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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.

Turbo Hamster

Terri Reinhart

I had an awful dream the other night.  It wasn’t anything tragic or scary or weird.  In fact the scariest part for me was that the dream was terribly ordinary.  My family was doing what they do.  Chris was doing yard work and making trips to the hardware store.  Patrick was working on his computer, learning a new program, and Emma was out with the chickens.  And I was going crazy.  I was flipping back and forth between being okay and then suddenly getting over emotional.  I was frustrated with everything my family was doing or not doing and somewhere inside, though I would never admit it, I was sure all of this was their fault. 

Was this really a dream or did someone videotape me over the last few weeks and find a way to play it back to me while I slept?  It all looked way too familiar. I dismissed this quickly.  It must have been a dream because I’m a very together person and I handle everything in my life, both the bad and the good, in a very together and reasonable way. 

I will admit that I’ve been doing a little bit too much lately and my Parkinson’s and Dystonia are both a wee bit out of control right now.  It’s not that bad.  True, when I made dinner the other night, I ended up juggling forks and dancing backwards across the room …and my walking has deteriorated to the point that I purchased a walker, but that’s just because I’ve been preoccupied with other things.  I’m a little bit busy right now, that’s all. 

I’m not really that busy.  I’m just taking care of my family and my parents, trying to finish up a few projects, take care of the chickens, ducks, and geese, and still have time to spend with my husband, kids, and grandson.  I’m not stressed, either.   When I’m tired and don’t have the energy to do what I need to do, I just feel guilty.  That gets me going again.

Guilt is a good motivator.  It pushes me to work too hard, feel lousy about what I do, and then feel lousy about everything I didn’t do.   Being a most efficient motivator, the guilt builds up and up until I do even more and feel even lousier, and then I crash and have to spend a few days in bed, or mostly in bed, as I feel guilty when Chris is doing the housework and cooking, and I feel guilty not spending enough time with him and the kids.  My friends, I’ve been ignoring altogether.  I’m a lousy mom, lousy wife, lousy daughter and lousy friend.  It must be something I’m not doing, right?

I’m on the hamster wheel again.  This time, I’ve become the TURBO HAMSTER!


I get thrown off from time to time and land flat on my face.  My reaction to this is perfectly normal.  I blame my husband.  WHOA!  This makes me feel even guiltier, so I work harder and try to do something special for him to make up for the fact that he’s been living with a madwoman for the last month.   Yup, there’s nothing like guilt to get you going.

This is the most efficient way to go crazy, too.  That’s not necessarily in my plans but after watching that videotape dream the other night, I realized I am heading in that direction.  Damn.  Is there any way I can keep running on the wheel without going crazy?  I didn’t think so.

One option, of course, is to get rid of the hamster wheel.  That’s easier said than done.  If I had become a gerbil instead of a hamster, I’d simply turn it into confetti.  Life is simple for gerbils.  If it tastes good, eat it.  If it doesn’t, chew it up.   My life isn’t going to be less busy in the next few months.  Getting out of the cycle of guilt/overdoing it/crashing/more guilt/more overdoing it/more crashing/more guilt is not going to be easy.  As I’ve said lots of times already, guilt is very efficient at motivating me to get things done.

I’m going to try.  I owe it to my family and friends.  I’m going to take the advice of my friend, Ed Sikov:

“Take each day for what it is - a day, that's all. I really do believe in that way of thinking and feeling and living now. Yes, of course - I get upset and disappointed too - a lot - but I'm learning to soothe myself by remembering that the sun will rise again the next day and the day will be brand new and fresh and all its own, open for me to do what I can, and accepting of me if I can't do much of anything.”

Ed has Parkinson’s disease, too, so he understands what I’m going through.  I know what he’s been through.  If he can do this, so can I.  Ed’s also a film historian and film critic.  That videotape dream (or was it on DVD?) wouldn’t get very high ratings from him.  My day by day goal will be to make sure the next dream/film is one he’ll enjoy.

Lights, camera…breathe!