All in their head: Traumatic brain injuries often go undiagnosed, especially on the streets

By Kate Cox, Contributing Writer

Readers note: This article is the first part in an investigative series by Street Roots on Traumatic Brain Injury and homelessness. Pick up the June 10, edition for the next in-depth article on the topic. Read Part II here.

You might say Nick Patton was born to fish.

Literally born on a boat, Nick spent his earliest years living in orphanages along the Alaskan coastline.  He ran away at the age of eight and quickly learned how to take care of himself and to rely on others — traveling in groups around the Pacific Northwest, picking apples and doing day labor.

He was only 11 years old when he started working the boats and canneries of the Alaskan fishing industry. With a community of other fisherman, Nick followed the seasonal work, living on boats and in tents, even during the cold Anchorage winters.

It all ended with the smack of a crowbar.Nick was 32 and alone on the night he was attacked, and there were no witnesses. With no memory of the assault, he has few clues to the story except for the scar on his forehead where the crowbar cracked his skull.

“First it hurt the front of my brain, because that’s where they hit me.  Then, the force caused my brain to hit the back of my skull, back here.  Then, there was also some swelling, so that caused more damage – way down here in my brain stem.”

Nick woke up in an Anchorage hospital, but nothing was ever the same. His gregarious nature was now drowned out by voices and hallucinations, and reality was lost in the din.

“I couldn’t deal with society anymore.  I didn’t know what was real or who to trust.  I ended up cutting all ties to the world.”

Alcohol and drugs became his only way of coping. “If I stayed high I could deal with it.” For the first time in his life, Nick found himself unable to work and spent the next several years selling heroin, panhandling, and living on the streets.

Unfortunately, Nick’s story isn’t unique.

News about traumatic brain injury, or TBI, has increasingly come to light in recent months, from a spate of sports-related injuries particularly among football players, to the blast injuries of veterans returning from Afghanistan and Iraq.  Although, homelessness can be the ultimate tragic consequence of a brain injury, the medical world is only beginning to connect the dots between TBI and homelessness.

According to the National Healthcare for the Homeless Council, at least half of all homeless individuals have experienced at least one head injury in their lifetime.

“Brain injury in the homeless community is a very common thing that we’re just starting to learn about,” says Dr. Barb Wismer, a practicing physician who serves on the board of the Council. Few formal studies have been done, but those few are sobering.

In one recent study of 904 homeless men and women in Toronto, Ontario, 53 percent reported some type of traumatic brain injury.  Studies in Milwaukie, Wisconsin and Boston, Massachusetts offer similar statistics of 48 and 67 percent.

The Toronto study found that for those who had experienced a head injury, 70 percent had suffered the injury prior to becoming homeless. And although there is no clear cause and effect, the results suggest that TBI could be at least one contributor to some individuals’ homelessness.

That shouldn’t be so surprising, as the long-term effects of a brain injury can be debilitating. Symptoms vary widely. Some are as dramatic as Nick’s hallucinations. Others are much more subtle. Sometimes described as an “invisible disability,” brain injury often causes problems with memory, concentration and thinking, as well as the ability to regulate emotion and behavior.

As a result, brain injury survivors often have a hard time doing the work they did before their injuries.  Family and social relationships suffer, straining the most immediate safety net before homelessness.

The same symptoms can also create barriers for those individuals once they are on the streets.  Navigating shelter systems, attending to basic health and hygiene, and accessing services can be overwhelming and difficult. Controlling anger can be a daily struggle.

And once on the streets, the risk of brain injury continues.  Steve Hill suffered head injuries throughout his adolescence and adulthood, from sports injuries to snow boarding to fight clubs.  He describes each one as taking him down another notch.  Even small injuries caused intense reactions including vomiting and confusion. “You’re more edgy when you’re homeless,” Hill said. “And you’re closer to violence when you’re on the streets.”

One of TBI’s biggest dangers is that it often goes unrecognized. People with TBI often don’t connect their symptoms with previous head injuries, and many health care providers, mental health workers, and case managers don’t either.

Some brain injury survivors have a hard time remembering appointments, following instructions or taking medications.  They may have a hard time organizing their thoughts, finding the right words, or picking up on social cues. As a consequence, these clients might be labeled as disinterested, rude, or non-compliant.

Or they may be misdiagnosed. Symptoms of TBI can also look a lot like major mental illness, emotional trauma, or drug and alcohol abuse. And these conditions often co-exist and exacerbate one another. Distinguishing between them can be difficult.

This was the case for Nick Patton.

“They thought I had schizophrenia, even though the symptoms didn’t start till after the injury.  And that was when I was 32.” (Much later than the typical onset of schizophrenia.)

His doctors prescribed heavy antipsychotic medications to control his hallucinations, but that left him so sedated he couldn’t function.  And it didn’t get to the root of the Nick’s problem: small seizures caused by the brain injury, left completely undiagnosed.

