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Sidney Crosby's Road to Recovery

posted by SK Brain Injury    |   October 5, 2011 12:06

Look at your right hand. Close your eyes. Do you know where it is? Are you certain?

For months, Sidney Crosby was not.

While the rest of his Pittsburgh Penguins teammates spent the summer resting, working on their golf game and trying to get over a seven-game loss to Tampa Bay in the opening round of the playoffs, the game's greatest player spent it searching for a way back to normalcy.

Two head shots within a week of each other last January ended the former MVP's season, put his career in jeopardy and may have started a culture change in a sport where toughness, grit and “playing through it” are among the most prized commodities.

Crosby didn't set out to be the most public case study on the mysterious lingering effects of concussions. He simply wanted to feel better and get back to doing what he loved.

The road back has been more arduous than he ever possibly imagined when he was scratched out of the lineup following a game against Tampa Bay on Jan. 5 after experiencing what he's since described as “fogginess.”

Months of rest, of tests, of travel, of quietly — and not so quietly — refuting what his camp has deemed as misinformation about his condition, his health, his future have followed.

The organization did its best to give Crosby space. Coach Dan Bylsma and general manager Ray Shero checked in occasionally. Teammates, both old and new, would text or call to talk about anything and everything but the state of Crosby's head.

Penguins forward Jordan Staal says they texted about fishing. The words “vestibular system” — which focuses on a person's ability to balance and work within a given space, the system most affected by Crosby's concussions — never came up.

“I figured he was getting enough of it from everywhere else,” Staal said. “All that matters to us really is that he's healthy. All that stuff you thought you heard, I didn't pay any attention to it.”

Private by nature, the combination of Crosby's injury and his urge to get away from things back home in Canada during the off-season only seemed to feed the frenzy.

He was retiring. He wasn't retiring. He suffered a setback. He was skating at full speed. Each week seemed to bring a new rumour or theory.

Crosby remains polite but reserved when talking about the process, though he did spend more than 40 minutes last month addressing reporters while sitting alongside the two doctors who have overseen his rehabilitation.

Dr. Mickey Collins, a neuropsychologist at the University of Pittsburgh Medical Center, likened Crosby to a Ferrari. Dr. Ted Carrick, who practises clinical neurology and whom Crosby turned to when things seemed to stall in midsummer, has seen so much progress that he likened it to Christmas.

How exactly did Crosby get to this point in his recovery? Well, that's tricky. Unlike a muscle or a bone, there is no obvious physical evidence when you're healed. The science of how to handle and treat the vestibular system is evolving.

“It generally kind of boils down to retraining the brain to know where everything is in space and the awareness of where your body is in space,” said Mark Lovell, the founding director of the UPMC Sports Medicine concussion program and CEO of ImPACT, a computerized concussion evaluation system. “When you have an injury that can be thrown off.”

Getting it back in a normal person takes time, and lots of it. Throw in the unique demands of Crosby's job — namely making sudden movements and constantly recalibrating your balance to adjust to an ever-changing environment — and getting to the point where Crosby feels “normal” is an uncertain proposition.

A thriving vestibular system allows a person to trust their senses. Lovell likened it looking at your hand then closing your eyes and trusting your hand is in the same place. For a person with vestibular problems, that's difficult because the brain may be receiving faulty information.

“From a rehab standpoint you work on gradually giving people exercises so that they're increasingly able to tolerate the kind of side-to-side movement as well as have a better awareness of where they are in space in any given time,” Lovell said. “You can't do that all at once. If you do it too quickly, you make a person feel worse.”

That's part of the danger. Crosby allows his training regimen was adjusted over the summer. It seemed to be whenever he'd reach a certain threshold of exertion, his symptoms would return.

Frustrating? Absolutely. Mystifying? Sure. Enough of a reason to consider hanging up his skates for good? No shot. He's not the first player to deal with debilitating concussions, just one of the most famous.

Boston's Patrice Bergeron, who missed nearly the entire 2007-08 season with injuries sustained when he was checked head-first into the boards, told Crosby to hang in there.

