Understanding Your Diagnosis of Parkinson’s Disease

I had gone 2 years and had not been given a diagnosis. Thus, waiting 5 more months to meet my new movement disorder specialist (neurologist) finally seemed almost intolerable, but it was the usual wait period.

My neurologist was a young and very kind-hearted physician, eager to work with me. Upon our meeting, I gave him a typed 2-page document describing my symptoms and medical events and occurrences in my life these past few years. He carefully read the letter and circled and underlined some words and sentences.

After several minutes of reading, he said, "I have good news and bad news to give you. The good news is I can explain everything that’s happened to you over the past 2 years. The bad news is that you have Parkinson’s disease."

I had done enough searching by "Dr. Google" over the past several months, so I was not surprised by his diagnosis. For whatever reason, I was relieved. Parkinson’s disease (PD). Importantly, my disorder had a name, and it had potential therapy.

My neurologist's statement

Sitting in my new neurologist's office, he began dictating and describing our meeting. It went something like this:

"The patient is a 59-year-old male diagnosed with idiopathic Parkinson's disease. His presenting symptoms included a stiff right-side neck, stiff right hand, and bradykinesia. In addition, he had anosmia, dysphagia, and spasmodic dysphonia. His right leg drags slightly when walking (the patient noted it got worse when overly tired). He has a resting tremor in his right hand/forearm. The initial treatment is to start the patient on ropinirole (dopamine agonist). Eventually, he will be switched to carbidopa/levodopa. Schedule a follow-up appointment in 6 months."

What is health literacy?

Health literacy is a real issue for many people. Health literacy is the ability to obtain, read, understand, and use healthcare information to make appropriate health decisions and follow instructions for treatment.¹

I have 3 degrees, BS, MS, and PhD. I worked and taught at a major medical school for almost 40 years. Yet, hearing these terms for the first time was challenging to comprehend and easily confusing. And think about it another way; you will be expected to explain your diagnosis to your spouse/partner/family when you get home.

My neurologist printed a copy of his just dictated statement and handed it to me. I said, "Wait a minute, can you take a moment and explain some of these terms?" He looked at me, sat back down, and said, "Yes, ok." He defined the many medical terms and further discussed my condition. It was the beginning of my Parkinson's education.

What if you don't understand information the doctor shared?

It would be best to leave the doctor’s office with some understanding of your diagnosis. Do not be afraid or embarrassed to ask questions because it is your health you are learning about. It is not your responsibility to know or understand anything beforehand about your diagnosis of Parkinson’s. It is your neurologist’s responsibility to explain it to you.

Questions to ask during an appointment

What questions should you ask during a neurologist's appointment to ensure you and your doctor are on the same page? Below are a few suggestions. However, your circumstance may require a different set of questions.

• What should I do in the immediate future to manage this disorder?
• Am I contagious?
• Is this genetic, and do my children have it too?
• You said it was chronic and progressing. What do you mean by progressing symptoms?
• Is this considered a disability?
• Do I need to retire from my job or cut back time?
• Are you sure it is Parkinson's disease?

Resources at the neurologist's office

I left the neurologist’s office with 2 publications from the Parkinson’s Foundation:

• "Parkinson Disease: What You and Your Family Should Know"
• "Parkinson's Disease: Speech and Swallowing"

Both pamphlets were informative, well-written and with good intentions. From my latest visit with my neurologist, the Parkinson’s Foundation has a lot of handout material, including, "Living Your Best Life," "Sleep," "Caring and Coping (A Care Partner’s Guide)," "Cognition," "Psychosis," and more.

Hopefully your neurologist has a social worker in their practice who can help educate you further about Parkinson's. Furthermore, they will hopefully give you contact information for a local support group focused on Parkinson's. If not, do a quick Google search for such a support group. They are most helpful in giving you an up-close and personal view of your new disorder.

Helpful books

These books made a huge difference in my understanding of Parkinson's. Each of the books below has outstanding support for those with Parkinson's. These authors have an excellent way of presenting and describing Parkinson's and the various available treatment options.

Each book guides others who help and care for those with Parkinson's. And they were written with a voice that made me truly admire the author because they cared for people with Parkinson's.

• The New Parkinson’s Disease Treatment Book, by J. Eric Ahlskog
• Navigating Life with Parkinson Disease, by Sotirios Parashos, Rose Wichmann
• What Your Doctor May Not Tell You About Parkinson’s Disease: A Holistic Program for Optimal Wellness, by Jill Marjama-Lyons, Mary J. Shomon
• Delay the Disease - Functional Fitness for Parkinson's, by David Zid
• Parkinson’s Treatment: 10 Secrets to a Happier Life, by Michael S Okun MD
• Parkinson’s Disease For Dummies, by Michele Tagliati, Gary Guten, Jo Horne

These books encouraged me in my understanding of Parkinson’s. They brought Parkinson’s out in the open and gave me a sound foundation for the drugs I may take to treat my Parkinson's. Importantly, they gave me a positive feeling of hope for the rest of my life.

Educational websites

Online sites are also a good source of information for educating oneself about Parkinson’s. There are many sites to choose from. In addition to ParkinsonsDisease.net, and here are just a few others:

• Parkinson’s Foundation
• The Michael J. Fox Foundation
• Brian Grant Foundation

And there are many different blogs on the internet, from personal to university/medical school, to organizations. You can find these by searching on Google.

The benefits of educating yourself

Likely, before you went to the neurologist, you had time to explore and play "Dr. Google." There is nothing wrong with that; plug in your symptoms and ask for a diagnosis. One subtle warning, if you have any swallowing defect, "Dr. Google" may decide you have ALS (Amyotrophic Lateral Sclerosis or Lou Gehrig's disease), which has a grim outcome.

If you entered most of your symptoms, you would likely encounter Parkinson's in this search. But hearing it from your neurologist differs from reading it off a computer screen. The key is "identifying" and naming the disorder as Parkinson's allows one to start receiving treatment and support.

Take charge of your health

Receiving a diagnosis of Parkinson's is a life-altering situation. It is depressing news, but it gives you something to learn about. It answers the many unanswered questions you have had about your health.

Now is the time to educate yourself and take charge of your health. Your life is beginning a new chapter, a new phase. It will be a different life, but you are still you, the same person as before you had Parkinson's. Never forget you have much left to offer life, so start learning about Parkinson's and keep living.