Life with Parkinson's, Part 3 of 3

Shanon Weselake

In Part One of this series, we pointed out a few of the lesser-known indicators of Parkinson’s Disease. Interestingly, when I asked Shanon Weselake what she misses most from her pre-PD days, her answers tie in with those less familiar symptoms.

“I miss being able to do things quickly. Today I was out walking, thinking I was just motoring along, when this woman passed me on the left and in a few seconds was way ahead of me. I could have sworn I was going that fast too, but apparently not.

“I also miss my handwriting. On the days when it is not too sloppy to read, it is so small you need a magnifying glass to decipher it.

“I sometimes miss my sense of smell and taste, but that loss comes in handy when changing diapers or swallowing bitter pills.”

How’s that for staying positive?

In his book, Perseverance, Tim Hague writes about how reluctant he was to admit his weaknesses—especially when competing with his son, Tim Jr., in The Amazing Race Canada. His 15-year-old twins told him, “Dad, whatever else you do on this trip, please don’t embarrass us!”

Thankfully, Shanon’s offspring are beyond those teen years. “I have fallen with my bike numerous times,” she admits. “Those bike helmets are a good idea. My cell phone is never far away. Small things that I can’t do quickly, like getting my change or credit card back into my wallet, or, under pressure, not remembering my pin number or postal code, can make me feel embarrassed.” She considers these incidents simple annoyances that she must accept.

It would be easy to understand if a soul-crushing diagnosis like Parkinson’s destroyed someone’s faith in a healing God. I asked Shanon about that.

“I believe God is a God of compassion and that is often evidenced by physical healing of people. I believe we ask for healing because that is the best prayer we can imagine. I have and do ask for healing from Parkinson’s. I know others ask for me too. I am grateful for them. I would not be surprised if Jesus heals me, but I will not be the one to make that decision.

“Meanwhile, I feel the measure of health I do enjoy is God’s blessing on my life due to people praying. I am realizing that the faith needed to live and die without being healed is no less miraculous than the faith needed to be healed.”

When I asked Shanon what she would say to someone who has recently received this diagnosis, she offered four points:

· Give yourself as much time as you need to process the news and be selective with whom you share it.

· Get information in bite size pieces to help you understand the disease without it overwhelming you.

· Live as close as you can to the present.

· Talk to God, as He is available anytime.

“Years ago,” Shanon says, “I agreed with God that I should be His follower. We’ve walked together long enough that I know I can trust Him. Sometimes I have disappointed Him, but He forgives me. Sometimes I feel disappointed when things in life don’t go as I would like. Having this illness would be one of those times.”

Shanon says living with PD has affected her faith in two seemingly contradictory ways which could be summed up as, “Don’t think about the future. Think about the future.”

“I am much more conscious of living one day at a time and not letting it slip away without appreciating the life God has given me today. I try to spend minimal time wondering what I might be facing next month or next year.

“When I do think about the future further down the road, I’m trusting that the same One who has walked with me on earth will walk with me in heaven. And He won’t even have to slow down for me.”

(A note from Terrie: If you’re scratching your head over the resemblance, the subject of this series has been my beloved big sister all her life.)

 

Life with Parkinson's Disease, Part 2 of 3

For Tim Hague, a twitching left toe at age 46 was his first red flag. As a nurse, he knew enough about Parkinson’s Disease to know it’s impossible to ignore no matter how much you might want to forget. In his book, Perseverance, he describes the initial days of believing somehow it would go away or his doctor would be proven wrong.

Shanon Weselake can relate. “I find that the emotional and cognitive effects of Parkinson’s are as challenging as the physical symptoms,” she says. “This disease causes your body to produce less and less dopamine which in turn affects other chemicals in your body, like serotonin [a key hormone that stabilizes your mood]. I did not use medication for the first several years and was quite opposed to starting it for reasons I don’t really understand. I thought I should be able to fight this illness at every level.”

Now, she realizes how unrealistic that was. “I am so thankful for the medications available that help to lessen the tremors, settle the emotions, and add clarity to my thoughts.” She defines her main challenge at this point as being disciplined enough to do the things every day that will keep her healthy the longest: praying, exercising, eating well, resting, laughing, enjoying people, and not hurrying.

Tim Hague writes about finally determining to get moving after a year of basically shutting down, trying to hold his shaking limbs still even when it was impossible. He took up running and cycling and set new goals for himself. Now, Hague helps other PD patients through his charity, U-Turn Parkinson’s, whose mission is to empower those living with PD in their pursuit of wellness. Using boxing, yoga, music and more, PD patients and their families receive encouragement, information, and inspiration.

