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Interview: Inside one of the world’s biggest concussion studies

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Concussion is a huge concern across the US military and in sports. In 2018, 19,000 military personnel were diagnosed with a traumatic brain injury, while college athletes had an average of 10,500 concussions for past five years.

Despite the numbers, many say there’s a lack of research to inform ways that government and industry can best tackle this problem.

In response, the largest prospective concussion study was formed to fill the gaps in understanding, to see what recovery from a concussion looks like in athletes and cadets.

More than 44,000 people have since enrolled in the CARE (concussion assessment, research and education) consortium since its inception in 2014, across 30 universities and four military service academies across the US.

It has so far captured data on more than 4,300 concussions. The study is funded by the National Collegiate Athletic Association (NCAA) and the Department of Defence.

It’s believed that NCAA athletes represent the best model for what happens with concussion in the military.

Researchers involved in the study hope their findings will allow them to predict what happens to people after a concussion; information which can then help inform protocols that could become the standard for universities and the military.

Steve Broglio, associate professor at the University of Michigan’s School of Kinesiology and departments of neurology and physical medicine and rehabilitation, and one of the project’s leaders, says the initial aim was to be able to define the acute history of concussion, and see what happens to people after they have a concussion, establishing both a clinical arm and a research arm.

“In the first days of the project, we enrolled 35,000 civilian athletes and military service cadets to try to understand what was going on,” he says.

“We captured this by understanding their clinical natural history,” such as if they went to the doctor about their symptoms.

“The second arm of the project was to understand what’s going on a biological level, using genetics and biomarkers and advanced imaging, to see if recovery on a biological level reflects the medical level,” Broglio says.

In 2018, the team moved on to the second phase of the project, which was to understand the persistent and long-term effects of concussion.

“We continued to enrol people and we now have 55,000 participants. Each one receives a baseline exam when they enter institutions,” Broglio says.

“The second phase is now starting to get exit data as gradates do another evaluation to see if their concussion has had any effect on their brain functioning.

“In parallel, we’re also reaching out to people who graduated from intuitions, so they can do online evaluations to see if the long-term reflects just after they graduated, and within the first five years of gradation. The goal now is to start tracking people for their whole life to see the trajectory, and to see what percentage of people have issues,” he says.

Thanks to its findings so far, the consortium has participated in setting the concussion policy for the NCA, which outlines how concussions are managed, Broglio says.

So far, CARE has published around 60 papers relating to various findings, and Broglio says some of the consortium’s findings have had more impact than others.

In general, he says, findings that chime with a wider body of research that came to the same conclusions are more likely to help enact changes in policy because they will carry more weight.

“Some of what we’ve found doesn’t match what other people have found, some things have been consistent with other studies. When it matches, we can say, ‘Right, we need to change something’,” he says. This research is unlike any other, he says, partly because of how far-reaching it is.

“We were interested in getting a broad understanding of what’s going on across all cohorts. The very first goal is to understand the natural history of concussions, and the recovery rate of athletes and cadets participating in multiple levels and across different sports and different sexes.

“Prior to the project, most of the literature focused on male contact collision sport athletes, such as American football, maybe ice hockey and lacrosse. We have close to 50 per cent women in the study, across every NCA sport.”

These sports include basketball, baseball, ice hockey, water polo and cross country. The areas with the most reported concussions, according to the NCAA, are women’s soccer, football, ice hockey and wrestling.CARE’s most recent research, which is yet unpublished, shows that there are different recovery rates based on the sport.

“No one has ever shown this,” Broglio says.“There’s almost an identical recovery rate between men and women that hasn’t been found before, and which we didn’t anticipate. It’s largely been recorded that women take longer to recover, but when matched with equivalent sports, men and women’s recovery rates are virtually identical, which is a pretty significant finding.

“We’ve also had a series of papers looking at the cognitive performance of contact athletes relative to non-contact. They perform the same, if not better. This, he says, runs counter to the school of thought that repeated blows to the head causes chronic traumatic encephalopathy, a neurodegenerative disease which causes severe and irreparable brain damage.”

Some of those things are different to what’s been previously reported, which also opens the door for more research and conversation,” he says.

As well as research, the project is also focused on education for athletes, trainers, coaches and families.

Funding for CARE expires in one yea, and the consortium is in the process of submitting for the next five-year cycle.

“We could be around for as short as 12 months, or it could be another five years. Ideally, it would be another 50 years, so we can track participants,” he says.

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Interviews

The stroke survivor turned rehab provider

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When Mark Fricker suffered a stroke aged just 32, the lack of access to dedicated rehabilitation inspired him to retrain as a stroke rehab specialist. Here, he shares his inspirational story

Mark Fricker is very matter-of-fact about the impact of his stroke.

I view it as a positive moment in my life,” he says.

“I now help people walk again, which is very rewarding, and I feel I have been given this chance in life to help others.”

