My 35-year-old husband has Young Onset Parkinson’s Disease (YOPD). It sucks. I’m often asked, “How’s Todd?” or “How’s your husband’s health?” or “Is Todd staying healthy?” Thank you for asking about my husband. I’m happy to say he’s doing pretty darn good, considering he has a progressive neurological disease and we don’t know what the future holds. No, he does not have dementia, a question I was asked last week. Yes, we are planning to stay in our two-story house for a while. Yes, although it totally grosses him out and he washes his hands for five minutes afterwards, Todd changes our son’s diapers.
It’s nice that people ask about my husband. Besides keeping Todd and others with Parkinson’s disease (PD) in your prayers and donating to PD research, there is not a lot people can do for us right now. But asking about him reminds us that you are thinking about Todd. Thank you.
Todd sometimes forgets things, like the year I was born, changing his son’s diaper before a four-hour flight or unlocking the car so other passengers can get in. Cognitive changes and forgetfulness are common struggles of people with more advanced PD. I don’t think my husband’s forgetfulness has anything to do with his YOPD right now, but I worry that one day he may forget things that we can’t laugh about. I think about the future changes in his cognition that can be related to PD and how they will impact our family.
Sometimes, I can’t hear Todd and get concerned PD is impacting his voice. Todd never yells or speaks loudly. Even when he is in the other room, the robot vacuum is on and the baby is screaming, Todd does not speak louder so I can hear him. Last weekend, I was on the other side of the yard, it was windy and our neighbor was doing yardwork. I only realized Todd was talking to me when I saw his mouth moving. He thought I could hear him. Apparently, he is unaware that my hearing is not as good as a wax moth (which has the most extreme hearing in the world). A soft or low voice is an early sign of PD and often a symptom that occurs when the condition worsens. I don’t think his voice is affected by his YOPD, but I still sometimes think it may be related and it makes me worried about the future.
Our son is now nine months old. Todd is a fantastic dad. Things are not always easy for him. YOPD affects both of his hands and arms, especially his right hand. I forget that changing our son Griffin’s diaper, giving him a bath and cleaning him after he eats raspberries is harder for him than it is for me. Todd still does these things daily. He never complains or gets frustrated. Well, except when our son decides to grab his dirty diaper mid-change.
Todd amazes me. He works 50 hours a week and has a long commute full of red lights and train tracks. He plays with Griffin every single day, does the laundry, helps with the house, all while remembering to take medications four times a day. He also finds time to stretch for 30 minutes twice a day and exercise several times a week, which helps manage his PD.
So, thank you for thinking about him, me and the impact YOPD has on our baby. Thank you for acknowledging that my husband has a life-long degenerative disease. Thank you for asking as part of normal conversation, not just in a whisper when Todd leaves the room. Thank you for sharing with me that someone you know has PD and telling me how they are doing. I’ll do my best to ask you about them, too.
Our plan is for Todd to be around, healthy and active for a long time. We are very optimistic. Thank you for asking about my husband.
Lori Ann Greidanus is a teacher in the Chicagoland area. In her own words, she "likes art, gardening, cooking for her boys and reading multiple reviews and summaries of movies so she does not actually need to watch them. She is attempting to follow her husband’s footsteps and exercise regularly. So far, it’s not going very well."