Let’s Write a Book

Good morning, friends,

Since we are writing a book about Parkinson’s, we will begin with the diagnosis. Would you like to give some input? I would love to hear about your experiences and your responses to these questions:

  1. When you received the diagnosis, what was your first thought?
  2. What was your first question either to the doctor, or to your spouse?
  3. And what do you wish you knew THEN that you actually do know now?
  4. What is one piece of advice you would give to a couple when one has just been diagnosed with Parkinson’s Disease?

Since my blog is going through a design renovation, you may find it difficult to locate the “comment” button. If so, please email the answers to these questions to hughesgctm@yahoo.com.Thanks so much for your help in this.

Here is a little taste of chapter one:

I wish I had gone with him to that doctor’s appointment. I should have gone with him, but we had no idea that the diagnosis would be Parkinson’s Disease. That was not even on our radar. His symptoms were not what we associated with Parkinson’s (PD). He didn’t really shake, and that’s all we really knew about PD.

His symptoms seemed random to us, and we never connected the dots and came up with a picture of PD. This is how it happened.

The first two things he noticed were that when he walked his left arm did not swing per usual and his steps were becoming shorter. He noticed these things because he took public transportation part way to work each day, and from the train station he walked about a fourth of a mile on a sidewalk. He noticed the length of his steps first because the sidewalk was composed of sections of concrete, all the same size. And at first, he walked about 4 steps in each section, but over the course of a few months, he noticed he was now taking almost 7 steps in each section of the sidewalk. We talked about it one night over dinner. A few weeks later he mentioned that his left arm didn’t swing. He could make it swing consciously for a few minutes, but as soon as his focus was on something else, his arm ceased to swing.

The final symptom that sent him to the doctor was an observation I made one day as I was walking behind him. From the back, he looked like someone who had just had a stroke. He was hugging his left arm to his body, and his left leg was dragging slightly. When I walked up beside him, I said, “You’re right. Something is wrong with your left side. You need to go to a doctor!”

But neither one of us connected these symptoms with Parkinson’s Disease. And we were not prepared for the way the doctor delivered the news. He was a general practitioner who had never seen Carlton before. After listening to Carlton describe his symptoms he said, “Sir, I don’t know you, but by your description and looking at your face, I can tell that you have Parkinson’s Disease.”

When we first heard the diagnosis, we were stunned, shocked, and almost horrified. However, we didn’t realize all that it meant. In some respects, we wished we had not gotten a diagnosis, because it did change the way we were thinking. But not knowing would not have helped the situation. Having a name for the condition allowed us to focus on helping my husband. That was a good thing.

Does that remind you of when you and your loved one received the diagnosis of Parkinson’s Disease, or of some other degenerative condition? If you know someone who has been newly diagnosed, please share this with them. We’ve come a long way since then, haven’t we? And we won’t give up now. The same family, friends, and faith in God that have brought us this far, are the ones who will be with us in the days to come.

I have so much more to share with you, my caregiver friends, but I will save some things for next week! Until then know these 2 things – I am praying for you, and God is with you every moment of every day. Have a great week ahead, and thanks for reading and commenting.


Published by parkinsonscare

I'm a retired mathematics teacher, mother, and grandmother. I cared for my husband for 23 years, and now he is in Heaven. My new mission in life is to support and encourage caregivers like you!

2 thoughts on “Let’s Write a Book

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