“I was reaching out to him and just letting him know what I've been through I guess and that patience and staying positive is, it sounds kind of cliche, but that's exactly what it is,” Bergeron said. “And just to stay with it then he's going to be, you know he's going to find a way to get back.”

Not one to make declarative statements, Crosby said during his press conference it was “likely” he would play again this season, and he's attacked training camp ferociously even if he's forced to wear a different coloured helmet to let his teammates know he's not cleared for contact yet.

The Penguins open the season on Thursday in Vancouver but Crosby won't be in the lineup. He remains on injured reserve, meaning he'll have to wait at least a week before he can return to game action, though the truth is that it will likely take longer.

The league is pulling for him. Washington Capitals star Alex Ovechkin — the NHL's exuberant yang to Crosby's steady yin — is ready to see Crosby's familiar No. 87 back out there.

“I hope he's not going to feel dizzy or not feel sick anymore, and he's going to play — because he's one of the top guys in the league, and it's very hard to play against him,” Ovechkin said.

The NHL could certainly use him, and the league has taken an aggressive stance against the kind of head shots that put Crosby's future in limbo. Former all-star Brendan Shanahan, now in charge of league discipline, has been cracking down on players during the pre-season for taking dangerous and unnecessary chances.

It's a step in the right direction for a league starting to gain some traction. The last time Crosby played on national television, the Penguins were losing to the Capitals in the Winter Classic, the highest-rated regular season game since 1975.

His presence would help hockey fill a bit of the void if the NBA's lockout continues.

“It's huge,” said Nashville's Shea Weber, who played alongside Crosby on the 2010 Canadian Olympic team that won gold in Vancouver. “I mean he's really the face of the NHL I think. He's the most dominant player in the world.”

Or, at least he was.

Crosby isn't sure what to expect whenever he's cleared. He'd love to be the player who seemed to be in the middle of his prime last winter. He's not sure when that guy will show up, if he does at all.

“I'd love to be able to say first game back I'm right where I left off but it's pretty unrealistic,” Crosby said. “With that being said that's where I want to be. This is the best I felt since I've played NHL and that's what I want to get to. I want to get back there as soon as I can.”

After a restless summer spent wondering if its iconic star would ever return, so does hockey.

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News

Ken Dyden's Call to Action

posted by SK Brain Injury    |   October 5, 2011 11:59

It was an extraordinary press conference. Four people were at the media table in a spare setting at Pittsburgh's Consol Energy Center: Penguins general manager Ray Shero, concussion specialist Michael Collins, chiropractor Ted Carrick and Sidney Crosby. They were serious and straightforward. Through nearly 45 intense minutes, they offered almost no smoke or spin.

The medical experts, not the GM or the hockey player, spoke first.

Dr. Collins, head of the University of Pittsburgh Medical Center's Sports Medicine Concussion Program, laid out the events surrounding the injury, Mr. Crosby's resulting symptoms, the diagnosis, the treatment and the ups and downs of his recovery since January. He was patient and thorough. He spoke as if he knew his audience was intent on hearing what he said and, despite his occasional medical jargon, would understand him in all the ways that mattered.

With a few lapses, Dr. Carrick, a chiropractor and founder of the Carrick Institute for Graduate Studies in Florida, did the same.

Beyond the details, the specialists needed to convey that they were competent, professional and responsible – that Mr. Crosby is in good hands.

At times, they talked about Mr. Crosby's brain as if he wasn't there himself. Yet Mr. Crosby seemed undistracted. Respectful, he watched and listened as if the experts were only his trusted advisers. He was still the captain of his own ship.

When it was his turn to speak, Mr. Crosby was composed and informative, not seeming to hold anything back. He spoke of how he felt at each stage after his injury. At first, he had felt himself in a fog, he said, as if he was living one step removed from his own life, a spectator to it. Objects around him weren't quite where he knew them to be; once, Dr. Collins related, Mr. Crosby, feeling he was falling, found his body reacting when he wasn't falling at all. Even the flickering images on a TV screen moved too fast for him, making him dizzy – this in someone who had always seen everything so acutely, who at only 24 had seemed somehow to figure out hockey and life. Now, his board had been scrambled. Normal life, his medical people said, would return when, at full exertion, his headaches stayed away. Normal life as Sidney Crosby would return when everything went back into its proper orientation and, when confident of that, he could resume his Crosby-like creating, scrambling the board for everyone else instead.

