themighty logo

5 Essential Tips for Anyone Just Diagnosed With Parkinson’s

If you’ve recently been diagnosed with Parkinson’s disease, allow me to welcome you to a new stage in your life that can have many positive aspects. I know that sounds strange, but I’m serious. As a newbie, you stand a good chance of benefitting from all of the recent research on seeking a cure for Parkinson’s and/or improved control over the symptoms. In addition, the world of Parkinson’s patients, doctors and researchers is filled with amazing and inspiring people you’ll be glad to know.

Did you have trouble getting an accurate diagnosis? This is true for many people, including me. In 2012, the neurologist I saw misdiagnosed me with multiple sclerosis. My primary care physician told me to visit some other neurologists and movement disorder specialists to get a second opinion.

When it became clear to everyone that I had Parkinson’s, the response from the movement disorder specialists was surprisingly nonchalant. “When you’re 90 years old, you may need a wheelchair,” two separate movement disorder specialists told me in an upbeat way. One of them added, “You drive a car on New York City streets, and it’s a stick shift? That’s amazing – and it’s more than I can do!” They weren’t treating the fact that I had Parkinson’s as something only negative.

What advice can I give you at this time? Here are some pointers:

1. Most importantly, start an exercise program.

As fellow Parkinson blogger Ben Stecher writes: “The only thing proven to prevent or slow the degenerating brain is a healthy lifestyle and plenty of exercise. Though the optimal ‘dose’ is unknown, the trend lines seem to indicate that the further these factors are pushed, the better the results.”

Since you are recently diagnosed, I assume you can likely still walk about. If that’s the case, start walking longer and longer distances! And/or join a gym and take spinning classes or yoga or, if you can afford it, work out with a personal trainer. Sign up for the nearest Rock Steady boxing class, which was created exclusively for Parkies and does not involve actually hitting someone – but it produces remarkable results. If you can’t walk, seek out online and onsite exercise classes you can do while sitting.

In 2013, the Lancet (a prestigious peer-reviewed medical journal) analyzed over 100 studies that looked at the effect of physical exercise on people with Parkinson’s. Much of the article was highly technical, but you can read my review of the benefits of different kinds of exercise the Lancet article covered.

2. Stay socially active.

Now is not the time to stay home and mope! Continue seeing your current friends and family, and try to find out if there’s a good Parkinson’s support group near you. (Note:  if you do attend a support group, but find that the discussions focus only on despair, look elsewhere!) You can also become active online by joining one of the many Facebook groups devoted to Parkinson’s. There are so many blogs written by Parkies where you can read an article and then post a question or response. I’d suggest starting out with Ben Stecher and the Perky Parkie and branching out from there.

3. Keep your mind engaged by reading – especially reading books.

Of course, you can read anything you like, such as the award-winning article you’re perusing right now. (Joke!) A recent article in Reader’s Digest reports on research that found that reading whole books, which forces your brain to take in and tie together huge amounts of information, stretches your mind and helps you ward off cognitive decline – an issue all of us Parkies face.

In particular, the Reader’s Digest article discusses a study conducted by researchers at Yale University:

“To understand why and what each of us can do to get the most out of our words, start by asking the same question the Yale team did: What is it about reading books in particular that boosts our brain power, whereas reading newspapers and magazines doesn’t? For one, the researchers posit, chapter books encourage ‘deep reading.’ Unlike, say, skimming a page of headlines, reading a book (of any genre) forces your brain to think critically and make connections from one chapter to another, and to the outside world. When you make connections, so does your brain, literally forging new pathways between regions in all four lobes and both hemispheres. Over time, these neural networks can promote quicker thinking and may provide a greater defense against the worst effects of cognitive decay.”

4. Listen to music and, if possible, dance, play or sing yourself.

The Michael J. Fox Foundation’s website has an excellent overview of the power of music for Parkies. Here’s an excerpt – but make sure you go to the website to read the whole thing:

“Researchers have investigated the brain changes that occur when listening to and playing music. The emotional experience of hearing music can increase the release of dopamine — the brain chemical lacking in Parkinson’s disease. People with musical training have better memory, executive function (planning, problem solving, organizing, etc) and visuospatial perception (ability to determine the relationship of objects in space). While playing music, multiple different areas of the brain are activated and in the long run, this leads to an increase in the volume and activity of the corpus callosum — the bridge that allows communication between the two sides of the brain.”

5. Stay upbeat.

In many ways, you have a choice as to how you respond to your Parkinson’s diagnosis. I suggest opting for the sunny side of the street. For example, I’m a big fan of the Perky Parky blog, and I always check out the Facebook page “Parkinson’s ‘Laugh with Me’ Group,” which is exclusively about humor. And for an article written by a Parkie that causes many people to laugh outright, check out “Have You Lost Your Mind?“ by Michael Kinsley.

Once again, welcome to the new stage in your life. Surround yourself with exercise, friendship, music and literature, and you should be fine for the longest time.

Follow this journey on Parking Suns

Getty image by Ridofranz