Despite all the best-laid Blogging plans: Post-TBI, I’m just like anyone else

I usually have two or three draft-blogs that I am working on at any one time. If I feel inspired, or get an idea in the middle of the night ( my pen and post-it notes are ready) I can finish and publish.

I have three or four almost ready to go right now, but I have been feeling ill and unable to finish. I have had a lot of pain this last two months without knowing why. It makes me tired and crabby. It is confusing because it has been very unpredictable.

Terrible sharp pain for hours; then it vanishes and I feel normal.

This made me realize that I have had quite a variety of pain because of my Post-Concussion symptoms, and because of that I don’t tend to treat other pain very seriously. Take a pill, have a shot, have a massage or a hot bath. I’m not thinking “Why am I getting this pain,?” like normal people do. Coping with and reducing the pain has been my main concern.

I can only focus on one problem at a time these days, but that is normally ok. I can prepare for medical appointments, do household chores, and enjoy socializing– but this new pain has cut a huge gash into my winter months. So some days this mystery pain has become my only focus.

But then I feel better again, and I think, ” ok that was just gas” or ” maybe just a strained muscle” or ” well, I’m getting older so maybe it’s normal?”

Bad thoughts.

Last week I had two very painful attacks while at home. I thought I was going to faint. That scared the shit out of me, that I could hit my head again while fainting. I went to the doctor the next day.

We haven’t yet received all the test results but I do have some medication and a diagnosis that could explain part of what is going on. I am relieved.

I feel that this is just something to remind me that I have to be aware of my whole health, not just post-TBI symptoms. Pain is not going to go away if I just ignore it.

I hope we find an answer soon. I hope that I will be blogging more consistently in the future. But my biggest hope is that I escape this creeping blanket of pain, and can enjoy all the joys of Spring.

Thank you,

Patty

Still to come: the Library, and Motor-skills and more.

Advertisements

Post-Concussion: HNIC in Punjabi! And a fond farewell to Bob Cole.

Saturday night, beginning of April, 2019, 9:30 pm. The hockey playoffs start soon and some teams are on the bubble. Can I watch the fast action of a TV game without bonking out with fatigue?

For at least two years after my 2010 accident and TBI I couldn’t watch the first 20-minute hockey period without having to suddenly lie down in the quiet darkness, to recover and often to sleep. My brain was unable to cope with the scramble of words, movement, and conflict that I was seeing and hearing on TV.

For two years I couldn’t watch the playoffs or the Final: the first time in almost 30 years that I had missed them.

I tried watching hockey games with no sound. I still couldn’t follow the play, and got confused. Then I’d still have to lie down to rest. I think that was year Three.

I tried listening on the radio. That was ok but I felt like it was wallpaper. I could no longer visualize the play from what I was hearing. That was a change. Why did it just sound like blather?

While a grad student in Montreal I had often listened to hockey on the radio, even the playoffs! And I had listened to the FIFA World Cup on the radio since then. Suddenly it was a lot harder. I got annoyed, and turned off the hockey.

I used to read, write, or putter while the play-by-play ran. As the voices got excited, I easily switched my attention and got back into the play. Bob Cole has always been my favourite because I could catch up to him in mid-sentence and know what had passed. I will miss his easy-to-follow style; his last game is Saturday, April 6.

The so-called colour commentary throws me right off. I just want to hear about the play. I don’t care how many assists so-and-so had as a junior, I don’t care what the commentators’ had for lunch, and I don’t care about the trade gossip while I am trying to watch a game!

Blah Blah Blah!

Somehow I stumbled across Hockey Night in Canada in Punjabi. It is on OMNI television here in Toronto, BC and Alberta. I may have been searching for French CBC when I found it, at the upper end of my rabbit-ear universe.

I can watch and listen to this when I cannot handle English-language play-by-play. It is soothing. I can tell when the action is speeding up, and the players’ names and certain terms are similar to the English broadcasts.

It gives me the information my brain needs, but without cluttering up my brain with useless sounds or distracting information. I can enjoy watching a game without worrying about crashing in fatigue. I can even contemplate the playoffs!

Perhaps a neurologist, or a neurolinguist would be able to figure out why I get vertigo and fatigue from some English announcers (never from Bob Cole!) but not from the Punjabi play-by-play. Or French either, and I do understand a lot of TV French.

