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One road with yellow road sign showing greenery; another path with red road sign showing desolate trees.

On the Road Not Taken

"Two roads diverged in a wood, and I took the one less traveled by. And that has made all the difference." - Robert Frost

Each person with Parkinson's has a different story to tell. Some are diagnosed immediately, others take years.  Our symptoms and rate of progression will vary. So do our medications. It can be so overwhelming, especially when you have just been diagnosed. 

I like to tell people to talk to more than one person with PD because no one's story will be the same as yours.  As in Robert Frost's famous poem, "The Road Not Taken," each of us will have to make a choice. We can be passive and give up or do everything that we can to live well with it, recognizing that there is no one right answer for all of us.

Looking back at early signs

My story took a circuitous route at the beginning. I was fortunate that it took less than a year to get the right diagnosis, but that first 6 months was a nightmare!

This January marks 11 years since my journey with Parkinson's disease began officially. I say officially because it was the first time I saw a neurologist for my tremor, which had started several months before. Looking back, the noticeable symptoms probably began about a year before that. 

Little things would happen, such as my right foot would start shaking when I was writing. I would "shake it off" and it would disappear for a few weeks. But it always returned unexpectedly. After I fell, in the beginning of August 2008, and broke my left ankle, my right foot started twitching again on a more regular basis. 4 months later I was diagnosed with breast cancer and the twitching got worse.

Insomnia was another clue

In January 2009, I had surgery for breast cancer, a negative brain MRI, and a visit to a neurologist. What a month! Fortunately, the only treatment for the breast cancer following surgery was 6 weeks of radiation. One of the benefits of the radiation is that I slept well for the first time in years! 

That was another clue to my PD diagnosis - I had insomnia for many years prior to this. We know now that insomnia is one of the first symptoms many people with Parkinson's experience. Unfortunately, it can also be a symptom of many other conditions, so doctors usually do not diagnose PD based on just insomnia.

The specialist who diagnosed me

When I started on this journey, I did not know much about PD other than one of my father's friends had it and he fit the old model of the disease. Shaking and hunched over, shuffling when he walked. The first neurologist that I saw that January told me I had a Parkinson's-like tremor and gave me almost no information. I walked out of his office knowing little more than when I went in. 

When I finally came out of my radiation fog 6 months later, I switched to a movement disorders specialist, which changed my life.  She made the diagnosis, changed my medication and gave me brochures and websites to check out.  At the time, there were only a few websites specific to Parkinson's and a handful of blogs to check out.

Which road would I take?

I now needed to determine which road I was going to take on this journey. Recognizing my strengths, I chose information and exercise. Once I started reading about Parkinson's I was able to tackle it head-on. 

I learned about the different symptoms, progression, latest treatments, and outcomes. Knowing more gave me the power to advocate for myself, and then for others. Where did this knowledge come from? Some from books, but mostly from the internet.

An informed and connected community

In the last 10 years, there has literally been an explosion of information available on the internet. The number of Parkinson's organizations' websites has increased, with most offering webinars and the latest research

The real change, however, has been the number of PD bloggers. 10 years ago there were just a few. Today, well over 200 bloggers are out there writing about PD, from a patient or care partner's point of view, from most of the PD organizations and researchers, and of course, from those trying to sell you a cure. There seems to be something for everyone. In addition, because of my blog, I have become an advocate for women with PD and have met many wonderful people from many different countries.

This is the road I chose

As far as exercise is concerned, I had been a gym rat for most of my adult life and worked out with a private trainer for about 10 years. So I kept exercising and reading about exercising.  I increased the number of days I worked out, discovered boxing and yoga, ride a Peloton bike, and continued to play tennis.

The road that I chose to follow is definitely the right one for me. The progression of the disease has been very slow for me, and for the most part, I have not had to modify much in my life. My husband and I have traveled the world and will continue to do so for as long as we can.  We enjoy spending time with our 4 fabulous grandchildren, family, and friends. That's not so bad after 11 years of living with PD!

 

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