What? I can’t hear you, what? Hearing problems and my TBI

I think it started with the telephone at work. I kept misunderstanding people and asking them to repeat themselves. It was only a few months after my accident, and I just thought it was part of my general post-concussion ‘fuzziness’ that would ease off.

Then my upstairs neighbour complained that my TV was way too loud. She said she was unable to sit and read above my living room because of the noise. I was surprised and turned it down.

I couldn’t make out the lyrics at my brother’s spring choir concert. Were they all mumbling?

But the worst thing, the most embarrassing to me, was that I had started to interrupt other people in team meetings. The soft-spoken woman at the other end of the table had started to speak and I hadn’t heard her. I realized I could barely hear her at all.

I had struck the sidewalk with my skull about an inch above my left ear in my October 2010 accident. I did not have a fracture but I had a thick swelling there for several months and a constant headache. By the spring of 2011 I had developed a hissing tinnitus in my left ear on top of these other signs of hearing loss. My family doctor referred me to an Ear Nose and Throat specialist.

I had hearing tests and balance tests and a CT scan of my inner ear to see if there were any visible fractures. My ENT concluded that my hearing loss was consistent with damage from the TBI even though the CT was normal. He said that my hearing could be variable and could get worse because of damage to the microscopic hairs in my inner ear canals. That kind of damage does not show on a CT. He also said that a Head Injury Specialist might know if there was damage to the various parts of my brain related to hearing, and to language processing.

I had my hearing tested every three months for at least three years. I was growing more deaf with each test, and having greater difficulty hearing the difference between certain consonants: F and S, T and P, B and D for example. I stopped listening to the radio; I listened to shows only occasionally. Any music with high notes or high pitches was uncomfortable to listen to. I could not follow the loud and overlapping discussion at my book club. When I visited my family at Christmas I tried to sit with my good ear closest to the softest speaker.

My head and neck had been twisting sideways as well as forward when I sustained my TBI. The Head Injury Clinic pointed to the areas in my brain which could have been damaged by this particular spinning. The specialist said that my brain will try to heal, but that my prognosis was guarded because of all my prior concussions.

I cried. I cried after every hearing test. I cried when I saw the areas in the brain that were likely injured because my comprehension problems continued. I cried when I played music that I used to love that I couldn’t hear anymore, or that I could no longer hear with any pleasure.

Hearing loss is an invisible disability, and if you ask people to repeat themselves they often think that you are stupid! I found it impossible to work in a modern ‘open office’ environment because of my deafness and accompanying hyper-accusis (sensitivity to certain noises). I could not tell which direction a siren was coming from which added to my driving anxieties. I could not hear someone walking up behind me on my left hand side; I bumped into many people but I also did not feel safe.

Often I wear a lapel button that says “I have an invisible disability”. If a store clerk talks to me and I cannot hear, I say “I am deaf in this ear, can you repeat that?” My boyfriend and my family let me pick my seat first when we visit, so I can hear them all better. I have met a lot of other people with hearing loss and I love to learn their coping strategies. Going deaf has been very isolating, but I am fighting back as much as I can.

Soon I will be getting my hearing aids recalibrated because my hearing loss has finally stabilized. I am still deaf in one ear, or partially-hearing at the best of times. And I’m going to continue wearing my Invisible Disability button on my coat.

Thanks, Patty

Coming up: Concussion Poetry, Travelling, and the Computer

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Five big things I’ve learned about TBI and Blogging in the last month

I am writing this on the keyboard (not handwritten first) and I am reflecting on what I have learned in my first month about TBI and blogging. Maybe you can see a parallel to your activities:

  1. Blogging is just as difficult physically as it is intellectually. I have tons of ideas but a very limited amount of computer-brain time per day and per week. I was getting vertigo from typing on the IPad in my lap. So I bought an external keyboard that also holds up the screen, which seems to give me an extra couple of hours a week to write and edit. An improvement.
  1. I should not try to cook from scratch, do laundry or read books on a blog-scheduled day. Writing this blog is brain-intensive with a lot of small decisions for editing, vocabulary and format, and it takes a lot of spoons. So do these other activities. Otherwise, I wake up at 3am in my clothes in bed, overcome by fatigue while sitting on my couch. It’s hard to get back to sleep after that, among other things.
  1. Always wear the right glasses or I will feel sick while blogging. I have reading glasses as well as distance glasses. If I am doing various things in the house, I could be wearing the wrong glasses while writing on the blog. Unfortunately I often don’t realize the problem until the iPad screen starts to wiggle in front of me like an ocean wave. I am going to see my eye doctor next week and I expect her to prescribe trifocals, which will mean three sets of glasses!
  1. Being a perfectionist is not sustainable in a blog– booboos happen. Trying to find the perfect topic or create the perfectly edited blog will exhaust me. It is better to remember the rhythm I used formerly as a journalist: get today’s story out and then start working on the next story. I hope it will get better and easier over time with more practice and feedback from readers.
  2. Tell a story and keep it concise. Hopefully my stories are not too short to be helpful. But I don’t want to blather on about things that don’t interest anyone else. I also want my blog to sound like my conversational voice, so I read it aloud to myself as part of the editing process.