Right now I am just happy to have found a haven, a safe way to be a fan again. It is a happy distraction from some of my post-concussion limitations, and a welcome distraction from politics.

It just reminds me yet again that the solution to a problem is rarely a simple issue where the brain is concerned. Possibilities come from unexpected sources, and after a concussion we have to be open to novel experiences.

Happy retirement, Bob. I will miss you.

Thanks,

Patty

Coming up: Motor-Skills problems, Trouble at my local library, and Genealogy is like Crack!!

It’s Spring! Gardening Post-TBI

Above: Huchera in our backyard last week


I think that one of my earliest memories is from my grandmother’s garden. I know that I was very small because the flowers were waist-high. I was allowed to pick a few, and then we walked up the small path next door to my great-grandmother’s house. Everything around me is green and glowing. The sunshine comes down through the trees. The air is golden.

I grew up on a farm. Only an acre but we had a huge vegetable garden, chickens, rabbits, and later other animals that we kept on rented fields. All around us were other small farmers. These were not cute ‘hobby farms.’ Our Dutch, Scottish and English emigrant neighbours milked their own cows, and raised their own pork and beef.

Women on our road home-canned vegetables and fruit, and raised chickens and rabbits for egg-money. We weeded a lot of beans and peas growing up, row after row. I left my hometown at 18, and I thought ” I’m done with that!”

But when the next spring came around, someone had some extra tomato seedlings so I dug up some earth and put them in beside my front door. I couldn’t help gardening. It just happened.

Several years later I was even trying to grow herbs in pots in the window of a tiny Montreal bachelor apartment while going to grad school. That was a big fail. No direct sunlight and the pots were too way small.

Where I live now I share gardening duties and space with my landlady, and luckily we have compatible tastes. The yard is shady from the neighbours’ trees, and we have spring bulbs, shrubs and three-season perennials. Over the winter a thick layer of leaves protects the soil. I still try to grow tomatoes and herbs in pots set in the sun, and fight off the squirrels.

It has been eight years since my TBI and accident. Now bending over, looking down, raking, and side-to-side movement give me vertigo. Gardening has become a big challenge. It is a strong urge, and an equal problem.

I could not rake at all for the first three years without getting sick. My landlady must have done it. For the last five years I have had help from good friends and my brother for both the raking and planting of summer bulbs, as well as my landlady. I sit on a folding garden stool– sit and bag leaves, or sit and plant bulbs– this is a safe posture if I am careful.

But this year my landlady cannot rake. We have one sunny ‘early’ spot in the back yard which I raked off in mid-March. Now I am stuck.

I know that the tulips, daffodils, and other early bulbs won’t be harmed by their layer of leaves staying on a little longer. But every sunny dry day, I get more sad, angry, and frustrated because the job is too big for me alone.

The maple leaves on the front yard are almost six inches deep in places. I have been scraping off little patches where I can; the yard is over-whelming.

I feel ashamed to ask old friends for help, especially if I have not managed to see them over the winter because of my vertigo or migraines. The kids on my street are quite young; old enough to shovel my walk, but too short to rake all these leaves for money.

I have been angry with myself for the last two weeks– first for being too weak to do it all myself, and secondly for caring so much about it, anyway. It’s just a garden, right? Flowers, plants, so what?

No. It matters to me more than I can explain. My urge to garden is a hunger, a desire, and a need. If I have to sit and rake and bag leaves, an hour at a time, for ten days– I will do it. My brother can help on some sections but he works full-time. I will apologize to my old friend for my bad winter, and I hope she understands and offers to come over. I have to get over being angry with myself.

When we are talking about disabilities we usually focus on ability to work, communicate, personal care, mobility, etc. Hobbies and vocations don’t exist in this analysis. However it is these other parts of life that give us joy and a reason for living: family, friends, music, hobbies, travel, reading, socializing and plants, pets and flowers.

I can’t imagine the last eight years without being able to watch my garden grow, and watching the birds and butterflies that come by. I need to see what I can do myself, and try to get used to needing other people’s’ help.

I’m sure there will be hiccups along the way.

Thanks, and wishing you a very happy spring,

Patty

Coming up: Motor-Skills problems, problems with my local library, and Genealogy is like Crack!

Post-TBI: Trying something ridiculous, like video editing and other wild and crazy ideas

Above the video installation at the Molson Bar at the Calgary International Airport

Before my accident I thought that I would have a very active retirement. I planned to cross-country ski, run, travel, write more books and volunteer in an adult literacy program. I hoped to get back into acting, and back into horseback riding. I thought that I would adopt a dog, and be just as busy in retirement as I had been while working.

