“My husband had impeccable table manners and even abhorred others that gulped down their food and otherwise expressed poor table etiquette. Now he does things at the table that are downright embarrassing. If I try to correct him, much like a child, he gets offended and angry. But I can’t just let him destroy the table and its contents.”
—ANONYMOUS, PARKINSON’S CAREGIVER
People with Parkinson’s report the number one challenge to living well with the disease is stigma. Because of this, those with PD are particularly vulnerable to withdrawing from their favorite activities and adopting a less physically active lifestyle. Also, the loss of dopamine in their brains impacts their self-efficacy (their belief that they can succeed at an activity), which can lead to anxiety, depression, and fatigue.
As the disease progresses, it can be hard for a person with PD to be in public. It took some time before my mom was able to stop thinking that people were looking at her like she was a freak, with all the moving and shaking she did. Also, my mom would often have trouble walking through doorways and experienced a sudden shutdown of her body. This often attracted attention from others and was emotionally disturbing for her.
As their caregiver, try to ignore any unwanted attention your loved one may be receiving. Though it may be hard for both of you at first, over time you will develop ways to deal with different social situations.
Sometimes when Mom and I were out shopping, I would tell the salesperson about her having Parkinson’s. Each time I did, we received nothing but help and empathy. You may or may not choose to do this, but I have found that most people are afraid of what they don’t know, so helping them to understand a bit about Parkinson’s helps.
Eating out can also be challenging for a person with PD because they can have trouble holding onto cutlery or cups. Several times my mom ended up embarrassed and upset because she couldn’t stop dropping things and spilling food at the dinner table. Even among friends, she often found eating very emotionally difficult.
A couple of things we did to help Mom feel less embarrassed while eating out was to carry a pretty scarf and a clip that we could attach to her shirt (a fancy bib) and bring our own utensils that were easier for her to grasp.
Social isolation can be a problem for those with PD, and as a caregiver you need to pay attention to your loved one for signs of withdrawal. Social connection is an essential part of your loved one’s treatment, and helping them feel needed can make a huge difference in their life with PD.
Dr. Laurie Mischley, a naturopathic physician who runs a clinical practice for people with Parkinson’s out of Seattle, has been conducting a study to determine the key factors in the progression of PD. Out of all the data her team has looked at so far, answering yes to the statement “I am lonely” is the single biggest predictor of Parkinson’s progression.21
If your loved one is able, there are several ways you can help them feel needed. You can encourage them to participate or volunteer their time for a Parkinson’s function (e.g., Parkinson’s SuperWalk, Pancakes for Parkinson’s), volunteer for their church or favorite charity, or sign up for a class (art, music, language, etc.) that meets every week. My mom volunteered once a week for her local Alzheimer’s association (her dad had the disease) in the early stages of her PD and found that to be very fulfilling.
Another thing you can do to promote socialization and exercise at the same time is to encourage your loved one to join a specialized exercise class such as Rock Steady Boxing, Pedaling for Parkinson’s, yoga, or tai chi class. If you really want to be supportive, consider joining in with them! Group classes offer new social connections, can help your loved one overcome barriers, and increase their quality of life all at the same time.