Why you need Concussion Friends after a TBI

A bank of echinacea supporting each other, as well as a butterfly.


I was pole walking back home from Roncesvalles Avenue the other day when a woman stopped me. She wanted to know about my Nordic Walking Poles– why did I use them? Did they help my balance? Where did I get them? Did they really help?

Her husband had been in an accident and suffered a TBI. One of his rehab therapists had recently suggested using poles for therapy but his wife, S, wasn’t sure how it would differ from the cane he had started using. He was an athletic man before his accident but had suffered very serious injuries. He was frustrated with his current limitations. His family was worried about all the unknowns in the rehab process.

Someone had told S that a survivor often ‘plateaus’ in recovery about a year after the TBI. My rehab story disproves this; once I got into rehab I have been recovering (not always in a straight line) for the last eight and a half years! And I told her about that! I am still having small improvements although my life is not like it was before.

I have lived in my neighbourhood since 2005. This couple has lived here much longer. I had never met them before, but we were able to share the names of specialists, therapies that had worked for me, and other local resources in Toronto.

Concussion Buddies are essential for survivors and families–you need friends that understand a TBI. They could be friends that have also had a concussion. They could be a relative or partner that has read about or helped with your post-Concussion issues, that you can speak freely with. They could be a medical professional that you confide in, or members of a therapy group that help you through the challenges that they have survived.

I have a couple of Concussion Buddies in the neighbourhood already. It is always good to have coffee with them, to run into them on the street (not literally) and chat about life. We talk about our balance, our fatigue, and how to improve our reading and sleeping.

I consider my ski-friend R a Concussion Buddy because he lent me his Nordic poles when I was too sceptical to try them. He had suffered a concussion while roller blading a few years before that and he knew this was worth a try.

My friend D helped me sort through 5 years of work and medical paperwork and forms that I was completely unable to deal with. She would read the document to me and I would tell her whether it should be trashed or filed: she would sort it into the right pile.

My neighbours who put out my garbage bins when I cannot do it are my Concussion Buddies.

My Concussion Buddies are those friends that don’t give up on me if I’ve had to cancel a coffee or dinner date twice in a row because of vertigo, migraines or other symptoms.

My boyfriend and my brothers and sisters have become my Concussion Buddies. I have shared all the information that I have learned with them, and they understand my limitations and my strengths. I can call them at any time if I need help.

I started this blog because I wanted to explore my post-TBI experiences in a creative platform. Along the way I have heard from other post-TBI survivors, and learned from them. I have always said that I hoped I could help at least one person by sharing my experience, it would be worthwhile. These people are my Concussion Buddies too!

In person, online or on the phone, it is just good to talk, to share, to nod and understand the frustration and uncertainty of a TBI. We can share the gains, but also the blue times, and make those easier.

I hope I am able to help S and her husband and that we become Concussion Buddies. And I look forward to a time when the resources out there meet the needs of all thepeople and their families dealing with Traumatic Brain Injuries, from any cause.

Thanks, and have a good weekend,

Patty

Coming up: Soup=Vertigo, Surviving and enjoying street festivals, and Update: Contractor Noise

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Contractor noise is making me crazy: noise sensitivity after a TBI

Two doors down from my house, today.


They bought the house last summer. The previous owner had been there for 30 or 40 years. She was proud of her garden, proud of her decorating. She was an artist, but she was aging and there was an opening at a condo site where she had hoped to move. Her house sold in less than a week.

They told her that they would keep the house as it was. So they did, for 12 months. But yesterday a big truck delivered a metal dumpster into their driveway. A second one was delivered today and is already full: plaster and lathe, original 1920s tongue and groove, mouldings, some cupboards.

It looks like they are gutting the place. The sitting room will now run into a dining area which will run into a shiny modern kitchen. They are expanding the back deck farther into the back yard. They will likely lower the basement and redo the foundation. Maybe that will become a rental suite.

