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.

Trying to get back on the reading rehab track

Shireen Jeejeebhoy writes about her journey back to the love of reading. You can read full articles about Shireen’s reading rehab on her blog.

“What do you want me to say to get you reading again?” My neurodoc asked me.

“I don’t know,” I shrugged.

About a week after I got back from a vacation in England, my neurodoc called and gave me my new reading homework. Same regimen as before: read two paragraphs after doing the skeleton, read out loud and slowly enough to avoid a headache and to enhance accuracy, and read every two days.

Photo:
Photo: Toronto Review of Books

I half-lowered my eyelids, slanted my brows, and stared mutinously and exasperatedly and frustratedly into the distance. He repeated he wants to help me; his goal is to make me better. He continued in that theme for a few minutes.

I began to process his words. I believed him, yet … I continued to process his words over the next hours. I began to think:  maybe I can read two paragraphs from my reading homework during brain biofeedback. But should I tell him?

Several months ago, my neurodoc pointed me to a series called In Treatment for research into one of my books. In one of the videos, the narrator talks about testing the therapist. I guess that’s what I’m doing. How committed is he? Will he rely more and more on me to motivate myself in spite of me telling him I need him to be that for me?

Photo:
Photo: 4bpblogspot.com

For me to initiate and motivate myself takes a tremendous amount of energy. Never mind the emotional toll of feeling like I’m walking the treadmill of recovery alone. The treads on my running shoes are worn out. I need to know that there is at least one person on this planet who will be my Go Button, who will encourage me sans irritating me (not easy, I admit), and won’t expect me to carry on by myself while at the same time asks me if I’m pushing myself too hard.

So in the end, I did the skeleton and read two paragraphs during brain biofeedback. My forehead felt thick with effort, and my limbs became weak. But my gamma went up and my heart rate came down. He didn’t ask me about my reading when I spoke to him, and I didn’t tell him. My neurodoc’s homework instructions were to read every two days. I will try again next week.

Shireen Jeejeebhoy sustained a brain injury in 2000. Since then she has written several novels and the book Concussion Is Brain Injury, but reading books remains a struggle. She is trying for the umpteenth time to regain that lost love. Go to her blog to read the full version of this article.

The Heart of Art

BY: MARK KONING

I have found Art to be a great therapy tool. I say that with a capital ‘A’ because I am referring to all forms of Art, from singing to painting, dancing to acting. For me, writing is something I use as my coping mechanism and support for understanding. Writing is my learning tool and aids my growth. But throughout my life it has been anything creative that has made an impact. It is the ability to use the imagination, to soar high and move forward.

photo credit: Writing Tools via photopin (license)
photo credit: Writing Tools via photopin (license)

I have heard many stories about the ways in which a form of Art has helped individuals deal with brain injury, such as music or sculpting. Creating seems to bring about a relaxation to the mind, and a flow to the body. Even listening to music can offer someone motivation. Looking at pictures or staring at a painting can begin to alleviate pain.

Art is in the eye of the beholder, and because of this freedom, it can bring huge amounts of joy to the heart. It does this for plenty of people both with and without a disability because creative arts are like magic to the soul.

Doing the craft yourself or witnessing it within the pages of a book, a stage, the big or small screen; the brain becomes active and stimulates emotions. These are emotions which otherwise tend to remain stagnant when stuck in a cycle of isolation, depression, or frustration. Just calm down and pick up a paint brush, hum a tune or get lost in the cloud of the imagination. I’ve seen brain injury survivors come alive and develop a passion because of Art. Those powerful feelings can be transferred onto other challenges such as cleaning the house to going to a regular job.

photo credit: Massimo Ranieri Concert 2009 Taormina-Sicilia-Italy - Creative Commons by gnuckx via photopin (license)
photo credit: Massimo Ranieri Concert 2009 Taormina-Sicilia-Italy – Creative Commons by gnuckx via photopin (license)

Dr. Lukasz M. Konopka  states in Where art meets neuroscience: a new horizon of art therapy,

Various fields use the concept of brain plasticity. One such very exciting, emerging field involves the study of art and the brain, or art therapy. … in terms of therapy, there is no difference between using scientifically validated novel art therapy and other current standard therapeutic interventions. Treating human pathology using art gives us a tremendous alternative unique and novel option for engaging brain networks that enhance the way the brain processes information, incorporates external and internal data, and develops new efficient brain connections.

Whether you are looking at art from a scientific standpoint, a therapeutic one, or as just a hobby, there is no doubt that the effects that dance upon the brain are inspiring.