Back in 2002, when Mark suffered a devastating stroke while on holiday, the outlook seemed bleak. With nowhere near the access to specialist rehab Mark knew he needed, he resolved to do it himself.

Eighteen years later, Mark is now helping others who are in his very position back in 2002, showing them how possible it is to rebuild your life and achieve your aspirations.

Having gone back to university to retrain, he has become an ARNI stroke rehabilitation specialist, supporting scores of people each year to rediscover new possibilities in their recoveries. 

As the founder of Destination Fit, a studio in Weybridge, Surrey, Mark supports stroke survivors, alongside people with neurological conditions including Parkinson’s and Multiple Sclerosis, on their journey to recovery. He has also established Mark Fricker Neuro Rehab, which extends that specialist support into at-home rehabilitation.

With limited NHS aftercare or resources once a stroke survivor has left hospital, I wanted to offer help to people who were in the same position that I was and to show them with hard work, determination and a commitment to succeed they can progress towards regaining some or all of their lives back,” says Mark.

Mark’s dedication to supporting stroke survivors came from his own experience of recovery, which saw him suffer a major stroke while on a motorbike holiday on July 1, 2002. He was only 32 with an eight-year-old son.

I was with a group of friends on holiday riding our motorcycles back from Germany when I collapsed and passed out,” he recalls.

“I crashed into a friend in front of me and we both fell off at high speed. I dont remember this, in fact, I dont have any memory for around six months prior to the stroke.

I remember waking in a small Belgium hospital with a broken right arm and dislocated shoulder and not being able to move my entire left side of my body, I had blurred vision and could hardly talk.

I was then flown back to the UK and it was only then that we discovered I had had a haemorrhage on the brain.

I spent six weeks in a stroke unit in London before being discharged, still paralysed and unable to walk or use my hands and arms.”

Mark’s realisation that access to specialist rehab was not readily available was devastating, but also inspiring.

The aftercare for stroke survivors then, as it still is now, was a 30-minute physio session once a week for six weeks,” he says.

I attended one of these sessions for the first week, realised that it would be nowhere near enough rehabilitation to get me walking again, and decided I would research stroke rehab and do it myself.

I set myself a long term goal of completing an ironman triathlon within five years. I knew I had a long road ahead of me as I couldnt even stand unaided but was determined I wouldnt stay in a wheelchair at the age of 32.”

Mark set aside six hours each day for his rehabilitation exercises, and refused to be deterred by the fact he could not move his left side.

The first time I was able to pick up a marble was when I knew I would overcome my disability,” remembers Mark.

“I cried with joy and that one action motivated me more than anything else.

I spent the next two years working on my rehabilitation. I could eventually walk with a stick, hold a knife and fork and drink from a cup.”

Mark’s hard-earned recovery then made him realise the desire to help others who faced a similar long and difficult journey ahead.

I decided to retrain and went back to university to study sports science and in 2007, five years after my stroke, I completed an ironman triathlon,” he says.

I also passed the level three personal training qualifications and set up Destination Fit in 2011 to help others become active and healthy. I became an ARNI stroke rehabilitation specialist and am trained in Parkinsons and MS conditions.

“I wanted to give people hope and to prove to them that with determination and support they can achieve their own personal goals”.

In the nine years since Destination Fit has been operating, Mark and his team have helped people of all ages and with a variety of conditions, improving their lives and, importantly, vastly increasing their belief in their own ability.

One client, Issy, suffered a stroke aged only nine and whilst at school. She was left completely paralysed on her right side and with some cognitive issues. Her parents were told she would never walk again, or have the use of her right arm.

She has attended Destination Fit twice a week for 18 months, and her sessions have enabled her to dance, run and rediscover many activities which previously seemed impossible.

Another client, Doug, is 71 years old, and suffered a stroke 15 years ago. He has been working with Mark for two years now, initially to improve his walking. As a result, he was able to walk around his local garden centre – an unthinkable accomplishment prior to his rehabilitation work.

“Having been through this gruelling experience of recovery myself, I am committed to giving people hope and belief they will get through it and can achieve their goals. That is what we are doing with so many clients, who are achieving fantastic results, and what we will continue to support people to do,” adds Mark.

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Interviews

Video: Watch the latest edition of the Curious Case Manager

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Episode six of the Curious Case Manager features Fifth Sense, a charity for people affected by smell and taste disorders.

In this episode Vicki Gilman talks to Duncan Boak, founder of Fifth Sense and Nina Hill, director of development and operations.

They discuss Duncan’s own experience of loss of smell after he suffered from a traumatic brain injury, and how this led him to establish the charity.

Duncan and Nina explain the history and development of the charity and explain how they support individuals with smell and taste disorders through providing information, advice and access to a network of specialist clinicians.

Other topics include the causes of smell and taste disorders, smell training, smell memory and practical strategies to improve the quality of life of sufferers.