The upstairs had three bedrooms and a sunny deck. The deck is ripped off today but I think they are going to open up the whole back into a ‘master suite’.

This house is 30 feet from ours, 30 feet from my bedroom. There is a house in between but that doesn’t muffle the noise of a compressor, electric saws, or the sound of huge piles of boards being thrown into a metal bin.

Today the contractors started just after 8 am and started packing up at 3:30 pm. I got out of bed finally about 2:45 pm, wearing earplugs inside the house and feeling completely disoriented. This is only Day Two.

My TBI and hearing loss have made made me very sensitive to certain sounds, even sounds that I can’t officially hear (I.e. high frequency) can rattle my brain. I get nauseous, vertigo, and feel anxious and threatened by the noise. For the last two days that has meant that I’ve put an earplug in my good ear about 8 am, and tried to dig myself a ‘safe’ hole deep in my bed under the blankets. I can’t hear an alarm clock or the phone.

I know this isn’t completely logical. Why should this noise threaten me? But in my half-sleep this type of noise is scary. Maybe it sounds like the crash when I had my accident, falling into the construction hole and banging my head on the concrete. Any loud whining sound, or machinery sounds is a potential problem.

I lose my balance in mid-step. I can’t focus to read. I’m not hungry and the thought of food makes me feel ill.

These neighbours have the right to renovate their house. I think they are respecting the city bylaws for noise and refuse. They told us neighbours when contractors would start and have city permits up on the windows.

However, I don’t know what I can do to keep my life going as it should. If I use both earplugs I cannot get up. If I don’t use earplugs I lose my last two hours of REM sleep.

I guess I could try going to bed at 8pm. My adult brain is resisting that, partly because then if I wake in the middle of the night, it will be 3am, the middle of the night which could last for hours.

I could get big industrial noise-cancelling ear-phones so I can have my tea on my porch. I could talk to the contractors and see what their schedule looks like: noisy days vs less noisy. I can tell them about my problem, but they don’t have to care.

I love my neighbourhood. It has old trees, 100-year old houses, the library and shops close by. Summer is always contractor season, because 100-year old houses need care. I hear contractors every weekday fixing porches and roofs and basements. I deal with that.

But this noise from gutting the house is way above that. I am not sure what I can do to bear it, over the next six, twelve, maybe eighteen months.

Any suggestions would be welcome.

Thanks, Patty

Coming up: Surviving and Enjoying Festivals; Post-Concussion Friends; and

Soup =Vertigo.

My Brain at the Lake


This week I was lucky enough to be invited to a cottage north of Ottawa with old friends. My boyfriend and I went up for two nights, over three days.

I don’t have much Ontario cottage experience. People lived on lakes where I grew up on Vancouver Island, but those were year-round houses. As a grad student and writer in Montreal and Toronto, most of my friends did not have cottages. In fact we sometimes made fun of the ‘bourgeois cottage’ experience– it’s really a House, with all the rituals and folklore that you could find in Edwardian novels regarding Country House visits. Not in the Wilderness at all, etcetera.

Well, that was almost 30 years ago, and these old friends of mine were renting a simple house on a lake. We would bring food, play board games, maybe swim. I said yes almost immediately and had a sudden desire to be out of the city.

But I was worried. What about my sore back that was almost better? What if I had a vertigo attack? Would I be able to walk down and up the winding trail to the dock? Could I swim? What if I couldn’t sleep?

My good friend E was encouraging and understanding. She sent descriptive emails, photos, joking ideas and more. I thought, ok, this can happen, so my boyfriend and I started to get organized.

He made a huge pot of chili. I bought some hostess gifts. We both collected a huge amount of things to read. We bought corn and beer and headed up north.

I think we were there for only 15 minutes before we headed down the zig-zagging trail to the lake. It was beautiful. There were birds, interesting trees, and the relaxing waves. I could smell the water, the earth and trees, and I wanted to stay there forever.

