By Darren Lum
Published Aug. 28 2018
Love is an amazing thing: it is intangible but it can be seen in the people we love.
For Minden’s Charlie and Ethel Muli their love is apparent in the way they look at one another as they stand in each other’s arms posing for a photo to bring attention to their life with Parkinson’s.
Love has helped them overcome adversity.
Charlie may have Parkinson’s disease – a complex brain disease that affects each person with the disease differently – but he endures the symptoms with the help of his wife and everyone who loves him.
Parkinson’s is also invisible unless seen in the actions or lack thereof of its sufferers.
Parkinson’s Canada said movement is normally controlled by dopamine a chemical that carries signals between the nerves in the brain. When cells that normally produce dopamine die the symptoms of Parkinson’s appear.
The couple takes everything in stride despite the ongoing challenges of living with Parkinson’s.“We work together as a team. It’s not ‘Charlie has Parkinson’s.’ It’s not ‘you deal with it.’ It affects everything. You do what you have to do. It’s a different stage in our life and that’s it” she said.
They don’t do it entirely alone.
The two regularly go to the Haliburton Parkinson’s Support Group which meets once a month at the health unit in Haliburton with more than a dozen people suffering from the disease and their caregivers.
The annual Parkinson’s SuperWalk event is on Sept. 16 in Haliburton. Participants will walk as far as they are able on that day. Charlie points out how each day the disease dictates “good days” and “bad days.”
Haliburton hosts one of many events for Parkinson’s Canada raising money and awareness.
This disease affects more than 100000 people in Canada and close to five million around the world. There will be an estimated 10000 people participating in the walk across the country.
The event’s perennial top-fundraiser is Gail Leach-Wunker whose husband Randy has Parkinson’s. She has already raised $2780 surpassing her $2750 goal. Leach-Wunker has invited MP Jamie Schmale and MPP Laurie Scott to join her at the walk.
The event starts with check-in at 10:30 a.m. followed by the start of the walk at 11 a.m. from the Head Lake Park band shell to the airplane at the high school and back followed by a potluck.
The Mulis invite the public to either donate or participate and learn about the disease that has slowed Charlie down.
He has periodic loss of balance muscle weakness laboured walking loses his train of thought stands frozen in place and has trembling hands but does not have tremors.
Other symptoms that can affect sufferers include depression difficulty swallowing loss of appetite fatigue soft speech problems with handwriting stooped posture constipation and sleep disturbances.
To control these symptoms Charlie takes close to 40 pills a day including Levodopa which helps with the production of dopamine. He takes several pills every few hours at specific times to ensure his dosage is precise.
Taking drugs Ethel said is a major change for her husband.
“Considering before he wouldn’t even take an aspirin or anything it’s a big change” she said.
He also has regular visits from an occupational therapist.
Ethel and Charlie were known for Minden Subaru having owned and operated the dealership for years. Parkinson’s was a deciding factor in selling the business Ethel said.
Charlie still loves cars. However he chooses not to drive due to his slower reaction times.
He was disappointed when he was first diagnosed 13 years ago with this disease that doesn’t have a specific cause. A lot of time has passed since and he has come to terms with it.
“In fairness the disease is tolerable but we wish it wasn’t there. You lose muscle tone. You have all these separate symptoms but they’re all related back to Parkinson’s” he said.
The process is underway for him to receive deep brain stimulation surgery. This enables the delivery of electrical pulses to brain cells to decrease symptoms. He will undergo testing in September to determine his eligibility. If he has the surgery he hopes it will reduce how many drugs he has to take and calm his involuntary muscle movements.
The best candidates for this surgery have had Parkinson’s for at least four years and can derive benefits from medication but have motor complications according to the website www.michaeljfox.org.
Life with Parkinson’s doesn’t allow for a lot of travel.
“It’s difficult for Charlie just to even sit in the car for any length of time. So as far as travelling that’s not in the forecast” Ethel said. “When we were younger we travelled quite a bit and so we have the memories of doing that.”
Any travel is challenging whether it’s a short walk or the 25-minute drive to Haliburton.
“You always have to be prepared even if you think you’re going for a walk or a drive. From Minden to Haliburton you have to think: how long will we be gone? Do I need to take the meds with me? I always have extra in my purse anyways but you always have to be aware of how long you’re going to be out” she said.
