The Invisible Symptoms of Parkinson's Disease

A Story by Lore

I've been having trouble getting this published. It's been sitting in my journalism teacher's inbox, despite promising me she'd help me. So i'm goingto post my findings, my life story here.

My mother was diagnosed with Parkinson’s Disease in 2002. PD is a neurodegenerative disease and is generally considered a motor disorder. The common symptoms such as tremors, slowness and stiffness, and rigidity of muscles didn’t debilitate my mom as much as people with PD who we see on television like Michael J. Fox or Muhammad Ali. In fact, in the early stages, my mom seemed fine physically. What plagued her was the depression" what the family saw as a reaction to having a disease, when it was so much more.

The depression progressively drained my mom of the motivation to exercise or commit herself to any activity that helps in battling the disease. We couldn’t understand. The depression also caused my mom to shut herself off from her family and from her doctors; it put her in her own world.

By the late 2000’s, she began to deteriorate physically. The depression sped up the progress of the disease and it reached an advanced stage in less than 10 years. At the beginning of 2011, conditions that arose out of symptoms began to become too unbearable, and she was hospitalized. Her body gave in after a 5-month battle.

She was only in her early sixties " the average age of onset of PD.

My mom’s experience is a testament to the fact that there is more to Parkinson’s disease than meets the eye.

When the dopamine-generating cells in the substantia nigra die PD symptoms arise. The substantia nigra is a region in the brain responsible for award, addiction, and movement.

Generally, when we think of Parkinson’s, movement comes to mind because of the shaking and tremors and other obvious motor symptoms. However, the award and addiction part of the brain are equally affected.

“Sometimes you can have depression, that’s one, sometimes you can have hallucination’s, sometimes as well patients become quite anxious, and of course certain patients can develop impulse control disorders in relation to the medication,” said medicine professor at U of T, Antonio Strafella. “They can have gambling, hypersexuality, compulsive shopping, compulsive eating, all these features can belong to Parkinson’s disease.”

According to Strafella, the cognitive and behavioural problems experienced by patients are not given enough attention to.

Based at the Movement Disorders Center in the Toronto Western Hospital with a laboratory at the Centre for Addiction and Mental Health, Strafella researches the mechanisms that lead to PD.

By using neuroimaging " positron emission topography (PET), along with functional magnetic resonance imaging (fMRI) " Strafella studies the activation of the brain and the abnormalities underlying the behavioural and cognitive problems that arise in Parkinson’s patients.

In October 2011, Strafella was awarded a position as Canada Research Chair for his groundbreaking work on PD.

The CRC is a government-based program that allows Strafella to continue his research well into the future with more resources and funding.

He joins Dr. Anthony Lang, the founder of the Movement Disorder Centre, as the only two Parkinson’s researchers who have been named to the CRC.

Also based at the center is Dr. Susan Fox, who teaches neuropharmacology at U of T.

Fox emphasizes, “depression is not just a reaction to having a chronic neurological disease, it’s part of the pathology of the disease.”

Parkinson Society Canada estimates about 40 per cent of PD patients suffer from depression and anxiety alone. Some recent research suggests this number is higher, perhaps up to 70 per cent. This marked increase results in a growing concern about the correlation between depression and PD. According to PSC, depression can lead to sleep issues, weakness, physical slowness, lack of concentration, and isolation amongst patients.

An individual open about her depression is Beverley Lavender, 51, a Toronto resident who was diagnosed with PD in 2004.

“It’s one of the first presenting symptoms before they even get diagnosed, it can even be more debilitating than the physical symptoms,” said Lavender. “I speak from personal experience, three years into my time with Parkinson’s, I was suffering from severe depression, but I was smart enough to seek out help.”

Lavender began experiencing symptoms in 2004 when her right hand would freeze while she was manoeuvring the computer mouse. Lavender thought she might have carpal tunnel syndrome. Her family doctor sent her to a neurologist, where the news was delivered to her.

“I felt like I got kicked in the stomach,” Lavender recalled.

However, Lavender used the diagnosis of the disease to give her a voice.

She became the leader and facilitator of ‘Moving Ahead Together,’ a support group for individuals newly diagnosed with PD, now in its seventh year.

