It's the same routine five days a week: Get up. Get two kids out the door to drive themselves to school (“Do you have practice today? Anything for me to sign? Does the car have gas? Drive carefully!). Dad heads off to work. Mom gives the “two-minute warning” to the youngest three (“Backpacks? Homework? Lunches? Anything for me to sign? Did you brush your hair? Your teeth?”). Pile in the car and get them to school by 8:15. Send a text message to the oldest, a college freshman. Depending on the day, mom then heads off to work, runs errands or volunteers at the school, while coordinating the evening’s activities with dad.

Across town another mother follows a similar routine of backpacks, lunches, and homework for three kids, while the fourth helps the three ‘big kids” get ready for school or helps daddy get ready for work. Hustle the kids off to school, run errands, help in the classroom, and manage the house (with the help of the three year-old of course).

The lives of Jenny Davis, 42, and Tina Lagonegro, 37, resemble the lives of so many other busy, involved moms. They lead their “team” each day, raising them to be responsible, strong individuals while juggling the daily responsibilities faced by any family. Between the two families, there are 10 children ranging in age from three years to age 19. So go the normal lives of these two families.

Now add in another unforeseen, unwelcome element to these hectic lives: YOPD or "young-onset Parkinson's disease." Although long associated with the cadre of disorders and diseases plaguing the elderly, 10% of the approximately 1.5 million people with Parkinson’s are below the age of 40.

For this group the disease manifests itself in a similar manner symptomatically, but its affects are often overlaid on a life already full with the demands of caring for young children and active families, the stress of busy careers, and the emotions of facing decades of dealing with a degenerative disease.

Early indications and symptoms

Dealing with a myriad of health issues is a daily, sometimes hourly, occurrence when raising a family. Children with ear infections, bumps and bruises, sore throats, and general aches and pains are all a part of daily life. It is sometimes difficult for a parent to recognize personal medical issues while dealing with the daily issues of those in their care.

In its early stages, Parkinson's patients often experience a mix of symptoms that can be vague and hard to pinpoint. This is especially true for those in the “young-onset” category. Fatigue is attributed to waking with the kids at night, stiffness is blamed on not getting enough exercise, a trembling hand might be due to missing a meal or hauling in groceries from the car.
As the disease quietly progresses, symptoms seem to come and go. A hoarse voice with no explanation, reduced arm swing and generally stiff movement, handwriting changes, each may make a puzzling appearance, then disappear, sometimes replaced by another new, seemingly unconnected symptom.

These random symptoms are often explained away by well-meaning doctors or the patients themselves—blaming stress or fatigue. “Just slow down, get more rest, and reduce the stress in your life,” is often the recommendation. Of course, the day-to-day demands of raising a family or having a career don’t make it easy to do any such thing.

“I knew something was wrong, but it was hard to pinpoint," remembers Davis. "I had noticed slight changes nearly a year before actually going to the doctor shortly after my 39th birthday. The doctor was able to confirm some of my early symptoms, but could not find an obvious cause. When it was apparent I was having weakness on one side of my body, I was sent to a neurologist. All we could seem to do was rule out one cause after another.”

Lagonegro first experienced symptoms at age 28 but she and her doctors passed off the tremors in her arm as “essential tremors” and fatigue. In hindsight, she states that she felt like she was having a “nervous breakdown,” but the stressors of pregnancy and having young babies at home provided an acceptable explanation.

It wasn’t until she recognized a consistent tremor in her thumb at age 30 that she pursued further diagnosis beyond her doctors saying, “this looks like Parkinson’s but you’re too young for that.”

Diagnosis

Eventually for Davis the symptoms would start and not go away. The weakness persisted and the tremor in her right hand became more consistent. It was the success of one particular drug in treating her symptoms that led to the final diagnosis. Essentially she was told that the drug would have no affect on her unless she had Parkinson’s.

The cessation of symptoms that the medication provided brought mixed feelings, relief that a drug therapy had proven successful, combined with the dread of what that success ultimately foretold.

Due to her response to the medication, she was referred to a Movement Disorders specialist in Spokane. Parkinson’s disease was suspected, but at the age of 41, it seemed unlikely.

Davis traveled to Spokane, fully anticipating another puzzled doctor with no concrete answers. She used the return trip to figure out how to tell her husband and six daughters about the disease she now had a name for—and what it could mean in their lives.

For Lagonegro, the experience was similar. She received her diagnosis by a specialist in Seattle, and at age 33, 11-weeks pregnant with her fourth child, was left to figure out what that would mean in her life.

