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Headway Homes Winding Down But Its Legacy Continues

It is with much sadness that the Board of Directors of Headway Homes (Niagara) Inc. announced that it ceased operations as a charitable organization effective December 31, 2010. The board decided to transfer all the remaining funds of Headway Homes to create an endowment fund within the Niagara Community Foundation.  The Headway Homes Fund will annually distribute funds to needy brain-injured individuals and their families through the Ontario Brain Injury Association (OBIA)’s Thorold office.

Headway Homes was co-founded by Jean Vandenbelt and Dianne Henderson in 1995 with the goal of establishing a community-based housing facility for persons with acquired brain injury.  Since 1997 a group of concerned Pelham citizens who comprised the Board of Directors spearheaded presentations and proposals to the Ministry of Health and Long Term Care and to all levels of government and organized many fundraising events in their mission to establish the first Headway Home in Niagara.

The Ministry of Health and Long term Care did not support nor approve the plans for the first Headway Home in spite of the very strong support from local politicians and citizens in Niagara. For this reason, the Board of Directors of Headway Homes decided to cease operations and to no longer work towards the goal of establishing a home for
individuals living with profound brain-injury.

The Board extends sincere and heartfelt thanks to all the Niagara organizations and residents who have so generously supported our cause over the years. We are very grateful to all the wonderful people who have supported us for many years.

For further information on Headway Homes and the criteria for grant acquisition as well as an application form, please click on Ontario Brain Injury Association or see our page for the Headway Homes Fund.

The Board sincerely regrets having to cease operations but is gratified to realize that the funds which were donated to Headway Homes will in fact be utilized to help present and future victims of acquired brain injury in their quests to live comfortably and in dignity. We will be maintaining the website and updating it from time to time with news of interest to families of severely injured individuals — please accept our apologies if we can’t get back to everyone who may have questions!

 

Posted in Main Page, Making Headway.

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New Hope for those living with Severe Brain Injury

An interesting article was posted on the Brain and SpinalCord website (www.brainandspinalcord.org ) discussing a new study that will run for three years and attempt to document the impact of the medication zolpidem on those who present as minimally responsive after a severe brain injury.

The research being completed using either electrical stimulation of the brain as has been previously referenced on our site or medications as is noted in the article noted below are indeed sources of hope.  If you are aware of other studies being completed,  we invite you to share them here.

Click here to read the article.

 

Posted in Main Page.


Burnout Prevention: Don’t Go It Alone

We received a wonderful no-cost offer from Paula Solomon, M.S. that we wanted to share with you…

Paula is a psychotherapist and coach with a special interest in helping family caregivers of individuals with chronic health needs to achieve a better balance in their own life and better self-care.

She is now offering a no-cost telephone coaching group for these family caregivers.

Here’s her offer:

Do you know colleagues or clients who are struggling with trying to balance their care giving for
a parent or spouse or chronically ill child with responsibilities with
caring other family members, self-care, and/or career demands ? It is a
perfect tsunami for burnout!

Please let them know I am offering a free, monthly telephone-based group for caregivers where we will focus on stress management, values and priorities, and finding our individualized ways to balance care giving with self-care to avoid burnout–and thus be able to be a better caregiver for the long run.

More information is on my web site: www.theseasonsofyourlife.com.

 

What I love about this offer is how practical it is for family caregivers.

  • No having to travel somewhere else to get to the group
  • No need to have “enough” people wherever you live – your group members can come from all over the world!
  • It’s not just about “brain injury” — you can get ideas and strategies from others who have similar, but different perspectives and experiences.
  • It gives you a regular time to “get away” wherever you can have a phone for time with a coach and group members who understand where you’re coming from.
  • If you’re in Canada – you’re calling a U.S. number so if you
    use a long-distance code, the whole session will cost you no more than
    $1 (I use 10.10.620, but that are others, yes?) If you’re in the U.S., you probably have a long-distance plan that makes it virtually free!

If you attend Paula’s group, please come back and leave a comment about how useful it was, by clicking on “comment”, typing your thoughts, and clicking on “post”.

If you are looking for something else, share those thoughts too please!