Since sustaining his brain injury at an early age and now armed with a Creative Writing diploma and a social responsibility, the goal for Mark is to share, inspire and grow, with others and himself. To learn more, you can visit his website at www.markkoning.com

Community Meeting Round-Up: Eating healthy on a budget with Joanne Smith

When Joanne Smith acquired her spinal cord and brain injury at the age of 19, after the initial recovery, she says she spent 10 years feeling “lousy.” On top of dealing with her injuries, additional challenges such as weight gain, fatigue, digestive pain, neuropathic pain and migraines had a big impact on her quality of life. Then she took a look at her diet.

Smith said she was eating the same convenience and processed foods she ate as a teenager, prior to her injury. And when she changed her diet to more nutritious, whole foods, she says, she changed her life. She lost weight, and her headaches and pain went down. She felt better. That’s when she decided to go back to school and learn more about nutrition.

Joanne Smith and BIST member
Joanne Smith and BIST member Michael (Pinky) Clouthier

Smith became a certified nutritional practitioner, work she continues to do to this day. She’s also been the host of two TV shows focussing on disability issues (the Gemini-award winning Moving On and Accessibility in Action) and co-authored the book, Eat Well Live Well with Spinal Cord Injury. And on a Monday night in March, she came to the BIST community meeting to teach us about eating well on a budget.

Smith began her presentation with this somewhat disturbing statistic:

Each year we eat on average_

The bodies of ABI survivors, Smith said, are more susceptible to inflammation. Diets with too much salt and sugar (basically, the average North American diet) can trigger inflammation, leading to swelling, headaches and mood changes. Changing your diet, Smith says, can improve these symptoms.

Smith acknowledged that changing your diet can be challenging – especially for ABI survivors who may have a limited budget, accessibility challenges getting to the grocery store and energy issues. But she said that while many people think it’s more expensive to eat healthy it doesn’t need to be. For example, making your own food is cheaper than buying it, as per National Geographic’s article, What Can You Get for Ten Dollars?

Image via National Geographic
Source:  National Geographic

Smith’s tips for healthy grocery shopping on a budget

  • Make a list before you go out, and stick to it
  • Avoid the centre aisles of the store, they tend to have the processed, more costly food
  • Buy whole foods (foods which have been through very little processing and do not have additives) – they’re cheaper and healthier
  • Avoid pre-chopped produce, which tends to be more expensive
  • It’s cheaper to buy in bulk
  • Double or triple salad recipes so you can have prepared food for the week ahead. Put salad portions in individual serving containers in the fridge for a quick grab and go. (Smith says dollar stores are great places to get Tupperware.)
  • Grow your own – it’s possible to grow herbs, fruits and vegetables in a small window box garden or balcony.
  • Organic is not necessary, Smith says. Just wash your produce really well by filling your sink with water and a splash of vinegar, rinse and rub. (And here’s some motivation, Smith says the average apple is sprayed with pesticides 17 times.)
  • If you are going to invest in organic food, Smith says it’s best to spend your money on organic meat.
  • If possible, avoid shopping during peak times (such as the weekend). Produce is often marked down on Monday mornings and Saturday nights, afer the rush.
Making a smoothie
Making a smoothie with spinach, banana, almond milk and peanut butter

Reading labels and ingredients is crucial to healthy eating, Smith says. Watch out for trans fats, which can lead to inflammation. And beware of ‘no sugar added’ labels, some foods with these labels can still be loaded with naturally occurring sugars which still count as sugar. A single serving of food should have no more than five grams of sugar.

Artificial sugars are worse, Smith says they irritate the nervous system, can set off your mood and induce headaches. They can also stimulate your appetite, and there is evidence that people who use artificial sweeteners may consume more calories than people who don’t. (Smith says if you have to use artificial sweeteners, use stevia, which is 200 times sweeter than sugar and has “no horrible side effects.”)

Beware of foods which claim to have Omega-3, we need three to four grams of omega-3 a day to be useful. To get that amount from margarine, for example, Smith says you’d need to eat the whole container. (Best-news-ever: butter is way healthier than margarine, and good for your immune system.)

If you’re buying fish, avoid any fish that is farmed. (Smith says she doesn’t buy fish unless it says ‘wild’ on the label.) Farmed fish are fed grains, and can acquire diabetes as a result of their diet. As a result, farmed fish do not have the essential omega-3s which wild fish have.