As my nephew would say, “This is hard work!” And I take satisfaction in trying to work hard at something again, especially after having to retire for medical reasons. It feels creative, even if it doesn’t feel the same as writing poetry. Small steps are still steps into the future.

Thanks, Patty

Coming Up: Hearing Loss, Concussion Poetry and Travelling

Snow gives me vertigo

Today we had very strong winds in the morning, and snow started to fall in the afternoon. My plan for today went haywire, because for some reason my brain was confused (again?) by snow falling. Somehow my brain thought that I was moving, not the snow. You would think after all these years my brain would just remember. Nope.

Vertigo, nausea, fatigue. I ended up having to reschedule a doctor’s appointment because I didn’t think I could handle being on public transit. I feel better now finally at 8 pm, after resting a long while and then having a snack. But I still am too wobbly to edit my planned post for this blog. I’m not sure what I will have for supper now, or when I’ll go to bed.

I am happy we have snow. Tomorrow I may be able to go out to the big park two blocks from my house and hack around on skis or snowshoes. Snow muffles so many of the middle of the night sounds that wake me up. And snow is bright, reflects light and chases away the gloomy Novembers. Finally I will be able to watch snow falling with no reaction.

This reminds me that I have had similar vertigo issues with snow falling in the past. Within a couple of days of being out when snow falls, my brain ‘recalibrates’ or some such thing. Then it is no longer a problem, until later it is after snow has been gone for 6 plus months over the summer.

This doesn’t just happen with snow. If I have not been in a particular big grocery store or pharmacy for a while? My brain gets all wobbly, overwhelmed, and being there can be difficult all over again.

I’m just going to get back at it whenever I wake up tomorrow. My winter gear is waiting in the basement.

Thanks,

Patty

Coming up: Hearing Loss, Concussion Poetry and Travelling

My car

I often dream about driving my car, a year after it is gone and two or three years since I last drove it any distance.

I dream of driving through the mountains on Vancouver Island, or in Mexico by that turquoise sea. I dream that my car can fly– so I fly over the Grand Canyon and into Los Angeles with my mother so we can attend the Academy Awards. I dream of going to the garden centre and buying a pallet of dirt, of a huge grocery run for a big party, and of driving up north in an early winter morning to go cross-country skiing with a friend.

The reality of my car at the end was very different than my dreams.

I haven’t lost my drivers licence, yet. My doctor and I have decided that is not necessary, but I no longer drive because of how anxious my post-concussion symptoms make me feel.

I developed serious anxiety about driving. I felt like my reactions were not as good as before, that something bad would happen and it would be all my fault. After talking to medical specialists I think that this is an expression of Post-Traumatic Stress Disorder from my (non-automotive) accident, and from the severe vertigo attacks that I suffered in the following five years. I became fearful over many ordinary things besides driving at this time. I’d driven for 30+ years with a clean record yet I was in fear.

I loved my little car. I called her Philby and she was a great snow car with good gas mileage. A sweet car.

But every time I drove I was scared something would happen. My trips got shorter and less frequent and then I had trouble keeping the battery charged up. Philby would sit there for a week or two, covered with leaves or dust.

It’s not good for a car to sit on the street. The brakes get rusty, the door locks get sticky, the tires get squared. I was still trying to work part-time and money was very tight. Every month car insurance would come out of my bank account. Twice a year I paid for my parking sticker. There were licence plate fees, and I tried to keep up with basic maintenance.

Even so I didn’t want to sell it. My car was a symbol of being a grown up, an adult with a job and an active life. I kept hoping that my vertigo would magically just go away so I wanted to keep Philby, just in case. I would still brush off all the leaves, wash off the dust, brush away the spider webs.

Finally I sat down with the calculator and thought– I could go to BC every Christmas to see my family for less than this car is costing me.

I donated it to charity partly because I wanted others to benefit; it also made it easier to justify no longer owning a car.

The tow truck driver arrived just before lunch-time. My boyfriend was there to help. And of course, the battery was dead. The driver gave me a jump start and I revved her up hard and told her what a good car she had been and how I missed driving her.

Quickly I U-turned, drove her over the tire racks and turned her off. The tow truck driver cranked up the tracks, threw the caution lights on the trunk, and away they went. My boyfriend hugged me as we both waved good bye.