In October 2011, Lavender was honoured with the annual Mimi Feutl award from PSC for her dedication to making a difference in the lives of other people affected by Parkinson’s.

The award was named after Mimi Feutl, the director of patient services with the PSC for more than 22 years. Like Feutl, Lavender exemplified unwavering commitment, compassion and energy through her work for others.

“We meet once a month together, face to face. We make a very comfortable space for each other, in terms of welcoming and confidentiality, and willingness to share. It’s actually very liberating,” said Lavender. “And what makes it all worth it " when a new person comes to the group that has never been before, and they leave feeling so much better than when they came in.”

Simply, support groups should be encouraged for Parkinson’s patients, as it is the best way to battle the symptom of depression.

All though my mom had a psychiatrist and an on-line support group, she did not have adequate family support.

Neither my dad, my brothers, nor myself knew how to care for my mom in her condition.

The hardest time of day for my mother was in the mornings.

It would take her hours to get ready, and then walk through the upstairs hallway and down the stairs.

No one in the family had the patience " an important quality in caring for someone with depression.

On too many mornings I’d leave her alone to go downstairs by herself, because I knew she was physically capable of such a task, but that was never the problem.

She would stand in the same spot for 2 to 5 hours, and I did nothing about it because I didn’t know how, and my frustration wouldn’t let me understand.

There were often times where she would put her hand on her face, which I interpreted as her seeking pity, so did other family members, and we looked down on her for that.

Now that I’ve grown older I’ve realized that it wasn’t pity, it was shame that she was feeling, and not once did anyone ever tell her that everything was all right.

Sometimes my dad would get frustrated and angry and scream at her, but that’s not anyway to treat someone with depression, it just exacerbates their condition, it makes them feel even more isolated and more ashamed of who they’ve become.

How to treat someone with depression is important for all caregivers to learn, because it is likely that an individual diagnosed with PD will suffer from depression, and family support, more than anything, can go a long way into easing the life of a PD patient.

Unfortunately, there are even worse problems for PD patients in the form of dopamine agonists " medications they are prescribed to for the several motor symptoms they experience.

These agonists can “stimulate parts of the brain that deal with behaviour problems, ” says Strafella.

In other words, non-motor symptoms can often be exacerbated by medication, a double-edged sword that Strafella also focuses his work on. Great progress has been made in the treatment of PD and there is a wide array of medications available to relieve parkinsonian symptoms.

However, there is convincing data that shows dopamine treatments may be associated with various impulse control disorders " gambling, hypersexuality, shopping and binge eating. Strafella says only 14-15% of PD patients develop these problems. Which means there is some kind of predisposition that will trigger the disorders. Someone who has had gambling problems in their past may redevelop it upon taking the dopamine agonists.

Other dramatic behavioural changes that could be brought on by medication could include psychosis, hallucinations, delusions, agitation, and mania.

“Visual hallucinations are the most common drug effect in patients with PD,” said Fox.

Often, these are nonthreatening visual illusions but there is always a chance these hallucinations may develop into something threatening over time says Fox.

Delusions are also common, and like hallucinations, they may be preceded by vivid dreams.

In regards to my mother, she would often scream and cry in her sleep, and a miserable, restless night can negatively affect the next day.

The only treatment for these nightmarish symptoms is to decrease the dosage of the antiparkinsonian medication. Unfortunately, this will result in an increase in the movement disorder. This is often referred to as the motion-emotion conundrum.

Part of Strafella’s research is to find a treatment that could work it’s way around this dilemma. However, the caregivers of PD patients also have a role to play in helping to alleviate these symptoms.

“Years ago people thought Parkinson’s disease was just a condition that caused tremor or difficulty moving, but I think nowadays people are more aware that it is more than just a motor system problem,” said Fox.

Researchers on PD behaviour problems led by recent Canada Chair researcher, Strafella, and outspoken Parkinson patients like Lavender have helped people understand and cope with the invisible symptoms of PD.

But there is still much more awareness that needs to be raised.

In my case, I had lived with my mom for just under 10 years, and I did not understand and realize how to care for her until it was too late.

My mom was just one of tens of thousands of Parkinson’s patients in Canada who suffer uncontrollably from a lot more than what we see.

Understanding that depression and other non-symptoms is actually part of the disease, and teaching families those symptoms, can go a long way into better treating PD patients.