The medical experts and Mr. Crosby said no one could predict when that would occur. Given where he had been and where he was now in his recovery, and pushed by the media's questions and by their own professional and human hopefulness, they put science to one side and declared that it would happen. Asked if he had played his last game, Mr. Crosby replied without bravado, “I wouldn't bet on that.”

Before the press conference, it was clear; after, it is even clearer. The National Hockey League season that begins next week – whether Mr. Crosby plays at all, or how well – will be about Mr. Crosby.

This is a difficult time for the NHL, for its commissioner, Gary Bettman, and for hockey. It's no less difficult for the National Football League, for its commissioner, Roger Goodell, for the U.S. National Collegiate Athletic Association, and for football.

Head injuries have become an overwhelming fact of life in sports. The immensity of the number, the prominence of the names, the life-altering impact on their lives and, more disturbing, if that's possible, the now sheer routineness of their occurrence. The hit on Mr. Crosby didn't seem like much. If it hadn't been him, the clip of the incident would never have made the highlight reel.

But if so much can happen out of so little, where is all this going? Who else? How many more? How bad might this get? Careers and lives of players, we know now, have been shortened, diminished, snuffed out by head injuries. What once had seemed debatable, deniable, spin-able now is not. What once had been ignored now is obvious. Not just contact or collision sports, hockey and football are dangerous sports.

Mr. Bettman, Mr. Goodell and sports leaders who came before them have done only what the players, fans and media have wanted them to do. They know we want our athletes to be better than they have ever been. We want them to be superhuman versions of ourselves – faster, bigger, stronger, more skilled, more committed. We want them, no matter the risk or pain, to prove beyond even unreasonable doubt that they are not in this for the money but for the love of their/our sport and their/our team, and to demonstrate that at every moment by being willing to do whatever it takes. The players, fans and media want great plays and thunderous hits. They need “wows” to compete against every other challenge – in sports, entertainment, news, politics – for the public's attention. And the players, and their commissioners, Mr. Bettman and Mr. Goodell among them, for the most part have delivered.

If the result has been collisions that are too dangerous, you “tweak” the rules, “tweak” the equipment, “tweak” the strategies of play, often in the face of great resistance – and the leagues have done this. But still the careers and lives of their players are being compromised, and now everybody can see it.

As a hockey or football commissioner today, you can't not know that many of your players this year, next year and every year will suffer head injuries. Some will have their careers ended; some, such as Paul Kariya and Eric Lindros, before age gets them, will begin their downward slide from superstar to journeyman; and some retired players will die long before their time, their final years, for themselves and their families, in the living death of dementia. This isn't being alarmist. This is alarming.

Mr. Bettman and Mr. Goodell can see this. So can the heads of the hockey and football players associations. So, increasingly, can the players, their wives and their families, and their lawyers. The commissioners and their leagues – mostly – are now beyond simple denial, defensiveness and counterattack. The challenge is no longer awareness of the problem. It's awareness of the solution. If you are Gary Bettman or Roger Goodell, what do you do?

I come back to the Crosby press conference. I'm not sure how it could have been done better. The message was that we are in uncharted territory. We know some things, there is much more we don't know and we're going to do what we know and respect what we don't until we know better. This is serious, and we are serious. And we want you – all those who are watching – to experience what we have experienced and learn what we have learned because, as people who love sports, we're in this together. It is this same tone, attitude and approach on head injuries that Mr. Bettman and Mr. Goodell need to take.

For Mr. Bettman, it's time to say: This is a great game, but it has a big problem, one that will get only worse if we don't do what needs to be done now. Our players will not get smaller, they will not skate slower, the force of their collisions will not diminish. The equipment they wear will not improve fast enough to mitigate the greater risks they will face. “Tweaking” is not the answer.

