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. Her journey with PD began in 1976 when her father passed away from kidney failure. Her father’s autopsy revealed PD, although not symptomatic at his passing. Between 1976 and 1982, Marie watched her two uncles’ lives decline, deteriorate and eventually pass away from PD. It was difficult for her to watch them wither away to skin and bones at the end. And now, Marie’s greatest fear growing up, that her brother would succumb to PD, has become a reality.
Marie recognized her brother’s PD on a trip home to Guam in 2007 while her mom was on her deathbed. Knowing that his health was declining Marie decided to bring her two children to visit Guam in 2011. During their 10-day visit, she decided that they would stay at her brother’s home so her children can have memories to cherish of their uncle. Marie spent quality time with him although he had already begun to withdraw; she was still able to spend time she knew she would never experience again. Every moment, whether laughing or in intellectual conversation would be the last. Marie saw her brother moving more slowly and shuffling, choking more often and taking 10 seconds to process a thought, Marie knew what was going on. Later in 2012 when Marie’s brother ended up in the hospital when he fell and hit his head, the medical professionals diagnosed him with stage four PD. Marie’s greatest fear. Goodbyes were difficult as it was goodbye in the literal sense. Never again will he ever be the same.
Marie struggles with how to help her brother from so far away. She knows he is depressed, but he and his family have accepted the disease and are treating it holistically. He takes dopamine which is helping him. Her brother, a once bright, intelligent and successful businessman, is now trapped in his body which is extremely challenging for Marie and his family to accept. Although they try to give him the best quality of life in the moment, expectations and acceptance of what is, rather than what was, slowly remains to be achieved. He just returned from a month long stay in France with his family. They are trying to make the most of what remains of her brother’s zest for life. She knows he prefers to be in the comfort of his home, and they would like to embrace fond memories of times together, which is all they have now.
Marie tries to help from a distance. “I know they don’t want me to tell them what to do or how to handle things. So, on my weekly calls I ‘suggest’ options and advice. I talk to his wife about the possibility of using thicken liquids. I suggest that they take the time to let him mentally process things and to speak without finishing his sentence. I take my time talking to my brother even if only for 10 quality minutes, his advice is precious to me and he always worries about my well-being. I ask him how he is doing, he replies, ‘todu mauleg’, translated in the Guamanian language to mean ‘all good’.
“There has to be a way to help,” Marie said.
So Marie volunteers at the Struthers Parkinson’s Center in the day program, Club Create. If she can’t be by her brother’s side, she can help someone with PD at Struthers.
“One time I was gone for 3 weeks and came back to find out that one of my PD friends had been moved to a nursing facility. I cried,” Marie said. “I see wives when they drop off their husbands at Club Create. One gentleman was well established in the medical community. His wife makes sure he is well dressed and looks awesome. He is still proud of his appearance. I can see that his wife is there for him and will love him no matter what.”
Marie also volunteers at the silent auction fundraiser put on by the National Parkinson Foundation Minnesota.
“I can’t take care of my brother and help him through his PD journey on Guam. But I can take care of someone here. It’s my way of taking care of my brother.” This July he celebrates another year of life. She is blessed to have his presence in her life.
Story written by Susan Gangsei, author of The Light in the Middle of the Tunnel – Harrowing but Hopeful Stories of Parkinson’s Family Caregivers
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.
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.