Living with a Brain Disorder – Brain Blogger http://brainblogger.com Health and Science Blog Covering Brain Topics Mon, 09 Apr 2018 12:00:43 +0000 en-US hourly 1 https://wordpress.org/?v=4.9.5 Carpe Diem—Living with Fear http://brainblogger.com/2018/03/16/carpe-diem-living-with-fear/ http://brainblogger.com/2018/03/16/carpe-diem-living-with-fear/#respond Fri, 16 Mar 2018 12:00:25 +0000 http://brainblogger.com/?p=23480 “Live life to the fullest.”
“Celebrate life.”
“Carpe diem.”

I’ve heard them all. But what if I don’t feel like it? What if I’m having a lousy brain day, restricted to a darkened room with a blinding headache, and seizing the day is not an option?

I have clusters of malformed blood vessels called cavernous angiomas in my brain. Two of them bled, turning my life upside down with seizures and other symptoms. A few months later, I underwent resection surgeries to prevent future bleeds.

The surgeries wreaked additional havoc—headaches, seizures, fatigue, short attention span and memory loss, vertigo and poor balance, as well as severe depression. During the first couple of months post-surgery, my world revolved around my recovery. I was in survival mode, often fearful, often feeling alone. On good days, I took it one day at a time. On bad days (and there were many), I slid back three steps for every half step forward. There wasn’t much I could seize on those days.

A year into my recovery, I finally had the wherewithal to join the Angioma Alliance, an online support group for angioma patients. Through the website, members connect with each other, sharing war stories, sometimes asking questions but more often seeking reminders that we are not alone in our struggles.

All of us cavernous angioma patients live with an ax hanging over (or inside) our heads. There’s always a chance of a bleed, especially from an angioma that has bled before. Angiomas can cause symptoms even when they haven’t bled. A resected (surgically removed) angioma can grow back. Many of us who have the familial form of the disease have many angiomas and can generate new ones throughout our entire lives.

Those of us who are good candidates for brain surgery, where the benefits outweigh the risks of surgery, are considered the lucky ones. One of the members of the Alliance has an angioma located in her brain stem. Unfortunately, it is inoperable. My friend is scared of the very real possibility of a bleed causing her heart to stop beating or to suddenly take away her ability to breathe. Her fears often paralyze her, preventing her from taking life by the horns.

My fears emerge when a new symptom appears or a new manifestation of an old one emerges: is it a sign of a new bleed? Is a new angioma forming?

These days, more than ten years since the surgeries, my good days outnumber the bad. Most of the time, my fears hide beneath the surface, and when they do come out of hiding, they rarely paralyze me.

I should be able to seize the day.

I have several friends who are breast cancer survivors. Sheryl, at the age of seventy, learned to fly-fish and dragon boat. She paddles competitively and participates in national and international dragon boat races.

Darlene didn’t even jog before her diagnosis; now she runs marathons. She rarely traveled out of town, and now she travels frequently and extensively. She’s tried sky-diving, attends glitzy shows, and throws frequent pool parties.

Are these inspiring activities the only ways that count as living life to the fullest? Should I seize and celebrate life like my breast cancer survivor friends?

I have absolutely no interest in sky-diving or learning to fish. Glitzy shows have never been my thing, and I do my best to avoid parties.

Is it a matter of personality? Perhaps if I were as gregarious as my friends, I would live more like them. They may not have been as daring pre-cancer, but were they as gregarious as they are now? Perhaps they only developed that side of their personalities after the challenges of treatment and recovery. Was I supposed to have become more outgoing?

Having had to take a crash course in asking for help and admitting my weaknesses, I have become better at connecting with people. I’m not as extroverted as Sheryl and Darlene, but I am more outgoing than I was pre-surgery.

Still, I’m not a party-goer. My difficulties processing high volumes of sensory input keep me from activities such as sporting events and parties that involve large crowds, loud noises, and garish colors.

Perhaps it’s a matter of energy or lack thereof. Much of the time, I struggle through debilitating fatigue and have nothing left for celebrations. When I am overtired, my deficits are exacerbated and vertigo returns in full force, my balance is precarious, my attention span is that of a gnat, I have trouble accessing vocabulary, and my headaches are crippling.

I have to pace myself. I take one day at a time, shuffling through the bad brain days, enjoying the good days. Is that the best I can hope for? Is that seizing the day?

Like my cancer-surviving friends, my life has changed dramatically. I travel much more than in my pre-injury days, to Colorado and New York, Israel, and Mexico. Always, wherever I go, I must seek out quiet spots to recover and regroup. But once my inner traffic jams clear up, I join in the fun, though at a slower pace.

I do have more passion in my life—it comes to light in my teaching, in my writing, and in my need to make a difference in the world.

Within a few months of my surgeries, I moved into a more central neighborhood. I am within walking distance of shops and restaurants. I no longer drive everywhere. My awareness, both of myself and the world around me, has grown; I am more in tune with my fellow human beings, better able to interact with my surroundings. I live more quietly. I take leisurely walks, stopping to absorb my surroundings. I play with my grand-dog, enjoying his antics. Life is harder but more fulfilling.

Could my way also count as a celebration of life?

It is a lovely day outside. I am well rested after a rare night of decent sleep. I slip on my jacket and head out for a stroll along the nearby river.

This diem is definitely calling out to be carped, my way.

Image via FabyGreen/Pixabay.