And here’s one that may be a shocker: don’t heat olive oil. Olive is wonderful to use on raw foods, such as salads, or to poor on pasta, after it has been cooked. Instead Smith recommends cooking with coconut oil or rapeseed oil. (If you want to read more about the cooking with olive oil debate, go here.)

Finally, Smith says drinking your nutrients is a great way to get your nutrition. Smith uses the Nutri Bullet to make her smoothies, which go for about $90 to $100. She says she’s not a fan of juicers, since they tend to remove most of the fiber. But the point is, Smith says, you don’t need to invest in an expensive juicer or blender to get the benefits of drinking your nutrition. At the meeting we made a great smoothie consisting of: almond milk, peanut butter, spinach and banana.

Shannon and John enjoy their smoothies
Shannon and John enjoy their smoothies – made with spinach, almond milk, peanut butter and bananas

Most importantly, Smith says, take things one step at a time. “You’ll be amazed at how much better you feel.” We felt better just listening to her – and sampling those smoothies.

For more information: Joanne Smith | Fruitful Elements | fruitfulelements@gmail.com | 416-992-2927

Next community meeting: April 27th – Masquerade Themed Volunteer Appreciation Event!

Is it the right time for a hidden disability symbol?

BY: RICHARD HASKELL

“You seem fine to me,” may be one of the worst things to say to a brain injury survivor – or anyone with a hidden disability – for that matter. This invisibility is one reason why Laura Brydges, an Ottawa woman living with the affects of brain injury, decided she need to do something to make hidden disabilities, visible. (You may have caught the recent Toronto Star article about her from a few weeks back.)

LAURA BRIDGES; PHOTO CREDIT: RG WHITE
LAURA BRYDGES; PHOTO CREDIT: RG WHITE

Since that article, Brydges’ Hidden Disability Facebook page has hit 5.2K likes. She’s getting attention from organizations, individuals and media from all over North America and the U.K. But a really big moment was receiving a photo of someone from the U.S. using one of her cards.

I have been overwhelmed. I can’t even describe the emotion,” Brydges said. Seeing that photo just touched me to the core, it made it real.”

Brydges stresses that making hidden disabilities visible is a safety issue. She lists incidents where not understanding hidden disability can have deadly results. There was a child with autism in the U.S., she says, who was shot by the police. In Ottawa, there was a child in school who has handcuffed because of misunderstanding a hidden disability. In Winnipeg, there was a veteran with PTSD who was physically kicked out of a bar because he had a therapy dog. Brydges finds these stories and posts them on her Facebook page, collecting articles which prove  her point, time and time again.

Like many brain injury survivors, Brydges faces significant obstacles in her daily life, most of which are hidden. She has problems concentrating and has a low tolerance for noise or bright lights. She cannot drive or use public transit. Being in a large crowd for more than a short time can cause her to become, what she refers to as, cognitively overwhelmed, sometimes to the point of tears.

Especially in the years right after her accident, Brydges says she couldn’t trust herself to be able to respond to an unexpected situation. For example, if someone on the street was having an emergency, she would have difficulty in processing information, to, for example, call 911. A frustrated first aid responder trying to enlist her help, repeating the message to her faster and louder to her would only make it worse.

Which is why, using nothing more than an interest in desktop publishing and sheer determination, Brydges designed a symbol consisting of a blue and white figure inside a circle with the words Hidden Disability on wallet-sized cards.

THE HIDDEN DISABILITY SYMBOL
THE HIDDEN DISABILITY SYMBOL

Similar to the international symbol of accessibility for those with physical disabilities, the card is something Brydges feels could be used by those affected by hidden disabilities such as brain injury, autism or epilepsy. She calls it ‘a self-advocacy tool’ people with hidden disabilities can use to educate the public on the obstacles they face every day.

Brydges  began working on her hidden disability symbol in 2009. A year later, through Facebook, she found 592 adults to participate in an online survey about whether there was a need for a hidden disability symbol. The result:  80 per cent of the participants (the majority of whom had a hidden disability) agreed an international symbol was needed. A few years later, Brydges asked for feedback on how to develop the symbol, which originally was a checked figure. She changed that design after learning some people had difficulty processing it.

the
HIDDEN DISABILITY OPTIONS PRESENTED IN THE SURVEY

Brydges believes there’s a need for a hidden disability symbol, and the time is right for it. “I think people with hidden disabilities are ready. They’re tired of either living very small lives and not explaining themselves or having to explain themselves over and over again when they go out,” Brydges said. “They’re tired of people treating them poorly to the point of verbal abuse and sometimes to the point of physical abuse when they park in an accessible parking spot. Even though they have a permit. I think it’s just time.”

