For the next few weeks, we are featuring some of our favorite blogs from years past. This entry was first published by In Care of Dad on February 10, 2011.
by Amy Pavia
Denial is easy to come by with a Parkinson’s diagnosis. It’s not like the punch in the face that a stroke or a cancer diagnosis might deliver, where you’re forced to deal with it and make critical life and death decisions right away. It’s more like the threat of a slowly approaching storm on a clear, sunny day.
Symptoms of PD can sneak up on you and, at the beginning, can easily be blamed on something else like “my knees are getting bad with age” or “I keep tripping; I’m such a klutz!” As the disease process unfolds and symptoms worsen, often gradually, people may still be reluctant to admit something is wrong and seek treatment. It may be friends, family members, or other caregivers who are most able to see the affected person’s decline. Expressing concern is often difficult and can be a set-up for conflict and defensiveness.
Even after a diagnosis, it can be hard to accept what’s coming. People may go through a range of emotions, including fear, frustration and hopelessness. Many may even become clinically depressed. And since even experts can’t accurately predict how quickly each individual’s PD will progress, it can be a source of low-grade, chronic worry for patients and their families.
But what is most terrifying about PD, that it is a chronic condition that often progresses slowly, can also be something of a gift. Unlike acute illness or injury, PD offers an opportunity to plan and make adjustments now while your parent or loved one is able minded and bodied. Families often have time to do extensive research to find the right practitioner, thoroughly investigate treatment options and modify the affected person’s lifestyle and surroundings to improve quality of life moving forward.
It takes a huge amount of courage — and support — to anticipate the extreme decline in mobility, balance and even cognitive function that your loved one may experience over time. Here are some suggestions for ways you might offer your support and help at the outset.
- Finding a neurologist who specializes in movement disorders is key. As soon as PD is suspected, you can begin to do research to find the right doctor for your needs. Try not to worry too much about whether that doctor is local. You can always travel a bit to get an evaluation and treatment options and then carry out a plan of care locally moving forward. And, as with any type of medical condition, getting more than one opinion can really help.
- Be present at as many doctor’s appointments as you can to listen objectively, take notes and be a supportive presence.
- Try not to limit your range of treatment options to medications alone. While there are several that can be effective in many patients, doctors will tell you they are not without side effects and are not always the answer, especially in the early stages of PD.
- Look into physical therapy and make sure to find a PT who specializes in movement disorders. From the very early stages of PD, regular therapy can improve flexibility, mobility, gait, and balance and is often covered by insurance.
- Talk to the doctor about starting a regular exercise regimen. Various kinds of regular exercise like walking, cycling and tai chi can be physically beneficial and can improve mood as well. Call your local hospital or senior center to look into organized classes designed for people with PD or other movement disorders.
- Think about exercise for the mind. Even if your loved one doesn’t show any signs of dementia or cognitive problems, they may benefit from doing things that challenge them mentally. Crossword puzzles, sudoku and other brain teasers can be useful and fun.
- Help your loved one prepare for physical decline by helping them make changes in the house. From suggesting small layout changes to considering a move, it is so very valuable to plan ahead. The progression of the disease may be slower or faster than you think — isn’t it better to make changes proactively than having to be reactionary when the house no longer works for the person with PD?
- Remember to focus on emotional needs as much as physical ones. The person with PD may need emotional support from family members, friends, clergy or mental health providers along the way. And as a caregiver, you may need the same kind of support or outlet for your own intense feelings. Be willing to seek and accept help not just for the patient, but for you, too.
- Take the initiative to educate the rest of the family or close friends about PD. Talking about the diagnosis openly and trying to anticipate ways to address problems or changes in function before they occur can be empowering for relatives who may feel helpless. Also, it can be reassuring for the PD patient to let someone else play the role of informer.
There is no doubt that a diagnosis of Parkinson’s disease can be difficult. As you gather information and try to navigate the new world of challenges and care providers ahead, you will likely find yourself worrying about how you can manage it all and how you can best help your loved one get what he or she needs. It’s tricky walking the line between trying to suggest planning ahead for some of the physical limitations that a loved one will face while maintaining a respect for the person’s independence and sense of self. And I have learned from personal experience that the range of emotions felt by both the person with PD and that person’s loved ones can run the gamut from shock and fear to frustration and sadness, to name a few. But I’ve also learned that gentle, loving and consistent guidance, as hard as it is to give and receive, can make everyone’s experience with PD a little easier.
The following was written by Amy Pavia, an RN and close friend of ours. Amy’s father was diagnosed with Parkinson’s disease five years ago.
Photo was taken by Peter Capuciati.