Q: People have commented that I do not seem like I have Parkinson’s Disease because I do not shake. How can I handle these insensitive comments?
A: Parkinson’s Disease includes many symptoms beyond the most well-known one, the tremor. About 25 to 30 percent of people with Parkinson’s never develop a tremor at all.
Many people experience symptoms that are less visible to others, especially early on. These may include balance issues, changes in handwriting, slow movement, rigid muscles, gait changes, or speech difficulties.
Parkinson’s Disease is a movement disorder of the nervous system that progresses over time. Symptoms often start slowly and initially may not be noticeable to other people. When you disclose to others that you have this diagnosis, they may not always respond in the most appropriate way.
People often feel unsure of what to say and may try to downplay your disease to make it not seem so bad. Saying that you do not look like you have Parkinson’s without the tremor may be their way of trying to make you feel better, by pointing out that it is not noticeable.
Unfortunately, these comments, while often well intentioned, can feel invalidating or rude. It is important to remember that you do not need to justify your symptoms to anyone. You get to decide what boundaries to set, and it is not your responsibility to educate everyone else about the disease.
Responding to comments like these is a personal choice. You can choose to see it as an opportunity for engagement to educate about the disease. But how you respond may depend on your relationship with the person. To an acquaintance who you do not have a close relationship with you may simply want to say, “Parkinson’s effects everyone differently.” Then you can change the subject or say, “I prefer not to discuss my symptoms.”
If the comment comes from a friend or someone you want support from, then taking the time to talk about it more can help with future conversations.
You might say, for example, “Some people do shake, but my symptoms show up more in my balance.” You can share only what you feel comfortable discussing.
You can also suggest reputable websites if they would like to learn more about the disease, such as the Parkinson’s Foundation or the Michael J. Fox Foundation.
These resources offer reliable information, useful guides, and recorded seminars on the topic.
Prioritize your feelings and only share what you want to share. Make sure you have supportive people in your life who understand your needs. Many people find comfort and validation through Parkinson’s Support Groups.
Senior Concerns holds a Parkinson’s Support Group on the first Tuesday of every month from 2:30 – 4pm at their office in Thousand Oaks. It is for both the person with Parkinson’s and their care partner. You can learn more at https://www.seniorconcerns.org/programs/support-groups/ or by calling 805-497-0189.
There is also a support group held at VC Neurofitness on the 3rd Tuesday of the month from 10 – 11:15 am at Reality Church in Ventura. You can learn more at https://vcneurofitness.com/parkinsons-support-group or by calling 805-300-7749.
Remind yourself that you are in control of how you respond and how much you share. Humor can also be a great way to deflect insensitive comments. Thinking ahead about how you want to respond may make these moments easier to handle. You get to decide who to surround yourself with and who to share personal information with. Seek additional support if needed and take care of not only your physical health, but also your emotional well-being as you learn to live with and manage this chronic disease.
Martha Shapiro can be reached at Senior Concerns at 805-497-0189 or by email at mshapiro@seniorconcerns.org.