But after my accident while I was trying to work, and going to all my specialists, and working towards a legal settlement for my accident, I didn’t have any extra energy or brain power to try new things. Most of the time I didn’t have enough energy or brain power to cook, or to read, or to sweep the floor.

I officially retired in July of 2018. I didn’t think that there could be much difference between being off on Long-Term-Disability and being retired. What could be different after eight years? Both are just not working, right?

Wrong. I no longer worry about filling out medical forms for the LTD insurer every three months, or what to say to my supervisor when he asks me when I’ll be back at work.

So I have a little bit more brain energy. I can concentrate for about two hours, if I have not over-exerted myself earlier that day– or the night before.

Animations, computer screens, tiny print, and multi-pane computer software can give me vertigo without warning. So what course do I decide to sign up for? what do I decide to try?

Computer Video Editing!!

Ok, I signed up knowing that I might not be able to do everything, that I would have to bring my Tool Kit to class, and that it was a wild and crazy thing given my limitations. But I had to try it. It was four two-hour classes, in my neighbourhood.

We each had our own video-editing station, and we were using IMovieFinalCut. We were not using our own footage, but trying to make successive 30, 60, 90 second videos of our local street festival, with the provided interviews, music clips and street scenes. I attend this festival every year I can, so I was already excited.

That first class grew more challenging as time went on. I had to put tape on my glasses right away. I had to take a short break after 45 minutes just to stand up and walk around the room. But I was able to keep up with the rest of the class, and it was so much fun!

I felt great being in control, creating something new, and it was fun to make mistakes and then correct them. We watched each other’s clips at the end of the class and laughed at our different points of view with the same footage.

The second week was even better. I put tape on my glasses, but I was much more resilient dealing with the software and focusing on the project. I call myself a poet, but it felt exciting to be creative in a different visual way.

And these classes made me so hungry! My brain had been working and using calories. I needed to eat again as soon as I got home. My appetite is rarely roused; it felt so good to need to eat!

I wasn’t able to finish the whole four weeks. I had vertigo and fatigue that kept me at home. But the studio is running more classes next month and I hope I can attend. And/or I will need to pay for some private one-on-one time to complete my project. It will be worth every penny.

I am still not dependable enough to be in an acting scene-study class–if I am away it hurts the whole group. I have not yet found someone to regularly transcribe poetry manuscripts so that I can edit and rework my own poems. I am able to do some physical activity, but again I am not dependable, predictable, so it is discouraging.

This is my wild and crazy creative experiment: to learn something new. It has been exciting, frustrating, eye-opening, silly, and hunger-raising. Before I was retired, I had no energy at all to think of trying anything new.

Well, I am putting my oar in now! And it probably won’t be the only wild and crazy thing that I try!

Thanks,

Patty

Link: BackLane Studios: backlanestudios.ca

Coming up: Motor Skills problems, Frustration at my local library, and Spring!

Eight years after: Thank you, Keith Primeau!

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.

Thanks,

Patty A

** 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.

Vertigo: back to my Rehab exercises

The last ten days have been great! And not so great.

On February 28 I submitted a 1200 word Non-Fiction piece to the CBC Literary Competition. I had been writing and editing it over two months with the help of friends. This was the first writing submission I had been able to complete since my accident in October 2010. And it was based on my blog posting February 24, 2019 called Draft Post: Warning- Course Language and Anti-social ideas.

I fell twice on ice in my neighbourhood on February 27, and late on the 28th. I bruised my left shoulder badly but did not hit my head.

On the Saturday I was getting vertigo ‘head rushes’ whenever I was walking in the house. On Sunday evening I had a vertigo attack in the evening. I just thought I was tired, and went to bed early.

Monday and Tuesday mornings I had vertigo early in the morning and through to the afternoon. Looking down, reading, an open cupboard door, a spoon dropping into the sink with a clatter– my life was full of booby traps that made me feel sick.

I had to cancel an afternoon museum visit with an out of town friend. I had to reschedule a medical appointment. The smell or sight of food turned my stomach. I was starting to feel anxious, like a failure. Had I pushed myself too hard to write the Non-Fiction prose submission?

