Gift shopping with a brain injury

BY: ALYSON ROGERS

All I want for Christmas is a brand new brain – just kidding – but shopping for the holidays with a brain injury can be a struggle.

This time last year, I could only manage going between home and work. Doing anything extra became extremely difficult due my physical brain injury symptoms. I tried to go into the mall, and had to leave almost immediately. This lead to me doing all of my gift shopping online. Now a year later, my health has significantly improved, but I still plan to do my shopping online.

Woman drinking a hot drink on a grey couch wearing red christmas socks with snow flakes and reindeer

I realized that as much as I love shopping, the mall at this time of the year is not my friend. I find the crowds overwhelming and I’m already uncoordinated; trying to walk through a hoard of last minute shoppers is the equivalent of being a professional athlete for someone with a brain injury. The bright lights bother my light-sensitive eyes, and while the Eaton Centre tree is beautiful, I can’t look at it for too long. It’s hard for damaged brains to process so much sensory information, such as what I have described above, and I haven’t even gotten to picking out gifts yet.

Due to the part of my brain that has sustained damage, I struggle with making decisions.  I have a hard time deciding what to buy someone in a quiet room, let alone while trying to process all the sights and sounds going on around me. My holiday trips to the mall often end up with me being very fatigued and coming out with little, no or the wrong gifts. This defeats the entire purpose of going to the mall in the first place.

Giant Reindeer infront of the giant Christmas tree at the Eaton Centre
PHOTO VIA CF EATON CENTRE FACEBOOK 

This year, I don’t plan to enter any mall for gift shopping, I will order everything online.  Having a brain injury is exhausting enough and if I can do something to negate or avoid symptoms, I will. People often ask me if I am worried about my gifts coming late. I am not worried about this, because my loved ones will understand that it’s easier for me to shop online and sometimes gifts arrive late. If they don’t, they’ll be on the Naughty list next year.

Happy Holidays!


Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

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Why I spend (most of) my weekends at home after brain injury

BY: ALYSON ROGERS

A brain injury can come with a variety of symptoms, from visual disturbances to changes in personality.

I have a diffuse axonal injury – a fancy term for damage to tissue in multiple regions of the brain – and the most significant symptom that comes with such a fancy term is fatigue.

When fatigue is present at all hours of the day, down time is precious. I work full-time, and anything beyond that requires a lot of thought, caffeine and an understanding that I need to be in bed by 9 p.m.

Unlike other symptoms of brain injury, fatigue is predictable: if I’m not at work, I’m probably at home. I may leave the house for a few hours on a weekend, or not at all.

My friends often ask what I do when I stay home, how can I stay occupied for all of those hours?

picture of Alyson's home: a picture on the wall of a door with a pillow on a white table that reads 'live, laugh, love' a coffee pot, mug and flowers on a wooden table. Coffee cup reads 'go away I'm reading'
PHOTO: ALYSON ROGERS

My days at home start with the relaxation essentials: my diffuser and candles. Trust me, whether you want to feel relaxed, energized, renewed, happy or sleepy, there is an essential oil and candle for that. I take an opportunity to stay at home as one to take care of my body and feel good. This means alternating between sipping tea and water while I light up the diffuser and candles.

The reason I stay home is two-fold; I’m staying home because I’m exhausted and I’m staying home because I need to rest up for the week ahead. The more brain injury symptoms I’m having, the more likely I am to be on my couch.

Essential oils
PHOTO VIA PEXELS

While I spend some time watching movies and television, I can’t sit for hours doing this. My favourite activity when Netflix is off is reading. I usually have a lot of books on the go depending on my mood, including crime books, academic reads and something light, like Mindy Khaling. My other favourite activity is Sudoku, the extreme sport of the brain-injured. (On a side note: if you have any unused Sudoku’s from your newspaper, let me know!)

This down time has also given me more time to write. Beyond the BIST Blog, I also write for The Mighty and have contributed a personal essay to a feminist comedy book coming out in the summer.

