Fighting Parkinson’s, tell somebody and don’t do it alone

Fighting Parkinson’s Disease is an uphill battle. We become miserable and do not want to share our misery with others. My feeling is that this is a big mistake.

Here is my journal entry from one year ago today:

“10/01/09. It is October. Where has the year gone. Today, Sally suggested I reset the alarm for 4:30. Got up, felt no better, felt no worse. No worse is a plus and I look for the pluses. Took me 8 minutes to get going to turn on the espresso machine. Oatmeal for breakfast — great breakfast again. Had a good morning of work, so feeling happy. Lunch was delicious — dumpling squash filled with sauteed onions, brown rice and wild rice. Sally really takes care of me. Just did the kidney and liver medical Qigong. After the liver Qigong, I stand straighter and feel physically exhausted but stimulated at the same time. I get a lot of tingling inside my head and my brain aches. I feel like the Parkinson’s fights me back. However, I am very patient and intend on winning. We had Italian Wedding Soup for dinner. It was wonderful. Sally and I did the kidney and liver Qigong together. I am blessed. I do not use the word lightly. I need to do the kidney and liver Qigong to fight Parkinson’s and Sally joins me in the Qigong so I won’t be fighting by myself. She does GV acupressure on me before I go to bed. I have an absolute partner in this fight. Sally is everything to me and gives me strength to do my exercises when I have no strength or desire. I think about Steven and Genevieve and Victoria all the time. How am I going to tell them? And Dad and Mark and Allison, after watching Mom. And Sally’s Mother and Mary and Jerry. What do I say? I do not know where to begin.”

I had a partner in Fighting Parkinson’s. Eventually, we told our children and my Dad and brother and sister, and Sally’s Mother, and our closest friends, Mary and Jerry. I won’t lie. It was overwhelming. But it had to be accomplished.

I do not mean to be the bearer of bad news, but if you have had Parkinson’s for a while and you think you are “hiding” it, you are not correct. Here’s how the cycle works:

1. You are extremely self-conscious because you know you have Parkinson’s and you are hiding it.

2. As a result of #1, you act differently…face it, you cannot help this; hiding the disease is stressful and stress brings out terrible tremors.

3. People look at you as they have in the past, but now you think, “They are looking at me, they suspect something.”

4. As a result of #3, you act differently. Thinking people suspect something is wrong with you while hiding that something is wrong with you is stressful and stress brings out terrible tremors.

5. Now that you are acting differently, you think you have fooled them.

6. They know something is wrong and they know that you are hiding it. You are fooling only yourself.

What are you afraid of? What are you ashamed of? As difficult as it was to tell my children and my family and friends, it was liberating…I got to be me, disease and all. And there was an outpouring of love. There is no shame in getting Parkinson’s — it is just life. Please find somebody to tell about the Parkinson’s you have. Their love and compassion will go a long way in your recovery.

All my best,

Howard

 

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