A while back, we met up with some old friends. It was a bittersweet time…Donna was no longer the young bride I made the wedding dress for over 30 years ago. She was still petite and shapely but she shows her age, which is close to mine. Ben isn't the strutting young man I remembered either. He's now white haired, hesitant and newly diagnosed with PD. This disorder shows up differently for each person. For many, a first noticeable symptom is tremors. But Ben doesn’t have tremors. For others, poor posture and balance are common. Ben doesn’t have this either.
But he is beginning to be forgetful. “I get so discouraged,” he says. “I read a whole page and when I’m done, I can’t remember what I read.” Then he grins, “But I can still run!” He seems to be as physically fit as his wife. I wonder if he’s been misdiagnosed and actually has DLB, dementia with Lewy bodies. It can start with symptoms like this instead of movement problems. They said that he’d been pretty bad…couldn’t even dress himself before changed doctors. The new doctor changed his meds and now he’s much better. How often we hear this! Those PD drugs can really do a number on a person’s thinking abilities. I can’t help wondering what he’d be like if they decreased his PD drugs he’s on now, or even stopped them entirely. Maybe he wouldn’t be able to run anymore. But maybe he could remember what he read…
Ben can still speak clearly and easily but he says, “I’m losing my voice—it’s a lot softer than it used to be.” He’s been attending Big and Loud classes and says they help. I also notice that his facial muscles are not allowing him to be as expressive as I remember either. He credits Donna with his successes. “She keeps me moving,” he says. “We walk the dogs several miles a day,” she says. She adds, “He’s right. I make him do it. I know he has to keep moving.” We gave them both kudos for the great exercise program they have going and reminded then that the exercise is as good for the mind as it is for the muscles.
Donna says that several years ago, Ben traveled to his sister’s funeral and came back "a different man." More like he is now. Ben talks about his last job, which was very stressful followed by that trip which had also been a stressful time filled with family dissention. “Did all that stress cause the PD to show up?” he asked.
“No, but it might have made it happen sooner,” I answer. Our bodies are very efficient at fighting off a lot of things that we aren’t even aware of. Adding a certain amount of stress actually makes them work better. We function better with a bit of challenge. But when the stress becomes greater than we can handle, it becomes destructive. That is, it becomes a priority and the body’s resources go to trying to managing the stress instead of other functions, like fighting off unwanted intruders, diseases, and the like. Age does the same thing as the body wears down and can’t be as efficient anymore. And so Ben would probably still have developed PD, but the stress may have hurried it along. Ben and Donna work now to keep stress at a minimum.
“Ben sleeps a lot,” Donna confides. I reassure her that this is normal...living with PD, or DLB for that matter, is hard work. And they are still quite social, going to church, Ben's men’s group, out with friends, and such. Each of these events is likely to bring on a bout of Showtime, (where he appears better than he is at home with just Donna) and this takes a lot of energy too. Later, though, I wondered if he might be depressed. Several times he voiced his unhappiness with having PD…not unreasonable feeling. No one WANTS this baffling disorder! Depression due to the news that one’s golden years aren’t going to be what was expected is a common reaction. Sadly, depression is also be a common Lewy body symptom. We suggested that Donna and Ben talk to his doctor and ask about some safe anti-depressants. There are some that usually work fairly well with the Lewy body disorders.
My friends are managing well, or at least as well as they can with this confusing disorder. Jim and I encouraged them again to follow up on the depression issues and to continue with their physical and social endeavors. We added that Donna needs to find a support group and she agreed to work on this. I hope she does. Like most caregivers, she is less diligent about her own care than she is about her husbands. Maybe we should have caregivers for caregivers!
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.