Since I moved into a one-bedroom apartment and got an adult job, I have become obsessed with decorating (and redecorating) my apartment. I have decided that if I’m going to be spending so much time at home due to my disability, I’m going to make my home beautiful. I’m a big fan of fake plants as they are self-sustaining and do not care that I am a bad plant mom.

This may sound boring to the able-bodied as there are plenty more interesting things that one could be doing with their weekend. As a person with a disability, this works for me and ensures I’m able to show up for who and where I’m most needed.


Alyson is 26-years-old and acquired her first brain injury ten years ago. She graduated from Ryerson University and is a youth worker at a homeless shelter. In her spare time, Alyson enjoys writing, rollerblading and reading. Follow her on Twitter @arnr33 or on The Mighty.

 

 

 

 

Will new research help treat excessive sleepiness post TBI?

BY: Sophia Voumvakis

In May 2011, I sustained a traumatic brain injury (TBI). My TBI left me with a number of physical,cognitive, and emotional deficits. Working with an occupational therapist, we were able to identify these deficits develop a number of strategies to help me compensate for them. I will be eternally grateful for the help I received from a compassionate and eminently capable occupational therapist.

photo credit: 3/365 - Self Portrait for 365X3 via photopin (license)
photo credit: 3/365 – Self Portrait for 365X3 via photopin (license)

The one deficit that I have found the most difficult to accept is my need for more sleep. My two-hour afternoon rest period, actually, a nap, is sacrosanct. I am unable to function without it. This nap is in addition to a good nine hours of sleep a night, much more than I needed before my injury. My need for more sleep has made a huge dent in the number of productive hours I have in a day.

Whether the TBI is mild or severe, at least 25 per cent of patients experience some disturbance in sleep and/or level of daytime arousal following their injury. These symptoms can impact recovery and contribute to disability.

Most doctors will tell you that increased need for sleep arises because it takes time for the brain to heal; even a mild concussion can disrupt neural fibres and that mental activity may take much more effort following such an injury.

photo credit: Cat Naps via photopin (license)
photo credit: Cat Naps via photopin (license)

I recently came across an article by Dr.Barbara Schildkrout where she discusses new research in pleiosomnia, the need for an unusual amount of sleep in a 24- hour period. This research may point to new treatment approaches for this common symptom of TBI.

Schildkrout discusses the findings of two research studies which draw attention to the fact that injury of the hypothalamus is common in TBI. The posterior nucleus of the hypothalamus which contains histaminergic neurons is most affected by injury. Histaminergic neurons are part of a the body’s system which control wakefulness. The researchers suggest that a consequence of shearing forces at the point where the hypothalamus and the midbrain meet during head trauma is the loss of histaminergic neurons.

The research also identifies a less substantial but still significant loss of hypocretin/orexin neurons and melanin-concentrating hormone (MCH) cells in the hypothalamus. Scientists know that these types of neurons and hormones are involved in regulating arousal and sleep. In individuals with narcolepsy (frequent and excessive sleepiness) the hypocretin/orexin neurons are deficient or absent. MCH neurons are involved in both REM and non-REM sleep and are thought to promote sleep

The authors suggest that their findings point to a new approach for treating post-TBI patients who experience the need for extra sleep. Drugs which increase histamine signalling to the brain may prove helpful in the management of excessive sleepiness in TBI survivors. One such drug, Pitolisant, is being tried with some success in patients with narcolepsy and might prove helpful to TBI survivors, who like me, suffer from excessive sleepiness.

In my life before my TBI, I was a researcher. I had a passion for conducting both primary and secondary research and then communicating the results of that research in an accessible way. I hope that this is what I’ve done here, and I hope to do more of it in the future. Now, it’s time for my nap!

Since her TBI in 2011 Sophia has educated herself about TBI. She is interested in making research into TBI accessible to other survivors.