Immediately, Mr. Bettman can say that we need to treat any hit to the head as what it is: an attempt to injure. A hit to the shoulder, torso or hip – depending – is understood as good positioning and good defence; not so a hit to the head. The head has always been thought of differently, requiring special protection with its own peculiar penalties. Highsticking is not for a blow to the shoulder or elbowing for a blow to the chest. In the future, if a play results in an incidental and minor hit to the head, or one that is the fault of the player being hit, no penalty need be called.

But now, the presumption needs to be that every hit to the head is an attempt to injure, with the onus on the player doing the hitting, through his actions and in the eyes of the referee, to defeat that presumption. As Mr. Crosby said in his press conference, if the league requires players to be responsible for their sticks, why not their bodies? Further, if an opponent purposely puts his head in a position to draw contact in order to cause a penalty to be called, just as with “diving” now, it is that player as “instigator” who will receive the penalty.

But what about the player who is carrying the puck with his head down, another oft-cited example intended to show how impossibly complicated it is to ban headshots?

In years past, the best way to move the puck forward was believed to be for a player to do it himself, stickhandling up the ice. Having his head down with his eyes focused on the puck was considered an advantage to him. It was only fair, then, that a defender have his own advantage and, unseen by the puck carrier, be able to blast him.

Now, the best way to advance the puck is seen to be by passing, so a player with his head down is at a disadvantage already and doesn't require further punishment. He can be easily stopped with no more than incidental contact. In such cases, a crushing hit to the head (e.g., Scott Stevens on Eric Lindros) is nothing less than an attempt to injure. The common explanations – “Because he deserved it” or “Because I can” – are not good enough in this age of concussions and dementia.

What then about fighting? If hits to the head are banned, why not punches to the head? This isn't the time to re-engage the debate over fighting. Not directly. That will only distract from the more critical issue that must now be addressed. The problem of fighting, for most critics at least, isn't fighting itself. It's the consequences of fighting. To many, fighting seems out of place in sports, turning away prospective fans from a game that needs many more. To some, rather than acting as a “safety valve” to reduce further fighting, it creates increased ill will and generates more fighting. So why allow it?

What is relevant here is whether fighting relates to head injuries. Is fighting dangerous or not? Once, hockey players did their own fighting. An elbow to the nose or a slash on the arm, and – big or small; good fighter or not – a player had to right his own wrong.

Most players were bad fighters. On their skates, they wrestled, slipped and flung themselves around. It was vaudeville.

Now, most fights are between designated fighters. Each such fighter knows what he's doing, and though usually well-matched enough to be able to protect themselves, these fighters are also skilled enough to hurt each other. And questions have now arisen: Why did post-mortem studies on the brains of Reggie Fleming and Bob Probert, two brawlers of different eras, show brain damage? Why did three contemporary fighters – Derek Boogaard, Rick Rypien and Wade Belak – who were young and rich, and seemed to have everything to live for, die in recent months? We don't know the answers, but we know enough to know we need to find them.

The NHL rulebook is judicious in distinguishing a bodycheck to the head from other contact to the head, treating fighting as its own separate category. For an illegal check, it is necessary that “the head is targeted and the principal point of contact.” But in a fight, is the head not “targeted”? Is the head not “the principal point of contact?” Is a fist not part of the body? And in fights today, with fighters who can truly fight, what's the difference between being hit in the head by Niklas Kronwall's shoulder or Zdeno Chara's fist? This is about head injuries, not fighting's place in hockey. This is about the outrageous damage that hits to the head are doing to lives and to a sport.

Every time big changes are discussed, the same flood of examples comes forward in support of the aggrieved hitter and the historical game, and every time it steals focus from the gravity of head injuries and derails significant action. No more. The truly aggrieved is not the player or the team who receives the occasional unjust penalty. It's the player or family who has to live with years of an unfull life.

