Parkinson’s at 42: How One Woman Braved a Young-Onset Parkinson’s Diagnosis and Turned It Into Action

Jennifer Traver’s entire life changed as the doctor told her four words: “You have Parkinson’s Disease.” Being just 42 years old, the diagnosis was completely unexpected. After a general check-up exam, her doctor noticed a slight tremor in her pinky that eventually traveled up her arm and down her entire left side. After countless appointments seeing specialist after specialist, her Young-Onset Parkinson’s Disease had finally been confirmed.

Before you read more about Jennifer’s inspiring story, keep reading to learn about Parkinson’s as a whole, according to a Parkinson’s and movement disorder specialist.

What is Parkinson’s Disease?

“Parkinson's disease is considered a brain disorder in which nerve cells are damaged and eventually die,” explains Lawrence Elmer, MD , movement disorder and Parkinson’s specialist. “It typically affects older people in their 60s, 70s and 80s. However, as we know in the case of Michael J. Fox , it can affect people much younger since he was diagnosed around 30 years old.”

He continues, “We used to think that it affected only a particular part of the brain that contained nerve cells producing a chemical called dopamine. However, we now know that it affects many nerve cells, both in the brain and throughout the body. It is the loss of the dopamine-containing neurons that is thought to cause the most classic symptoms of Parkinson's.”

Unfortunately, Parkinson’s is progressive, and there is currently no cure for the disorder. This progression factor poses many challenges and complexities when it comes to treatment and symptoms.

“The biggest challenge with Parkinson's disease is that it progressively involves more and more nerve cells over time, beginning with nerve cells that commonly are exposed to the external environment, such as those responsible for our sense of smell and control of our intestines,” explains Dr. Elmer. “Both areas are exposed to the external environment through our breathing and what we eat and drink.”

Common symptoms of Parkinson’s Disease

Symptoms of Parkinson’s Disease can vary greatly from person to person. As most diagnoses go, there’s no one-size-fits-all description: what one experiences with their Parkinson’s diagnosis may be completely different from another patient.

However, there are a few tell-tale, common symptoms that many — but not all — face with Parkinson’s. “The most common symptoms of Parkinson's include slowness, stiffness and shakiness. Slowness is the most predominant symptom and causes people to have reduced speed of movement using their arms and/or legs, reduced facial expression, softness of voice, trouble performing tasks involving physical dexterity and shuffling of the gait (walking),” says Dr. Elmer.

“Other symptoms that we realize now can be associated with Parkinson's due to other nerve cells being damaged include loss of sense of smell, constipation, feelings of depression or anxiety, sleep abnormalities, changes in the control of bowel or bladder habits, abnormal drops in blood pressure when standing, and even changes in the ability to solve problems due to damage to the top of the brain that we use to think,” continues Dr. Elmer.

Common treatments and medicine for Parkinson’s

While there is no cure at the moment for Parkinson’s, there thankfully are medications, therapy programs and surgery available to help treat the disorder.

As far as medications go, one of the most common Parkinson’s medications is levodopa, which is turned into dopamine once absorbed. “The most dramatic medical breakthrough occurred in the late 1960s when it was discovered that an oral treatment, levodopa, could cross into the brain after being absorbed through the intestines into the bloodstream and was then converted into dopamine itself,” affirms Dr. Elmer. “This led to a large and significant breakthrough in the management of the typical symptoms of Parkinson's disease including the slowness, stiffness and shakiness.”

Physical therapy can also make a huge difference in managing Parkinson’s symptoms, says Dr. Elmer: “In the last 1-2 decades, it has been increasingly recognized that exercise and physical therapy plays a very, very important role in the treatment and management of most symptoms associated with Parkinson's. As a result, most Parkinson’s patients are encouraged to engage in exercise programs at the time of diagnosis, especially in treatments considered ‘Parkinson’s specific therapies’.”

Deep brain stimulation (DBS) surgery is another option for some living with Parkinson’s “who either are inadequately controlled with medications, are unable to tolerate the medications or are having significant side effects from the medications,” explains Dr. Elmer.

Living with Young-Onset Parkinson’s: Jennifer’s story

After being diagnosed with Young-Onset Parkinson’s Disease at just 42, Jennifer Traver’s doctor solemnly asked her, “Are you wondering, ‘Why you?’”

“No, I will never wonder ‘Why me?’ Jennifer said without hesitation. “Because the truth is, ‘Why not me?’ But I’m just stuck on the ‘how.’”

After being in perfect health her whole life, raising two children and working full-time with no issues, she thought, “How did I get this? How could this hit me?”

At first, Jennifer thought “Young-Onset” made the diagnosis sound better — in reality, the only difference between her diagnosis and a non-young-onset diagnosis is that she has to endure it longer than the average patient, her doctor explained. The average age of people diagnosed with Parkinson’s is 60-years-old; A patient is considered young-onset if they are diagnosed younger than 50. With Jennifer being in her early 40s, the idea that she could have this disease was practically unbelievable.

What is Young-Onset Parkinson’s Disease?

As explained above, the main difference between a young-onset and “standard” Parkinson’s diagnosis is the age of onset. While most Parkinson’s patients are diagnosed at 60 or older, those classified as young-onset can be diagnosed as early as their 30s to 40s, says Dr. Elmer.

Another difference between the two is the speed of progression. “While it would be difficult to imagine developing a disease like Parkinson's at such an early age, the progression of the illness in younger people usually is slower than the more standard form of onset in older individuals. Again, the example of Michael J. Fox is relevant in that he has now had symptoms for over 30 years and still lives a very active life, although he does face struggles at times,” Dr. Elmers tells us.

What causes Young-Onset Parkinson’s Disease?

