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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.

Drink up your veggies!

Terri Reinhart

Some of my journal articles apply to anyone. Most will be appreciated more by people with Parkinson's disease or other chronic disorders. That's okay, because there actually is a purpose to these articles besides giving me the opportunity to write and find something fun and funny in this journey. This is one of those times when I'm writing specifically to people with PD, with a chronic illness, someone who cares for a person with a chronic disorder, and anyone who occasionally finds it a challenge to eat, swallow, and breathe.

I've had the Heimlich maneuver done on me five times. Four of those times, it was my husband who saved my life. The first time, approximately 15 years ago, it was one of my teacher colleagues and, I think he may have stopped shaking by now. The experience was more traumatic for him than it was for me. My husband has more experience and, frankly, he really doesn't want to do it again. (...though I trust he will, if necessary.)

In the interest of making life easier for my spouse and living to a ripe old age without resorting to eating nothing but applesauce, yogurt, and ice cream, I have worked on these guidelines for healthy eating. They work for me (so far) and may be helpful for others, but may not work for everyone. That's my disclaimer - one of those legal things I have to say.

The foods which are most likely to cause me to choke surprised me. They include:  lettuce, green beans, broccoli, bread, celery, salad dressing (vinegar), meat, sugar, and water.  This poses a dilemma. How do I get the required green veggies in my diet when I'm terrified they may kill me? I could do as my parents have done and substitute ice cream for green veggies. It isn't the healthiest, but it's not generally lethal. How do I drink enough water? What do I do?

Here's my plan:

1. If I have a salad, it's got to be naked. No dressing. Combining lettuce and vinegar is too much for me to handle. 

2. Watch my timing. If I eat a salad or meat at lunch, I'm much less likely to have any problems. By dinner, however, I'm tired and have to be ultra careful.

3. Juice fresh veggies! Lots of fresh veggies. Add plenty of greens until it tastes like freshly mowed grass and I start to moo. Add some carrots so it doesn't look too green. Add an apple for a little sweetness. 

4. Save the pulp. There's a lot of good vitamins and fiber in that pulp. Why throw it away? I put it in soups, chili, muffins, and various sauces. 

5. With PD, we often crave sugar, especially when our dopamine levels start to drop. I have been battling this one for years. So far, I've had limited success as my battle plan goes something like this: "Please don't bring any sugary stuff in the house. You know I'm not supposed to eat it. If it's here, I'll eat it...and, by the way, don't forget the chocolate chips.'

6. Eat slowly, peacefully, chew well. Don't eat when I'm angry with someone. Don't try to talk and eat at the same time.

7. Put my chin down when I swallow. This advice came from a speech therapist. It really helps. 

8. Learn how to do the Heimlich maneuver on yourself... OR.. don't eat alone. If I go out to eat with someone, I make sure they know the Heimlich maneuver. 

9. Keep applesauce, yogurt, and ice cream on hand, just in case you can't eat anything else. 

10. Keep this website handy:  Bea Arthur and Unicorns teach you the Heimlich maneuver

At times like these, I'm grateful I'm older and have been married a long time. I wouldn't want to be dating now. It wouldn't be cool to have to explain all this to my date. I'd probably frighten him away before we even got to a restaurant.

If anyone else has suggestions as to what has worked for them, please feel free to add them in the comments.