Some nights I now dream that Philby is out on the curb, and that something is wrong. In the morning after those dreams, I still look out the front door onto the street, just in case.

Exercise: (1)

Maybe things are different these days, but my initial medical opinion in the ER after my concussion in 2010 was to REST, and yes, they spelled it all in capital letters. Dark room, no activity, no TV, for an indefinite time.  Like many people before and since, I felt like I was going crazy with this.

I think that the majority of TBI survivors are active people. Often that is how and why we are injured. Not everyone is as active as I was in 2010, and I was much less active at the time of my accident than I’d been as a teenager, riding horses.

This need to be active and physical has been very challenging after the TBI. Being active makes me feel good, it was how I relieved stress, and some of my activities were a social focus in my life.  I worked in a government office in administration, but since I believe in face to face meetings to deal with conflict I did a lot of walking around. I had become a runner, with two half-marathons under my belt, and was always willing to run a charity 5K or 10K race. Running after work was my release for many months and years even when I was not training.

I did not try to run right after my October 2010 accident because of my strong post-concussive symptoms. I rested. Christmas came and I flew out to see my family, but my walking was off-kilter even inside my sister’s house. At work, people started to tease me about my ‘upcoming hip replacement’ because I was walking so slowly and off balance.

I was trying to fight depression and anxiety by this time, and I felt that inactivity was not going to help me get better.  Luckily I live in a Toronto neighborhood that is good for walking. The shops are close, the blocks are short, and most day to day things could be bought within a 30 minute walk back and forth. Getting out every day to shop a bit and chat with people became an essential thing, and it was even better if I was going to the Library or the bank or to other appointments. There are lots of kids and dogs and old people and it truly feels like a village.

However, all this walking with wonky balance was giving me sore feet, sore shoulders and of course very sore hips. I’m afraid I can be stubborn in unhelpful ways, and my Vestibular therapist from Sunnybrook hospital had been recommending Nordic Walking poles to me for at least a year or more. I resisted because I thought they looked geeky; I resisted because it reminded me of cross-country skiing, which I thought I would have to give up because of the accident. I resisted because I was desperately trying to still work part time and had no extra money.

My cross-country ski friend R uses Nordic poles to stay in shape in the summer and he offered to lend me his poles, ‘just give it a try’, he said. His poles were light and they could be shortened or lengthened as needed for any terrain in hiking. Since R stands at least six inches taller than I am, they would need to be very adjustable!

I decided to just walk around the block. It was mid-day and there was no one around. I only walked half a block, not even half a block– to the corner– and I was laughing out loud! I could walk twice as fast, maybe more, just with the poles swinging at my sides. I used the same lateral motion as in cross-country skiing, just lightly touching the pole tips to the ground with each step. I just kept laughing as I went around my residential block, up the hill and down the other, smoothly walking along. I no longer cared how geeky I might look, and the memory of cross-country skiing was now a positive thing.

According to my Vestibular Therapist, using the poles returns my old muscle memory. Also, each tap on the ground is a message to my brain of where I am, the position of my body, and of moving forward. Because the lateral movements are symmetrical, my stance becomes more balanced and I can walk more effectively. She just nodded wisely when I told her I had tried them, and that all my prior excuses were wrong.

I found the money to buy my own Nordic poles and they are essential. I don’t always use them for short distances or dressy situations, but I know I can if my balance is weaker on that day. I bought expensive poles: I use them every day; I can fold them up and put them in a purse or backpack; and they weigh next to nothing for travelling.

Walking everyday, even for a short distance, helps me in so many ways. Exercise reduces symptoms of depression and anxiety, and I find going out for a walk can also ease some of my visual vertigo symptoms.

I will write more on helpful exercises I have found, and share some of the sillier Nordic Pole experiences farther down the road.

Bye bye for now and thanks,

Patty

Coming up Next: Concussion Poetry, Hearing Loss and My Car

Past concussions: How many concussions have you had? Do you even know?

I do not know how many concussions I have had in my life.  Today I estimate it at somewhere between 10 and 20, mostly in my pre-teen amd teenage years.  I will never be sure and at this point that number doesn’t matter any more.

My big accident occurred in October 2010. When I was still having symptoms in the spring and summer of 2011, my GP gave me referrals to specialists: a neurologist for migraines, an ENT for balance and hearing issues, and a Brain Injury clinic for a more broad assesssment.  All the specialists asked me about my past concussions, the number, severity, etc. I did not know what to tell them.

I was one of those horse-mad girls from the time I was two or three years old. I read all of the horse books in my grade school library by grade three. We lived in a rural area, and I would walk anywhere to muck out stalls, groom, and just hang around horses, hoping I would get a chance to ride.