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In and Out of the Abyss: Depression After Brain Surgery http://brainblogger.com/2017/10/04/in-and-out-of-the-abyss-depression-after-brain-surgery/ http://brainblogger.com/2017/10/04/in-and-out-of-the-abyss-depression-after-brain-surgery/#respond Wed, 04 Oct 2017 15:25:22 +0000 http://brainblogger.com/?p=22942 Once again I was on the phone to my friend, sobbing. She’d put up with my tears every day since I left the hospital. Two or three daily meltdowns were the norm.

Many of my tears were over things that would have merely irritated me before: misplaced scissors, dirty socks in the middle of the living room, a brief computer glitch.

I have cavernous angiomas, tangles of malformed blood vessels, scattered throughout my brain. Two of them—one larger than a golf ball in my right parietal lobe, and the other, smaller, in my brain stem—had bled, and I underwent brain surgeries to remove them.

The bleeds and surgeries led to side effects including loss of balance, vertigo, nystagmus, trouble with sensory overload, and a number of cognitive deficits. My emotions also seemed volatile. I expected that my emotions would settle down as my brain healed. They didn’t.

After putting up with about a month’s worth of meltdowns, my friend spoke up. “I think you need meds.”

I was shocked. The possibility of psychiatric medication had not occurred to me. The people I knew who needed it had major issues: a cousin whose mother had died when she was ten years old, a friend who had been suicidal, a student with bipolar disorder. I wasn’t depressed. I just got really upset too easily. I was just fragile, and, given what I’d been through, that was understandable.

I wasn’t in denial over my emotional state. Aware of my extreme vulnerability, I’d been proactive: I’d started seeing a psychotherapist regularly within days of my return home from the hospital. I had things under control.

I knew that brain injury can cause chemical imbalances, which can lead to clinical depression. In one account I read, a patient lamented not having gone on antidepressants sooner. Feeling fortunate that I wasn’t in that bad of shape, I sympathized with those who were.

I didn’t need meds.

Over the next few weeks, as the tears flowed more often and more freely, my friend grew more insistent. I continued to resist, explaining away my vulnerabilities. It was normal to grieve over losses. I blamed really bad days on my menstrual cycle.

But as the severity and frequency of my meltdowns increased, I had more trouble rationalizing.

I spiraled into the abyss and finally reached the bottom. I felt desolate. I knew I was a burden on everyone around me and that my life wasn’t much of a life. Suicide seemed logical, perhaps the only solution.

I kept my suicidal thoughts secret—I didn’t want my friend or my therapist to try to talk me out of it.
Weeks later, when I began to emerge from the abyss, I kept my silence because I felt ashamed, and later still, I added guilt to the shame—I had betrayed the trust of both my friend and my therapist.

I tried to rationalize my lie-by-omission: I told myself that I could never really take my life, that I didn’t have it in me.

But in some corner of my mind there must have been doubt mixed with the rationalization because a few days later I decided to discuss antidepressants with my therapist. She agreed with my friend: it was time to consider meds.

Until the brain bleeds, I was averse to pill popping. I took painkillers for my migraines and antibiotics for bacterial infections—no other medications. After the bleeds, I started taking blood-pressure meds (Verapamil) to cut back on the chances of another bleed and anti-seizure meds (Lamictal). I was concerned about messing with my body chemistry, and worried about drug interactions—I wanted to avoid medications that listed seizures as a possible side effect. Given my concerns, my therapist sent me to a psychiatrist who specialized in psychopharmaceuticals.

I wasn’t sure whether there was a viable solution within my comfort zone, but the answer turned out to be straightforward: the psychiatrist suggested simply increasing my daily dose of Lamictal. Anti-seizure meds not only prevent seizures; they also act as mood stabilizers and are often used to combat depression and bipolar disorder.

My psychiatrist conferred with my neurologist, who, concerned about adverse reactions to the Lamictal, was firm about capping my daily dose at 600 milligrams. My psychiatrist, determining that my depression was severe, decided to increase the dose directly from the 400 milligrams I was on to 600 milligrams, instead of ramping up in increments, which is the standard procedure.

I responded well to the increase. Feeling like myself once again, I realized just how badly off I’d been. Like my cousin, my student, and my friend, I too had major issues. Except that I really wasn’t like them—my issues were temporary. Once my brain healed, my depression would be over, and I’d be able to get off the meds.

It took a good four years and a couple of trial runs with lowered dosages before I managed to fully shrug off that piece of denial.

A decade later, I’m still on antidepressants, for good reason.

This depression isn’t “situational.” Good friends and therapy help me survive, but they aren’t enough. The bleeds and surgeries changed my neurochemistry. These changes are real, and they’re here to stay. The meds are here to stay, too.

Image via 5arah/Pixabay.

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Scholarship for College Students Living with a Neurological Disorder http://brainblogger.com/2016/10/25/scholarship-for-college-students-living-with-a-neurological-disorder/ http://brainblogger.com/2016/10/25/scholarship-for-college-students-living-with-a-neurological-disorder/#respond Tue, 25 Oct 2016 12:00:24 +0000 http://brainblogger.com/?p=22422 Bella Soul is a charity that empowers college students faced with chronic illness, physical disabilities, and disease through scholarships and emotional support. I have partnered with them to serve on and advise their scholarship committee on a voluntary basis. Their First Annual Luke G. Neurological Scholarship will award $500 to $1,000 to full-time students enrolled in college and living with a neurological disorder.