For Gary Bettman, the challenge is not to be distracted by history, by the voices of those who grew up as “hockey people,” or by the overwhelming power of the status quo. He is the central custodian of the game. If he takes on head injuries aggressively – and he must – some of his changes might be ineffective, others might be embarrassingly inept, and he might very well be mocked by fans and the media. But he and we will learn, and it is far worse to be mocked by damaged players for not doing what clearly needs to be done.

Many of these steps can be implemented this season, and with significant impact if their purpose – to prevent or otherwise minimize head injuries – is not forgotten and the rules to support that purpose are applied unfailingly. Other steps will take longer and be of greater effect, but they can be set in motion.

The game will get better.

Most important, however, it's time to think about our sports a different way.

What would hockey look like if it were played in a “head smart” way? If the safety of the brain was central to the rules? What about football and other sports?

What would we have to do differently? When do hits to the head happen? In what circumstances? In what parts of the ice? Against the boards? Against the glass? By whom? With shoulders? With elbows or sticks? They don't happen often. During most of the game, with most of the players, they don't happen at all. Why then? Why them? What about the big hits?

What would we need to do to minimize the risk? Because this isn't about no risk. It's about smart, informed risk. How would we make hockey safer? What would need to change? How would this game feel different to play? To watch? What would be lost? Unable to do some of the things they did before, what would players do instead?

My guess is that a lot less would change and for many fewer players than we think. My guess is also that many of the changes would make our games better, and not only for reasons of safety. If some rules are changed, players and coaches will find ways to adapt and to gain a competitive advantage, because that's what players and coaches do. They're dreamers and imaginers. They're competitive. They need to win.

Once, players and coaches came up with the forward pass in both hockey and football and gave flight to sports that had become a static snarl of bodies. They'll do it again. The mediocre will dig in their heels – they fear they can't change – and usually that's enough to stop everything in its tracks. But this time we have no choice. Not everyone will be affected the same way. Some things will change more for young kids but not for adults, or for girls and not boys, or for boys and not girls. The crucial point is that at every age and every level “head smart” will become the way we play.

This “head smart” movement should be global, not North American. We all face the same problems. Efforts might begin by gathering the most thoughtful coaches and players of a sport – in an area or in a country – and the best head-injury experts to begin putting together a “head smart” model for their sport. These models, as well as those created by other individuals and groups, would be put forward to the public and tested and debated through websites and later through local and international workshops and conferences. “Head smart” models generated in one place and in one sport would challenge and inform models in others, to make each model continually better.

The NHL, NFL and other sports leagues would engage with these efforts, sometimes as partners (in studies, in testing out proposals), sometimes financially, always in promoting the importance of the work.

The Crosby press conference suggests an opportunity. The future doesn't have to be one of pointed fingers and shouted denials. None of us knows the answer. All of us know the problem. We are all in this together. We love our sports. We love to play them and watch them. We love to argue over them. We love the inspiration and the excitement they bring. We want sports to be part of our lives forever. We know that sports will not go away, but we also know that the role they play in our lives is at risk. This is a fearful time, but it can be an exciting time.

The NHL and Gary Bettman and the NFL and Roger Goodell have an opportunity. This is the moment.

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News

BIAC Newsletter

posted by SK Brain Injury    |   October 3, 2011 10:10

Here you will find the latest edition of the Brain Injury Association of Canada's newsletter, Impact.

For more information you can visit their website at www.biac-aclc.ca

ImpactBIACNewsletterOct11.pdf (1.88 mb)

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Newsletter

Providing Support to Elderly Caregivers

posted by SK Brain Injury    |   September 29, 2011 23:36

The Comox Valley Head Injury Society (CVHIS) has a new community resource for seniors who provide care to brain injury survivors in the Comox Valley.

Funded with support from United Way Central and Northern Vancouver Island, the Seniors Caregiving Counselling Program offers free clinical counselling for seniors who provide care to brain injury and stroke survivors.

CVHIS developed this program to support the needs of the many senior caregivers in our community whose mental health and well-being has been impacted by the challenging experience of providing care to brain injury survivors. This program is particularly suited to senior caregivers experiencing depression, anxiety, stress, fatigue, anger, grief and social isolation.