I got a pony for my 10th birthday and I was in heaven. I would drive wheelbarrows full of manure, brushed and fed my pony every day.  People didn’t even use the word concussion back then, let alone think of TBI— traumatic brain injuries. I think I had my first concussion within a week of getting my pony.

He was a small pinto Shetland pony and a barn rat—always wanted to get back to the barn where the food was. This day I saddled up and rode down the driveway to meet a horsey friend and my pony suddenly wheeled around, and raced back to the barn. My dad had made a barn out of an older shed and the doorway was low. I’m dragging on the reins, trying to stop him, and I get beaned by the top of the doorway. Bang! Down on the ground. I think I led him out farther into the road to meet my friend, and he was ok when he was with another pony.

The next weekend was another concussion. Again I saddled up to go meet my buddy, and again my pony got part way down the driveway, and took off back to the barn. This time I decided to jump off before I hit the door! About six feet out I lept off to my left hand side; hit the wooden stairs of the clothesline stand at maybe, 10 kmph, ??, head first. Smack. I hurt my shoulder and arm that day, so I don’t think we went out riding afterwards.

After this, my mom decided that we needed help with this pony.  He hadn’t been ridden in a few years and had been hanging out with large horses that bullied him. The bit and saddle that came with him were archaic and not appropriate for a barn rat pony.  There was a teenager in our end of the valley, Gordie, that was known for riding and settling problem horses.  With his help I got the right gear, and he would come out and ride my pony for a day when the pony was too full of beans for a child. Gordie would let him run a bit, then remind him of having a rider again, and reward him when he did well.

It is only in hindsight that I know that these were concussions: seeing stars, fatigue and concentration problems and more.  Over the years, with many ponies and horses I  had other concussions. And later as a cross-country skier I had at least one more. Other concussions were not sports-related: fainting and falling to the floor, or banging my head hard on a car door.

I guess my point is that almost everyone has likely suffered a TBI in their life. Some are just more dramatic and memorable than others.  We don’t use terms like ‘getting your bell rung’ anymore, but a lot of those attitudes persist. People think that one has to lose consciousness to call it a concussion. This is not true.

After his initial problems, my pony got love-bombed by my family and became an award winner with my younger sister a few years later.  I am always happy and proud of how he became such a happy pony.

Yet I also look back in concern about the invisible injuries many of us suffered while riding horseback, and how no one knew how serious these injuries could become.

Thanks,

Patty

Up Next: Exercise, Concussion Poetry, and more.

 

 

Tool Kit (1)

I’m not going to talk about drugs here. This is Number 1 because there are different tool kits. For different places, different people, different problems. Here are some things I have used in this last few days. I am recovering from likely doing too much while my friends were in Toronto.

  1. Tape: I wear scotch transparent Magic tape to fuzz out parts of my glasses when I get out of bed for 60 to 90 minutes. This was discovered through my Vestibular Therapy at Sunnybrook hospital. The period of time wear it, the opaqueness, and where on my lenses I wear it were all worked out through therapy. It helps my eyes track together which is a challenge when I begin my day. This also was an attempt to reduce sensory input. It helps reduce dizziness. I put it on the outside edge of my lenses. Other people get relief on the inside edges.
  2. Shower bars in the bathroom. I would just have to touch them down the wall, not grab the things. It is security but I have gripped them hard, suddenly, an it is essential
  3. Ear plugs: I have a box I bought on line which are very soft and for very narrow ear canals. I could hear a bit so I do not feel unsafe, but if my neighbours are running lawn blowers, or contractors are running nail guns, I can survive. I use them often in transit, but even at home. Sometimes I would become unusually sensitive to noise and would need an earplug to go to sleep ie boyfriend snoring. Because I have lost most of the hearing in my left ear due to the accident I guess I am lucky that I only need to use one earplug.
  4. Sunglasses: I have sunglasses that fit over my prescription glasses. They look like a cross between old lady glasses, and celebrity glasses. I wear them any time that life is too bright, too vivid, too much motion. This can apply in the daytime, or even in my my house. Essential when travelling, through subway, airport, etc.
  5. White noise machine : trying to ease the middle of the night silence/noise activity with limited success. My boyfriend loves the sound of frogs.
  1. Water, gravol other drugs. Usually this is too slow, too long after the problem comes. But they do make me feel at least that have a few tools ready against crisis. It seems ironic and stupid that any time I’ve gone into hospital with serious vertigo attacks, they just pump me full,of gravol an send me home in a cab. I always have stomach remedies as well, since vertigo and nausea are often related

Well, very tired right now with all the visitors I’ve had for the last 10 days or so. Hard to think of what day it is, or what number in the month it is after visiting after midnight for days. Good stuff, but I need to take some ‘protective time’ .

I will have other Tool Box instalments soon.

thanks, Patty

Coming up: Past concussions, Exercise and Hearing Loss