We don’t know the exact cause of Parkinson’s , but researchers believe it can be caused by a number of different factors. There’s evidence suggesting it can be hereditary and run in your family’s genes — as far as she knows, no one in Jennifer’s extended family has Parkinson’s — whereas it’s also thought to potentially be caused by exposure to certain toxins like herbicides or pesticides. Further, it’s more common in men and in people over 65. With all that being said, Jennifer would never be able to pinpoint the “how”.

As she silently sat in the car ride home, her mind raced. If I’ll never know the ‘how’ and I can’t think about the ‘why,’ all I can really do is focus on the ‘what,’ she thought to herself. What can I do to make a difference?

After a few months of processing, Jennifer decided to go to her first local Parkinson’s benefit walk in East Lansing, Michigan for those with PD and to help raise awareness.

Jennifer felt a stirring in her heart as the guest speakers shared support and encouragement. She couldn’t deny the immediate gravitation toward one in particular, Todd Gardner.

The pull was so strong that she decided to take a leap of faith and approach him to learn his story. After building up the courage to introduce herself to Todd, she learned he, too, was diagnosed with Young-Onset Parkinson’s.

HIs words of advice to Jennifer? “Find your passion,” encouraged Todd.

Jennifer pondered the words of wisdom from her new friend (who she remains close friends with to this day, nearly a decade later). As she thought, the realization hit her: her passion is people — and more specifically, being a shoulder to lean on for people. She always knew she had a gift of connecting with others, and now, Jennifer decided at that moment that she’d use that gift to be a voice.

Putting purpose into action

“Jennifer, I’ve got it,” her close friend Abbey said over the phone shortly after Jennifer began brainstorming how she could help tackle Parkinson’s Disease. “Why don’t we do a fundraiser at the bowling alley?”

Before they knew it, friends and family were all ready to help put on the local fundraiser. It ended up being more of a success than they ever imagined, raising over $4,000 that first year.

After that, Jennifer and her team decided to put on the bowling fundraiser every year, in addition to hosting poker run and cornhole tournament fundraisers, and Jennifer officially created her own 501(c)(3) non-profit organization called Shakin’ Not Stirred .

Now, a total of 14 fundraisers later, Shakin’ Not Stirred has raised over $100,000 — all of which goes to local and national Parkinson’s foundations like the Michigan Parkinson’s Foundation .

To lend a more personal hand to those struggling as she once did, and still does as the disease is an ongoing battle, Jennifer also started her own Parkinson’s support group in her community in Monroe, Michigan. Once a month, 15-30 members and their caretakers meet to hear from guest speakers, such as physical therapists, nutritionists and movement disorder specialists all with the purpose of showing up: for each other, for themselves and to fight the good fight.

As for Jennifer, it’s been life-changing to have the opportunity to take this challenge and turn it into a light that shines in the dark.

“When I’m faced with challenging times, one thing I find very comforting is being able to say, ‘This too shall pass.’ But unfortunately, as of today with no cure yet, people living with Parkinson’s are not able to say that — and sometimes having to accept that reality can really be distressing and frustrating,” Jennifer says. “But it’s what drives me and gives me my passion of doing everything I can to help be a little part of someday finding a cure… a cure for our children and their children and many more generations to come. We can all be there for each other; No one has to tackle anything on their own!”

What doctors wish people knew about Parkinson’s

Parkinson’s today is not thought of the same as it was 20 years ago — at least in the eyes of experts and doctors. Historically, doctors thought a patient had to have tremors in order to have a Parkinson’s diagnosis. Nowadays, we know that is not necessarily the case.

“In the past, many if not most clinicians were taught that a person had to have the classical tremor at rest to have a diagnosis of Parkinson's disease. We now know that up to 30 to 40% of people with Parkinson's may not have a tremor at the early stages of the disease and some may never have a tremor,” affirms Dr. Elmer. “Due to this misunderstanding, many people lived with the progression of the symptoms of slowness and stiffness sometimes for more than 1 to 3 years before being accurately diagnosed and treated. Thankfully, newer diagnostic techniques have been developed including special imaging techniques of the brain and other tests that allow the disease to be diagnosed earlier and more accurately, even if the tremor is not present.”

While experts are now aware of the wide variety of symptoms one can have with PD, the general public typically is not aware if they have not experienced Parkinson’s first-hand or watched a loved one have it.

Further, it’s important to recognize that PD can look different not just from person to person, but from one time of day to the next. You may see someone with Parkinson’s appear completely “normal” and functioning an hour after taking their medication, and then when they are due for their next dose, have all the symptoms present that we discussed earlier like tremors and stiffness.

“It is unfortunate that very few people without Parkinson's realize that the patient can appear normal and move essentially without difficulty at one point in the day, only to be severely limited in their ability to move at other times of the day. Again, this all is dependent on the amount and type of medicine that is replacing the dopamine in their brain,” says Dr. Elmer. “Without dopamine, even the simplest tasks such as getting out of a chair to walk to the bathroom can become nearly impossible without the help of another person. This is why most Parkinson’s specialists place a high priority on teaching both the patients and their caregivers as much as possible about the features of this disease, how the medications work and how a patient’s symptoms can vary significantly throughout the day.”

The last thing Dr. Elmer wants to get across is that meeting the needs and addressing mental health of caregivers is just as important as treating the person living with Parkinson’s. “Finally, in the case of caregivers of patients with advanced Parkinson's, many of their needs and health issues tend to be neglected in deference to the patient's issues. This is another important area of need for education and ‘caring for the caregiver’.”

To contact Jennifer and learn more about her story or donate, visit shakinnstirred.com . To learn more about Parkinson’s, visit parkinsons.org .