There’s no easy way to manage other people’s reactions when it comes to Parkinson’s. After all, following a Parkinson’s diagnosis, you have your own emotions to deal with – not those of others. A few common sentiments from people with Parkinson’s include, but are not limited to:
“It can be painful to go out and do things.”
“I just want to be alone.”
“I feel like my personality and priorities have changed.”
Maybe you were an extrovert, always on the go, but now you’re, as one person so astutely stated, “Finding the motivation to socialize hard.”
Let’s talk about the four things to keep in mind when talking to your loved ones about Parkinson’s.
1. It’s a complex disease.
Some people hear Parkinson’s and think that it just means you’ll experience slight shaking and some unsteadiness on your feet. If it were only that simple.
Parkinson’s can affect your vision, mood, sleep, speech, ability to swallow, and even stand up quickly. It’s so much more than tremors but that is how the media has often portrayed it. You may have heard of Still, a documentary about Michael J. Fox, which is a more robust presentation, yet there are few other media portrayals of Parkinson’s.
The truth: Parkinson’s is a neurodegenerative and progressive disease with various and differing presentation. Parkinson’s is characterized by motor, cognitive, and behavioral symptoms and treatment is not as simple as taking a pill. The disease’s progression can be slowed with consistent exercises but there is no known cure. However, people with Parkinson’s can improve their quality of life with medications and exercise.
There are even two different ways in which Parkinson’s can be divided: a tremor dominant PD and a non-tremor dominant PD. Researchers think there may be a genetic component, but only 15% of people with Parkinson’s reported having someone in the family with the condition. There are stages 1-5 that delineate how the disease progresses. For helpful visuals of symptoms and stages, please click here.
Speaking of Michael J. Fox, this brings us to our second thing to keep in mind.
2. Everyone’s experience with Parkinson’s is different.
Michael J. Fox was diagnosed at age 29 ,which is early onset Parkinson’s. He also has the best access to research and treatment in the world. Parkinson’s will look very different depending on what stage a person is in and many other factors. Your friends and family may have only seen people in earlier stages, i.e. people with slight tremors. Undoubtedly, the way Parkinson’s presents will look different depending on lifestyle, the amount of support the person has and the treatments they have elected (or not elected) to partake in.
You may not want to share what stage you’re in, or your individual symptoms of the disease. It’s helpful for your loved ones to acknowledge and respect this reality and how you wish to manage the information available to them. If the person with Parkinson’s lives alone, offering to accompany them to appointments or at least drive is a helpful idea.
3. You may have a change in personality and priorities.
Executive functions in cognition are higher-order mental processes and include the ability to plan, organize, initiate and regulate behavior. Your friends and family may notice involuntary behavior such as “pilling” where a person with Parkinson’s appears to be rolling an imaginary pill between their fingers or sees a thread on a piece of fabric that is not there.
The prefrontal cortex of the brain and the dopamine system are responsible for executive function and are affected by Parkinson’s so they will notice changes in what you focus on, or in some cases are fixated on.
A person with Parkinson’s has less dopamine and because of this they may become more introverted and less willing to take risks for a thrill.
Other common personality characteristics include being ambitious, industrious, serious, single-minded, rigid, slow-tempered, and wanting to avoid harm.
In addition, some medicines you take for Parkinson’s could also have an effect on your personality.
4. Parkinson’s is not all you want to be known for.
Or the only thing you talk about for that matter. It;s important for people with Parkinson’s to focus on the positive and to keep active. Your loved ones need to be available but not to treat you with kid gloves. Hopefully, friends and family will encourage you and even join you in physical activity to slow down the progression of the disease.
After determining how you want to discuss it with others, ask your partner/caregiver to help you share your Parkinson’s diagnosis with other people. Always specify how and if you want the information shared, i.e. email, in person, or in a mass text.
For example, if you do not want the entire office to know about your diagnosis, ask your work friends to keep the information private. You may want to tell an entire group of people about your diagnosis, or you may want to talk to people one at a time. It’s your choice to make.
Just as your own adjustment and processing took some time, your family members and close friends may also need some time to process the information. Give them time to ask questions, and be sure to express your hopes and plans for the future.
If you were a very self-reliant person before diagnosis, that likely hasn’t changed. Your loved ones know this about you but they will still want to help you with tasks. It’s helpful if they remember that specificity is key. Offer to cut your grass or clean gutters if these are the tasks you normally do around the house. Another idea is for people to sign you up for a meal delivery service or gift cards so the question of “What;s for dinner?” does not take over your day that might be busy with appointments and beset by bouts of fatigue.
Family and friends want to understand what you’re dealing with and for that, we’re grateful. Please share this article with anyone whose loved one has been diagnosed with Parkinson’s or any life altering diagnosis.
Parkinson’s Pointe offers fitness classes and social opportunities for people with Parkinson’s AND their loved ones. Our care partners section of our website breaks this down in more detail and allows you to sign up for future educational seminars, fitness classes and social gatherings. We look forward to meeting you in person or ONLINE.