The application process is simple and starts with emailing Bella Soul at livebellasoul@gmail.com with the following three items:

1) Demographics:
– Name
– Date of Birth
– University/College
– Year/Grade
– GPA
– Neurological Disease/Disorder

2) Proof of Enrollment:
– Demonstrates full-time, college enrollment.
– Does not need to be a transcript.

3) Essay:
– Three-pages, double spaced about the triumphs and struggles of living with a neurological disease/disorder.
– Give examples of how your disease/disorder has impacted your education, your social life, and how you have learned from these challenges.
– Include what advice you would tell someone who is struggling with the same neurological disorder.

The other members of the scholarship committee and I will review the applicants the first week of January. The deadline for applying is by December 31st (end of day). Looking forward to reading your stories and funding your future!

Image via thelester / Pixabay.

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A Long Way to Sobriety http://brainblogger.com/2015/06/21/a-long-way-to-sobriety/ http://brainblogger.com/2015/06/21/a-long-way-to-sobriety/#respond Sun, 21 Jun 2015 14:00:04 +0000 http://brainblogger.com/?p=19825 Drug abuse by young adults in the USA is higher than anywhere else in the world. In 2012, approximately one third of young adults ages 18-25 admitted to binge drinking in the past month, and one fifth reported using an illicit drug within the last month.

A National Institute on Drug Abuse study found that 20 percent of eighth graders, 36 percent of tenth graders and nearly 47 percent of twelfth graders had used an illicit drug and that more than five million high school students binge drink at least once a month.

While overall drug use in the USA has decreased, prescription drug abuse continues to rise. The National Institute on Drug Abuse found that nearly 52 percent of twelfth graders have abused prescription medication they received from a friend or family member; this finding indicates that by the time a young adult graduates from high school, at least half their class has used an illicit substance.

As with many adolescents, Anna’s first experience with alcohol and drugs was casual but her use quickly escalated.

“I’d tried smoking pot and drinking here and there, but the first time I really drank was at a party in freshman year of high school. I got so drunk that I was sent home. I am what I know now as a binge drinker. I would go days without drinking, but when I did drink, most times I would get out of control.”

How they got started

Young adults are more susceptible to addiction than ever before. Many illicit substances such as alcohol and prescription medication are far more easily accessible than previously, and possession of these substances is also more socially acceptable. Many teens and young adults who begin experimenting with illicit substances don’t intend to develop an addiction, but experimentation can quickly lead users down a dangerous road.

Whether it starts as a method of coping with stress, a way of relieving social anxiety and relating to others, or as a method of building muscle, losing weight or focusing on responsibilities, substance abuse can easily become a destructive problem.

Many young adults end up in unsafe situations as a result of their addictive behaviors. For Josh, his addiction led him away from his family and into a lifestyle of homelessness and incarceration:

“It got to the point that I was living in my car in the winter in Seattle, Washington, and it was snowing. It even got to the point that I was arrested and spent time in jail on multiple felony charges.”

While there are a number of ways to combat the influences that lead to addiction, if addiction does develop it’s important to be supportive throughout the recovery process and on the long road to sobriety.

Why they started

In the cases of these two young adults, their lack of understanding combined with their desire to fit in played a significant role in early experimentation. For 24-year-old Josh, hanging out with friends who were smoking pot at the age of 14 was the catalyst and, with a tenuous grasp on the dangers of drugs, curiosity lead to experimentation. For 25-year-old Anna, the desire to fit in contributed to her alcohol abuse.

Both motivators shared by these two young adults are common; lack of knowledge surrounding drugs or the influence of peers are the two greatest influences in teen drug abuse.

Anna and Josh quickly spiraled into dangerous lifestyles of escalating substance abuse, reckless behavior and broken relationships. As is all too common in drug abuse, Josh began stealing from his family to support his methamphetamine and crack cocaine addiction.

“It got to the point where I would do anything I had to do to get more drugs. I stole stuff from my parents like my mom’s jewelry or my dad’s power tools. I would rob houses or sell drugs.”

Both Anna and Josh were arrested on more than one occasion for either drug use or reckless behavior while under the influence, and both suffered numerous health consequences including hospitalizations.

How they recovered

Abstaining from substance abuse is a major obstacle to overcome in recovery, but long-term sobriety is a lifelong commitment. Many begin the journey to recovery in a detox program where they withdraw from drugs and alcohol while under medical supervision. Detox can be a painful and sometimes dangerous process in which the body adjusts to the absence of drugs and alcohol in its system. Once an individual is free from the influence of drugs, they can then engage with a treatment plan that best suits their needs.

Depending on the nature of addiction, some people opt for long-term residential treatment which is the most effective method of tackling addiction. For people like Josh, the road to recovery is not without bumps and even with safeguards in place, it’s not uncommon for people to experience at least one relapse. For those who do relapse, don’t treat it as failure: in Josh’s case, after experiencing relapse he could finally ask his mother for help and “she looked into finding a longer term, better rehab.”

How they stay sober

Overcoming addiction is a life-long process. Both Josh and Anna have maintained sobriety for long periods of time; Josh has been sober for two years and Anna for five years. Both have reunited with their loved ones, have found successful employment and have re-enrolled in school, and both also have new friendships with other sober individuals and goals and aspirations they work towards every day. While the path is not always easy, there are constant reminders of their successes and positive growth in daily life.

