early-onset parkinson’s disease: 'this disease can affect anyone despite age, race and gender'
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manon day was diagnosed with early-onset parkinson's at 27 years old.
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manon day was 17 when she started experiencing symptoms of parkinson’s disease. over the next decade, she fought tooth and nail to have her voice heard.
“i consulted several neurologists over the years, but none of them were able to diagnose me correctly. they didn’t believe me and accused me of being a drug addict. i felt completely abandoned by the healthcare system,” day said.
she spent the better part of 10 years trying to cope with symptoms of parkinson’s disease and desperately searching for someone, anyone, who could help figure out what exactly was going on in her body.
“i had numerous fainting spells (orthostatic hypotension), trouble moving, rigidity, bladder dysfunction, stuttering, and slowness of movement,” day said. “i didn’t know what was afflicting me. i was worried.”
when she finally received her official diagnosis at the age of 27, day said she was “completely shocked” to develop a disease that, up until then, she thought had only affected older adults.
unfortunately for many young people, developing early-onset parkinson’s disease is a reality. angelica asis, vice president of research with parkinson canada, has seen through her work how many people are afflicted by the disease well before the typical age of onset after 50.
“about 10 to 20 per cent of people who live with parkinson’s develop symptoms before the age of 50. so, this is what we consider to be called early onset,” asis said.
when it comes to the symptoms of the disease and its progression, developing it well before your golden years can change the entire trajectory of your life.
“people with early onset pd often have unique additional considerations when it comes to their care, such as their careers, their family, parenthood, and some of the financial burdens associated with the management of their parkinson’s,” asis said.
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day is one of many young people who have experienced these devastating effects firsthand. “i was stunned but relieved i had my diagnosis. i knew it was going to be life-altering. i couldn’t pursue a career or have kids. i take a lot of medication. i adapted to my new reality,” she said.
what is early-onset parkinson’s disease?
parkinson’s disease, which can occur at any age, is a progressive disease that affects the nervous system. it develops when nerve cells in the brain start to degenerate, leading to cell death. when specific vital cells die off in the brain, it can cause harmful changes that affect movement, speech, and other areas of health.
for the disease to be considered early onset, it has to develop before the age of 50. since many people see parkinson’s as something that only affects older adults, the idea of dealing with such a debilitating disease early in life is lost on those who are lucky enough not to have to experience it.
“young onset is rare. being a visible minority, having this disease at such a young age is very exceptional. my neurologist once told me my case is very unusual,” day said.
for people like day, who has been sick for her entire adult life, dealing with parkinson’s and the symptoms that go along with it is her reality. she has to contend with “stiffness, slowness, stuttering, hypotension, and bladder dysfunction” every single day.
the myths surrounding parkinson’s disease
many people hold the notion that parkinson’s disease only affects a small group of people, particularly older adults of caucasian descent. and while that may be true in some cases, other age and ethnic groups are not free from its hold.
“our understanding of how different populations are affected by parkinson’s is still really understudied, and that makes it difficult to know if certain groups are experiencing higher rates of early onset or pd in general,” asis said. “there are a lot of initiatives that parkinson canada is contributing to and supporting to help mend this gap.”
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for day, who is a visible minority, the thought of developing parkinson’s was the furthest from her mind before being diagnosed because she, along with the general population, thought that only a certain demographic was at risk.
“in general, the population thinks parkinson’s only affects old-age caucasian men. it’s false. this disease can affect anyone despite age, race and gender,” she said.
research shows that while the highest rates of parkinson’s disease are found in those of caucasian descent, other ethnic groups still feel the wrath of the disease in high numbers.
for example, those who are of caucasian descent develop parkinson’s at a rate of 54 per 100,000 people, with african americans and those of latinx descent developing the disease at a rate of 23 and 40 per 100,000 persons, respectively.
early-onset parkinson’s disease is on the rise, but not in canada
recent data from blue cross blue shield painted an alarming picture of the surge in early-onset parkinson’s disease diagnoses. it found that people under the age of 50 are developing the disease 107 per cent more than they were in 2013.
the data collection system in canada is different, and according to asis, those same trends may not be developing north of the u.s. border.
“if we took the similar age group and looked at that age group within the canadian chronic disease surveillance system, and from the same time frame, if you look year-over-year, the rates are actually quite similar,” asis said. “so, we don’t see any massive increases or massive decreases like what’s reported through those (blue cross blue shield) insurance claims.”
she continued, “for example, we’ve looked at as early as 2012, the rate was about 2 per 10,000, and if you go to 2013, it’s 2.4 per 10,000. in 2017, it was 2.4 per 10,000. so, the point there was that if we look at the data sources that we are referring to in canada, we don’t see that huge jump that was reported in blue cross blue shield.”
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while the rates between canada and the u.s. differ in terms of early onset parkinson’s, it doesn’t change the fact that many people are simply unaware that parkinson’s isn’t just an older adult disease. it can happen to anyone at any time in their life.
“i didn’t know anything about young onset prior to diagnosis. i believed parkinson’s was only an old age disease involving shaking,” said day.
learning to adjust to a new life with early-onset parkinson’s
day is now 39, and since her diagnosis, she has had to change virtually everything about her life and the path she thought she would head down. but she couldn’t do it without first learning about parkinson’s disease and everything that it had in store for her.
“i educated myself about the disease; i attended several conferences and changed my diet and exercise. i try to make the best of my situation despite the young onset parkinson’s,” she said.
staying positive and looking for the good in life is one of the best ways to cope with chronic disease, and for day, it’s crucial to keep herself together on both good and bad days while living with parkinson’s disease.
“living with parkinson’s is unpredictable. i never know how i will feel physically one day to the next,” she said.
“i try to remain positive and hopeful and take it one day at a time. i try to make the best of my situation and manage to live well with my young-onset parkinson’s. i focus on my well-being. i eat healthy. i exercise. i do lots of stretching and daily walks in the neighbourhood.”
when asked about what advice she would give to others facing the same fate, day said, “our lives will be changed forever, but we can still find enjoyment in daily life. i stay courageous and hopeful. the diagnosis doesn’t define you.”
parkinson canada has support groups dedicated to helping those with young-onset parkinson’s disease. these groups are open to the public and held virtually for ease of access. to find the right group for you, click the link above.
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