Shanon understands how important support is. She’s found excellent resource people, programs and media info through government and volunteer organizations. Podcasts and online workshops have helped her learn about the disease and hear other people’s stories.

“My main supporter, though, is my husband Larry. We share the responsibilities for household management, but he does so much more shopping, cooking, cleaning, driving, corresponding, banking, bill paying, grandkid care than he once did. He graciously moved with me to an apartment to simplify my life. He prays for me every day.”

I asked Shanon if she ever gives in to self-pity.

“Feeling sorry for myself is an option. I’ve tried it more than a few times and it’s not working for me. I can only speak for myself and I know that many with PD are so much more afflicted than I am at this point, so my words may not apply to all. However, I often find myself thankful I’m not presently suffering from any other diseases which I think would be harder to live with. I am blessed to have family and friends who watch out for me and include me in their lives. I feel accepted as a person who lives with Parkinson’s, not a person defined by Parkinson’s.”

Tim Hague agrees that attitude is everything. “Our North American culture often tells us that we should look, feel, and be successful,” he says. “Yet any success I’ve had has come only after significant ordeals, and rarely did I ever feel successful along the way. But I’ve learned to persevere. This is an important point to hold on to: perseverance can be learned…if we learn its lessons our lives will be deeper, richer, and more vibrant than we ever imagined.”

Next week, we’ll find out what Shanon misses most and how her faith has been affected.

Shanon on a missions trip to Mexico in 2015

 

Life with Parkinson's Disease, Part 1 of 3

My sister, Shanon Weselake

In 2013, Shanon Weselake visited her doctor for an unrelated reason and mentioned that her right hand seemed somewhat unsteady.

“Let’s send you for an MRI and see what we can find out,” her doctor said. Several months later, the results did not indicate anything observable. Neither Shanon nor her doctor thought it necessary to see a specialist.

“At the time,” Shanon says, “all I knew about Parkinson’s Disease was that it causes the body to tremor. Had I known the many other motor and non-motor symptoms, I would have taken a more serious approach. Only later did I realize I had multiple symptoms.”

According to a Mayo Clinic article on Parkinson’s, symptoms vary for everyone but can include a tremor (usually beginning in a limb, often your hand or fingers), slow movements, rigid muscles, impaired posture and balance, speech changes, loss of automatic movements such as swinging your arms when you walk, and changes in handwriting. Shanon’s daughters may have noticed some of these additional symptoms. They encouraged her to call for a referral to a specialist.

“A few months later, I was sitting in the doctor’s office at the Movement Center in Winnipeg. After an hour or two of clinical examination, I was given the diagnosis: Parkinson’s. My husband was with me and we were both in shock and too uninformed to even know what to ask. I had gone in thinking this appointment would confirm that I didn’t have this disease, but the opposite was the case. The drive home was quiet but emotional as we had some processing to do. We had a little handful of pamphlets to start our learning journey.”

Parkinson’s, put simply, is a nerve disease of the brain. PD causes nerve damage to the part of the brain responsible for producing dopamine, critical for proper movement.

If you watched the inaugural season of “The Amazing Race Canada” in 2013, you’ll know the name Tim Hague. From Winnipeg, Tim and his son, Tim Jr., won the race against all odds and became instant celebrities as a result. Three years earlier, at 46, Hague had been diagnosed with early onset Parkinson’s, a disease that cost him his beloved career as a registered nurse. “Parkinson’s is an insidious, evil sneak that slowly robs you of the ability to control your body,” is how Hague describes it in his book. “Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More than You ever Imagined” is an engaging and inspiring account of Hague’s experience on the reality TV show and his journey with Parkinson’s.

Hague talks about the importance of associating with others on the same path. I asked Shanon whether she had connected with other PD patients. “At first, I was not comfortable talking about my diagnosis,” she says. “I kept the news in a small circle of family and friends who prayed for me. However, numerous people were beginning to ask me questions. ‘Are you okay, Shanon? You look like you have a sore back.’ There was never a week that I didn’t get asked a question.

“Then a very sweet friend of mine, who works in the medical arena, came for a visit. She asked a few questions and I told her about my diagnosis. What an incredible blessing that was. Unbeknownst to me, her mother also has Parkinson’s and so she was a wealth of knowledge. She had been walking alongside her mom for years. By then I’d done enough research so that I could ask questions. I felt like God sent her to me when I really needed her. Soon after, I was able to start talking about this disease freely.”

Next week, we’ll delve deeper into Shanon’s journey.