Thanks!

Posted in Caregivers Sharing, Main Page.


Press Release from Ontario Brain Injury Association

Nothing minor about brain injury

New study shows thousands of Ontarians suffer brain injuries each year

Death of Natasha Richardson highlights how precious, fragile, the brain is


(Toronto) March 19, 2009 – The death of actress Natasha Richardson has thrown a spotlight on an often invisible injury – brain trauma.

“This tragic loss is a terrible reminder to all of us that a brain injury, even a seemingly minor one, can have devastating consequences,” says John Kumpf of the Ontario Alliance for Action on Brain Injury.

Traumatic brain injury is a leading cause of death and disability world wide. Traumatic brain injury is more common than breast cancer, HIV AIDS, multiple sclerosis, and spinal cord injury combined. The leading causes of brain injury are falls, being struck by or against an object, or being in a motor vehicle crash.

Media reports indicate that Ms. Richardson took what seemed like a minor fall during a skiing lesson on a beginner slope in Mont Tremblant, Quebec. “As people watched this sad story unfold, they couldn’t comprehend how a seemingly minor injury could have such tragic results,” Kumpf noted. “But as people who work with brain injury survivors every day, we know that even what appears to be a harmless fall can cause lifelong impairments or death.”

A new research report by Dr. Angela Colantonio for the Ontario Neurotrauma Foundation shows that there were 17,482 emergency room visits and/or hospitalizations for traumatic brain injury in Ontario in 2006. In addition, there were over 19,000 hospitalizations and/or emergency room visits due to brain injury from non-traumatic causes.Non-traumatic brain injuries can include vascular problems including aneurysm and malformations, brain tumors, infections such as meningitis, loss of oxygen and other medical complications.

Approximately 3,600 hospitalizations ended in death.

“These are new and staggering numbers – and we know they’re not even capturing the whole picture,” says Dr. Angela Colantonio, the lead investigator for the study. She explains that the study does not include injured people seen by family physicians without a visit to hospital, or people who died before receiving hospital care.

“Research also indicates data from administrative data sources used in our study may not record all brain injuries” says Dr. Colantonio.

While a vast majority of Ontarians will survive a brain injury, they often lose their lives in other ways.

“You can lose the person you used to be: Your memory, your identity, your job, your friends and loved ones – all because of a brain injury,” says Kumpf.

ABI often results in a complex combination of cognitive, psychosocial, behavioral and physical problems. Even people who sustain “mild” injuries can have long term consequences.

And yet, ABI survivors are largely invisible to the general public.

“Ontario’s health care system does a great job in the immediate aftermath of injury. But once they’re released from hospitals and rehab facilities, ABI survivors are often left on their own,” says Kumpf. “But with no comprehensive long term system in place, many ABI survivors fall through the cracks.”

This press release from the Ontario Brain Injury Association and the Ontario Alliance for Action on Brain Injury highlights points that many readers of this BLOG understand.  There is no central registration for tracking of brain injury nor the extensive network of community based options that could support the vast range of needs after an acquired brain injury.

If the tragic passing of Natasha Richardson  has raised your interest level in brain injury, contact us to learn more about the Headway Homes initiative to provide support to those living with the effects of severe brain injury.

 

Posted in Main Page.


So Why are You Reading This Blog?

That's a real question….why are you interested in this blog?

Do you know someone who has a profoundly severe brain injury? A family member? A friend? A patient where you work?

If you have this kind of personal connection, then we need your help!

The Board of Directors of Headway Homes has asked hscvision consultants Gary Sandor and Liz Mullan to search out and connect with individuals and families across Ontario to provide us with a “needs assessment”.
image
Specifically, this means we want to hear from people who
(1) might be interested in living in the kind of home envisioned by Headway Homes and
(2) have ideas about what is needed or what's been missing from more conventional services to these folks.

If you know someone who fits either of these categories, please connect them with Gary or Liz right away.

If you are interested in participating yourself in this assessment, please contact Gary and/or Liz as quickly as possible. It's only a couple more weeks until their report to the Board is to be delivered — don't miss having your say!!
 