For Josh, overcoming addiction starts with admitting there is a problem:

“If there is a problem, don’t be afraid to ask for help. Overcoming that fear will be a huge step in trying to get off drugs or alcohol.” His advice may seem obvious but for many, it’s the hardest to come to terms with. “Admitting that there is a problem will enable you to start the process of overcoming that problem.”

Anna elaborates on Josh’s point:

“Remember that you are not alone. There are thousands of other young people just like me who truly understand the pain I was in, experienced it themselves and have come out on the other side.”

One critical component of the recovery process is building a sober support network. In recovery, young adults will meet similarly-aged peers who can relate to their feelings and experiences. When surrounded by individuals you can relate to, the recovery process is far less isolating and much easier to manage. Without a strong support network, maintaining sobriety can be a difficult feat.

Sobriety is best maintained, then, by setting healthy boundaries and establishing supportive relationships with other sober individuals. Achieving sobriety can be a long journey filled with both hurdles and rewards, and in spite of the obstacles there are countless successes that can be experienced too. As Anna summed up in her advice to other young people struggling with addiction: “If you can see that drugs and alcohol are causing problems in your life but don’t see a way out, ask for help, be honest and you can have a life beyond your wildest dreams”.

References

SAMHSA

Bradford Health

Sober College

Image via wavebreakmedia / Shutterstock.

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Denial – An Unorthodox Strategy For Coping With Cancer Diagnosis http://brainblogger.com/2015/05/04/denial-an-unorthodox-strategy-for-coping-with-cancer-diagnosis/ http://brainblogger.com/2015/05/04/denial-an-unorthodox-strategy-for-coping-with-cancer-diagnosis/#respond Mon, 04 May 2015 12:00:20 +0000 http://brainblogger.com/?p=19485 Six-and-a-half years ago I was officially cured of brain cancer — specifically, a glioblastoma multiforme, the most lethal of brain tumors. GBM, as it’s known, has a median survival rate of one to two years.

According to the Journal of Neuroepidemiology, a “population-based cure is thought to occur when a population’s risk of death returns to that of the normal population, and in GBM, that is thought to occur after 10 years.”

Did I jump up and shout hallelujah? Throw a party? No. I’ve met too many people with a GBM who don’t make it past two years. I’ve met too many of their family members whose lives precariously balance on the hope of each new clinical trial, on the outcome of each successive MRI.

There is also this: throughout the years I’ve lived with the diagnosis, I haven’t put much stock in statistics, neither when I got my diagnosis sixteen years ago nor since. Still, my non-reaction got me thinking. How unorthodox was my wilful oblivion? Had it worked for others coping with a serious illness?

Whatever the case, there was also the possibility that I had just gotten lucky: a few inches to the left, and it would have been a different story. Or, as my radiation oncologist maintains, I had a brilliant surgeon, one who, my brother-in-law reported, told my family that he’d never performed a cleaner resection — no mean feat, considering the finger-like tentacles that make a GBM difficult to remove. Maybe the radiation and chemotherapy treatments had stopped the cancer from spreading.

Or maybe, what I did in addition to my treatments — the coping strategies I adopted — are worth sharing. With the caveat that there is no-one-size-fits-all approach to contending with the diagnosis of a serious illness, here are three.

1. Lies, Damned Lies, and Statistics

When, in August 1998, I learned I had a brain tumor and, two days later, heard the words “glioblastoma multiforme,” I knew it wasn’t good. Simply when uttered aloud, those words had a certain sinister ring to them. And, of course, there’s the median survival rate of one to two years.

I didn’t know that. I didn’t need to. All I had to do was look at the shock that froze the faces of my sister and brother-in-law, both physicians. At that moment, I asked them not to tell me my prognosis.

There is no way of knowing whether my decision to keep myself in the dark as to my prognosis figured in my survival. That said, my sense is that certain information cannot be unlearned, particularly in someone, like me, whose world, suddenly and without warning, had been overturned, particularly in anyone, like me, in such a fragile state.

One to two years to live, in other words, would have been seared into my mind. The clock would have started ticking.

Evolutionary biologist Stephen Jay Gould had a far more refined reproach. In July 1982, as he recounts in his 1985 essay “The Median Isn’t the Message,” he learned he was suffering from abdominal mesothelioma, a rare and toxic cancer usually associated with exposure to asbestos, with a median survival of eight months after discovery.

The news was devastating. But then Gould began doing some digging. As someone trained in statistics, he distinguished median survival, a measure commonly used to express survival rates, as the amount of time after which 50% of the patients have died and 50% have survived.

In other words, a median survival rate of eight months didn’t mean he had eight months to live. Given his relative youth — he was forty — the superlative medical treatment he knew he would receive, and his generally “sanguine” attitude, it meant there was no reason he could not be among the latter 50%. Above all, he recognized the near impossibility at diagnosis of knowing whether any individual will place to the left of the median — that is to say, before the eight months for his particular illness — or the right, after the eight months.

This was where he found solace. With his particular makeup, he could imagine himself surviving far out along the right of the median. And that’s precisely what he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer unrelated to his original disease.

2. The Unsung Benefits of Denial

I remember the first time I walked into an oncology ward. I saw the gray skin, the eyes the color of dull pennies, the puffy features. I saw the face of cancer. And then, to protect myself from the fear of becoming one of them, I looked away. I wanted no part of it. During chemotherapy treatments, I had myself treated in a small alcove separated from the main ward. For radiation, I kept my eyes peeled on a random magazine in the waiting room to prevent association with anyone else undergoing treatment there.