I did sort-of swim on a floater pad, which was a thrill. E and I drove to an organic farm nearby and I fell in love with a donkey. Some of us played cut-throat Trivial Pursuit late at night and my team won! We all puttered around, read, did dishes, and napped. My friends’ university-age kids and their friends were there so we had many interesting and silly conversations. The dog Arlo jumped in the lake anytime we threw a stick to great acclaim.

I slept with the window open and fell asleep to the smell of trees. Last night I woke to a thunderstorm, and I could see right across the lake with the rain pounding on the metal roof. I fell back asleep easily. I was sleeping in the tree-tops.

I told E that I felt that if I stayed there a week that I would miraculously be healed.

From vertigo? Responsibility? Migraines? Poor balance and anxiety? No, maybe not. And maybe only for that time that I was spending there– a respite from ordinary things and from worry.

I didn’t unpack a single library book from my suitcase. Any wobbles I had were understood by my friends there and I recovered. We watched the clouds and the light and the changing greens of the Gatineau Hills.

Tonight I am back in Ottawa for another five days before going home. I feel like my trip up to the ‘cottage’ has jolted me out of a rut. I loved this short visit, with good friends to a lovely peaceful place. It was more powerful than I thought it could be.

I feel happy. Yes.

Thank you and I hope everyone has a good Labour Day,

Patty

Bad balance means Back Injury— Update

Three weeks today that I wrenched my back. Today I can gently reach down and touch my toes again.

I still get pain if I carry anything more than about 5 pounds with my right hand. My balance is not very strong as I am moving around in the house so I try to remember to move slowly. I have to use my poles when walking outside.

I have a small spot still painful where my right hip and spine meet. It feels so tiny compared to the pain over the last three weeks. I am trying to pay attention to it so that it will continue to shrink. I have started to do the rehab exercises my vestibular therapist gave me to strengthen my core. Leg lifts, pelvic tilts, balancing in different positions.

I have not done any gardening for three weeks. I am going away for the long weekend and I’ve decided that I won’t garden here until I get back. It’s hard because I see so many things I want to do, but I want the injury to heal.

Take care of yourselves,

Thanks,

Patty

Coming up: Concussion Friends, Green things and New projects.

Bad balance means Back Injury: I’m going to have to re-think gardening post-TBI

Essential equipment right now at my house.


I have not posted in a month. I kept thinking that this pain will go away, that I would wake up refreshed and energetic. It is hard to think of writing a blog or anything else with pain. I’ve been to the doctor, the massage therapist, and I have pills but sometimes it hurts anyway. This is the injury that my vestibular therapist always warned me about.

Self-inflicted gardening injury.

I was pruning a very energetic tree in our back yard, a pagoda dogwood. It really needs to be pruned 2x a year, or it will grow huge. We hadn’t trimmed it in the spring so some of the trimmings were a metre in length.

It grows in a bed with an ornamental metal fence border in front to keep out my landlady’s dog. I started with the front and I thought that I would just trim half of it today, the rest tomorrow or following days.

The lower branches were thin and easy. I had to step over the fence to get under the tree, then back over again to put the trimmings in a bag. The fence is 16 inches or so. I was still wearing the cloth sandals without ankle straps that I had walked in earlier.

For a moment I thought about changing my shoes to my gardening boots. But it was hot, I wasn’t going to garden very long, I felt fine, etc.

Step over, prune. Step back over with the branch to the bag. Step over and prune. Step back over the fence with branches for the bag. Repeat. Repeat. Repeat. Simple.

It was a lovely afternoon and I was feeling happy. I did stop at the 2/3 point for awhile and thought of leaving the rest for another day. I had a bag full of branches and the sun was going down. I took a long drink of water.

I wasn’t feeling any pain, so I thought I would just finish it off. The ground underneath the tree was very uneven but I didn’t notice. I was working my way up to the top with my hand clippers, only changing to the long pruners for that last core of growth.

I cut those last crazy few stalks, and stepped over the little fence. I was sweaty, buggy and I had a few scratches but that’s normal for pruning. I dragged the bag to the front, cleaned off and got ready to sit on my front porch and relax.