The primary intended outcome of this program is to promote the mental health and well-being of seniors caregiving for brain injury survivors by offering a free counselling resource tailored to their specific caregiver needs.

• The participant must be a resident of the Comox Valley.

• The family caregiver must provide care to a brain injury survivor (includes stroke).

• The family caregiver or brain injury survivor must be 65 or older.

Individuals interested in further information can call the Comox Valley Head Injury Society at 250- 334-9225 or e-mail outreach.cvhis@gmail.com.

“Depression is one of the most common mental health problems affecting seniors today and is especially prevalent among senior caregivers," says Jeremy Coombs, executive director of the Comox Valley Head Injury Society. "Unfortunately, many seniors caring for brain injury survivors are not getting the help they need. The Senior Caregivers Counselling Program is an attempt to provide resource to support the well-being of seniors caring for brain injury survivors.”

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An Organization near Ottawa is Working Towards Building Homes for Brain Injury Survivors

posted by SK Brain Injury    |   September 29, 2011 23:31

 

An organization supporting individuals with acquired brain injury is in the process of developing a group home in Kanata south.

Pathways to Independence is fundraising to build a home for people who need guidance and care after suffering significant brain trauma.

“Some people who have suffered and acquired brain injuries lose living skills,” said Sandy Jenkyns, manager of support services for the Ottawa-area Pathways to Independence. “I would like people to understand that the folks that we support were active, employed, family-oriented, people who are very active in their communities. They were you and I until they had their acquired brain injury from whatever cause.”

Acquired brain injuries can result from a range of reasons, including brain aneurisms, lack of oxygen due to a medical situation such as a heart attack and strokes, and vehicle accidents.

The not-for-profit is looking to raise around $250,000 to help build an eight-bedroom house for people who can no longer care for themselves.

The organization held the ninth annual Pathways Golf Classic on Sept. 15 to help raise money and will be holding other fundraisers in the future, said Jenkyns.

The house will be built on a vacant lot on Bachman Terrace in Katimavik, said Jenkyns, adding she’s met the neighbours in the area and has their support.

“They were very positive. A couple of them have offered to be volunteers down the road,” she said. “I’ve found them to be remarkable people; we’ve had great reception.”

No design plans have been made to date, but Jenkyns said the organization hopes to have them finalized by the end of the month.

She said they are moving residents out of the current group home in Osgoode to the one that will be built in Kanata. The current home is an older, multi-level residence that doesn’t suit the needs of those living there, she said.

“We want to relocate the people into the community where there's lots to do and they're closer to their family members,” said Jenkyns. “A huge part of our philosophy is to give people the opportunity to be in the community of their own choice and to be involved in activities of their own choice.

“We’re really committed to a home atmosphere.”

Six residents live in the current home but Jenkyns said she’s hoping to add two more people in the new house.

“The Ministry of Health tends to place people in long-term care facilities regardless of their age. Our philosophy, if we had unlimited funds, would be to create a home for these people, similar to what they had built before,” she said. “Our hope is always we’ll help people maximize their independence.”

Pathways to Independence also offers residential options to people with developmental disabilities. The not-for-profit supports independent living, an outreach service for people with acquired brain injury and a day program.

 

Source

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News

Brainstreams.ca - September 2011 Newsletter

posted by SK Brain Injury    |   September 29, 2011 23:28

We would like to link you Brainstreams.ca newest newsletter. You can find it here.

Brainstreams.ca is an online education and social networking site for the brain injury community in B.C. and beyond - a project of the Pacific Coast Brain Injury Conference Society - supported through the BC Neurotrauma Fund via Rick Hansen Foundation.

 

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Newsletter

Letter to the Editor - Expand Program

posted by SK Brain Injury    |   September 27, 2011 23:10

Could you manage on $26 a day? What kind of life would you have if you had to live on less than $800 a month?

If you had to make the choice between your medication and food, which would you choose?

Unfortunately, such decisions are routine for many Saskatchewan people with disabilities, who live in poverty. A disability of any kind can eliminate or reduce a person's capacity to work, and for this reason people with disabilities often require financial support from government.