My mission was simple: to view myself not as an inhabitant in the world of cancer but as someone who happened to be in treatment for cancer but would continue, to the extent possible, to go about the routines of daily living in the land of the well.

Naturally, if “neither the sun nor death can be looked at with a steady eye,” as the French author La Rochefoucauld had it, neither is its opposite true. There were days when I lacked the strength to shield myself from the glaring reality of my situation. But those days were the exception.

It wasn’t the form of denial that Anna Freud described as an unconscious defense against painful and overwhelming aspects of external reality. That denial has been generally viewed as a pathological, ineffective defense mechanism.

Even an article on the Mayo Clinic website, while acknowledging that “short-term denial … gives your mind the opportunity to unconsciously absorb shocking or distressing information at a pace that won’t send you into a psychological tailspin,” warns that “denial should only be a temporary measure — it won’t change the reality of the situation” and counsels those stuck in the denial phase to consider talking to a mental health provider.

Of course, the kind of denial to which the Mayo Clinic refers is a denial that one has a disease, leading the patient to refuse treatment. But recent studies propose shifting the lens on the concept of denial—specifically, as an adaptive strategy in meeting the impact of the disease.

A review in the Journal of Psycho-Oncology exploring denial in cancer patients found that “denial was related to improved psychological functioning.” Those patients deployed “active strategies of realizing that one has cancer, but choosing not to let the illness control their lives, trying to brush the illness aside, and instead create a positive outlook.”

Ruth McCorkle, a pioneer in oncology nursing and professor of epidemiology at Yale, had this take: “Some patients compartmentalize their disease,” she recently told me. “It’s a way to shield themselves from paralyzing fear and at the same time remain functional.”

3. Practicing Denial As An Adaptive Strategy

In view of his positive outcome, let’s return to Gould’s essay — specifically, the reply from Sir Peter Medawar, his personal scientific guru and a Nobelist in immunology, when he questioned him on the best prescription for success against cancer. “A sanguine personality,” Sir Peter ruddily replied.

That was in keeping with Gould’s thinking. “In general,” he wrote, “those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer.”

McCorkle went further. “It’s about continuing to go about your routine. It’s choosing not to say I can no longer do this because I have cancer or even why should I continue to do this as someone with cancer and instead saying ‘why not try to do what I can?’ It’s about asserting control over circumstances.”

In my case, I adopted a maxim from my high school cross-country coach. When facing a seemingly insurmountable challenge, break it down into manageable distances, he’d say.

In other words, set achievable goals each day. Walking, for example. Walk 500 steps or, if you’re feeling a bit worn down, 100 steps, or even 50. Memorize a poem. If you’re not up to a whole poem, memorize one line. Or two. Draw a picture, or an outline of a picture. Work on a crossword puzzle. Try solving one clue. If you’re not up to more, put it aside.

There’s a fluidity to this regimen. The one essential: make a commitment to do what you choose as your activities every day, even if it’s just a pale approximation of what you might do if you were entirely well.

Why? Because, as McCorkle suggested, it’s a way of compartmentalizing your disease. It’s a way of creating your own sustainable reality within your self-imposed oblivion.

References

Courneya KS, Mackey JR, & Jones LW (2000). Coping with cancer: can exercise help? The Physician and sportsmedicine, 28 (5), 49-73 PMID: 20086640

Gould, Stephen Jay (1985). The Median Isn’t the Message. Accessed online 29 April 2015.

Smoll NR, Schaller K, & Gautschi OP (2012). The cure fraction of glioblastoma multiforme. Neuroepidemiology, 39 (1), 63-9 PMID: 22776797

Image via Stephen Dukelow / Shutterstock.

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5 Things I Learned About Serious Mental Illness While Caring for My Brother http://brainblogger.com/2015/03/18/5-things-i-learned-about-serious-mental-illness-while-caring-for-my-brother/ http://brainblogger.com/2015/03/18/5-things-i-learned-about-serious-mental-illness-while-caring-for-my-brother/#respond Wed, 18 Mar 2015 11:00:15 +0000 http://brainblogger.com/?p=18722 Over the past year since I published my memoir about caring for my brother Paul, who suffered from schizophrenia, I have encountered several misguided but firmly held beliefs that get in the way of understanding our fellow humans who suffer from a severe brain disorder. Here are just a few.

1.

Probably the most common misconception is that if people with serious mental illness (SMI) would just take their medication, they would be all right. Unfortunately, this is not true. For 32 years, my brother was loaded up with thousands of pills and subjected to all sorts of talk therapies and counseling, and still he alternately thought he was James Bond, Clint Eastwood or a Mohican Indian (as in, the last of…). He was much worse when he went off his medication, but even on it, he could not hold a normal conversation.

Of people diagnosed with schizophrenia, about 25% never achieve any sort of meaningful recovery. About 25% have a couple of psychotic episodes but then recover completely. Inbetween, some people manage to make a life for themselves as long as they get good support from their family and community, others are in and out of hospitals. All of these people need our support in getting outpatient treatment and effective counseling and other assistance.

2.

Back in the 1840s, reformers like Dorothea Dix worked hard to get the insane out of prisons and into caring psychiatric institutions. Since the 1950s and 1960s, and with the advent of modern psychotropic medications, though, the push has been to get everyone out of hospitals and into scattered housing in the community. Many people imagine mental hospitals as houses of horrors, and most of them have been closed.