About an hour later I had an idea about photographing some flowers on our front bank. I went down with my iPad, sitting on the steps, then leant over to catch more blossoms.

My back imploded. I couldn’t breathe. I had to crawl back up the stairs to my house, very slowly, a tiny movement with each breath.

I’ve had lots of different pain in my life but this was gutting. I scrambled around and found some muscle relaxers and went to bed. I still had pain and slept poorly; every position hurt. Constant spasms.

That was two weeks ago, an eternity. I still cannot bend over, sit down or walk without pain. At least now I am not getting spasms. Just a thick dull ache across my right hip with every movement, however small.

My TBI accident was more than eight years ago. In the meantime I have rehabbed into certain types of gardening. But I hadn’t worked enough on my balance, my glutes, and my lower fascia connective tissue. I had gone to the gym for six months, then left. I had done planking and other exercises at home for a year and then stopped.

All my athleticism before my accident means nothing. I am not 35 years old, a marathon runner, or cross-country ski instructor any more. The muscles in my back cannot be ignored. My poor balance and weakened back muscles meant that an ordinary thing was very bad.

I’ve been trying to find to humor in this situation, which is typical for me when I am stressed– I try to make other people laugh and defuse the problem. So “The tree that bit me”, or “It only hurts when I sneeze”.

I had no idea that pruning would be a big problem. I had some soreness in my back for a day or two when I had pruned our honeysuckle two weeks earlier. I guess I thought that this would be the same. Doctors say that pain tells you to stop, but I had no pain at that time so I didn’t stop. The pain came on suddenly an hour or so later. Too late to tell me to stop.

Since I hurt myself, each day is a little better than the day before. I can pick up things weighing a kilo or less with my right hand. I have found some positions I can sleep in. I can make my bed, do my dishes, and have a shower. Walking is still stiff and painful but I am doing some slow careful pole-walking every day.

I never thought that my Brain Injury would give me such pain in my back. Right now I am just hoping to feel well enough to visit Ottawa at the end of the month. I am having to be very practical and to ask for help when I need it. Garbage day, in the grocery store, or when I drop one of my Nordic poles while walking.

It’s hard to be patient with one’s self, without feeling a bit helpless. I’m working on it. I have to.

Thanks,

Patty

Coming up: Post-Concussion friends, Green things, and Poetry.

Sore feet mean new shoes: Good shoes after a TBI and vertigo’

I just bought these well padded old-style sneakers because most of my summer shoes are disintegrating.


I had my Traumatic Brain Injury here in October 2010. Since moving to Toronto in the late 1980’s I had become a regular urban walker: walking to shop at Kensington Market, walking part-way to work in good weather, or walking in the parks to relax.

Even when I took up running in 5K and longer races, walking was my preferred mode of transportation (with TTC help on longer distances).

But I had gone to grad school in Montreal, and in Montreal I fell in love with shoes!! I bought inexpensive knock-offs then manufactured locally. Colours, heels, straps, fabrics and attitude were all for sale on Rue Ste-Catherine. I packed two bankers boxes full of shoes when I moved to Toronto, and I had been living in just a Bachelor apartment. I don’t have any of those shoes, anymore.

Within three months of my accident people were making remarks about my walking at work. They said I was leaning to the right, that I was holding my palm out towards the wall, and that I walked like a drunk at the end of the day. I was tired. My muscles just didn’t seem to be acting like they should. And no, I wasn’t drunk.

When I finally got into vestibular rehab 18 months after my accident, a lot of this was explained. My TBI had damaged my left ear. My hearing was damaged, as well as my balance. My brain and body was trying to compensate but I was wobbling all over the place. My balance was terrible. I kept hanging on to the wall. If I had walked a lot in a day my feet, legs, and back were very sore in the night and the next day.

