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parkinson's disease

diagnosed with parkinson's disease: managing support, treatment and staying active

slow down and listen to what your body is saying. but in the same breath, i don’t let it control me. i have parkinson’s, but it doesn’t have me.

by karen hawthorne

published apr 01, 2024

9 minute read

join the conversation

9 minute read

join the conversation

ideally, a neurologist will lead your parkinson's disease care team. some patients may also be candidates for surgery to help with the motor complications of the disease. getty images

bryce perry was sitting on his couch in his winnipeg home when he noticed a twitch in the pinky finger on his right hand. he had no idea what it was and thought he might be drinking too much coffee. when it kept happening, he realized he was also starting to feel stiff all the time and generally slowing down. “it was concerning, but i thought it would just go away,” he says. he was only 38 years old. that was the beginning of a two-year journey of multiple tests and referrals to specialists. he mentioned parkinson’s disease, a neurogenerative disease where the brain cells that affect movement stop working properly, to the first neurologist he saw. the neurologist told him he was too young to have it – it was ‘just in his head.’ (the average age to develop symptoms for parkinson’s is 60. about five to 10 per cent of canadians diagnosed are under 40, and a significant 20 per cent are under age 50.)

“i’m thinking this is in my head, so i’m going crazy, that’s the worst. i just want to know what this is. as time went on, i’d wake up in the morning, my toes would be curled up, and i felt like i was 100 years old.”

perry was the general manager of a large auto parts company and had three kids at home, so when he was finally diagnosed with parkinson’s in 2010 at age 40, it was a relief and a shock. he had to grapple with the fear and vulnerability that comes with a chronic debilitating disease that gets worse over time. “all this stuff went through my head. like, am i going to see my kids get married? am i going to die? what’s going to happen to me?”

he stayed at his job for another 10 years, but coming out of the pandemic, he knew he couldn’t keep up mentally or physically with the required pace. at the same time, he started to work with parkinson canada to share his experience in webinars and interviews to raise awareness and funds for the charity, which is dedicated to supporting people affected by parkinson’s disease and critical research. now, perry is the charity’s associate director of community outreach and engagement, a role that is an opportunity for him to help inform and support others because he’s been in their shoes.

as he explains, “i got involved on the resource and information side because i realized that when you get diagnosed with this life-changing disease that’s progressive and has no cure, you don’t know where to turn. you become a keyboard warrior, hitting up google to get answers for things. parkinson canada has programs and services and we’re here for you. here are some trusted, proven resources and here’s what you can expect.”

don’t be afraid to ask for help

reaching out for help and support is an important step forward. as perry says, “in the early days, it’s really hard, you’re overwhelmed. you get this sense of isolation, so people need to know that they’re not alone.”

a formal diagnosis can take months or years of dealing with unexplainable symptoms. there are no x-rays or tests yet to confirm parkinson’s, so a neurologist would review medical history, do a physical examination, conduct specific tests, and rule out other conditions that may resemble parkinson’s.

connecting with parkinson canada will give you numerous resources, peer support groups, and access to a team of trained referral associates who can answer questions and link you to support services in your area. for help, call 1-888-664-1974 or email support@parkinson.ca. the live helpline and email are also available for caregivers and healthcare professionals.

there’s a lot to understand about the disease and how medication must be adjusted over time as symptoms change. it’s also challenging because every parkinson’s experience is different, with symptoms and progression varying for each person, so there’s no one-size-fits-all treatment plan or exact outline of what to expect.

the most common symptoms are:

tremors
stiffness
impaired balance
rigidity of muscles

those aren’t the only symptoms, though, and numerous others can include:

difficulty swallowing
drooling
bladder dysfunction
sexual problems
depression
cognitive changes that affect speech and memory

perry says new patients usually call the organization for information and resources on how parkinson’s will impact their lives. “but they’re also looking for emotional support and guidance to process the diagnosis and, again, what does that mean for the future? it’s an isolating disease because when you think of parkinson’s disease, you think of this person shaking out of control, and you start thinking, can i go to a restaurant? can i do anything? yeah. maybe i don’t want to embarrass myself or the people i’m with.”

parkinson canada offers a comprehensive free introductory guide to understanding parkinson’s, developed with the mcgill university health centre patient education office. the guide describes the disease, the changes to note in your body over time, treatment and care options, possible health problems, and when and where you can find more help.

connect with your parkinson’s care team

about one in every five people in canada wait a year or more to see a specialist to get a formal diagnosis, and most specialists are based in urban centres, so there are access to care barriers, says parkinson canada. while a diagnosis can be a shock, it’s also a green light to plan and get informed about programs and services that will help build confidence and better health.

parkinson canada recently launched carefinder, an online, vetted database of healthcare providers, programs and services across canada that people can search for by their town or postal code.

parkinson’s symptoms are treated with medication to help you function and perform daily activities. but, as the disease progresses, symptoms like shaking and stiffness may worsen, the risk of injury from falls increases, and swallowing can become more difficult. drug doses and combinations are typically adjusted by your specialist over time, making the relationship with a knowledgeable parkinson’s provider so important, notes parkinson canada.

