Walking In Someone Else's Shoes

It’s difficult enough to walk in my own shoes sometimes- literally and figuratively. I can get a rock in my shoe which hinders my walking or life throws me a curve, as we all experience.

It came to mind that maybe if I tried to understand what it was like walking in someone else’s shoes, especially someone with Parkinson’s disease (PD), a spouse/partner, or a caregivers’ shoes, then I really would better appreciate what life is like for them.

The Parkinson's perspective

My father Steve, a retired dentist, has been living with Parkinson’s and dementia (for about the last 2 years). Ironically, he was able to successfully practice as a dentist without a tremor. He developed a twitchy finger a few years later and then was diagnosed with PD.

He has shared that the hardest part was getting a proper diagnosis. It took 2 doctor visits to get the firm PD diagnosis and that it wasn’t just an essential tremor.

Dad had no known symptoms up to this point at age 72. We realized later that he had loss of smell and active dreams/nightmares for quite awhile, which I learned are common symptoms of PD before diagnosis.

Open discussions

He is open to talking to others about having PD. He believes that if you are not up front about having PD then it makes it harder in the long run. However, when you tell others, some can relate and others cannot.

My dad’s advice would be to find a doctor you feel comfortable with and don’t hide anything in your report of symptoms when you have an appointment.

He has relied on his sense of humor to get through each day. And one bit of advice he's mentioned about shoes: find a pair that are easy slip-on shoes – Dad has a pair of Kizik shoes that are great!

Challenges as a spouse

My parents have been married for 62 years. My mom has her own health concerns. Luckily, she can still maintain a relatively normal level of activity and she still drives.

For her, the hardest part of dad’s diagnosis was not knowing anything about the disease except for Michael J. Fox. My parents knew 1 person at church who had PD but didn’t know her condition very well. Her symptoms were very physical compared to my father who has more cognitive issues.

My mom’s encourages others to be informed about Parkinson’s disease by reading a lot and asking questions from your doctor. Mostly, she believes you have to think about the person with Parkinson's as a different person, but still accepting where they are.

The caregiver experience

My dad now has 3 different caregivers from 9 AM to 9 PM most days of the week. We have been blessed to have good and qualified caregivers who have worked with other people with Parkinson's.

One of his caregivers shared that each person with Parkinson's has been very different. She worked with a client who had progressive supranuclear palsy, a Parkinsonian-like condition, who did not have the ability to move. Compared to other clients who had both physical and cognitive symptoms, my dad has mostly cognitive issues.

This caregiver mentioned the hardest part for her is to witness the physical aspects of PD such as pain that can be associated with PD and the loss of independence.

Working together

She believes communication is key to working with the client and with the family. Acceptance with the PD diagnosis is first and foremost for everyone involved.

When the person with Parkinson's is in denial, then they can easily get frustrated. They may be less apt to work at staying active and healthy.

It’s important the family is supportive to the person with Parkinson's. They must learn that they are a different person and accept where they are.

Gaining insight

All in all, by having conversations open with others I gained new insight into walking in their shoes- how each member of the Parkinson’s family fits together to support each other.

Or as an unknown writer wrote: Before you start to judge me, step into my shoes and walk the life I’m living and if you get as far as I am, just maybe you will see how strong I really am.