My therapist said I had to stop wearing heels; even those two-inch work heels. I needed ankle support, because my ankles were waggling all over the place. And I needed firm cushioned soles to send good strong messages to my brain while I was walking.

She encouraged me to do a lot of walking for exercise, but to wear hikers to reduce the movement in my ankles, knees and hips as I walked. I was a recreational athlete before my accident, as well as being very flexible. This was part of the problem!

I watched myself in the mirror at rehab and it was just as she described. I looked like a spaghetti noodle when I was walking– feet going in different directions and my hips and shoulders wavering around trying to stay balanced. Over-compensating this way and that, always off centre to one side or the other.

Years of running and biking exercise meant that I could handle this wobbling right now. But she warned me of likely chronic joint and strength failures down the road if my vertigo and poor balance continued. I could not run or bike any more.

So we worked on my walking, my balance, my shoes. She had me balancing on a lathe of wood, and back and forth. Bare foot and in shoes. I realized that my feet hurt when I wore those work heels anyway, so I gave them away.

We usually lose fat (padding!) and muscle mass from our feet as we get older and sore feet become common. I was lucky that I had no other issues with my feet and legs after so many years of running and walking with so-so shoes.

I still get sore feet now, even using good walking shoes and Nordic Walking Poles to improve my balance. Sometimes I was carrying heavy things in my back pack, or I was tired or it was a very hot day. I will wake in the middle of the night with aching feet. Even good hiking shoes eventually need to be replaced.

But I did buy these new court shoes above. They are sturdy, wide enough to take an extra insole if I need it, and they say LOVE inside. That was just an extra. My feet feel a lot better this last week as I rotate through my summer shoes. And I hope they help reinforce my balance as I am out walking.

I haven’t given away all of my old shoes. I can’t. These ones below were bought in London’s Camden Market second-hand in 1989. They are real red patent leather. I wore them to the theatre, for my graduation, and many parties. I love them even if they don’t fit any more.

My Camden Market shoes


I think I need to find a shoemaker who will make me red hikers, red court shoes, and red sandals. After all, if your shoes have to be practical they can still be red!

Thank you,

I hope you are having a good summer,

Patty

Coming up: Concussion Friends, Green Things, and Poetry

An unexpected new activity after my TBI: Birds

10 AM– that cardinal has come up into my porch again, and suddenly he realizes that I’m alive, moving, and breathing. He hides in the spruce tree then eats from the fence post. When I come home from shopping at 4:30 PM the sparrows hang on the wires, calling. “No food, More food” they say. They are training me very well.

This post TBI hobby is very satisfying to me– more so because it is such a surprise. I never expected to be a bird watcher.

I remember bird songs in the evening from when I was a young child: likely from robins and sparrows roosting in the trees surrounding the fields. We lived in a rural area with small farms and conifer woodlots. We saw everything from Great Blue Herons to Bald Eagles to hummingbirds in my home town.

But I loved horses. I didn’t pay much attention to birds, except when it was my chore to feed our chickens or ducks. The wild birds were beautiful but they were like wallpaper, just ordinary things growing up.

When I went to university in Victoria I lived in an old treed suburb full of heritage homes. We planted a garden but I don’t remember the birds at all.

I lived in a old grey-stone bachelor while at grad school in Montreal that came right up to the sidewalk. The only birds I remember were the crowds of pigeons in a nearby park. Old people came and fed them bread, so that many pigeons survived the cold and snowy winters.

I didn’t notice birds here in Ontario until I started cross-country skiing in the 1990s. Our Toronto club took Sunday bus trips to ski resorts in the Barrie region. I started to notice how active wildlife can be in Ontario winters. I saw deer, ermine, chipmunks, squirrels, hawks, coyotes, deer and a bunch of new birds. A red-headed woodpecker which I had never seen before. Other woodpeckers, cardinals and lots of loud Blue Jays.

Cross-country ski trails are pretty quiet places so I would just stop when I heard a woodpecker, or some other bird sound. I was interested in these new creatures but I was still very snotty about ‘birders’.

