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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.

Control Freak-y

Terri Reinhart

I admit it.  I’ve always liked being in control of my life.  I don’t want to control other people, though, not even my own kids.  They’re old enough to take care of themselves.  I certainly don’t want to control my husband, either.  He’s lots bigger than I am.  I just like being in control of me.

This is, however, easier said than done.

I want to be in total control of things like my tear ducts, my bladder, and the toes on my left foot.  I would love to be in charge of where my legs take me.  It would be incredibly nice to control how I chew and swallow and be bossy enough to make sure that the “chew, swallow, breathe” sequence remains in proper order.  It would be nice to know that when I put a pen in my hand and try to write my name, my hand will actually move towards the paper, every time, without suddenly snapping back to my chest. 

Having Parkinson’s disease and Dystonia has taught me to let go of many things, such as my self-consciousness.  Dystonia is highly visible.  In my very public job as a teacher, I didn’t have the luxury of trying to keep my physical challenges hidden.  Though it was embarrassing at first, I’m not sorry about this because I’ve learned so much from sharing with others and listening to their stories.  Keeping my health challenges private would have taken a lot of work, and I suspect I would’ve ended up feeling pretty lonely.

I thought about this when my mom was diagnosed with vascular dementia.  Vascular dementia is a horrible disease which attacks your brain and your thinking but not necessarily your body.  Suddenly, you may not remember how to work a telephone or buckle a seat belt.  You may not even remember what the seat belt is for.  Your house might look unfamiliar to you and you can’t figure out why your family won’t take you home.  It’s like that moment when you wake up from a dream and, not being fully awake yet, you don’t know for a few minutes what is real and what was dream. 

Imagine living with this 24 hrs a day, 7 days a week.  You don’t ever fully wake up.  It gets worse, too, until you may not even recognize your family.  It’s also an embarrassing disease.  You might suddenly become frightened of the people in your house and decide to run away.  You say things you would never have said when your thinking was functioning properly.  And in some small way, you are aware of what you are doing and that it isn’t right.  Not surprisingly, my mom didn’t want anyone to know about her diagnosis.

I understand this, from her perspective.  Appearance and control has always been of the utmost importance to her and Dementia robs you of just about any control you might have over your own situation.  I have another responsibility to her, however.  I need to make sure she is safe.  This means that I did tell a couple of her close neighbors what was going on.  I need to know that the neighbors will help look out for her if she decides to take off down the street.

What I found were neighbors who were willing and able to hold Mom’s health challenges with real compassion.  They even wanted to do more.  One neighbor has been bringing dinners to them.  She was thrilled to do this for my parents because her own father lives on Long Island, too far for her to be much help to him day to day.  Cooking a meal for my parents helps her to feel that she is doing her part, even in a small way.  It isn’t small, either.  Not for us!

I’ve been through every emotion imaginable throughout the last year and now, finally, I feel that I can settle and accept our “new normal”.  I’m enjoying the stories that Mom tells about her days growing up on the farm.  I love being there for my dad and I love his wicked sense of humor. 

I’ve also been totally blown away by my sister and my two brothers.  Each of them has taken a part of the responsibility.  Tom has taken charge of all the financial issues.  He knows what he’s doing and we all trust him completely.  Dave comes to town whenever he can.  He cleans the house, paints, mows the lawn, and entertains Mom and Dad with his gentle humor. Cathy came to town for a week and helped out.  She works as an Activities Director in a nursing home in California and brings this perspective.  We all keep in touch by phone and email.  Everyone has been exceptionally supportive.

Mom shared with me one day, how difficult it is to have something wrong with her brain.  She said she would rather have a broken leg any day.  In an amazing moment, she was able to express how she felt and let me know how grateful she is for my help.  It was a moment I will never forget.

I have it easy.  I can’t keep my toes from curling in or my arms from twisting up against my chest.   My legs may suddenly decide that I need to walk backwards or sideways or bump into the wall.  But I have it easy.  My thinking is still okay.

At least I think it is!