now married and we have a beautiful daughter-in-law.  Our daughter is starting high school.  I have retired from teaching and am learning how to manage the ups and downs of my Parkinson’s disease. My husband would love to retire and he is also learning how to manage the ups and downs of my Parkinson’s disease.

And, just in case I forget that I am getting a little bit older, my doctor’s office is there to remind me. I got a call from them the other day reminding me to make appointments for a mammogram, a pap test, a well woman exam, and a colonoscopy.  Any buy one get one free specials?  I told them I'd call them back.  Then two days ago, my neurologist suggested brain surgery. 

Okay, it’s Deep Brain Stimulation surgery, the ultimate in new treatments for Parkinson’s disease. But it’s still brain surgery. I figure there’s a reason we have a hard, thick skull around our brains. We’re not really supposed to mess with anything up there. But, in the long run, this might just be what I need to do. In the short run, having this decision to make has thrown my life up in the air in little confetti bits again. I’m still waiting for them to come down.

While I’m waiting, I think I’ll have some more chocolate chip cookies. *

*may substitute glass of Bailey's Irish Creme and/or watching Eddie Izzard comedy videos