You’ve probably read in People that I’m a nice guy – but when the doctor first told me I had Parkinson’s, I wanted to kill him.
Michael J Fox
Did you feel the same way when you got your diagnosis of Parkinson’s Disease? Almost every week, I hear from someone who was recently diagnosed with Parkinson’s Disease. Many of them had a terrible experience getting their diagnosis and probably did want to kill the messenger. When the doctor said those 3 terrible words: ”You have Parkinson’s“, what they really heard was “You have an incurable, chronic, progressive neurologic disease.“ For many, that meant a not too distant future of being hunched over and shuffling, or confined to a wheelchair, shaking from uncontrolled tremors. They didn’t know who to turn to for help.
Which of these two scenarios describes your experience?
- After seeing 2-3 doctors, you finally see one willing to make the diagnosis of Parkinson’s Disease. You feel relief that you have a diagnosis, but the doctor gave you no information about living with the disease. Just a prescription and a return appointment in 3-6 months. You are in shock, scared and don’t know what questions to ask. And 3 months is a long time to wait to get answers. Now what do you do?
- You see a Neurologist or Movement Disorders Specialist who takes the time with you after giving you a diagnosis of PD to answer your questions, gives you some printed materials about PD or websites to turn to for more information and support. She tells you to exercise to slow down the progression of the disease. There is a Parkinson’s Nurse available for you to call when you need help or have more questions. Maybe you will even get referred to another person with Parkinson’s to talk to.
15 years ago, when I was diagnosed, the first scenario was all too common. There was almost no information on the internet at the time about living well with PD. My first neurologist told me that I had a Parkinson’s like tremor and put me on medication (Requip, not Sinemet). Not knowing much about PD at the time, I didn’t know what to ask about my future living with this tremor. Would it get worse? Was I going to be disabled? What could I do to feel better? So many questions unanswered.
Eventually I asked my general practioner to refer me to someone else. The Movement Disorders Specialist I saw changed my life, literally. She spent time with me to answer my questions, gave me information about living with PD and referred me to several websites that were quite helpful. And she said that the type of PD that I had was relatively slow moving and that I could live a normal life for a long time. She gave me hope – which was the most important thing of all.
Delivering the Diagnosis
Last month, a paper was published in Parkinsonism and Related Disorders, titled Delivering the diagnosis of Parkinson’s disease: Setting the stage with hope and compassion . Who was the lead researcher? My wonderful MDS who I have been seeing for almost 15 years, Indu Subramanian, MD. She and co-authors Kuhan Pushparatnam, Bradley McDaniels, Soania Mathur, Bart Post and Anette Schrag address the many challenges that come with giving a diagnosis of PD.
“The diagnosing clinician is the person who will deliver the life changing information of a disease that is chronic, progressive, and associated with numerous symptoms and long-term disability, which commonly elicits fear and uncertainty in the person receiving the news. Because of the significant emotional impact, many patients vividly remember their diagnosis and how it was delivered many years later. Being mindful of the shock of this diagnosis and how the information is delivered while considering what patients find difficult or comforting in the messaging is, therefore, the key to providing the best possible experience for patients at this crucial time.”
Unfortunately, 15 years later, things still haven’t changed much. Too many doctors, even MDS, don’t know how to give the diagnosis in a compassionate way, to give the patient the emotional support that they need at this time. I hope that this paper will be a wake up call to all doctors who treat Parkinson’s patients.
For more information for the newly diagnosed, go to my post Advice for the Almost Diagnosed.
Parkinson’s Hack of the Week
Bathtub and Shower Non-slip stickers
A fall in the shower is not a good thing. There are a lot of different non-slip stickers that will make your shower safer. Choose from whimisical patterns to transparent. From $5.99- $13.99 on Amazon.
Have a great week!
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