It means Ethel pays attention to the clock since taking medication has to be at certain times of day and a walker and cane must be part of the equipment list. Smooth surfaces are helpful for walking when balance is compromised. The paved areas in downtown Minden and the Riverwalk are ideal as are the hallways of Canadian Tire when the weather isn’t ideal to be outside.
Despite the challenges inherent with rural life from uneven terrain of dirt roads to the distance to the closest pool neither of them considers living anywhere else because Minden is home. It’s been that way since they moved to the area in 1974.
The couple has two children who are now adults: one son in Coboconk and one daughter in British Columbia who has two sons. Parkinson’s makes visiting family a challenge.
“It’s difficult for me. It’s difficult to see Charlie on the days when he is really struggling. It does change everything. You don’t get to see family. It’s just difficult” Ethel said.
Parkinson’s sufferers face ongoing challenges with keeping a train of thought.
“They go to say something and they say a couple of words or they get into a sentence and they just lose it. It’s like your brain is short-wired and that’s common for most people with Parkinson’s” she said.
At a glance Parkinson’s sufferers are sometimes mistaken for having dementia.
Charlie points out the public is far more familiar with Alzheimer’s than Parkinson’s.
Occupational therapists have told them that some people with Parkinson’s are embarrassed when they lose their train of thought or struggle to carry a conversation.
“It’s not anything to be embarrassed [about]. It’s just you start the task and your brain is not working to finish it and not to get flustered about it. Just say ‘I’ve lost it or give me a minute’” Ethel said.
Charlie was first officially diagnosed by his family doctor after an incident he couldn’t ignore.
He was stopped at a light while driving with his grandsons after hockey from a local arena. Without actively moving his arm it started to waver up and down first a few inches then more and more. This incident came after a few years of what was thought to be unrelated symptoms: diminished sense of taste and smell.
There isn’t a clear diagnostic test for Parkinson’s
“If you go for cancer or a blood disease they can do a test but there is no actual test for Parkinson’s” Ethel said. “What they do is they rule out anything that is familiar.”
During the four years of not being diagnosed Charlie had difficulties with facial expressions his gait changed and his hands trembled uncontrollably. Ethel remembers calling him Napoleon for the way he walked around the dealership holding his right arm against his chest.
“It seemed to be a habit but then you recognize that was an early sign of the disease” she said.
Now it takes a concerted effort to make facial expressions. His doctor on the first visit prescribed him Levodopa right away. Ethel believed it helped.
Parkinson’s is progressive. There are five stages according to the Parkinson’s Foundation website.
Stage one is regarded as an “initial stage” and the sufferer has mild symptoms that generally do not interfere with daily activities. Tremor and other movement symptoms occur on one side of the body only. Changes in posture walking and facial expressions occur. The fifth stage is the most advanced and debilitating: stiffness in the legs may make it impossible to stand or walk. The person requires a wheelchair or is bedridden. Around-the-clock nursing care is required for all activities. The person may experience hallucinations and delusions. There are many non-motor symptoms as well as motor symptoms
Life expectancy is dependent upon the age of onset how the symptoms are managed and the general health of the individual. As an individual ages the disease progresses as do the risks. For example impaired balance can lead to falls; swallowing problems if not managed can lead to pneumonia. Parkinson’s is known as a chronic condition that requires ongoing monitoring and management.
Charlie jokes that getting dressed on his own is an achievement.
“A good day is when you can do your walking exercise and … what everybody takes as a normal day is an achievement … like I said getting dressed in the morning; have your breakfast; utilize your time as best as possible. It’s a challenge” he said.
Ethel agreed and added when he can do more on his own it’s less work for her but she’s there if required.
“If he needs help then that’s what I’m here for” she said.
In the interview with the paper they don’t dwell on what isn’t but celebrate the triumphs. This experience has not weakened them.
Their resolve is plain as the summer sun that shines on their home as they stand together looking at each other smiling.
There is a matter-of-factness to how their lives have been changed.
“The disease gains momentum. You have to do what you can to fight it. Fight back with it. That’s what it is. You have to do what you have to do basically” Ethel said. “It changes everything. That’s for sure.”