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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.

Filtering by Tag: Parkinson's cure

Pray for me? Let me think about it.

Terri Reinhart

I'm not embarrassed by my Parkinson's. I don't want sympathy because of it. I don't generally say much about it, but when an old classmate of mine was taken aback after I told her I was retired, I was suddenly self conscious. Not wanting her to think I had retired because I didn't want to work, I told her it wasn't my choice, I had left teaching after I was diagnosed with Parkinson's disease. 

She looked at me earnestly, put her hand on my arm, and said she was sorry. I was confused at first. Sorry I was retired? Oh. That's right. I have Parkinson's disease. She asked if she could pray for me. 

It was my turn to be taken aback. Not that I have anything against prayer. There is a lot I question about religion and spiritual matters, but holding an individual in warmth, interest, and love is not something I question. Whether or not there is a God listening in and acting on their prayers is secondary.

Regardless, I have not always been comfortable with the Christian idea of prayer. When our daughter did so well in the NICU after being born at 28 weeks gestation, a colleague told me she was sure Emma was doing well because so many people were praying for her. Something in me snapped. And... the little girl who died in the NICU the day before? Did she die because not enough people prayed? I know all the standard Christian responses to this and I still struggle with it.

For now, I have my own request. If anyone wishes to pray on my behalf because I have Parkinson's disease, please do not ask God to cure me. I do not want a miraculous, magical cure. You're welcome to ask God to nudge the researchers in the right direction for a scientific cure. A miraculous, magical cure would only affect me. That's not fair. If there is a cure to be had, it should be for everyone. I'm sort of a spiritual socialist.

I stumbled around before answering my old classmate. Yes, of course she could pray for me. I just wanted her to realize I see my Parkinson's as much as a gift as anything else. There are so many people I wouldn't have met, so many things I would never have been able to do, and so much I wouldn't have learned if it I didn't have Parkinson's. Those of you who read my blog know this already. I hope she will forward a message of gratitude with her prayer.

On the other hand, my husband has become an expert in the Heimlich maneuver. I'm not sure he looks at this as a gift, so... if anyone is listening up there, I could use a little help with the whole chew, swallow, breathe thing. 

(I'd even take the magical miracle cure for this one.)

A Magic Wand?

Terri Reinhart

As a first step, any ‘cure’ would have to stop the spread of the dysfunction in PD brains, so it would have to arrest progression. Brains do ‘heal’ through making new nerve cells and incorporating them into existing networks, but the healing process is slow. Potential ‘cures’ may include therapies that accelerate the healing processes, although it is likely that the first ‘cures’ would arrest progress and not reverse the disease or make symptoms go away entirely.
— Dr. Rohit Dhall

I have lost track of the number of ways I've been told my Parkinson's disease could be cured. The stories generally come from well meaning friends or friends of friends about someone they know, or someone a friend of theirs knows who was cured of their Parkinson's disease by taking a certain supplement, or drinking an herbal tea or following a special diet. Often people are offended when I don't jump to try the new sure-cure they've suggested. After all, so-and-so tried it and they've been symptom free ever since!

When we go to our doctors, we tend to expect them to have miracle cures, too. Antibiotics were, and still are, miracle drugs, even as we know more about the downside of overusing them. Sinemet (carbodopa/levadopa) is a miracle drug for Parkinson's which has allowed those of us with PD to function. We've come so far with modern medicine, we've become impatient. We really want a magic wand hey presto throw your crutches down and dance kind of cure.

I would be happy with this first step, described to me by Dr. Rohit Dhall. This is enough for me to know. It's exciting to think there may be a time when PD will not be progressive. Even if it's not in my lifetime and it's not totally cured, halting the progression of the disease would be amazing. Levadopa, after all, was a throw your crutches down and dance kind of cure for the time. When it was first given to Parkinsonian patients in 1961, people who were bedridden were suddenly able to walk and run and even jump. (History of Parkinson's Disease)

Dr. Rohit Dhall is the Director of Clinical Studies and Movement Disorders Specialist at the Parkinson's Institute and Clinical Center in Sunnyvale, California. He recently took 45 minutes of his time, precious time to a busy neurologist, to talk with me on the phone about the issues of Parkinson's Dementia and Parkinson's Psychosis. During our conversation, I asked some questions about a cure. The answer he gave, which I have quoted at the beginning of this article, was reassuring to me.

Perhaps because he wasn't promising a miracle, magical cure, it sounded like it might actually happen some day.