Unfortunately not every patient with a serious brain disorder can make it in the community. They need lifetime housing and care. No one wants to go back to the days of hulking bedlams.

Many people with SMI – most of the 50% in the middle – can do quite well in their own apartment as long as they have support from social services. But we need to house the 25% – people like Paul  – in supportive congregate housing, perhaps modeled on the assisted living facilities we have for elderly people with medical or cognitive issues. Those with SMI need a home where, with assistance, they can be the best they can be.

3.

Alternatively, some people think there is nothing we can do for those who are most severely afflicted with SMI and we ought to “just lock ‘em up”. This extreme is also not true. Perhaps these people are behind the current trend of treating people with SMI as criminals. A very large percentage of our prison population suffers from some degree of mental illness, many of them seriously deluded. But the violence and punitive atmosphere there makes their symptoms worse.

During the last year of my brother’s life, he was the most lucid we had seen him in over 30 years. He was living in a pleasant nursing home where doctors and nurses made sure he got his medication, meals and snacks were served frequently, optimizing the effectiveness of the medication, and he had a warm bed in clean and cheerful surroundings. Paul’s coherence seems directly tied to how people around him treated him.

With pleasant aides and orderlies, he smiled and said hello to everyone and expressed thanks to me whenever I took him out or visited. I discovered he had a sweet and caring heart under all the babbling about the FBI and Mohican Indians being scalped, and I would hate to think of people hurting him unnecessarily. I am very thankful he never ended up in jail.

4.

While doing research about schizophrenia, I discovered that it is genetic, but not inherited. How can that be? I always thought it ran in families. I my family, neither parent suffered from any serious mental illness, and only one of the ten children developed schizophrenia.

Scientists know almost nothing about mental illness for sure, but it appears that illnesses like schizophrenia come about due to the confluence of two factors – genetic predisposition and some serious stressors. There appears to be a spontaneous mutation at the time of the creation of the fertilized zygote which creates the predisposition. Yet studies of identical twins show if one develops SMI, there is only a 70% chance the identical twin will also develop it.

It’s not clear what how obvious the stressor has to be; it could range from poor nutrition in the mother during pregnancy to head trauma to drug usage. No one seems to know. According to the National Institute of Mental Health the percentage of people with schizophrenia is relatively constant at a little over 1% of the population, worldwide, so it is not due to any particular child rearing tradition or types of food.

5.

When my brother first got sick, I didn’t know anyone else who had a serious mental illness. It was all very scary and confusing. Mental illness is all around us, but most people, myself included for many years, don’t feel comfortable talking about it.

But while promoting my book many people have come up to me at readings and told me about their aunt or uncle or cousin or the neighbor’s son… They tend to tell me about their family member or neighbor in a whisper, as if there was something to be ashamed of. Let me assure anyone reading this that there is no need to whisper. Nearly everyone has a family member or knows someone with SMI – there is no need to feel embarrassed.

Oh, and I should add a 6th point, and by far the most important thing I learned while on this journey. I realized while caring for my brother — really realized, on a gut level — that every person with serious mental illness, no matter how difficult or perhaps even scary, was someone’s baby once, someone’s brother or sister, or a cherished and loved niece or nephew. They were a person with hopes and dreams. And they still are.

References

Stats and figures taken from Surviving Schizophrenia: A Manual for Families, Consumers and Providers (4th Edition); E. Fuller Torrey

Image via Orange-studio / Shutterstock.

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Living with Schizoaffective Disorder – A Personal Story http://brainblogger.com/2015/02/27/living-with-schizoaffective-disorder-a-personal-story/ http://brainblogger.com/2015/02/27/living-with-schizoaffective-disorder-a-personal-story/#respond Fri, 27 Feb 2015 12:00:13 +0000 http://brainblogger.com/?p=18715 Being diagnosed with schizoaffective disorder was a real blow. I felt alone. I felt helpless. I felt my life had ended. I can’t tell you how many times I sat in a bathtub staring at the vein in my arm, wondering how much it would hurt to cut through the skin, or how frightened I’d become of heights, knowing that my suicidal thoughts might one day get the best of me. For years I continued to live as I had prior to my diagnosis: drinking, doing drugs, eating poorly, and not exercising. Finally, after my third manic hospitalization, I was struck with a realization: I have to learn to live with this disorder.

Over the years, I’ve learned coping skills to help when anxiety, paranoia, depression, or mania set in. Here’s how I deal with those issues:

Anxiety

When I’m anxious, I start by breathing deeply, in and out, as many times as it takes to feel comfortable. If being in a crowded place, such as a party, is causing my anxiety, I step outside for a while and do my breathing there. I focus on my breaths and center myself in the moment, allowing racing thoughts to slow down and disappear. I practice meditation often, and the skills I’ve learned through that training have allowed me to better cope with anxiety.

Paranoia

Paranoia often leads to anxiety, so while I’m breathing, I ask myself the question: “Are you sure?” It’s a trick I learned from therapists and Zen books. If I think a person at the party is out to get me, or everyone hates me because I made a particular comment, I just ask myself, “are you sure?” The answer is always “no.” You can never know what’s going on in others’ heads, and they can never know what goes on inside yours, unless you tell them. The paranoid side of schizoaffective disorder is often irrational, and asking a rational question can override that.