ideally, a neurologist will lead your care team. some patients may also be candidates for surgery to help with the motor complications of the disease.

other therapies can also help manage the symptoms as they change and progress:

physical therapy helps mobility, flexibility and balance
occupational therapy helps with daily activities
speech therapy helps with voice control
exercise helps muscles and joints and improves overall health and well-being

again, because the symptoms and progression will vary from person to person, living with parkinson’s requires a tailored, holistic approach that addresses all aspects of your day-to-day.

here are members to consider for your care team:

neurologist who is ideally a specialist in movement disorders who decides on treatment and adjusts medication
family doctor who is knowledgeable about parkinson’s to provide ongoing care and annual physical exams
parkinson’s nurse specialist who works with the movement disorder specialist to provide information on how to manage your condition
psychiatrist or psychologist who can help with depression or cognitive abilities
physiotherapist to make assessments with mobility, balance and posture and offers techniques on how to move safely and enjoy regular exercise
occupational therapist to assess the living and working environment for safety and function and suggest devices that can help maintain independence
speech language pathologist to improve voice projection or swallowing difficulties
dietitian to plan a healthy diet, maintain the ideal weight and help with dietary issues caused by medications or symptoms of slowness and stiffness. research, according to a review article in frontiers in aging neuroscience, suggests that weight loss and even malnutrition that can come with parkinson’s may impact disease progression and disability.
social worker to help with financial and family concerns and accessing local resources and services
other professionals who may help with care are pharmacists for information on medication and drug reimbursement plans and urologists who can address urinary problems or sexual functioning for men.

be an active participant in your treatment plan

“parkinson’s disease not only affects the individual physically, it also has significant emotional, financial, and social impacts on families,” notes perry. “the cognitive disease, the unseen symptoms, are probably some of the most difficult. and the journey with parkinson’s is highly personable. you’ve got to embrace that flexible approach to care and support to manage your challenges.”

he adds that staying proactive about your treatment plan and having conversations with your healthcare providers and peers through knowledge and support networks can transform your experience from one of uncertainty and fear to hope and active management.

“i want everybody to realize that there’s hope. this diagnosis is not a death sentence. there is hope, there is a future, and you change your mindset, adjust your lifestyle, you can live a long productive life.”

drugs for parkinson’s work on the brain’s complex chemistry and may need to be taken several times a day. levodopa has been prescribed for decades and remains the first-line drug treatment for parkinson’s. however, the ability to manage the fluctuating response to levodopa and pair it with other medications to improve its effectiveness has changed. surgical therapies have also improved symptoms, like deep brain stimulation, where electrodes are inserted into a targeted area of the brain to generate electrical impulses to control movement.

there have also been advancements in how drug therapy can work for patients – with a pump, for example, that infuses medication through tubing surgically placed in the small intestine. newer pump technology provides the drug through skin patches and gel treatments.

most important, experts advise using medication as prescribed and do not alter doses without consulting your doctor. parkinson canada also provides a resource, the pd nms questionnaire, to help people have meaningful conversations with their healthcare team about non-motor symptoms, and the canadian guidelines for care professionals to identify and manage the disease.

stay active for better outcomes

adopting healthy lifestyle habits can help boost mental and physical health in parkinson’s. the mainstay in these efforts in exercise is considered as “important as taking your medications on time, every time. exercise helps to maintain strength, flexibility, balance and cognitive acuity,” reports stanford medicine.

a new pilot study by yale school of medicine reveals that high-intensity exercise protects the brain and has the potential not just to slow down but possibly reverse the neurodegeneration linked with parkinson’s.

for perry, who played hockey, soccer, and baseball growing up, giving up his love for golf, which he’d developed as an adult, was hard. “that first five years after diagnosis, i was avoiding golfing and doing other things because i was more tired and sore afterwards.” he started physical therapy and began routine exercises to stretch and keep moving, which was a boost.

he now recommends finding movement you enjoy, like yoga, dance and group classes specific to parkinson’s, to get active and social. check out parkinson canada’s exercise and wellness resources.

there is also a need to accept that your parkinson’s may change your abilities and work to build on what you have going.

“you realize that some days are not good,” perry admits. “you have to understand that, and accept it, and slow down and listen to what your body is saying. but in the same breath, i don’t let it control me. i have parkinson’s, but it doesn’t have me.”

reach out to parkinson canada for more information. healthing.ca would like to hear from you! share your own experiences navigating the canadian healthcare system with parkinson’s.

karen hawthorne

karen hawthorne worked for six years as a digital editor for the national post, contributing articles on health, business, culture and travel for affiliated newspapers across canada. she now writes from her home office in toronto and takes breaks to bounce with her son on the backyard trampoline and walk bingo, her bull terrier.

diagnosed with parkinson's disease: managing support, treatment and staying active

slow down and listen to what your body is saying. but in the same breath, i don’t let it control me. i have parkinson’s, but it doesn’t have me.

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