 

Gary
Sandor

Liz
Mullan

By
E-Mail

gsandor@sympatico.ca

liz.mullan@utoronto.ca

By
Phone

416-784-4442

416-322-9064

By
Fax

416-780-1911

416-322-0772


Thanks again for your interest and support! We need your help to get this right!

Posted in Main Page, Making Headway.


Headway Homes’ 10th Annual General Meeting

Thanks are extended to everyone who was able to join the Board of Directors of Headway Homes to celebrate our 10th Annual General Meeting which was held on 29 October 2008.

Special appreciation is extended to Dr. Karen Shue for providing an overview of some of the innovations that are happening in the assessment and rehabilitation of individuals who are minimally responsive after severe brain injury.  Dr. Shue provided a pictorial overview of what is being developed as well as screening a video clip featuring the work of Dr. Edwin Cooper and the impact his work had on the life of Candice Ivey.  Regular readers of this blog will know that articles and links to Dr. Cooper’s work have been featured previously.  New readers will want to scroll down through previous postings on this site to find the work of Dr. Cooper.  This research provides hope and promise for rehabilitation techniques that may clearly impact the rehabilitation and quality of life for those who are minimally responsive after severe brain injury.

We were also pleased to introduce our audience to Gary Sandor and Liz Mullen, the consultants that Headway Homes have contracted with to conduct a provincial wide needs assessment.  Gary provided an overview of the scope of the project and he and Liz both made themselves available to link with the family members in attendance.  The Board is eagerly awaiting our first progress report on the 10th of December 2008 and we will share any trends here.

Long standing Board Member Foster Zanutto, the current Vice Chair, provided an overview of the roots of the Headway Homes initiative as well as setting the path for our work for the future.

Posted in Main Page.


Our Next Step: Connecting with potential Headway Homes candidates

If you are reading this, we would like to ask for your help.  The Board of Directors of Headway Homes is currently looking for a consultant to assist  in establishing the number and current living location of individuals who would be appropriate candidates for our pilot project.

We have included an attachment of our project with this entry and would appreciate your assistance in forwarding the attachment or the link to our site to anyone who you feel would be able to assist us in moving forward.

Thanks in advance for your assistance.


Posted in Main Page.


Back from the Dead: An Approach to Improving Recovery from Coma

Dr. Edwin Cooper from North Carolina has been involved in some interesting and promising research indeed. He has developed a treatment which seems to be able to increase alertness and levels of consciousness after severe brain injury resulting in coma.

Dr. Cooper found us after reading our post on using
Electrical Stimulation to Increase Awareness and we, of course, immediately asked him to share more about this exciting technique.

He graciously provided an article which I have “blogified” below. The original article he wrote for us is attached in case you are as excited as we are and want to read more. Any “errors in translation”, oversimplifications, or inappropriate informalities are my own. I’ve also included some links to more stories about this technique at the end of the article –


But let’s let Dr. Cooper tell you about his research….

RIGHT MEDIAN NERVE STIMULATION FOR TREATMENT OF COMA STATES

Edwin Cooper, MD & Bryan Cooper, MD North Carolina, USA © March 2008
A Gateway to Consciousness

Turn your right hand so you can see your palm. At your wrist, right there in the middle is the general location of your right median nerve. Gaze in wonder there for just a second….


Why? Because
the median nerve is a portal — a gateway — to the brain. Electrically stimulating it can stimulate and help arouse the central nervous system for persons with reduced levels of consciousness after brain injury.

How? By
increasing blood flow to the brain and raising levels of dopamine, a neurotransmitter associated with information flow between brain areas. It also seems to increase certain kinds of brainwave activity that are associated with learning and the connecting of information between brain areas.

For Whom? Nerve stimulation is not really all that new. It has been used in the U.S. for acute coma after traumatic brain injury for 15 years and neurosurgeons in Japan have been using electrical stimulation even longer — implanting electrodes on the spinal cord at the neck level for individuals experiencing long-term levels of minimal awareness.