According to Dr. Wismer, Nick’s case is a prime example of why it’s important to identify TBI in an individual who is homeless.  Treatment for TBI is often different from traditional mental illness, including differences in medications.  Some psychiatric medications have little positive effect on an individual with TBI, yet can produce very harmful side effects.

George Dennison knows more about traumatic brain injury than most people I know.  When I tell him I’m doing a story on TBI and homelessness, he says, “Oh good!  Because it’s rampant out there!”  He goes on to tell me about his own brain injury.

“See this water cooler?  This is like brain reserve.  If you’re way up here at the top, you’ve got a full tank.  But I had the genetic predisposition for bipolar disorder, so that means I start off a little lower – about here.  Then I go for years with it undiagnosed, so that brings me down some more.  Then I smash my head into a car windshield.  That one – that brings me down to here.”  George’s hand is about halfway down the tank.

George wants to be clear.  It’s not just the TBI.  It has all taken a toll.  “But TBI, mental illness, substance abuse, PTSD – they all go together like peanut butter and jelly.”

Because of its high prevalence, the National Healthcare for the Homeless Coalition recommends that homeless individuals be routinely screened for TBI during health appointments and in other service settings. For a comprehensive, standardized screen, the coalition recommends a web-based tool called the Brain Injury Screening Questionnaire.  Although it only takes four minutes for the questionnaire to rule out brain injury, confirming a TBI takes about 20 minutes.

This isn’t a standard practice in Portland where busy clinics are filled with patients at risk for a whole host of health problems.

“The system isn’t set up to support a really thoughtful and complete history of complex individuals,” explains Rachel Solotaroff, Director of Old Town Clinic. Physicians have a limited amount of time and need to address each client’s most pressing health issues.  According to Solotaroff, clinicians end up using a “clinical reasoning process” to determine what type of screening might be most important for a particular client.  TBI rarely makes it to the top of the list.

But given the high correlation between homelessness and brain injury, some advocates think it deserves more attention.

“We have to find a way to identify brain injury on the streets,” says Pat Murray, the Executive Director of Portland’s Brain Injury Resource Community (BISC). “When we understand that this is a physical injury, we start to look at people differently. We might need to work with them a little differently.  And there may be ways to help.”

According to Murray, identifying brain injury could lead to more appropriate treatment, as well as better access to benefits and services.

Because the effects of brain injury can be disabling, some TBI survivors are eligible for Social Security disability benefits. For Nick Patton, it was a turning point in his recovery. But getting there wasn’t easy.

“Without help, I would’ve walked away. I had given up on it three times already.  It would be hard for a normal person.  But they make it so hard that a person who really, really needs SSI can’t do it unless they have an advocate.”

Luckily, Nick found one: Central City Concern’s BEST program, a project that helps homeless men and women through the long and complicated disability claims process.  The program provides assistance with every step and pays for the expensive testing that’s often required.  According to Kascadare Causeya, BEST’s program manager, more than half of BEST’s clients have had a TBI in their lifetime.

“I couldn’t think well enough, so they helped me fill out the paperwork,” Nick explains.  “They knew what doctors to send me to and got my medical records sent from Alaska.  I couldn’t remember the name of the hospital where I had my surgery, so they sent letters to every hospital in Anchorage.”

They also stuck with Nick through two denials and appeals.  According to Mellani Calvin, Nick’s advocate at BEST, “the state’s disability reviewers were blaming his mental health disorder on his prior drug use. They saw him as just a drug addict who didn’t really need those (psychiatric) meds.”  After four-and-a-half years, Nick finally won the claim.

The medical benefits started first, which gave Nick access to new doctors.  And when the monthly cash benefits kicked in, he was able to afford the co-pay to see a new doctor – one who got to the root of Nick’s hallucinations.  Measurements of electrical activity in his brain confirmed that Nick was having small seizures – a direct result of his brain injury.  Now, finally, an anti-seizure medication is helping to control the voices and hallucinations.  The medication has been a critical piece of Nick’s recovery.

Brain injury comes in all shapes and sizes and so does recovery.  A lot depends on the location and extent of the damage.  Mild TBIs may take just a short time to heal completely, while a severe injury may heal very slowly or cause permanent damage.  In most cases, the underlying idea is the same – to rest the brain as much as possible while it takes time to heal.

If you suffer a brain injury, you’ll probably be advised to get plenty of sleep, limit sensory stimulation, and eliminate stressors. You’ll be encouraged to drink plenty of water, eat well, and avoid anything that might cause another injury – all relatively minor adjustments for most people. But for people without a home, they are virtually impossible.

“If you’re homeless you’re always living in this ultra-aware state.  There’s no way to relax,” explains Brad Taylor, an outreach worker with JOIN.  In the world of homelessness there is no place to rest or to get a full night’s sleep.  And waking time is taxing.

Which is why Dr. Wismer sees housing as the first real step in recovery for many who are homeless – specifically, permanent supportive housing with nurses, case managers, and social workers.  For some brain injury survivors, a new permanent supportive housing facility in Portland may come close.