What is Parkinson’s disease?

Parkinson’s disease results from a loss of neurons in a region of the brain called the Substantia Nigra, which is an important brain area for the control of movement. These neurons are major producers of the neurotransmitter called dopamine. There is a gradual dying off of these neurons in everyone’s brain as they age, but for some reason in Parkinson’s patients, this loss of neurons is accelerated.

At about 80% loss of Substantia Nigra neurons, there is not enough dopamine to be transmitted to target neurons in other brain areas that are also involved in the control of movement. At this point, the patient develops symptoms of Parkinson’s. These symptoms can include tremors, gait difficulty, rigidity, depression, difficulty with speech, and flat or mask-like facial expression.

It is unclear why younger people develop Parkinson’s disease, but there is evidence for a genetic factor in the gene for a protein called Parkin. The role that this and other genes play in the development of Parkinson’s is the focus of extensive study to determine methods for diagnosing the disease, as well as potential treatments—and hopefully someday, a cure.

With symptoms that are often exacerbated by stress, the rigors of a busy life caring for school-aged children, and the demands of careers, management of Parkinson’s can add yet another full time job of its own.

Currently the treatment protocol for Parkinson’s patients is a carefully managed series of medications to treat both the source of the disease as well as to manage its symptoms. The goal is to maintain the best quality of life possible.

Initially, the medication attempts to provide precursors for the body’s normal production of the important brain messenger dopamine. Over time this treatment is supplemented with additional drugs that prevent dopamine breakdown by the body and by drugs that mimic the action of dopamine.

Symptoms of Parkinson’s

TREMOR, the characteristic shaking associated with Parkinson's disease often begins in a hand and is most evident while the hand is at rest. However, many people with Parkinson's disease do not experience substantial tremor.

BRADYKINESIA: The slowing down of body movement and gradual loss of spontaneous activity is one of Parkinson’s most evident symptoms. This occurs as the brain’s ability to respond quickly and transmit necessary instructions is impeded by the disease.
Patients often experience a roller coaster of “ons and offs” that they cannot always predict or control. Although often associated with medication taking affect and wearing off, the unpredictable nature of this group of symptoms can be especially stressful as they lose control of their body and trust in their body’s response at any given moment.

DYSARTHRIA (difficulty speaking) and DYSPHAGIA (difficulty swallowing) are two other common symptoms of Parkinson’s disease. Physiologically these symptoms are the result of decreased control of muscles used for speech and swallowing. For people with Parkinson’s, this often leads to difficulty in pronouncing words—as well as chronic hoarseness, muffled voice and unclear or slurred speech.

DEPRESSION and SLEEP DIFFICULTIES are often a part of Parkinson’s disease and are frequently under-diagnosed and under-treated. In later stages of the disease, memory problems, confusion, and forms of mild to severe dementia are all possible symptoms that plague Parkinson’s patients as their disease progresses.

Life Today

Davis and Lagonegro, along with their husbands, face all the same joys and challenges as so many other families. Their “normal” lives have not disappeared, but Parkinson’s disease forces them to adjust constantly. They have both come to accept a “new normal”.

Living with YOPD requires careful management of symptoms, treatments and the effects this has on families, lives and careers. Finding the right support mechanism to assist with this is critical.

Davis and Lagonegro found each other and developed a friendship through a connection with The Neurological Resource Center (TNRC).
TNRC offers a variety of support groups, educational presentations, a lending library and a monthly newsletter—all aimed at answering questions and providing support for caregivers and those living with neurological disorders.

“I didn’t need anyone telling me how awful it was that I was dealing with this disease. What I needed was to hear from others who were getting through day-to-day life,” says Davis.

Sharing stories of health insurance struggles, drug side-effects, solutions, dealing with troublesome symptoms and developing positive friendships are all key to maintaining a quality of life beyond the disease.

“For me a support group isn’t just a group that gathers once a month to talk about having the disease, it’s a group of people who support each other in living life.”

For Davis and Lagonegro, balancing daily life and staying busy keep them moving forward—even if sometimes that movement is not as smooth as it was in the past. Focusing on their families and their faith while acknowledging the limitations that the disease imposes, helps both of them take each day as it comes. Both women agree: “Life is very different now than it once was, but it is a good life and we appreciate every moment we have.”

You can see a video of Jenny and Tina by going TNRC’s website at this address:
http://www.neurologicalresource.org/video/video_06.htm

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