But
the use of right median nerve electrical stimulation (whew — let’s just use RMNS) for patients in coma for longer periods(subacute and chronic) is relatively new. Using electrical stimulation to treat anoxic brain injury (i.e., damage from lack of oxygen) as well as traumatic brain injury is evolving and it’s still not clear how useful RMNS will be for those individuals.

From the Wrist to the Brain?

We’re going to take a look at some of the stories of people with whom RMNS has been used, but let’s pause for a minute and see
why this technique may be able to have some of the amazing results it has achieved. (If you absolutely can’t wait, go read this article from Wired magazine about a young woman named Candice and then come back….)

Back in the late 1980s, in a research project through Duke University in North Carolina, individuals living with quadriplegia were able to trigger their paralyzed forearm and hand muscles to move through using voice-activated surface electrical stimulation. Imagine — they could use their voice to initiate an electrical pulse that produced movement in their arm and hand muscles.

But this technique didn’t only allow voluntary hand opening and closing — an unexpected result was that there was improvement in the strength of the muscles of the opposite, unstimulated, arm. The only way this can happen is by the
electrical signal actually traveling through the brain – from one arm to the brain to the other arm.

Why is this so exciting? Because it means that we can try to impact dysfunctional brain areas “indirectly” through the peripheral nerves. We don’t necessarily need to directly influence the brain to make a difference in functioning. And this observation led to the development of RMNS as a technique for arousal from coma.

RMNS coma-stimulation projects were started at East Carolina University and the University of Virginia in the early 1990s. The goal was to try to speed awakening from coma and enhance involvement in active rehabilitation. The technique uses small electrical neuromuscular stimulators (like those you may have seen used in rehabilitation if you’ve ever had TENS used for pain reduction) connected to a plastic cuff to deliver electrical stimulation to the right median nerve. The stimulation is given eight hours a day for two to three weeks for persons in deep coma starting about one week post injury.

So far, observations in the U.S. and Japan of individuals in acute and long-term coma states, show
progressive improvements after several weeks of electrical stimulation. These seem to follow a pattern of increased eye coordination followed by improvements in facial control, peripheral motor (arms and legs) movement, and speech.

The Earlier, the Better

In the 1990s, researchers at the University of Virginia and East Carolina University in North Carolina did a series of pilot studies. RMNS was used with about 36 people with severe closed head injury. Before considering the results, we need to know that when individuals have a Glasgow Coma Scale score of 4-5 and show a certain kind of physical position associated with severe brain injury (called “decerebrate” or “decorticate” posturing), few of them can be expected to make good recoveries.

With RMNS, the time for awakening from coma was typically twice as fast as in the non-stimulated group. And gradual recovery to a functional level was approximately twice as frequent as in the group who did not receive RMNS.

What Can We Really Expect?: Some Real Life Tales
Candice was an active and vivacious 16-year-old high school student with a love of dancing.

In 1994, she was involved in a motor vehicle crash, resulting in a severe closed head injury. She had a number of injuries to her head and brain: including a skull fracture, leaking cerebrospinal fluid from her brain, multiple “bruises” within her brain, and a fracture of the bones on the left side of her face. She was breathing only with assistance. She had the “decerebrate posturing” and a GCS score of 4. She was not expected to recover in any meaningful. functional, way.

Candice was briefly started with RMNS stimulation, but the fluid pressures in her brain continued to rise. With her extremely poor prognosis, she was expected to die. The breathing tube was removed, less than two weeks after her injury.

Unexpectedly, she was able to keep breathing on her own and her parents decided to re-start the RMNS.
Within one week of restarting the electrical RMNS neuro-stimulation, she showed some semi-purposeful movements of her right arm and leg and scored 7 on the GCS. After a total of two weeks of stimulation, she was out of coma.

One month after the injury, Candice followed simple commands. At two months, she could walk with assistance and could read aloud. Two years later, Candice talked and walked well. She resumed dancing and driving and graduated from college. Now over a dozen years after awakening from coma, she
works full time in Recreation Therapy at a retirement home.

You can hear and read more about Candice in the links at the end of this article.


JP is a good example of the advantage of starting RMNS in the first month of coma.

JP was a 16-year-old girl in Southern California whose car was T-boned (side impact) by a truck in June 2002. At the scene she was having trouble breathing and was unresponsive, having a GCS of 3-4.

