Parkinson’s patients are not alone

Christy Steadman
csteadman@coloradocommunitymedia.com
Posted 3/31/21

My dad’s birthday is in April, which is also Parkinson’s Awareness Month — an interesting coincidence considering my dad was diagnosed with Parkinson’s roughly 10 or 12 years ago. A little …

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Parkinson’s patients are not alone

Posted

My dad’s birthday is in April, which is also Parkinson’s Awareness Month — an interesting coincidence considering my dad was diagnosed with Parkinson’s roughly 10 or 12 years ago.

A little about the disease: It is a progressive and degenerative brain disorder that affects a person’s muscle movement.

The disease is not necessarily fatal, but complications can be serious and it can greatly diminish quality of life — among many non-motor symptoms, Parkinson’s patients can develop mood disorders, such as depression, anxiety, apathy and irritability. What scares me most is that it will likely lead to some degree of dementia, as cognitive changes are common.

“About half of people with Parkinson’s will be affected by mild cognitive impairment: changes in memory and thinking that are noticeable, but not enough to affect daily activities. As Parkinson’s progresses, people living with the disease can develop more significant or severe memory and thinking problems,” states the Parkinson’s Foundation.

My dad is so smart and methodical — traits I inherited, I am so much like my dad — so it pains me to even think that one day, he may not be the clear-headed, responsible man who raised me.

There is no cure for Parkinson’s, though medication can help with symptoms. Additionally, there are no absolute answers on what causes Parkinson’s. According to the Parkinson’s Foundation’s website, “scientists believe a combination of genetic and environmental factors” are to blame.

But my dad’s diagnosis remains a mystery. As far as I know, his family has no history of Parkinson’s. Environmental factors could be a cause — he grew up in somewhat rural, oil-country in the Texas panhandle. Or perhaps his career as an electronics technician could be a factor. Symptoms of Parkinson’s include tremors/shaking, so how he was able to work with tiny, little wires for a number of years after his diagnosis and symptoms began, is beyond me.

I’ve reported a few news stories through the years with some sort of Parkinson’s angle. I interviewed a Golden resident who embarked on a duathlon on the Colorado Trail to raise awareness and fundraise for two nonprofits focused on improving the quality of life for people living with Parkinson’s. I wrote about a physical therapist who taught an exercise class in Edgewater for Parkinson’s patients and the patients who attended the class. A Highlands Ranch woman shared her experience of living with Parkinson’s, and she was the first to inform me about the esteemed (in my opinion) Dr. David VanSickle, a neurosurgeon at Littleton Adventist Hospital who performs Deep Brain Stimulation surgery, known as DBS.

At the time of our interview, which was 2014 I believe, VanSickle, was one of only a small number who performed the DBS surgery. He was so generous with his time for our interview, I think in part because he was enthusiastic about getting the word out about the then fairly new DBS procedure. But he also was sympathetic to this reporter who wanted to learn everything she could about Parkinson’s and DBS so she could pass all the information along to her mom and dad.

The U.S. Food and Drug Administration approved the DBS surgery for Parkinson’s disease in 2002. The surgery alleviates the motor symptoms of Parkinson’s — tremor, rigidity, slowness. It does not stop the disease from progressing, and some symptoms, such as sense of smell or balance, still need medication to be controlled.

Two devices make this surgery work. An electrode is implanted in the patient’s brain and a neurostimulator, a device similar to a pacemaker, is implanted in the chest near the collarbone. The two devices are connected and “impulses from the neurostimulator interfere with, and block, the electrical signals that trigger motion disorders,” according to Littleton Adventist Hospital’s DBS webpage. Disclosure — different wording may now be available on the website, as I pulled this quote from one of my old stories, so it is a little dated. But I think it gets idea across.

On May 4, 2017, my dad underwent the Deep Brain Stimulation surgery, performed by VanSickle. I remember sitting with my mom in the waiting room, both of us just a big pile of nerves. When we were able to see him, my dad was speaking normally and cohesively as if he had not just had brain surgery.

Last month, my dad had a surgery to get his generators — or perhaps it was the batteries, not quite sure the correct term — in his neurostimulator replaced. After some recovery time, he will go back so the doctors can adjust the programming. All this is normal, and my dad is healing just fine.

An estimated 1 million people in the U.S. have Parkinson’s, so many of their loved ones are helping to bring awareness to the disease. Caring doctors and others in the healthcare field work relentlessly to improve the quality of life for Parkinson’s patients. Experts and dedicated scientists and researchers continue to work hard to find answers to the cause of the disease and, hopefully, someday, a cure.

So even though it’s not easy accepting that my dad has Parkinson’s disease, what brings me comfort is the knowledge that my family and I are not alone.

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