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Interviews

‘Lockdown inspired me to run a marathon’

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Having suffered a brain injury which left her struggling to rebuild her life, Helen Whiteley found salvation in running. Here, she tells how she went from running for the first time to completing the Virtual London Marathon in only eight months.

“On November 24, it will be eight years since I suffered a traumatic brain injury (TBI) from a fall at home. I was found unresponsive at the bottom of my staircase at home by my husband Simon; I have no recollection of how I got there.

“I was initially taken to Huddersfield Hospital but once I was stabilised I was transferred to the Leeds General Infirmary neurosurgery department. It was here I was diagnosed with an acute subdural hematoma and fractured skull and was taken immediately into surgery for an emergency craniotomy to evacuate the hematoma. I was then placed in an induced coma on the neurosurgery ICU ward, where I stayed for a number of weeks.

This period was extremely traumatic for my family, especially my daughter Isobelle and son Isaac, who were only 13 and 9 at the time. My family were told that is was unclear as to whether I would regain consciousness once the drugs were withdrawn, and if I did, what permanent physical and mental disabilities I could be faced with for the rest of my life.

Fortunately, I did recover, albeit very slowly, although the brain injury has changed my life and who I am.

Following my accident, I suffered acute anxiety and was unable to leave the house and struggled with my balance needing a stick to help me walk. When I eventually was able to go out, I needed to be accompanied at all times. The simplest things were a struggle due to my lack of self-confidence and awareness of situations; I was taken out regularly by my physio to ensure I was able to cross a road safely.

I found it difficult to interact and communicate with people and was unable to cope in busy or new surroundings. I had, and still have, a very poor memory, struggle with cognitive functions and have lost my sense of smell and have a reduced taste.

I needed coping strategies like lists to ensure simple daily tasks like cleaning my teeth were completed. In February 2014, I suffered a seizure and have been diagnosed with epilepsy which is now controlled by medication.

I know I am not the same person I was before. I have no filter, speak my mind and can be immature, much to the horror of my children. These are all consequences from my brain injury.

Furthermore, I no longer work full time as an accountant for the NHS, as I had to retire due to ill heath, but I now work part time in a library which I do really enjoy.

I have been on a long challenging journey to get to where I am today but I have had the support of my family, my parents, occupational therapy, physiotherapy and the independent living teams.

Running came into the equation in January 2020, when my friend Gill signed me up for the Couch to 5K beginners running program with my local Northowram Pumas Running Club. I found the prospect of taking part in this extremely scary, very challenging and somewhat out of my comfort zone, having never run before.

At the first session I nearly went straight home but the support from the club run leaders was amazing. I progressed slowly on the programme, first running one minute then walking one minute, and slowly increasing this. On March 7, I did my first 5K park run with the Pumas. I was overjoyed that I had achieved this but then lockdown happened and everything changed.

During lockdown, I continued with my running. Through challenges set by our C25K run leader I felt confident to go out and run on my own and eventually I tried running off-road. The running club have been fantastic during lockdown, setting challenges for us to do and I set myself mini challenges, slowly progressing to run 5 miles, 10K, 10 miles, and 2 half marathons.

I had never taken a selfie before I started running, but as I made progress the pictures began to get posted on the running clubs social media. I have totally embraced the running bug and I am amazed by how far I have come in such a short period of time.

Prior to January of this year, I had never run or even thought I could after walking with a stick for the majority of my recovery to help with my balance issues. Running has helped in my recovery by increasing the confidence I have in myself and making me more independent, as well as introducing me to a new social group.

In hindsight, if it hadnt been for lockdown, I wouldnt have continued to run as I have. I would have been unsure of running with groups of different people and would have felt pressured. Lockdown enabled me to build up my running at my own pace with virtual support from the Pumas.

I decided to take on a new challenge and registered to take part in the Virtual London Marathon on October 4, running alongside Gill and Nic from the Pumas and following a route mapped by the running club, finishing in my hometown of Halifax at the historic Piece Hall.

This would be just a month before my 50th birthday, and nearly eight years since my life changing accident – as well as being only 8 months since I put on my first pair of trainers!

I only had one month of proper training prior to the marathon and the furthest I had run to that point was 18 miles, but I was determined to complete it. I committed to raising funds for Headway, as well as for the neurosurgery department at Leeds General Infirmary who cared for me after my accident.

I wanted to give something back, which hopefully in a small way will help support patients and their families at this critical time and to say thank you to the brilliant consultants and nurses who saved my life.

On race day, we set off from the Wraggles in Queensbury at about 8.40am. We had so much support during the run. Cars beeped and total strangers clapped and cheered us on. I was so emotional and absolutely amazed that Id done it and finished it in 05:37:45.

I know how very lucky I have been to recover from my injuries with only minor disabilities, but there are many people who are not as fortunate as I have been in my recovery. What I am doing is for them.”

To support Helen in her fundraising for Headway and the Leeds General Infirmary neurosurgery department, visit https://www.justgiving.com/crowdfunding/helenwhiteley

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