The CT scan showed bleeding deep in her brain and extensive “tearing” of tissues in her left fronto-temporal lobe and corpus callosum. Like Candice, she also had elevated pressure on her brain caused by the fluid inside and around it. JP remained in coma and was decerebrate/decorticate at four weeks post injury. She received median nerve electrical stimulation (six hours per day on both sides instead of just the right) starting 5 weeks after her injury. She stayed in the ICU for her entire two-month hospitalization.


Two weeks after the electrical stimulation was started, although she was still left hemiplegic (unable to move her left side), she was now able to follow commands. She was transferred to a rehabilitation unit 8 weeks after she was injured.

JP was discharged from a residential facility to home to the care of her family in early March of 2003, eight and a half months post brain injury. She continued to receive outpatient therapies.


In the spring of 2003 (less than one year after her injury), she graduated from high school on schedule with her class. In the fall of 2003, she started college by taking three courses and made B grades (ed: translation for Canadians – that means generally 80-90%). She continues to do well years later.

What Can We Learn from This Approach?

Regardless of what causes the coma or reduced level of awareness,
RMNS electrical stimulation may be able to help “kick-start” the central nervous system functions. Even after using RMNS, we still need the rehabilitation efforts and family input to retrain the abilities of the injured brain and motivate the person.

And we can’t predict the final neurological outcome.


But the
partnership of neurosurgical and medical treatments performed quickly after the severe brain injury with RMNS of the comatose person in the early weeks post injury should give better results than traditional methods of watchful waiting.

____________________________________________________

My comments:
Dr. Cooper and his son have given us a very low-key overview of the potential of RMNS. It is amazing that a young woman could have an injury as severe as this, be in an ICU for 2 months, and yet less than a year later graduate from high school with her class and do well in university-level classes, without skipping a beat.

What don’t we know about RMNS? The question that probably is the Big One for most of our readers: Is it useful for helping individuals injured months or years previously?

Dr. Cooper shared with me that
the ideal time for RMNS is at the end of the 1st or 2nd week of coma. But even months later it can help, although he’s really not sure about its use with individuals after a year or more of living at a minimally responsive level of recovery.

For more:
Dr. Cooper’s original article:
Wired magazine’s article about Candice, Dr. Cooper, and the use of RMNS: Back from the Dead

Or go to
Dr. Cooper’s website to watch two videos: one about Candice originally presented on the Discovery Channel in Canada and on the National Geographic channel in the U.S.; the other is a demonstration of the use of RMNS with several individuals. Makes for very exciting viewing…..and well worth your time!

Posted in Main Page, Professionals Sharing, Rehabilitation.

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Trivia Pub Night Lives Again!

Each year we answer many calls asking when we are running our ever popular Trivia Pub Night.
So for all of you returning Trivia Buffs and for those who want to learn what the fun is all about — we are doing it again on Friday April 25th 2008  from 7:00 to 10:00 pm at the Fonthill Royal Canadian Legion.  This is a very popular event with some teams returning year after year.  Come give them a new challenge!

For those of you who haven’t yet attended our Trivia Pub Night, we quizzed our Trivia Night Hostess, Jean Vandenbelt on what it’s all about….

HH Blog: Jean, Headway Homes has run this successful Trivia pub Night for years now — what keeps people coming?
Jean: It seems that some people are just hooked on Trivia!  Those have come tell us that it’s a very fun evening and one
of the most enjoyable events in the area.  And it’s a bonus that it’s for a very good cause — Headway Homes!
Actually, I get asked year-round by people who have been to one of our events about when our next one will be.  Many of the same people keep returning year after year, so we must be doing something right!

HH Blog: It seems so! So — What do they get out of the evening?

Jean: The sheer fun of Trivia, of course! ….  And lots and lots of prizes. We give grand prizes for the 1st, 2nd, and 3rd place winning teams — every team member at those tables receives a prize.  door prizes are drawn throughout the evening.  We have free coffee and a cash bar.  We serve Pizza mid-evening (got to feed those brain cells!!) and there are nibbles on the tables to keep  players going.

