Ask the Advocate: How Can You Comfort a Person With Parkinson's?
A Parkinson's disease (PD) diagnosis can be overwhelming, but you do not have to face it alone. We asked our ParkinsonsDisease.net advocates, "What’s something a friend or family member did that has comforted or helped?" For caregivers, we asked, "What are some ways to help or comfort someone with Parkinson’s?"
Here is what they had to say:
See past the Parkinson's
"When people see through the Parkinson's nonsense and treat me like I’m still good old Dan, I’m at my best. Of course, I have to add the obvious statement that my wife and family love and support me.
Complimenting my advocacy efforts is always a good thing. If I think about growl stuff, either I’m oblivious, don’t care enough to let it affect me, or it’s not an ongoing issue. Reframing the negativity of my psychological testing took the sting out of that, but that’s a longer, different story." –Dan Glass
Talk about the condition
"A long-time friend was angry when I first informed her that I had been diagnosed with Parkinson’s. Strangely, that made me feel good. She was defensive on my behalf, which gave me comfort. I knew she would continue to be there for me through the years.
She does not treat me any differently than before and periodically invites me to share an in-depth PD update, especially about things going on that she cannot see but senses are burdensome.
We talk. We laugh. We are comfortably quiet. I always know she’s cheering for me to keep winning, 1 victory at a time." –Lorraine Wilson
Create a safe place
"I don’t claim to understand what it’s like to live with PD. I just want to give my dad a safe place to talk about his struggles without judgement or frustration.
I began writing about Parkinson’s because I wanted to encourage him to open up about his day-to-day journey. I’ve been surprised by how much he has to say about it! Hugs are helpful. But listening has always been my go-to comforting strategy, because it seems to be the most effective way to bring my dad comfort." –Mary Beth Skylis
Perform a small gesture
"My closest friends, a couple that my spouse and I have known for over 30 years, have performed small gestures. We often have dinner parties together and when they host, they will pull 1 of their cars out of the garage and park it on the curb so that there is space for me to park and not have to walk very far to their door.
I did not ask them to do this, which made their act of kindness and consideration so appreciated. Another time when I was experiencing episodes when I couldn’t walk due to dyskinesia, they rented a wheelchair and delivered it to my home.
Again, I didn’t ask them to do this. These gestures are small but have made me realize how grateful I am to have friends who are there for me." –John Bennett
Offer to drive
"My sweet and dear friend Janet is a Godsend – I am not sure what I would have done during the early stages of my disease without her help and constant reassurance. She is proof that things always happen for a reason.
We met when her husband, who had young-onset PD, became my first Parkinson’s patient in the town I now live in. Because of the friendship that developed over the years as her husband’s physician, she immediately offered to help me navigate the disease, having become an expert herself.
She became my right hand, taking me to doctors’ appointments and chauffeuring me around since I was unable to drive. She has also become my best travel companion." –Maria De Leon
"When I am feeling down about my Parkinson’s, my husband is always the first to remind me how well I am doing 12 years after diagnosis. To him, my diagnosis was never a deterrent to doing anything we want to do.
He keeps everything in perspective for me, even if I don’t want to hear it at the time. He is also very aware of when my energy level will suddenly drop off and will remind me that I need to eat something to recover, or if I need to just stop what we are doing and go home. He knows my limits and respects them." –Sharon Krischer
Work as a team
"There are so many strategies for helping someone with Parkinson’s. Since some days with PD can be particularly challenging, I do my best to point out small accomplishments as a reminder that even when things are difficult, you can notice your successes.
I think it is especially important to show gratitude for things my loved one does. I try to thank him at night, just before bed, for things he has done to help me. I feel that it is important for me to share how thankful I am for his efforts.
My approach to being a care partner has been to be a team player. From the beginning, we agreed to help each other. Help isn’t just physical, it is mental and emotional, too! This team approach is another way that we can comfort and help one another." –Angela Robb
Help find a doctor
"I was extremely lucky! At a time in my life, just when I needed to find a new neurologist, a friend of a friend made an introduction to a neurologist (a Parkinson’s disease movement disorder specialist) halfway across the country.
This amazing man changed my life and helped me to balance my medication regimen. Had it not been for my series of friends who made the introduction for me, I really don’t know where I would be today and what my condition might be. I feel extremely fortunate!" –Karl Robb
Have you or your loved one had issues with medication timing?