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Living with Parkinson’s – local sufferers share their stories

Observer contributor Marian Gillard’s second installment of a two-part series on the disease
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Bruce Engel, who has Parkinson’s Disease, started a support group in Quesnel. They meet every second Wednesday.

In Part 1 of this series, I explained what Parkinson’s Disease (PD) is and how important it is to examine your options for treatments with your care partner, family and friends. In this section you will read two stories of men who have walked the Parkinson’s journey for some time. I call them “the overcomers” because of the way they keep going from day to day even when the future is uncertain.

Steve Erdman’s story

Twelve years ago, a new journey began for Steve. He was a long-time employee at the Westpine Mill. He was happily married to Aaren and they were raising Ethan, Elias and Olivia. He can’t remember ever being ill. This journey seemed set for many more years until one summer day, when Steve was playing soccer and a fan on the bleachers yelled out, “Hey Steve, what is wrong with your arm?” His arm and hand was shaking.

Then he began to notice other symptoms in his body doing strange things. He went to the doctor and was referred to a neurologist in Prince George. After several tedious tests, Steve and Aaren were told he had the onset of Parkinson’s Disease. The new journey had begun. The couple will always remember the cloud of despair that settled on them on the way home.

Depression sets in and is always lurking even though, for the first five years, the Sinemet medication can keep the symptoms at bay. There is at present no cure for PD.

Steve is always thankful for his family but now he lives alone. Aaren brings meals often and the adult children –now in their twenties – help out as much as possible and keep his spirits up. Friends stick with Steve but his PD is progressing and his voice is now weaker. He knows there is a possibility of losing his ability to swallow.

Steve’s outlook is uncertain. He is more retiring than he used to be. He has lost the skills he once had and finds reading difficult because his brain won’t concentrate on the meaning of the words. Nevertheless, when I suggested he could get some audio books from the Quesnel Library he had a spark of hope in his eyes. I intend to keep up with this friendship.

What has helped Steve emotionally is the PD support group, which he looks forward to every second Wednesday of the month. It is always encouraging to meet with others who are going through the same trials and making the best of every day.

Bruce and Teri Engel’s story

Bruce was born on August 18, 1940 in Albany, Oregon. He was a healthy child except for asthma. In his teen years he played several sports. His favorite was baseball. Up until last fall, he was able to hunt and fish.

He took up law school after graduation and was a corporate lawyer in the USA for 18 years. He married shortly after completing law school and had three children. Later he found happiness with Teri and they have been married for 48 years. They have two children from this union. They are adults and the families are all doing well.

Teri and Bruce both love the life of farming and spent several years on a hay farm in Oregon.

In 1979 the family emigrated to Canada. They sold their farm in Oregon and found a nice quiet place in the backwoods and settled on a property in the Baker Creek area of Quesnel.

In 1998 Bruce was playing baseball and noticed a tremor in his hand that prevented him from pitching the ball. The symptoms would not go away and the only doctor who seemed to know what might cause the shuffling gait and tremors was their son, Mat Engel, a doctor in North Carolina. He ran all the tests and diagnosed Parkinson’s Disease.

Bruce and Teri knew nothing about PD, so instead of giving way to depression they started to research in books and on the internet. It was here that Bruce noticed a testimony from a lady in the UK who was suffering severely. She had a surgical procedure called Deep Brain Stimulation (DBS), in which a probe is implanted in the brain to block the signals that cause movement disorders. It opened up a whole new world for her and most, if not all, her symptoms were gone.

Immediately, Bruce and Teri started to investigate where they could have the procedure. They were told it would take a wait of at least one year before testing and three years after that for surgery. Bruce would have to be free of dementia and be in normal health.

The decision to undergo the surgery was very difficult but they talked to their son-in-law Matthew Harris, who was living in Seattle. Bruce had the insurance to cover the procedure and Matthew found an excellent surgeon experienced in DBS surgery Bruce was able to undergo DBS in 2010. There was a successful outcome and after a month they were able to return to their farm.

For a few years they were too busy to notice Bruce’s increasing difficulties and the depression was mainly gone, but PD is a progressive disease and, even with help from the family, the time came for them to let the farm go. Their son Mat now lives in Quesnel and is a great support.

Now, living in the centre of Quesnel, life is very different, but Bruce expects to keep his independence for another five years. He can still drive and, with help from the community programs such as Meals on Wheels, he is able to manage life on his own with help from Mat so that Teri can go and visit the rest of the family.

Teri decided from the first day they faced this disease that she would be the care partner. She does admit there are times she would like to escape, so Mat is her very important back-up. Now Teri is researching for the future as Bruce’s dilemma increases. I know they will make it because they have overcome the trials together.

Bruce started the PD support group in Quesnel. The group of 10 members meet in City Hall on the second Wednesday of the month at 2:30. Anyone who has contact with People with Parkinson’s (PWP) is welcome. They are connected with the BC Parkinson’s Disease Society, whose membership fee is $25 per year.

For further information you can contact Bruce Engel at 778-414-6010.

Books I would recommend which can be borrowed from Quesnel Library are: Parkinson’s for Dummies by Michele Tagliati, MD, Gary N. Guten, MDF, MA and Jo Horne, MA.

In the same section is found a self-help guide: Parkinson’s Disease by Marjan Jahanshahl, Clinical Psychologist and C.David Marsden, MRC, Psych, Dsc, FRS.

Marian Gillard is a regular Observer contributor.