But my tinnitus had been very loud over this last week. The left side of my face felt three times as big as my right side. My balance was also very poor, even though I had been resting, and sleeping 10-12 hours per night.

The head rushes, getting vertigo from blowing my nose and bending over? These are not fatigue symptoms. In the past this has signalled changes in my hearing and within my inner ear.

So for the last three days I am back on my vestibular/visual rehab schedule. Staring at the A, moving my head, back and forth. Walking around the house holding the A on its grid pattern. Physical balance exercises, planking, the whole list. The rehab doesn’t stop the vertigo spells, but it can stall any permanent damage.

I had been lazy and distracted since my Christmas travels and had not done my exercises since. But I need to do them now, even if they just keep my vertigo from getting any worse.

I’m thinking of going back to my ENT to get checked out. I think that the success of submitting a manuscript and the days of vertigo afterwards are an unfortunate co-incidence.

So, back to my A and my little squares, and to being mindful of the very start of vertigo–the ripples of vision, the weird sound in one ear, and head rushes. Hopefully this patch will be a short one, but I am embracing my rehab again.

Thanks, and Happy International Women’s Day. Without the great female medical people I’ve consulted over the last 8+ years, I wouldn’t be here today!

Thank you,

Patty

Coming up: Thank you Keith Primeau, Wild and Crazy Ideas, and Weird problems with Motor Skills

Friendship after a TBI

Just this past January I got a new address book. I put all my phone numbers and email addresses in there as well as postal addresses. Some people store all this in their smart phone or computer, but I am still a print person. In fact my TBI has made me more of a print person for details like this. I can recognize and process handwriting much easier than from computer screens.

My accident was eight and a half years ago. I have been off work for three years now. Before that I was part-time or working from home for five years. My old address book is at least 12 years old, from before my accident.

I flipped through all the bent and scratched-out pages and realized that there were so many people I hadn’t talked to for a long time. Elderly relatives that had passed away, sure. Writing friends I hadn’t seen because I could no longer go out to literary events, yeah. Running friends that I didn’t tell about my accident, or I could no longer run.

My book club. Oh, that hurt in my gut. After my accident, I couldn’t read the books we were talking about, and when I went to the dinner meetings I couldn’t follow the conversations. I missed my friends but I felt weak and ashamed, so I stopped attending.

So many friends from work. Men I had dated, women who I had mentored, so many people that I had openly shared my life with in addition to work. People that I used to go to concerts with, to plays, on vacations.

Once I started working part-time it was harder to schedule coffee dates with the friends from work. And once I was working from home most days… well, at the end I had three people I felt comfortable calling and chatting with in my isolated state. One of them has since died, and I miss her.

I feel so lucky with the friends that have stuck with me. There is no system to it: some friends are very loyal; they know that I am weak; and they reached out to me when I was unable to reach out to them.

I had a long period of depression after my accident where I could hardly speak on the phone, or go out for coffee, a drink, a movie. My anxiety about falling, about having a vertigo attack, or confusion in public kept me close to home. I am out of that dark place now, thankfully. And I am thankful for the friends that helped me get out, just by being there.

A postcard, a sick joke on FaceBook, coming over to help rake the winter leaves off my garden, driving me to appointments, singing happy birthday to me on the phone, and helping me fill out the mountains of tax forms, Disability forms, and CPP forms that I could not do by myself.

Going for a walk in the park on a good day. Sharing their dog. Helping with garbage cans, and buying me toilet paper when I couldn’t walk.

Some are neighbours. Some are old friends, some new. A few are medical people who have become friends. My dear boyfriend. But they are all good friends. They help me feel whole again.

I have a few old friends that are ‘honorary Archer’s because they’ve known me and my family for so long. Two of them came out to Toronto for a week to celebrate our collective 60th birthdays. Such a wacky happy week. Tears, giggles, stories old and new. Not much sleep but lots of good food and drink.

Visiting with them was like a good long hug. All three of us have health problems now. We listened, we had ideas, and it was good. They live far away from me and I miss them. But we stay connected on line as much as we can, and I can remember the hugs.

I have always tried to be a loyal friend, but my post-TBI experience has made me value friends of all kinds even more. I hope that I too can help my friends in the future. Maybe I can’t rake their leaves, but I can do a lot of other things.

Thank you,

Patty

Coming up: Wild and Crazy Ideas, Problems with motor skills, and Thank You, Keith Primeau!!