During a pandemic, it is essential to invest in your emotional health and wellbeing. Dave and Ingrid Johnston have a love story that is all about finding perspective in difficult times; to learn to be adaptable and more loving while sharing a life.
Dave and Ingrid are holding hands. They have been holding hands since high school. It’s been almost 50 years, and their relationship is stronger than ever. They have learned the secrets to a lasting, loving marriage. “We follow these rules,” says Dave. “Work as a team, do not try to change each other, and never laugh AT each other, only WITH each other.” Honoring and respecting these rules have allowed Dave and Ingrid to embrace change while building a strong foundation in their marriage. They are supportive of each other’s interests (incidentally, Dave has many!). The couple has always created a space to share, especially when embracing overwhelming change. Dave’s diagnosis of Parkinson’s Disease was one significant change.
Sharing the humanizing experience of embracing a degenerative diagnosis seems to create a sense of calmness and kindness between Ingrid and Dave. They sit shoulder to shoulder during our interview. Without a doubt, they are on the same team. In any situation, no matter how difficult the emotional roller-coaster gets, they know, as best friends, they will be received with deep respect and appreciation. “It took a while for me to come to accept the magnitude of Dave’s Parkinson’s Disease. I needed to grieve the old Dave,” Ingrid says. “But life is constantly changing. We know that, but we don’t look too far back or too far ahead.” Dave pipes up: “We have experienced two different Daves in our marriage – one before and one after my diagnosis.” With every big event shared or set back experienced, each person in the union needs to be open and share their feelings, be supportive of each other, figure out how best to adapt to the new situation, and carry on life together. Using their guiding rules Dave and Ingrid fosters this type of relationship.
Living a good life together has been a deliberate choice that Ingrid and Dave have made. Ingrid has served as the anchor at various stages of their marriage, and both agree that no matter the challenges, life together gets better and better. They continue to take on new activities, even those that most would consider a risk, such as karate. A renewed life guided by a positive perspective, Ingrid and Dave sit side by side, looking out to the everchanging future together, committed to one another.
Tell me about your mobility challenges.
Parkinson’s Disease is a constantly changing beast that affects many aspects of movement, called motor systems (i.e. balance, gait, resting tremors, slowness, muscle rigidity) and non-motor symptoms, that basically covers everything else (i.e. pain, constipation, depression, anxiety, fatigue, memory issues, and possible dementia, etc.).
My symptoms are continually changing and require medication alterations and assistive device changes. In addition to the many hours of karate practice each day, Ingrid and I generally walk 5 to 10 kilometres or more each day, picking up our grandkids before and after school, and walking the paths, trails, and neighbourhoods in our area. During our walks, I had been using a walking stick and holding Ingrid’s hand for support. However, we found that my balance issues, and increasing slowness was causing her to experience back pain, and my ability to grip the walking stick firmly was failing me as my medications wore off.
In order to address these issues, we worked with our MD, OT, and PT; our PT recommended forearm crutches to benefit my symptoms. After a few days of research online, I purchased a set of SideStix crutches. The SideStix have made a world of difference in my mobility, posture, balance, walking pace, confidence, and almost complete elimination of my freezing gait – a Parkinson’s Disease trait where my feet feel like they’re glued to the ground.
We like to say that Ingrid’s been married to two Daves – one before and one after my diagnosis. The one before was a Dave that was cocky, arrogant, and very determined, social and never got anxious. Post-diagnosis Dave gets depressed, anxious, and has motor difficulties. These attributes are not because I face Parkinson’s but are the chemical/neurological outcomes of Parkinson’s Disease. Up to that point, life had been relatively easy. But after receiving the diagnosis, I am now more humble, vulnerable and empathetic than the previous Dave; I like this Dave better. I try to help other people more because they help me. It’s opened my eyes to the fact that there’s another side to this world than just what I’m doing. I feel I’m a better person. That’s what makes it work for us: we’re a good team. Ingrid’s helped me through all of this.
What does ‘defy convention’ mean to you?
My grandfather had Parkinson’s Disease, and he was one of the first trial patients of the new Levodopa drug in the 1960s. He was always a strong, supporting individual, and never let PD get the better of him. Even in the later years when he was bedridden, he always had a twinkle in his eyes when we visited him.
I want to be as strong as my grandad, and to continue to have my determination define me – not PD. I have a disease, but it is not a handicap. I don’t even like the terms ‘handicap’ or ‘disability’ because they don’t address my abilities. I see Parkinson’s Disease in terms of inabilities. I have always wanted to play the guitar and sing like Clapton, but I suck at it! That’s an inability, not a disability or handicap! Parkinson’s Disease will not define my life by disability, but as a person determined to adapt with abilities.
