Jean Spielman Housh is young, only 52 years old. She married an “older man” now in his 70’s. He was diagnosed with Parkinson’s disease (PD) six years ago. That means that Jean’s husband, Al, is still functioning relatively independently. But the reality of what Parkinson’s is going to bring is starting to appear on a regular basis. Al has difficulty walking, has times of forgetfulness and impulsiveness and he has the Parkinson’s face.
Jean is a very capable person. She held a responsible corporate job until recently. She finds and utilizes PD resources for herself as well as her husband. She maintains a strong set of friends she enjoys and with whom she can vent when necessary. From an outside perspective Jean seems to be managing a tough situation very well. In fact, she is a survivor of brain surgery and breast cancer. Jean knows how to get through rough times.
But Jean still has a lot of questions, and at times wonders what the future will bring.
Where is my husband in the PD process?
How fast will things progress?
How many times will my husband fall before he hurts himself?
How will I handle the finances and medical bills?
How long can I keep my husband at home?
How can I prevent my husband from doing impulsive things like standing up in a boat or riding his bicycle down a busy street?
Will I be able to handle the next “emergency”?
What do I do when…….
Jean said, “No one can predict the future or prevent things from happening. But most people are able to tuck any questions and fears into the back of their minds and move through the day, taking it as it comes. But when your loved one has a chronic condition, life takes on a different dynamic. It is scary. You know that the illness is only going to get worse. The fear can no longer be tucked away after a certain point. These questions and more present themselves when you notice what the disease is doing to your loved one on a daily basis. It is scary to think of what is coming.
“In a cosmic sense I’ve been chosen to do this. And God will give me what I need. And if that’s not true, I am going to be pissed,” said Jean.
Then Jean told a story about the weekend after her husband’s Parkinson’s had been confirmed and she had learned that she had breast cancer. They had headed to church in the lake community they visited on weekends when they went to the cabin. Jean and Al had arrived late for the first service and decided to stick around and be early for the second service. Before the second service began, they ran into a couple with whom they were acquaintances. As the four of them were talking, Jean and Al found out that the other gentleman had just been diagnosed with Parkinson’s and that the woman had just gone through surgery for breast cancer. In fact, Jean and the woman had the same surgeon.
Jean finished telling this story by saying, “No one can tell me that there isn’t a God. God put those people there because that is who we needed to be with at that moment. I found people who understood the fear I was feeling. I at least had company on the journey.”
Jean has found a way to deal with the “scariness” of her life.
“There are good days and bad days. I vent and swear like a sailor,” she said, but Jean also receives the help she needs, when she needs it.
Story written by Susan Gangsei, author of The Light in the Middle of the Tunnel – Harrowing but Hopeful Stories of Parkinson’s Family Caregivers and Stuck With It, Not In It: Redefining Life with Parkinson’s Disease
Life is bittersweet for Steve Snater. He is living with his parents so that he can be a caregiver for his father, who has Parkinson’s disease (PD). “It sucks in every way,” said Steve. “But it is wonderful that I can be there for him.
Ashley and Justin Remus live in New Ulm, Minnesota, a farming community about 100 miles southwest of Minneapolis. They’re keenly aware of the lack of information and awareness about Parkinson’s disease (PD) in small towns and rural areas. In fact, they lived this lack when Justin’s grandfather was diagnosed with Lewy Body, a variation of PD, in 2007 and passed away in 2011. “It took three to four years for my grandfather to be properly diagnosed,” Justin said.
As so many others, Marie Dydasco - Walch has to “watch” her brother’s Parkinson’s disease (PD) progress from afar. Marie is from the Island of Guam and that is where her family still lives.