They struggle daily with the barriers imposed by their disability, and poverty is an added obstacle they should not need to face.

The Saskatchewan Assured Income for Disability program is operated independently of social assistance, and is responsive to the unique needs of people with disabilities. With SAID, people with disabilities do not need to reconfirm their disability every year, and they are free from the stigma of receiving welfare.

In the past few years, the government has taken huge steps to help people with disabilities. I hope this trend will continue, because there are so many people waiting to be enrolled in the program.

Those on SAID continue to wait for the program to be fully developed, and their level of income to further increase.

With a spirit of co-operation and respect, I encourage the government to expand the reach of the SAID program by enrolling a greater number of eligible recipients and to increase benefit rates for everyone who will be enrolled.

By: Judy Hannah of SACL

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News

Living with a Neurological Condition - Study

posted by SK Brain Injury    |   September 27, 2011 10:39

Dear Friends of the Brain Injury Community, 

Please see the attached letter and poster from the Living with a Neurological Condition (LINC) Study Team – Dr. Tanya Packer and Dr. Joan Versnel from Dalhousie University.

As you know, the National Population Health Study of Neurological Conditions (NPHSNC) is well underway, and some teams are looking for the NHCC membership to help with recruitment of their membership to participate in various surveys.

The Dalhousie team is looking for your help to assist in recruitment for their LINC Study. The study will focus on the impact of neurological conditions on individuals, as well as families.  This is an excellent opportunity to have your neurological condition (Brain Injury) represented in the NPHSNC. 

We invite you to forward this information to the members of your community living with a neurological condition (Brain Injury) and their families. You can simply:

  • “Copy and paste” the invitation letter into the body of an email and send the English and French posters out via email
  • Include the link in upcoming newsletters
  • Post the posters to your website 

We really want to help build a “brain” community, and invite Canadians to participate in this first ever national study of neurological conditions. Your participation, support and assistance is paramount in this effort.

Should you have any additional questions, or require further clarification, please do not hesitate to contact me.

 

Regards,

 Celina

Recruitment Flyer-French.pdf (386.08 kb)

Recruitment Flyer.pdf (342.79 kb)

Letter of Invitation.pdf (133.40 kb)

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Survey

How Aboriginal Women and their Families are impacted by Brain Injury - Survey

posted by SK Brain Injury    |   September 27, 2011 10:36

Dear Friends of the Brain Injury Community,

As a member of the NHCC Brain (Brain Injury) Community, you are receiving this invitation to participate in a brief survey for the Native Women’s Association of Canada’s Understanding from Within project. “Understanding from Within"explores how Aboriginal women, their families and communitiesare impacted by neurological conditions (brain injury).

As part of our work, we are gathering information about existing neurological health services for Aboriginal peoples. This short survey is aimed at identifying services or programs specifically for Aboriginal service users – including First Nations, Métis and Inuit peoples who are experiencing (or a caregiver of someone experiencing) any of the following conditions:

  • Dementia - Including Wernicke Korsakoff syndrome, HIV dementia, and dementia subsequent to stroke or brain injury
  • Alzheimer’s disease
  • Cerebral Palsy
  • ALS (Lou Gehrig’s disease)
  • Multiple Sclerosis
  • Huntington’s Disease
  • Parkinson’s Disease
  • Spina Bifida
  • Tourette Syndrome
  • Brain tumours
  • Neurotrauma (acquired brain injury (ABI),spinal cord injuries)
  • Epilepsy

This project is part of the National Population Health Study of Neurological Conditions, a collaboration between the Neurological Health Charities of Canada (Brain Injury Association of Canada) and the Public Health Agency of Canada. The study is being conducted by the Native Women’s Association of Canada in association with Dr. Carrie Bourassa, First Nations University of Canada.

The survey will take approximately 15-30 minutes to complete. You may choose to complete the survey online at https://www.surveymonkey.com/s/D5SXMVH. If you prefer to receive a paper copy of the survey or to complete the survey by telephone, we are happy to work with you to make such arrangements.  

