When Parkinson’s didn’t stop our Anne Frank House tour
My caregiver experience won't let me take things like walking for granted
Some of life’s greatest blessings are the ones we don’t even notice. For instance, I’m typically unaware of how natural it is for me to walk, talk, and get myself dressed and fed. Or how about the little conveniences, such as taking my cellphone out of my pocket? How about scratching an itch? Or removing my credit card from my wallet?
Unless you’re familiar with Parkinson’s or diseases like it, you might never notice the challenges of completing simple, everyday tasks. You probably just assume your body will perform for you without fail. And that’s a normal assumption to make.
But I’ve come to realize how I’ve taken so many things for granted. Because I’m a caregiver for my husband, Arman, who’s the early-onset Parkinson’s patient in our family, I see life through a rare lens. I notice all the things I can do that Arman, who was diagnosed in 2009, has to struggle to match.
As a child, I read Anne Frank’s diaries in the book “The Diary of a Young Girl.” I’ve dreamed of seeing the place where she and her Jewish family hid during the Holocaust. Our son, Jake, is studying in Europe for the fall semester, and we decided to meet with him in Amsterdam, home of the Anne Frank House. This trip presented the perfect opportunity for me to tour that hiding place.
From my research, I was aware that the Anne Frank House, now essentially a museum, wasn’t accessible to anyone with walking or mobility challenges. Understandably, making it accessible would be impossible without compromising the authenticity of the space.
Because of this, I booked an informational session before the tour so Arman could learn about the history, just in case he couldn’t see the actual space where the Frank family hid. Because of the unpredictability of his Parkinson’s symptoms, we have difficulty anticipating what he’ll be able to do at any given moment.
Taking on the tour
After the moving educational session, Arman was positive that he wanted to tour the house, too. He was feeling good at that moment, not too fatigued, unsteady, or off-balance. Jake and I looked at each other and forged ahead, knowing that we had to make this happen for him.
Jake explained our situation to members of the museum’s helpful staff. They wouldn’t be going with us on the tour, but told us to call for help if we had any issues. I wondered how they’d hear our calls or how they could even help, but the gesture was kind.
The stairs were terribly steep, and one set was actually a ladder. I felt nervous, fearful that this was a bad idea. But once we got started, there was no turning back.
I stayed directly in front of Arman while Jake was behind him. Jake is a strong young man, and if his dad wavered at all, he was ready and able to catch him. But Arman was coping pretty well with the challenge. While each set of stairs seemed to get taller and narrower, we didn’t give up.
With a huge sigh of relief, we finally made it to the top. Arman was able to enjoy the house just like everybody else, which was as exciting for me to see as the museum. The stairs leading back down to the lobby were fairly typical, thankfully.
We celebrated afterward with a special treat of authentic Dutch pancakes, as Jake and I are equally in love with anything filled with sugar.
Moments like this one remind me (and my children) how important it is to embrace all the things we can do. I wake up every day feeling grateful for my body and its abilities, and I realize that’s a privilege.
As for Arman, he often reminds me of his wonderful philosophy: He doesn’t let what he can’t do tomorrow ruin his day today. He never gives up and keeps a positive attitude through it all. Anne Frank is certainly one of my heroes, but Arman is one of them, too.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.