My name is Bill. When I was thirty-seven years old I was diagnosed with Parkinson’s a neurodegenerative disease. I am now seventy-one years old and I’ve had Parkinson’s for almost half my life. As my disease progressed, so did the challenges I faced, but my spirit has remained unshakeable.
Parkinson’s causes progressive motor disability. It begins with a tremor, loss of normal arm movement — one of the first manifestations of the condition in my case. Articulation of speech becomes worse as coordinating the tongue, jaw and lips grows more difficult. Over time, the trunk of your body becomes rigid and your manner of walking degenerates, resulting in you only being able to take small, shuffling steps. Gradually, you lose your ability to initiate and control your limbs and you’re locked inside this rigid, trembling and unresponsive body. Despite the deterioration of the body, few of us with the disease suffer cognitive impairment, and so we are fully aware of our deteriorating physical function.
In my fifties, I had three experimental and very innovative brain surgeries to improve my physical motor functions; these were of provisional success. Despite my problems with the decline in my physical condition, over the years I remained intellectually capable. Because of that, I was able to share my experiences about living with Parkinson’s with others. I have written papers on the subject, a booklet for people with Parkinson’s who are considering neurosurgery, and I have also authored a book about my experiences with the disease. I also designed what became Ontario’s Trillium Drug Plan. I suppose I am virtually a professional Parkinsonian.
It is with the support of my daughter, Emily, who has been instrumental in keeping our family together, that I am able to share my story and the quality of care I am receiving at The Salvation Army Toronto Grace Health Centre (TGHC).
My wife, Esther, suffers with Multiple Sclerosis. A few years ago, our conditions progressed to the point that we were unable to care for each other. As a result, we lived together at a nursing home. However, my challenges with Parkinson’s are continuous, and while I was at the nursing home I had a terrible fall. As a result of my injuries, I required a tracheostomy (an airway tube) to help me breathe. In addition, because I was unable to swallow safely I could not eat, and required a gastrostomy (feeding tube) to help provide me with nutrition. After these surgical procedures, my need for skilled nursing care began to exceed what the nursing home could provide. I needed to have my tracheostomy managed as well as rehabilitation. I was admitted to the TGHC’s Complex Continuing Care (CCC) unit in January 2013.
My goal when I arrived at the TGHC was specific — I wanted to return to the nursing home so I could be with my wife, Esther. However, before the nursing home will accept me back I need to have my tracheostomy tube removed (decannulation). Breathing without the assistance of a tube would help reduce my care needs back at the nursing home. The nursing and interprofessional health team at the TGHC respected my decision and began immediately to work toward my decannulation. The staff also worked with me on my general physical rehabilitation so I wouldn’t develop muscle atrophy, and I could maintain my independence.
I was slowly weaned off my tracheostomy tube, spending a few short hours every day without it. The tube would be capped, cutting off air circulation and prompting me to breathe on my own. The nurses would monitor my breathing for shortness of breath, a good cough and no phlegm problems. This process will continue until I achieve complete decannulation.
The nurses and interprofessional health team are outstanding. They are just as determined as I am for me to improve my health so that I will be able to return to my wife. However, two decannulation attempts were made in 2013 and regrettably they were not successful. On the second attempt, I was able to breathe on my own for almost a month and it looked promising that I would return to Esther. However, success did not last much longer. We have agreed that we will discuss a possible third decannulation in the future.
In my rehabilitation program, Laura, my physiotherapist, helped me retain my ability to be mobile. I was already able to transfer from with my wheelchair to a bed or walker; she worked with me on moving my limbs in a functional manner helping to maintain and improve my flexibility, balance and strength.
Dori, my occupational therapist, was very helpful and astute in re-customizing my old wheelchair. A new back was ordered so that it could accommodate my kyphosis (hunched back) and rigid posture. The back cushion was designed with an opening that would help me avoid getting a pressure wound on my back.
Although I don’t attend now as often, I also took part in recreational therapy programs like Tai Chi, On the Move, and Seated Yoga. I plan to return with more regularity because, besides helping me maintain my physical abilities, recreational therapy is a good place to meet other patients and socialize. Even though I can’t help my Parkinsonian mask (rigid facial structure), I do like to socialize, and I enjoy many conversations with the nurses and interprofessional health team. I feel I have developed some wonderful friendships at the TGHC.
I do see Esther when Emily is able to organize a rendezvous at her apartment, the nursing home, or here at the TGHC. I know the logistics of our visits take a certain amount of preparation and planning, and I am thankful to everyone at the TGHC for their support because I really look forward to these visits.
My wonderful daughter, Emily, got married this summer in Gatineau, Quebec, the same place where Esther and I were married forty-six years ago. She wanted Ester and I to attend her wedding and her special request was that I walk her down the aisle. My goal was to fulfill my daughter’s wish.
The wedding took place in July 2014 and eight months out there were many questions. What type of flooring would I be walking on, what type of shoes would I be wearing — I usually wear sandals — and on which side of the bride was I going to be? Good rehabilitation questions I suppose, but they just sounded like normal wedding planning questions to me. Together, Dori and Laura helped me with my pacing, because like most Parkinsonians, I shuffle quickly when I walk due to my rigidity. We practiced using a cane and worked on maintaining balance, strength and mobility.
Meanwhile, the TGHC was moving forward with renovation plans at the Church Street location, and there was a relocation of patients and staff, equipment and furniture to Hillcrest, our temporary new home in the spring of 2014. This brought about changes and a reorganization of health care staff, patient care units and a different floor designation for patients. In March 2014, Michelle, my current occupational therapist, and Barbara, my current physiotherapist, began working with me. Even with the move, uninterrupted, both Michelle and Barbara continued to provide the same quality of care in helping me achieve my goal of walking Emily down the aisle. I practiced with both therapists supporting me on one side as I balanced myself with a cane. Everyone did an outstanding job.
As the father of the bride, I wanted to give a speech. Three or four times a week I met with Ashley, a speech-language assistant, and Lisa, a speech-language pathologist, to work on my speech. My penmanship is limited, which makes writing very difficult. Sometimes, however, I am able to communicate what I want to say in my speech; other times, we use an alphabet communication board. I would point to letters and spell out the words, and if we get stuck, we would search the Internet for samples of father of the bride speeches. It was hard work, but because of Ashley and Lisa’s commitment, we succeeded in writing a father of the bride speech. My preparations were supposed to be secret but I think Emily knew what was going on.
I think the wedding was a success, although if you ask any bride she certainly will tell you what didn’t go right. The night before the wedding I attended a cocktail party. The next day I walked Emily down the aisle, and at the reception, Tony, my brother-in-law, read my speech. It was liberating to be with my family, and I was thrilled to have made the journey so I could be with Esther to celebrate this wonderful occasion and to create one more memory in a place that made us both happy. I think that was Emily’s goal.
I would like to thank the TGHC’s nurses and interprofessional health team for their outstanding dedication and hard work; the care they provide is special. As I continue with rehabilitation, my goal now is to be with my wife. In the meantime, I’m trying to establish a few more friendships on my new floor; hopefully, some of the staff and patients will have the time to stop and say hello to a Parkinsonian. My name is Bill and I’m here.