If you are unable to access this link, or should you have any questions concerning the Understanding from Within study, please contact the Research Coordinator, Melissa Blind at the Native Women’s Association of Canada by telephone (613-565-3026) or email (mblind@nwac.ca).

Thank you for your participation.

Sincerely,

Melissa

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Life is Hard on Social Assistance

posted by SK Brain Injury    |   September 27, 2011 10:28

SBIA and SACL are both members of the Disability Income Support Coalition (DISC) which is committed to advocating for a respectful, dignified and adequate income support system for all people with disabilities in Saskatchewan.

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I came into work a couple of years ago for a midnight shift, and the colleague I was replacing dryly said that among our residents that night was a man who had been eviscerated and just got out of the hospital.

The resident — I’ll call him John — casually told me that someone had broken into his apartment and was looking to steal some organs. I asked him, “Do you owe someone money or drugs?”

John immediately panicked and said, “How do you know? Who told you?”

Mine was a lucky guess. I don’t know what is and what isn’t in his life story (the one about organ theft definitely wasn’t true). According to him, he had been on his own since he was 11 and started using hard drugs when he was 13.

He had significant mental health problems, which could have been a result of the drug abuse. He suffered from fetal alcohol spectrum disorder, or FASD, and schizophrenia. I don’t know if it was the FASD or the drug use that stunted his emotional or cognitive development, but I always felt John was less capable and less mature than my son, who was eight years old at the time.

There is a road to recovery available. John later took rehabilitation for the drug issues. He was on medication for the mental health problems. I am sure he could get counselling for the psychological issues, but he still will remain an eight-year-old inside, unemployable and with serious health concerns.

So what do we do with men and women who are like him? They are left to fend for themselves in some jurisdictions, but in Saskatchewan we have a safety net in terms of health care and the Ministry of Social Services.

Most of us are familiar with health care, but life on social assistance for a single person is tough. It starts with $459 a month for rent and, if you are disabled, you can qualify for the Disability Rental Housing Supplement that provides another $262 toward rent. The total $721 is not that bad — until you try to find a suite for that price.

The accommodation also has to be close to supports, so even if you find a suitable apartment, you may not qualify. Many find themselves paying a portion of their rent from the $255 they get to live on. Very quickly that living allowance becomes $150 to make it through the month.

It’s been 15 years since I lived alone, and even then $100 didn’t get me that much in groceries. Even living on a nutritionally challenged diet of Kraft Dinner, Pizza Pops, Kraft Dinner Spirals, and Three Cheese Kraft Dinner I was spending more than that on food.

The next option is the Saskatoon Food Bank. It just completed its Food Basket Challenge, which invited noted Saskatoon residents to live on a typical basket of food for a week. The participants’ comments were all interesting, but I noted how many struggled with the discipline of having to live on the amount of food that was given out.

Of course, in a oneweek challenge, a lack of discipline means that you just cheated yourself. If they were in that situation permanently, it means that they or their children go without food later in the week. For those on social assistance, it’s week after month of rationing, going hungry, walking down to the Friendship Inn, stopping by the Bridge on 20th, and heading to the Salvation Army looking for enough food to make it.

On top of that, the money you get is supposed to cover laundry, clothes and other essentials. As Sharon Brown, one of the Salvation Army’s budget management workers told me, “You can make it if you make no mistakes.”

That’s easier said than done, even in my own life. Recent studies have shown that most of us have a finite amount of self-discipline. To use most of that on just obtaining and rationing food changes the rest of one’s life.

I know that it’s hard to set social assistance rates. Too high and it provides a disincentive to work and people flood in from all over. Yet you make it too low, and even providing food and basic needs become a struggle.

Over the years I have listened to politicians talk about indexing social assistance to inflation. Not a bad idea, but here is mine. In the process of reviewing rates, have the minister of Social Services live on the money he or she judges to be appropriate. If the minister can’t do it and function, why expect others to do it?

 If it helps, I’ll do it as well. Together we’ll find out how hard it is to live on social assistance rates.

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