Frustration with Diagnosis, Treatments, and Medications

-Dolaine Koch, Wellness Committee

Some of our family members have been living with Parkinson’s symptoms for a number of years now. The short version is: It has been an interesting journey learning how to navigate a road with no infrastructure and no end destination. My best advice is to ask questions and advocate!

We watched my father develop symptoms for about twenty years. He retired at age 63, saying that the new technologies he would have to master had chased him out. I think it was more a result of the hand palsy that was developing. He was finally diagnosed by a neurologist as having Parkinson’s Disease (PD) and then was promptly put on a dopamine medication. This seemed to help for many years; his symptoms didn’t progress beyond the palsied hand movements. Though, there was never any follow up by a specialist.

Before I retired, I traveled with my parents over the course of a few summers. I was the driver, and we enjoyed travelling to see my sister to gather with all the family as a reunion. My father began failing big-time, more so on the cognitive level. When we returned to Edmonton, there was a long lag to get Dad evaluated. In the end, it took a crisis where he had fallen into the bathtub and my mother calling 9-1-1 to get him an appointment.

Once he was assessed, medication after medication started to be prescribed by the family doctor, each one was meant to cover the side effects of the previous medication he had been given. It seemed a never-ending cycle. Dad was on death’s doorstep and the entire family was called to his bedside. The geriatric unit at the University of Alberta Hospital was the key. They stopped all medications and monitored him over several days.

Slowly, they figured out what was wrong, and took him off many of the medications he was taking. My mother, bless her heart, had been experimenting with the pills, sometimes giving them, sometimes forgetting, sometimes deciding certain pills weren’t necessary. Switching to medication pouches solved that problem. My father was brought back from the brink of death and so life went on. Homecare came to help him with exercise, and things improved. He began a day program just down the street from their house that included exercise and conversations with likeminded people.

No other changes were made after this, but when the family doctor retired, my parents were left in the wind. My father was essentially abandoned by not receiving a referral. Thankfully (or not) my brother got him in as a patient of his doctor, and that doctor left my father on the same original dopamine dose.

If you’ve ever talked to someone about day programs for seniors, you may know that the program runs about two days a week, has some exercise equipment provided with advice from program directors, some lunch, and some community activity — like watching a movie or playing some kinds of games. It’s about being together with like-minded people of a similar age and getting out of the house — so to speak.

My father was in that day program for eight years. He watched all manner of people coming into the program with PD, many deteriorating with worsening symptoms, and ultimately, many were unable to attend because of worsening symptoms, or in some cases, death. Imagine knowing you have PD, and that you will eventually deteriorate the same as those people you’ve befriended. My father was mentally going downhill.

During this time, I became more involved in his medical appointments because I was retired and had time. Dad was never reassessed after his initial PD diagnosis, and his doctor was very hesitant to send him for another assessment. The doctor kept brushing our questions off by saying he wasn’t the one who diagnosed the disease.

When we finally got a referral to another neurologist, it was a blessing! That specialist gave my father hope. He said he saw no reason to believe it was PD, that his symptoms were likely caused by other factors. The palsy was remediated with an increase in dosage, and there was follow up. The doctor was amazed that my father hadn’t been reassessed for more than 11 years post diagnosis.

Again, by lobbying his general practitioner, after three years, we got a referral to an orthopedic surgeon for a hip replacement. The cortisone injections weren’t providing much relief. I was appalled at the indifference his doctor exhibited when we would question his assessment. I’ll never forget the doctor observing out loud: “Who in their right mind would operate on someone your father’s age?”

It took more advocating and pushing every time we had an appointment. I still remember the look on his doctor’s face when we announced that a surgeon was willing and able to operate, and give my father an improved quality of life for a good five years or more.

But then, the COVID-19 pandemic hit, and it cancelled my father’s surgery. That blow was the beginning of the end for him. When things started to open again, the surgeon’s clinic asked for a repeat of the testing on his heart and blood work. The delays and repeat work were exhausting, and it became too painful overall. He succumbed to injuries from a bad fall down some stairs at his residence. Mercifully, he didn’t linger.

Recently, we have noticed PD symptoms in my husband, beginning in the same way as they did with my father. The hand tremors can become better or worse, depending on what’s going on. When he’s nervous, it is worse. He can still play the guitar for a bit, but it has become heavy in his arms. His dexterity is being challenged. He complains about not being able to feel things at his fingertips, so he can’t pick up things like he used to.

The same neurologist that saw my father is seeing my husband. He is hopeful, but Dennis is starting to show further signs like ‘freezing in place.’ We have been researching his symptoms without much success. We are hoping nutrition and exercise is going to help stave off progression, but there’s not much research out there to support our hopes.

Without advancements in research or medication, we are once again feeling somewhat abandoned by the medical field. What will it take for the research to be done, for better supports to be put in place, and for PD patients to have a better quality of life?

“A person who feels appreciated will always do more than is expected.” -Anonymous