Depression

When you’re depressed, you don’t want to do anything. You just want to lie in bed, pull the covers over your head and cry. I understand because it’s happened to me dozens of time. I used to call them “suicide days”, when I’d sit around thinking of ways to kill myself, always realizing that the pain my own death would cause to my loved ones was significantly worse than the sad spell I was going through. Sometimes you have to tough it out, but it doesn’t hurt to be prepared.

Preparation for me occurs every day, seven days a week, 365 days a year. As best I can, I follow a routine. I wake up, get my coffee, do my work for 6 to 8 hours, practice guitar for an hour, write for an hour, and read for an hour. In between I spend times with friends and family. When I’m depressed, the work day may only be an hour or two, but I try to stick to my routine.

The key to overcoming depression is doing something; anything can get the ball of productivity rolling, and productivity will help get you out of that funk. One thing that has helped me considerably is hiking. If I enter the woods depressed, 100% of the time I leave feeling better than I did when I got there. Nature has a way of making problems seem insignificant.

Mania

Avoiding mania involves two very important steps: taking medications daily and living a healthy lifestyle. Since I’ve been loyal to my medication regimen, I haven’t had a single manic episode. Considering that two of my three manic episodes were the result of not taking medications, I’d say this is a big one. Stay on your meds!

Living a healthy lifestyle involves eating healthily (or at least fairly healthily), abstaining from alcohol and drugs, and maintaining healthy relationships with friends and family. It seems like a huge change, but the truth is the past is gone, and you can change who you are any instant you choose to do so. Just pick a path and start walking.

I can’t say whether we only live once, or if there’s anything for sure beyond the life we’re living now, but I can say that this is the life we have, here and now, and having schizoaffective disorder is no excuse not to make the most of it. Life can be great with schizoaffective disorder. My experiences with the disorder have created within me a depth found in a select few individuals, and this depth allows me to understand life’s ups and downs and appreciate each not as punishment, or reward, but simply as part of this life we live.

The seemingly horrible experiences of schizoaffective disorder have given me a great gift: appreciation. After all, how can anyone appreciate sweetness without having first tasted bitterness?

Image via Dudarev Mikhail / Shutterstock.

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Communicating with ALS One Blink at a Time http://brainblogger.com/2015/01/28/communicating-with-als-one-blink-at-a-time/ http://brainblogger.com/2015/01/28/communicating-with-als-one-blink-at-a-time/#respond Wed, 28 Jan 2015 12:00:13 +0000 http://brainblogger.com/?p=18322 In their new book One Blink at a Time, Ismail and Cheryl Tsieprati share how they teamed up and overcame each and every challenge ALS placed before them.

Ismail has lived with ALS for more than thirty years. His wife, Cheryl, has been challenged over the years to build, train and maintain a reliable and effective nursing team. In addition to Ismail and Cheryl’s inspiring story, the book contains practical advice from training caregivers, to preparing for emergencies, to surviving the hospital. Also included is an extensive glossary and helpful resources. Here, I interview both Cheryl and Ismail.

Lakhan: Can you tell us about the moment you found out that your husband had ALS?

One Blink at a Time CoverCheryl: I was attending a support group meeting for post-polio syndrome survivors when I first feared that Ismail had ALS. I had been writing feature articles for a local newspaper and had interviewed a young woman who was a polio survivor. She invited me to attend the meeting which she helped organize. She wanted me to write an article about the group. During the meeting a question came up about the similarities and differences between post-polio syndrome and ALS. A lot of the people in the room had no idea what ALS was. The guest speaker, a neurologist, explained what ALS is, and said that some of the symptoms are very similar to post-polio syndrome. “But the prognosis for persons with ALS is very poor,” she said. “Most people with ALS die within five years of diagnosis.”

As she described the symptoms of ALS, I began to panic. They were exactly the same symptoms that Ismail had been having for so long: progressive weakness and wasting away of muscles. The room started to close in. I desperately needed air. I wanted to run out of the room, but I forced myself to stay until the end of the talk. Then, I excused myself and went home, terrified that I had just discovered what so many doctors hadn’t been able to — that Ismail had ALS. I prayed that I was wrong, but the following week, Ismail went in for testing and Dr. Rebecca Hanson, his neurologist, confirmed my worst fears.

Dr. Hanson called me at home and asked if I could come into her office that day so that she could talk to both Ismail and me together about her diagnosis. That was the moment I knew for certain that my worst fear was true. Unable to wait until I got to her office, I asked her over the phone whether it was ALS. She hesitated and then said “yes.” In that instant, my world crumbled around me. I couldn’t believe such a terrible thin could happen to Ismail and I.

Lakhan: How did your life change from that point on?

Cheryl: My life turned upside-down in that instant. The diagnosis changed everything forever. I believed that all of the dreams Ismail and I had of a happy and successful life together were dead, that we would never be happy again. This is how I describe it in our book:

Will we ever be able to smile and laugh again, I wondered? Gone were our hopes of building a successful video production company, for writing screenplays and musicals together, for traveling the world. We would never grow old together, like those sweet old couples we often watched strolling hand-in-hand through the park at Santa Monica Beach. I would soon be a widow. I would lose the man I loved so deeply, wanted so desperately. I’d live the rest of my life alone and lonely. And Ismail, so sweet, so cheerful, so full of life, would die young. How could this happen to us?

