Stories of Hopes
To get an authentic look at what a day in the life of Parkinson's disease looks like, the Parkinson’s Society of Alberta interviewed
Wayne and Carole Hale of Edmonton, Alberta. Here is their story:
Treasure the Moments
“We can no longer put the disease in the back of our minds as Wayne’s mobility, speech and dementia makes it impossible to ignore.”
My introduction to Parkinson’s disease began when my husband Wayne was diagnosed at the age of 47 years. With no formal training I took on
the role of Wayne’s primary caregiver. The learning curve has been steep, but with both of our involvements with The Parkinson's
Society of Alberta and the Parkinson’s Community we have learned a lot. Without their support, Wayne and I would be far less
knowledgeable about the disease and the struggle would be much harder. Being a member of the Parkinson’s Society made us realize
that we’re not alone in the fight.
Prior to attending the caregiver program, there were a number of obstacles we faced as Wayne struggled with his condition and loss of
physical and motor skills. For example, use of the phone, remote controls, brushing teeth, bathing, and shaving require a lot more
time than they used to. The computer is no longer possible as he struggles to dial numbers, press buttons, and type characters on the
keyboard. Using basic kitchen appliances such as can openers and microwaves have become increasingly difficult.
Wayne’s worsening condition causes a great deal of stress in the home for everyone.
As Wayne’s primary caregiver, there are a number of things that I need to do to make each day more convenient like make a list of to-do’s,
lay out his medications, prepare his meals, organize a daily calendar to remember events, manage all financial issues, and plan our social
life. This year Wayne failed his driver’s test and is required to be assessed on an annual basis. Last year, we sold our home in
St. Albert and moved into an apartment close to my daughter and her family. This move has helped to support Wayne in his everyday tasks .
Wayne’s Parkinson’s has progressed considerably, which has proven difficult for us to handle our emotions and feelings about the disease.
We can no longer put the disease in the back of our minds as Wayne’s mobility, speech and dementia makes it impossible to ignore.
We both have had to accept changes in our life and try our best to move forward; however, without the support of our family and friends
we would not survive. Without the help of family, friends, doctors and the Parkinson’s Society of Alberta we would not have been able to
manage as well as we have. Our lives have been severely impacted by this disease. Watching Wayne’s progression has been painful for
me as well as our family and friends. I reached out to our family and a friend to see the changes that they have noticed in Wayne
since his diagnosis with Parkinson’s disease 14 years ago.
From our daughter, Denise: “I first started noticing changes in my stepfather, Wayne in 1994. Since then, the physical
symptoms have progressed to include a loss of hearing and fine motor skills, hand tremors, shuffling walk, poor speech, choking,
vacant eyes, dementia, and weight loss. Presently and more importantly, I see a very loving man fighting to keep his pride
and independence. It reminds me of a book I read by Margaret Laurence called the Stone Angel. She makes a reference to chains that
I believe can be used as a metaphor for those who both suffer from, and stand in support of, individuals who have Parkinson's disease.
"I was alone, never anything else, and never free,
for I carried my chains within me, and they spread
out from me and shackled all I touched"
(p. 292). Stone Angel
And from our dear friends and neighbor, Marvin and Marilyn Rice: “Wayne Hale has impacted our lives in so many ways.
It was Wayne who brought all us neighbors together. It is with great pain that we have watched Wayne change due to Parkinson’s.
He is still the kindest, sweetest man you could ever meet but he has changed. He has trouble carrying on a simple conversation..
As well, we have watched Carol go through so much with Wayne and struggle to hold it all together but she does it with great
determination and love. We truly love Wayne and so wish that we could wave a magic wand and make him all better but we can’t so we
just love him for the person he is today and continue to be there for him and Carol.”
Wyane and Carol Hale