I imagined a combination of all the stereotypes. Hats, shorts, huge binoculars, backpacks with bird books and journals and pencils, long camera lenses, knobby knees, grey hair, hiking boots with thick socks, argumentative, bossy. No-one that you’d like to have coffee with, let along have a drink!

So there! Beware of the stereotypes you hold, because you may become them.

I had my Traumatic Brain Injury in the fall of 2010 in my Toronto neighbourhood. Suddenly I could not be physically active without aggravating vertigo, or migraine, or fatigue. Reading or looking at computer screens also caused post-concussion symptoms like nausea, confusion, and poor balance.

I was stuck. I was in serious rehab for three years. I don’t remember any hobbies or much socializing during this time. Rehab and my stubborn attempt to get back to full-time work consumed all of my energy.

On the weekends I would sit out in the back yard or on my front porch and drink my tea, watch the world, and try to wake up. My neighbours had bird feeders, and so I started watching the birds that passed through the back yards: the bossy brassy cardinals, the flashing red wing blackbirds. They were colorful and diverting.

The 1960s era apartment building behind my house still had an old TV antenna on the roof. I could see hawks perching up there from my kitchen table. My boyfriend bought me a pair of binoculars for my birthday about three years ago. Suddenly I could identify these hawks– the species but also the different birds!

I noticed how the robins and sparrows gathered in our back yard if I had been gardening and watering. They came to eat the worms, bugs and seeds that had been stirred up.

I noticed the different birds that came to the feeders near my boyfriend’s house in Ottawa. I started to appreciate recognizing a call, even if I could not see the bird. We went on a holiday to visit family and friends on Vancouver Island. My sister had a variety of bird feeders and I bought a guide. I could recognize at least 20 types of birds, just sitting and relaxing over the course of the day. I was hooked!

My neighbours with the bird feeders moved last summer. Less birds came through our backyard, although I put out a dish of water everyday, which they did drink from and bathe in. Over the fall and winter I could still see my hawks. Some were migrating and some stayed through the winter, perched in the cold wind, looking south over the park to the lake.

I looked at buying a bird feeder. I discussed it with my landlady. I pondered where would be the best spot, how to keep the squirrels away, and how much it might cost.

Then I thought I would do a trial run. What if the birds were no longer nesting around here? Would they come if I just put out some seed?

We have three solid 4×4 fence posts for our stairs above the street in the front yard. I bought a bird seed that my friend told me that squirrels didn’t much like. I put little piles of bird seed on the top of the posts– first when I got up and was on the porch with my tea in the morning, then around 5:30 pm when I was relaxing and reading.

Within two days the sparrows, finches and cardinals came into our trees when I came out to the porch. They were training me! Over the last couple of months they have gone from one cup of food per day, to two cups.

Now I get blue jays at noon and 5 pm. The cardinals and various sparrows and finches are bringing their fledglings. The fledglings keep wiggling and peeping to be fed, and the parents keep trying to make them eat seed. It is very entertaining.

So I will be buying a bird feeder, and installing it in our front yard where I can see it from the front porch. It will be squirrel resistant and I’ll try to station it where they cannot easily leap. I may have different feeds for different seasons. I hope to write lots of notes in my Bird Book.

I’m not going to be a traditional ‘birder’ with the outdoor gear and early visits to the woods. Some of my post-concussion symptoms make that very difficult. But I can do it on my terms, and when I’m out and about here in Toronto, or other places I can still pay attention to birds,

Birds help me feel connected to real nature, not just the cultivated nature that I have in my garden. I hope that they are not dependent because I don’t feed them very much. But I love watching the hierarchy, the sudden battles and the peace-making.

Even on days when my vertigo is fierce, I can put tape on my glasses and feed the birds. I may not be able to watch them closely but I know that they are there. I am connected with something, somebird, and that helps me feel a bit normal again.

Thanks,

Patty

Coming up: Green Things, Post Concussion Friends and Poetry.