Yvonne Morgan was already familiar with tragedy when she was diagnosed with Parkinson’s disease at the age of 52, a decade ago. Her first husband died of a brain tumour at 38, leaving her with four children aged 10 to 17 to raise on her own in the village of Addison, just outside of Brockville, Ontario. While it was a struggle, Yvonne had plenty of family in the area to lend a hand and “the kids were great,” she says. She was also fortunate to meet her second husband David and remarry in 2001. Between them, they have eight children and 11 grandchildren.
When Yvonne was diagnosed, she was a working as an administrative assistant at the Brockville Psychiatric Hospital. She also had previous experience working with homecare and long-term care patients. “I knew what Parkinson’s could do to you,” she says. She’d also watched her sister Irene cope with her own Parkinson’s diagnosis 10 years earlier.
Yvonne first connected with Parkinson Canada by participating in an exercise class. She later joined the Brockville support group and has taken part in their local Parkinson SuperWalk. “The support group is a great way to connect with others in a similar situation. Sometimes David will even attend alone, when I can’t make it,” says Yvonne. The members meet up with one another outside of meetings too. “And SuperWalk has bonded us all even more. It is a chance to meet the families of our group members.”
Read on as Yvonne shares her own personal account about living with Parkinson’s; following Yvonne’s reflection, her daughter Sandra Villeneuve tells the story through her eyes over the years.
What it is like to live with Parkinson’s
When I was first diagnosed, I didn’t think why me? I thought why not me? My sister Irene had been living with Parkinson’s disease for years and kept such a positive attitude towards life. Couldn’t I do the same? Parkinson’s disease hits every one differently. Irene had trouble with gait freezing, not being able to move. I noticed my handwriting was small and although I had always been a fast, accurate typist, I was getting many red lines on-screen showing I was making mistakes. How could this be? I realized my one hand was typing faster than the other and everything was out of sequence. I also became so tired I could hardly stay awake in the afternoon at work. People started to notice. It was a fatigue like I had never experienced before. I saw a marked difference in my lack of expression and I had a slight tremor in my jaw.
My family doctor diagnosed me with Parkinson’s disease, but made me an appointment with a neurologist Dr. David Grimes in Ottawa to confirm the diagnosis. He is a wonderful doctor, very thorough and caring too!
Parkinson’s is so much more than having a shake or tremor or even so much more than a shuffling gait. Parkinson’s robs you of the person that you are and the person that you could have been. Every day you notice new things: numbness in the left foot, more dystonia, leg cramps and spasms. Painful to say the least. You may notice your eyes are blurry. You have dreams so vivid you sometimes act them out by kicking, screaming, pushing or jumping out of bed in fear that you are being chased by wolves or snakes, etc. You may have trouble with constipation, or trouble completely emptying your bladder, or experience frequency or sudden incontinence.
Some other symptoms you may experience are depression, anxiety, lack of concentration, onset of Dementia, small cramped handwriting (micrographia), lack of facial expression, the list goes on and on.
The person you had planned to be when you retired is no longer there. Instead there is this person who has to function on a three-hour medication schedule with slowdown periods half an hour before your next pill time, and then another half-hour wait until you are at your maximum level again. You feel like a little old lady with increased poor posture and your neck protruding several inches before the rest of you. It isn’t easy, but then neither is any disease. You feel embarrassment when you meet someone you haven’t seen in a while. They really notice a decline in your health. You want to scream out: “I don’t need your pity. I don’t want your sympathy. I am still alive here in this body.” Although it may seem my body is playing a horrible trick on me, this is still me! I am only 62 years old. I have at least a quarter of my life time to live out yet.
Thankfully there is medication, Levadopa being the gold standard. It gives you your life back for a while, but then it is known to sometimes turn on you. It stops helping, or it gives you nasty side effects like dyskinesia.
All in all, it is not a pleasant thing to have Parkinson’s disease. Now I find myself occasionally saying: “I wonder what the future holds for me.” None of us know. A person could be involved in an accident or develop terminal cancer. I am thankful I have an understanding of my disease and I have heard it said many times: “You don’t die from Parkinson’s, you die with Parkinson’s.”
We have a terrific support group in Brockville. It is a great help to me. I look back in my life and remember those I knew who had Parkinson’s. There were many of them, from all walks of life. I have found the best way to deal with this disease is to do what you can on your good days; take mid-day naps when you feel fatigued; be grateful for the things you can do and try to focus on others instead of yourself and your issues. My faith in God, and knowing I am never alone in my walk through this journey, keeps me going. I am so thankful for my husband David, and my family, for their support.
A special thanks to the facilitators of our Parkinson Canada Brockville support group, Maria Millward and Robin McMillan and to the Community and Primary Health Care centre for the space for our meetings. You are amazing people! Your dedication to our group is really appreciated.
A tribute from Yvonne’s daughter Sandra Villeneuve
When we asked Yvonne’s eldest daughter Sandra Villeneuve for her thoughts on the impact of Parkinson’s on her mother’s life and on the family, and about their plans for Mother’s Day, she sent us this lovely tribute. With Mother’s Day still fresh in our hearts, we thought it fitting to share what she submitted to us.
How Parkinson’s has touched our family?
We grew up watching our mom take on many life challenges – living in the country meant lots of hard work, being a widowed mom of four kids and teens, we saw her go back to school and even move to a new province to pursue more career opportunities.
She has always been strong, funny and above all, very giving to her family and friends and community. So in a way, her Parkinson’s diagnosis was just another one of those challenges that she faced bravely. Where many people diagnosed at a younger age might avoid other people more advanced in the disease, not wanting to associate themselves with people aged by their physical symptoms, one of the first things she did was find a support group and ask for advice. The words of wisdom she took away sum up how she lives her life now – do as much as you can, while you can. Move to the Philippines for a year? Better now than never! She has done lots of travelling, but also uses her time generously to help family and everyone around her. Visiting seniors in a nursing home, babysitting grandchildren, helping us in all our big moves, and volunteering with her church community.
It is hard sometimes to accept her limitations, and I know that even though her kids are now all adults, she still tries to protect us sometimes, scheduling her meds to be at her best for our family gatherings, trying not to complain about the awkward and frustrating symptoms and side effects. But she is open about her struggles; I’m glad she can talk about it with me. There are so many random, weird symptoms to deal with – all the shoes she passes on to my sister and I, trying to find shoes that are comfortable and secure with shuffling and foot cramping. The frustration of seeing peoples’ reactions to her changed facial expressions, or their lack of understanding for the invisible symptom of fatigue.
This Mother’s Day will probably be our usual get together at their house, maybe a BBQ with lots of food and grandchildren everywhere. There will be gifts of flowers for her garden and flowerbeds that she still enjoys working on. It’s a time to celebrate her, my sister and sisters-in-law, who are also moms, and all the great qualities that we associate with moms, that she lives out so well – love, generosity and self-sacrifice, with a big helping of laughter and appreciation for beauty in the everyday. I aspire to be more like her every year, living life to the fullest, doing all you can while you can, appreciating my health and giving back to my family and community like her.