When Joel Morris was first diagnosed with Parkinson’s disease in 2009, he didn’t know what to expect.

“When I left the examining room, they gave me a book and said you might want to read up,” Morris says. “Since that time, I’ve obviously done quite a bit of research on my own.”

It took some investigation to figure out how the disease was affecting him. Parkinson’s disease, a progressive neurological disorder, affects movement, muscle control and balance. It can affect daily physical activities through an increase in muscle stiffness, slowness in movement, decreased size of movement, resting tremors and gait disorder. It can also impact psychological mood, facial expression, increase fatigue and decrease volume of speech.

Everyone experiences the symptoms differently, which is part of what makes it difficult to diagnose.

Morris had taken a couple of severe falls, which prompted his doctor appointment and eventual diagnosis. But tremors and balance issues aren’t his primary symptoms.

“When my medication isn’t working properly, I have trouble breathing,” Morris says. “Nobody would necessarily be aware of the fact that I’m having trouble breathing, but I know it.”

As a newly-diagnosed Parkinson’s patient, you feel like your head is swimming with information. There’s so much to learn and figure out. Morris said he’s learned these key tips from his experience so far:

1. Take the journey with other people. Morris recommends patients navigate Parkinson’s disease with other diagnosed people. It’s an opportunity for you to learn from others some things they’ve done to cope with symptoms and address concerns.
2. It’s different for everyone. The disease is unique for each individual. People need to share with each other the kinds of things they’ve done, and perhaps the kinds of things that caregivers have done, to deal with some of the symptoms.
3. Never stop your research. It’s important to recognize that there are a fair number of organizations and medical groups that are doing research related to Parkinson’s. Never stop learning about new medications and surgical procedures.
4. You may not know for sure if you have it. You may not know for sure that you have Parkinson’s, though you can be pretty certain based on the symptoms. It can also be difficult to tell where you are in the cycle of Parkinson’s unless you’ve got severe tremors and gait issues or balance issues. If your challenges are more inward kinds of things, such as breathing problems, those are a little harder to get a handle on.
5. Find a specialist. Anyone diagnosed with Parkinson’s should seek out a specialist — someone with a background in movement disorders, so they can get good medical and nutritional advice.
6. Exercise is key. Exercise appears to slow the progression of Parkinson’s. It’s important that you keep active and get exercise on a regular basis as you can tolerate it.

Morris started a support group to provide a forum for individuals with Parkinson's, family members, spouses and caregivers to exchange practical information, share experiences and access health and wellness information. The group meets from 1-2:30 p.m. on the fourth Thursday of each month at Elmhurst Hospital in the Third Floor Family Lounge.

The neurosciences experts of Edward-Elmhurst Health are skilled in diagnosing and treating movement disorders such as Parkinson’s disease. Learn more.