The Housing Authority of Portland (HAP) is preparing to open the Bud Clark Commons — Portland’s new access center that will also provide 130 units of permanent supportive housing.  For the first time in Portland, these units won’t be offered on a first-come, first-served basis.  Instead, the Commons will offer housing to those they consider the most vulnerable.  And that will include individuals who experience memory attention, organization, social skills and anger management, all areas that can be directly affected by a brain injury.

Although the model is controversial, it could offer vital support for those recovering from brain injury. It also indicates a growing awareness of cognitive functioning and the important role it plays in a person’s ability to care for him- or her-self — especially amid the chaotic, deficient, and often dangerous circumstances of the streets.

According to Pat Murray, we still have a lot of work to do, and it needs to start with information. “Awareness has to happen first.  And that awareness needs to start with those who serve homeless individuals.” She offers Brain Injury Support Community as a resource to these providers.  “We want to work together with people serving the homeless community – to help those who have already fallen through the cracks.”

And, she says, the time is right.  “We have a real opportunity right now – brain injury is in the media and research is catching up with the reality.  We’re just getting a lot smarter about brain injury.”

Nick Patton is living proof that with the right diagnosis, the right support, and a committed advocate, life can get better, even if it never goes back to normal.

Even 10 years on, Nick still feels the effects of his attack. Although the medications have helped dramatically, he still hears voices.  But now he knows that they’re just voices and that they’re caused by the injury — he doesn’t have to listen to them.  He can trust people again.

He also still struggles with some of the signature symptoms of brain injury – including memory and concentration.  “It’s hard to keep my thoughts together.  I can’t really read anymore – and if I do, I can’t remember it five minutes later.”

He says he’d like to go to school to be a case worker, to offer the same kind of support he’s gotten from others.  But he knows it’s not in the cards. He says it would just be too much; to do the coursework needed to get the certificate.

But he’s learned to be happy again and to work around his symptoms.  He sets his phone to remind him of appointments and tries not to promise that he’ll be somewhere on time.  Social security covers his basic expenses.  “I actually like paying my bills now. It makes me feel normal.”

But most importantly, Nick goes fishing. As often as he can, he goes out with a group of guys from AA to hit the best fishing spots in the city.  It’s something he knows by heart — something the brain injury can’t take away from him.

Read the Street Roots editorial on TBI, and homelessness here.

15 responses to “All in their head: Traumatic brain injuries often go undiagnosed, especially on the streets

  1. Pingback: SR editorial: Traumatic brain injuries and homelessness | For those who can’t afford free speech

  2. Pingback: All in their head: Traumatic brain injuries often go undiagnosed … | Sports Injury

  3. Great article. I was unaware that TBI affected such a high percentage of the unhoused. Definitely a serious medical condition requiring support and treatment! 😦 sad that the medical community often doesn’t get to the heart of the issue and so many go undiagnosed.

  4. As a TBI survivor, this is not a surprise to me at all. What a wonderfully done article. There by the GRACE go I.

  5. As a TBI survivor, I have known what it is to fear becoming homeless as personal relationships fall apart and my relationships on the job become strained. I have scouted out remote entrances to city waterworks tunnels and such in case homelessness should ever become a reality … short-term memory loss always being an issue, losing my job and my system of pre-allocation of payments such as rent could very likely put me there.

  6. Anna in PDX

    Very good article, and a learning experience for me for sure.

  7. Chrissy Washburn

    Nick’s story was heartwarming and inspiring. I love to hear how our system worked well for someone. And, the article was well presented and thorough. Hopefully it will help many realize that people who are homeless often have a serious problem that can be helped if the proper services are provided. Then we are all better off. Thank you Kate.

    Chrissy Washburn

  8. We were blessed with our situation. His injury was caught and treated quickly. Recovery took time! And yes he was DIFFERENT in the end but we made it. He only fired me once!
    Kathy and Dale, Still Married and Blessed 33years.

  9. I am a traumatic brain injury survivor of 33 years now; have been meditating regularly for
    22 years. That practice speaks directly to the disability of TBI, so often misdiagnosed and not recognized for what it is.

    Just this past year I’ve created the ‘Gold Mind Meditation Project’ here in Portland; I’m introducing brain injury survivors to meditation and how it can heal in the long run as well
    as give profound peace near term. Fellow survivors receive and learn with great interest.
    Neuroplasticity is really happening!

    Check out Gold Mind Meditation Project (GMMP) on Facebook and the blog:
    Please ‘like’ and follow these.

    There is light in the dark hole of TBI and it’s rehabilitation.

  10. Pingback: Editorial: TBI research another tool in addressing homelessness | For those who can’t afford free speech

  11. Pingback: Part II: Why diagnosing traumatic brain injuries on the streets matters | For those who can’t afford free speech

  12. Pingback: Part III: Brain injuries push victims into homelessness | For those who can’t afford free speech

  13. Pingback: Street Roots four part series on brain injuries and homelessness | For those who can’t afford free speech

  14. Pingback: Street Roots honored by Portland’s Veterans For Peace | For those who can’t afford free speech

  15. Pingback: You Can’t Always Tell a Book By Its Cover

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