I cannot remember the date, except that it was cold outside with no snow. I can’t even remember who told me about this seminar. I think I was in the office that day so I went after work. I think I took the TTC bus to Sunnybrook with my laptop so I could work from home the next day.
I had never been there before. Sunnybrook Hospital in Toronto is a huge place and luckily the people who work there are always looking out for lost people. I was directed to the auditorium. I was early, but I wanted to be early. I was having difficulty hearing, and crowded rooms often made me dizzy, so I wanted to find a safe place to sit.
Sidney Crosby had suffered a third serious concussion in a November NHL game. He didn’t play for many months. Suddenly there were news articles, and discussions with soccer parents on the radio, and vigorous debates in my friendly work hockey pool about concussions.
Everyone had an opinion. They all knew I had suffered a recent concussion.
“He’s a wimp” “Glass jaw, just like Lindros” ” No kid of mine will ever play hockey” ” You know that all those old NFL players have Alzheimer’s now?” ” Ah, just get up and shake it off!” ” What do you think happened to John Kordic?”
In the Sunnybrook auditorium we learned that there was a thing called Post-Concussion syndrome, and the possible life-long effects of multiple concussions were explained. At least 15 symptoms of Post-concussion syndrome were listed on screen, and I had 13. They stressed the phrase Traumatic Brain Injury as being more descriptive than just ‘concussion’.
I took some notes, or I wouldn’t have remembered any specifics. An ER nurse describing the initial symptoms of a concussion. A gerontologist said that falls and car accidents cause more concussions than sports.
Retired NHLer Keith Primeau** was to speak by video conference to us from his home in the US.
Primeau came up on the video screen. He had retired from the NHL in September 2006, after 15 seasons as a star centre, unable to play because of his concussions. He talked about his life, what he could and couldn’t do. He talked about rehab and the importance of going to concussion specialists. He is a big man, but he didn’t sugar-coat anything. Physical strength was not the path to his possible recovery. He talked about how his concussions had affected his family life.
This room was full. 200 people? Maybe more. People were standing at the back, sitting on the carpet. Everyone was taking notes and waiting to ask questions.
“So are there any Questions?”
The room erupted. A line formed behind each microphone. Anxious sports parents, women in large dark sunglasses who couldn’t handle the bright lights, caregivers, people with canes and walkers, concerned coaches and EMS workers. They were all worried. They were hungry for more information. They thanked the speakers and asked for information on rehab programs, upcoming seminars, and on new studies that needed volunteers.
They asked Primeau if he let his kids play hockey, with what he now knew. He said yes, but only because they really wanted to. He said he was more watchful than the coaches in his own past and that he hoped that he would know if he had to say ‘No More.”
I wrote down three things Primeau had said. He had serious trouble flying/travelling with his symptoms, and he was still doing rehab after all of this time
He also said that he had noticed some small improvements recently, giving him some hope of getting back some functions. He said it was six or seven years since his last concussion. That night I thought, six, seven years– oh my god.
Searching back today in Google, I think this seminar was in early spring 2012, but I can’t be absolutely sure. My concussion was in October 2010. I had already seen an ENT for my tinnitus and hearing loss, as well as a neurologist for my migraines. But I still had all these other symptoms!
I took the notes I had made to my family doctor and he referred me to the Brain Injury Clinic at St Michael’s Hospital. As well, I was referred to Vestibular Therapy at Sunnybrook, and to a psychologist specializing in trauma to help with emotional challenges due to my symptoms.
It is now eight years since my accident. I am not in rehab, but I still do rehab. And I recently had some small improvements in my symptoms; I can use the telephone more than before, and I can use my iPad to send and receive text and photos on simplified programs, for a limited time per day.
I have hope that some things may continue to improve, and that my brain will continue to adapt.
When I was in Year Three, Year Five, or Six, after my accident and my life just seemed very dark and narrow and heavy? I would think of what Keith Primeau said, not as some ‘hero’ but just someone saying how it was, who told us that he felt improvements after all these years. And stubborn as I am, I thought, just keep working on rehab, work with what I can do. Keep trying and see what happens.
So many thanks to Keith Primeau!! I am seeing small improvements, thanks to you! I wish I could shake your hand, and tell you how straight talk and a bit of hope helped me through some very dark times.
** Keith Primeau continues to educate and speak about TBIs and the long term affects of concussions. He has said he is donating his brain for research after his death.
Coming up: Wild and Crazy Ideas, Problems with Motor Skills, and Standing up for myself at the Library.