I am now a Nidan (2nd degree black belt) in karate, and a very proud member of our karate club. My fellow students, wife, and Sensei know I have PD, but they also know I want to be treated the same as everyone else. I fight as hard as I can, train as hard as I can, and practice as hard as I can. Even more importantly, I try to help everyone else to the best of my ability. They respect me as a sempai (senior) black belt, not as a person with PD practicing karate!
What are your passions in life?
Of course, my first answer is being with Ingrid. We’ve known each other going on 50 years, and I love being with her no matter what we are doing. Of those 50 years, we’ve been married over 42 years, and have 2 beautiful daughters (and their husbands) and five tremendous grandchildren to brag about! And two very special Newfoundland dogs Bailey and Geordie! Ingrid is the backbone of our family, and has participated, encouraged, and sometimes tolerated many of my and the kids’ pursuits.
I love to experience the “journey”, not necessarily reaching a specific destination. To name one specific passion is difficult because once I feel that I have reached my “goal”, I move onto something new. That’s why I’m still married to Ingrid… I don’t think I’ll ever stop being amazed at what she can accomplish!
- Owning and operating a small family electrical service company
- Pets such as cats, dogs, hedgehogs, hamsters, and fish
- Swimming and scuba diving
- Purchasing a 10 acre lot for camping and fishing
- Sailing lessons and owning a CS27 sailboat
- Motorcycle lessons and various motorbikes over the years
- Flying Ingrid’s Cessna 172M aircraft “Plane Jane”, and Ingrid tolerating all the time and joining me in courses towards my commercial pilot’s license, instrument rating, and Class 4 flight instructor rating
- Karate training on and off since 1971, and now having our own private little dojo. Ingrid is working hard towards her blue belt, while I am working towards my Sandan – 3rd degree black belt
What’s your idea of a perfect day?
The best days I’ve had in the last few years are karate grading, or testing, days. Whether being an assistant, observer, or being graded, it is a perfect day for me. Everyone is at their best: the observers encouraging those being graded, the Sensei and assistants working hard to help participants do the best they can, and individuals doing their best through every kata, kumite, or exercise. The absolute best part is that it involves Ingrid, our family, and friends.
Through all the sweat and tears, everyone wins! The grading is a competition against oneself, not a comparison to others. Afterwards, we hold a small get-together to celebrate everyone involved, and review the hardest and funniest parts of the day. I forget all about PD on those days!
What’s your favourite thing about SideStix?
SideStix have helped me regain my confidence in many situations, and given me back my independence. I still can’t fly a plane, drive a car or a motorcycle, but I can just about outpace Ingrid! (laughs)
My SideStix are lightweight, strong, durable, and very easy to use – not to mention how cool they make me look! The SideStix team have given Ingrid and me tremendous support (pardon the pun!).
As a matter of fact, we’d been measuring my height and I’d been shrinking since being diagnosed. Since using SideStix, since they hold me more upright, it’s actually expanding my back; I’ve grown almost 3 centimeters in height – back to where I was! It’s not just posture, it’s also stretching my spine out, and that’s helping tremendously. The SideStix are helping my posture, my mobility, my balance, as well as giving me confidence. I find that when I have the crutches, people give me a wider berth, so I have much more confidence in a crowded area.
They address most of my mobility needs all in one shot.
What are your favourite ways to stay motivated?
The best way to fight the progression of PD is exercise. I must admit that starting each morning at 4am to practice is sometimes a challenge. It is at those times that I remember Ingrid’s favourite saying: “You have to look after yourself before you can look after others”.
No matter what the day before brought me, I start each morning by saying to myself, “Today is going to be a good day!”
Lead by example. The more I practice and train at karate, the better example I’ll be to others learning the art.
Learn to laugh at all your mistakes. I may not get any better at whatever I was trying to do, but I’ll have fun trying!
Learn from other people and how they stay motivated – a great deal of them have problems far worse than mine, and they keep going.
Do you have a message for other crutch users?
Practice and push yourself to use the crutches in different and challenging ways. Try them in crowded places, on ice and slippery paths, in deep snow… try to go out and find unique ways to use the crutches to your benefit; they give you a far greater reach!
Be proud of yourself and your cool crutches. I love the smiles people give me when they see me pushing the limits!