HH Blog: The food and prizes sounds good — But what kinds of Trivia do I need to know?

Jean: Rick Leney, our Quiz Master creates questions from a wide range of subjects (e.g., History, current and past events, sports, movies etc. etc., etc.) We aim to make sure everyone gets a chance to  show off their bits of  trivial knowledge (and earn their pizza ).

HH Blog: Ok, I’m sold — it sounds like fun AND I’ll get fed. Bonus! But I don’t know any other trivia buffs….Do we need to come as a group or can we show up alone?

Jean: We play as tables or teams of 4 – 8 people. If you can create a team, it’s best to call ahead for tickets to make sure you have a table.  If you don’t have a team — don’t let that stop you.  Individual Trivia buffs are most welcome and our Headway Homes volunteers will be delighted to make introductions and help you join into the fun.

People are surprised and delighted just how much trivia their brain’s have collected over the years — so hit on your friends to support you and Headway Homes and come on out! (Besides, there’s the prizes and the pizza!!)

So…come on out and join Jean and other representatives of Headway Homes and be led into fame and fortune (or at least a lot of fun) by our Quizmaster Rick Leney!

Tickets are still just $15.00 per person.  To join the fun, book your ticket(s) with Jean at 905-732-3267.

Posted in Fundraising Events, Main Page.


Electrical Stimulation to Increase Awareness

Have you ever heard about TENS for use with individuals in coma or post-acute states of minimal responsiveness?

Well, you need to.

TENS — that's transcutaneous nerve stimulation — is basically a repetitive electrical pulse delivered through the skin. Most of the time it's used for pain relief and it works by providing a bit of a counter-irritant to reduce the brain's sensitivity (temporarily) to chronic pain. (Imagine tapping an itchy place where you have a bug bite, for example. If you do that for a bit, you quit feeling the itch.)

But TENS has also been used for almost 15 years to try to increase the awareness of individuals who are in coma. But this has always been with individuals who are in acute coma — i.e., not those who have been in an inconsistently responsive state for extended periods of time.

But here is a study from 2005 that describes a new use for TENS in brain injury. The authors of this study, Dr's Cooper and Scherder, used TENS with individuals who have been in a state of low-level consciousness for extended periods of time.

And what's interesting is that they used the TENS on the median nerve. For those if you who aren't anatomy experts , that's the nerve that runs on the inside of your wrist – where you may get carpal tunnel pain if you type too much. TENS delivered there still seems to increase brain blood flow and results in higher levels of awareness.

There's so much that can be tried, so much research going on, yet most family members never hear about these things from their physicians — why is that?

Here's the official abstract from the Journal of Neuropsychological Rehabilitation:

Electrical treatment of reduced consciousness: experience with coma and Alzheimer's disease. Cooper EB, Scherder EJ, Cooper JB
Neuropsychol Rehabil. 2005 Jul-Sep ; 15(3-4): 389-405

The right median nerve can be stimulated electrically to help arouse the central nervous system for persons with reduced levels of consciousness. The mechanisms of central action include increased cerebral blood flow and raised levels of dopamine. There is 11 years of experience in the USA of using nerve stimulation for acute coma after traumatic brain injury. There is a much longer period of experience by neurosurgeons in Japan with implanted electrodes on the cervical spinal cord for persons in the persistent vegetative state (PVS). But the use of right median nerve electrical stimulation (RMNS) for patients in the subacute and chronic phases of coma is relatively new. Surface electrical stimulation to treat anoxic brain injury as well as traumatic brain injury is evolving. Novel applications of electrical stimulation in Amsterdam have produced cognitive behavioural effects in persons with early and mid-stage Alzheimer's disease employing transcutaneous electrical nerve stimulation (TENS). Improvements in short-term memory and speech fluency have also been noted. Regardless of the aetiology of the coma or reduced level of awareness, electrical stimulation may serve as a catalyst to enhance central nervous system functions. It remains for the standard treatments and modalities to retrain the injured brain emerging from reduced levels of consciousness.

Posted in 2005 news, Awareness Studies, Main Page, Rehabilitation.

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