The hidden disability symbol could be her design or someone else’s, Brydges is all about the cause, and willing to let word about the symbol spread organically. She’s made the symbol available for download, with some stipulations, and is working on improving its print quality. The front of the cards can have the name of the condition on the bottom and the back can be customized to meet specific needs of each condition.

Brydges also believes organizations which serve people with hidden disabilities have to work together. “We’re stuck in this model of ‘I have this condition’ and ‘you have that condition’ instead of ‘when we’re out, these are the common problems with environments that aren’t highly conducive to our functioning,” she said.

Inspired? Brydges thinks Hidden Disability awareness would spread even further if she could get on The Ellen Degeneres Show. You can help make that happen by filling out this online form here.

One mom’s perspective: caring for a son with a brain injury

BY: BARB KUSTEC

I have been the main caregiver of my son, who suffered a catastrophic brain injury in an accident four years ago.

The first thing that comes to mind about being the main caregiver for my son is the blessing of love, closeness, bonding and devotion that I’ve had the privilege of experiencing. There are no words to describe the many blessings granted me for that time with my son. It was as if he was a newborn all over again and I had a second chance with him.

He also remembers who was there for him at the hospital, day in and day out for four months, and it has shown him that family are truly the most important people in your life. What a gift that is.

Barb Kustec with her son
Barb Kustec with her son

The next thing that comes to mind is exhaustion, fear and anxiety. A brain injury has a very long recovery period, and may last a lifetime. So thinking about the future is not a fun experience for us. We worry who will look after him if we die. We worry if he will ever be able to hold down a job, find a wife or have children. Right now he is alone. Friends have disappeared.

His sisters are younger and not able to relate to him. All they know is he stole me from them. And they’re right, they did lose time with me. Feelings of guilt and sadness often surface in our family. But for me, the hardest thing has been exhaustion.

Caregiving demands are huge. It’s not just the care of the person with the brain injury, but dealing with insurance, lawyers and mounds of paperwork; all the time keeping the multiple doctors’ appointments, doctors’ recommendations, and implementing those recommendations; while managing the rest of your family and their needs. Such as bills. Such as school. Such as forms for school. Homework. Meals. Housework. Fun.

Obviously no one person can do all this, but you try to keep all the balls in the air, and before you know it, one drops. Maybe two. The first for me was cooking. We relied on fast foods. The second was housekeeping. The third was fun, followed by school and homework.

dirty laundry
photo credit: DSC_0611 via photopin (license)

Jump ahead to now, almost four years later. I am so glad I made the sacrifice. I have my son, and he has made a miraculous recovery. We still have a way to go, but it has really been a miracle. I would do it all over again. Of course my Faith was what helped sustain me and the prayers of many across the world.

I tired, exhausted and worn out. But I have learned to reward myself with a weekly hair wash and blow dry from my hair stylist. Every couple of months I treat myself to pedicures or manicures. I now have services in place to help in our weakest areas of need in the home, such as housekeeping and meals, and have set up tutoring for our girls. But the best thing we did for all of us was vacations and or outings. My sister took the girls to her cottage for the first two weeks. Six months into it, I took the girls to Walt Disney World and we are going back again this year. My husband also got away with the girls to Great Wolf Lodge and Ottawa. And this summer we all went to the east coast together.

All of this takes takes time and money. The burden of being a caregiver of a catastrophic brain injury survivor is about balancing short and long term needs. Brain injury rehab is costly, in terms of time and money, but you can’t put a price on family or individual health, so you do what you have to do for survival and pray it will all work out for the best.Your life will no longer be the same. It is forever changed, but we have tried very hard to see the good in all that has come about from the bad of the accident.

pedicure
photo credit: My Toes via photopin (license)

Would I want to do this again? No. But if the situation arose, I would humbly jump in all over again and pray for the best!

Barb Kustec is the mother three. Her son’s accident was on Aug 20, 2011. They have been members of BIST for the past three years.

Nominate a BIST vollie for the Volunteer of the Year Award!

Do you know a great BIST volunteer who goes above and beyond the call of duty – every time?

Nominate them for the BIST Volunteer of the Year award!

Volunteer of the year award 2015

Eligibility:

  • Actively involved in BIST (attends community meetings, committee meetings or events)
  • Makes an impact on BIST and its members and services
  • Is a current a BIST member
  • Is not currently on the BIST board of directors

Complete the BIST VOLUNTEER OF THE YEAR NOMINATION FORM and send to info@bist.ca!