Looking back, I realize that everything I predicted that day about our future was wrong. We have smiled and laughed a lot throughout the last 30 years, even produced some videos. Ismail wrote another screenplay using a computer system and an infrared switch, we have written a couple of musicals together, and we have written a book. We took a European tour before Ismail started using a ventilator, and for many years, took overnight trips to beautiful places in California like Carmel, Monterey, La Jolla, San Diego, and Santa Barbara. To everyone’s amazement, Ismail is still alive and happy, and we continue to enjoy our lives and one another’s company.

It’s true, however, that our lives were irreversibly changed the instant Dr. Hanson made that dark diagnosis. Our journey has been different from most other married couples, our challenges are often more intense. Life is harder. Our daily routine is complicated with nurses, medical protocols, medical equipment, ventilators, hospital beds, and our ongoing fight to keep Ismail healthy and happy despite his ALS. But, throughout these 30 years, our relationship and our love of life and for one another have remained as strong as ever.

Lakhan: Healthcare providers often focus too much on the disease and not the patient (and even less so their loved ones and caregivers). What would you like for them to know?

Cheryl: Ismail and I were fortunate to have two compassionate, supportive neurologists who each delivered their diagnosis in a kind and caring manner and made themselves available to provide ongoing support and continue to answer our questions whenever they came up. Unfortunately, other patients often complain that their neurologists told them they had ALS in a cold, clinical manner and then sent them away to “get their affairs in order” without any sense of hope or helpful resource information to take with them. These families often feel frightened, lost, and abandoned.

Without providing a sense of “false” hope to newly diagnosed patients, I feel doctors should explain that ALS affects everyone differently and that many people with ALS live longer than the 3-5 year average that professionals quote; that some people with ALS, like Ismail, live for many decades. I think doctors should also explain that there are options available, such as bipap machines and portable ventilators, that can, when the time comes, help extend the lives of those who are interested in exploring these options and who have the resources necessary to support living with them. ALS patients and their caregivers should be given as much resource information as possible at the time of diagnosis and should be referred to the ALS Association and the Muscular Dystrophy Association, both of which provide helpful practical information and support to persons with ALS and their families.

Ismail and I feel that our book, One Blink at a Time, will show people living with ALS and other life-altering conditions that happiness and success are possible, even in the face of adversity. We believe our book will inspire people to live every day to the fullest with optimism, courage, and hope. Alternate chapters are written by Ismail and me and explore each of our battles, triumphs, and lessons learned. Our book includes practical advice about things such as training caregivers, preparing for emergencies, and surviving the hospital. It also includes an appendix containing an extensive glossary and helpful resources.

Lakhan: What was it like to meet Stephen Hawking? If you saw the movie “The Theory of Everything“, what did you make of it?

Cheryl: Stephen Hawking, one of the greatest minds of all time, is my hero and inspiration. His remarkable story of surviving ALS for so many years and continuing to make a tremendous contribution to science and the world despite his paralysis and inability to talk, profoundly touched me and helped to lead me out of my intense depression after Ismail’s diagnosis. If this world-renowned scientist, I thought, can continue to work and travel and accomplish great things despite being in a wheelchair and dependent on a computer voice system for communication, so can Ismail. Emerging from my deep depression, I resolved to help Ismail live his life to the fullest for as long as he could.

On August 14, 1992, Ismail and I were guests of the ALS Association at the world premiere of A Brief History of Time, a movie about Professor Hawking’s life and work. We were also invited to a private reception for Professor Hawking at the Peninsula Hotel in Beverly Hills prior to the movie’s screening. It was one of the most exciting nights of our lives. Our hero was right there in front of us, speaking to us with his computerized voice! His gracious companion repeated to us his words that had been swallowed by the loud buzz of the crowded room: “It is a pleasure to meet you.” Meeting Stephen Hawking was the thrill of a lifetime.

Sitting on a shelf in our home is a framed snapshot of Stephen Hawking and Ismail, sitting side-by-side in their wheelchairs at the Peninsula Hotel reception. Ismail and I both treasure the picture and the memory of meeting this amazing man.

I thought the movie The Theory of Everything was well-made and touching and that it realistically portrayed many of the challenges and conflicts faced by people living with ALS and their families. Both Eddie Redmayne and Felicity Jones gave outstanding performances. I found Eddie Redmayne totally believable as Stephen Hawking. He did an amazing job portraying a man with ALS and simulating the various stages of his body’s gradual deterioration resulting from progressing ALS. Some scenes were painful for me to watch, not only because they showed the struggle Stephen Hawking had to deal with, but also because they reminded me of the pain I suffered watching Ismail struggle through those same stages of ALS.

Lakhan: Ismail, how were you diagnosed with ALS?

Ismail: The first thing I experienced was pain in my right arm, my right thumb, and my neck. The pain came and went. As far back as the late 1960s, a doctor prescribed a neck collar for me to use while I worked. I began to experience weakness in my right arm in 1976. By 1980, I was unable to hold my niece, then a baby, in my right arm. A doctor told me it was nothing but a pinched nerve and suggested I take Tylenol. Later, when I discovered that I had lost muscle between my thumb and index finger, another doctor suggested I practice squeezing a soft rubber ball to build up the muscle. He prescribed a neck brace. Finally, during an annual physical examination, my family doctor happened to notice twitching in my breast and gave me a referral to Dr. Rebecca Hanson, a great doctor who was head of the neurology department.

Dr. Hanson gave me a very thorough examination. In addition to my other symptoms, she discovered a twitching and a weakness of control of my tongue. She tested the strength of my tongue by having me push it against the inside of my cheek while she pushed back on the outside of my cheek with her hand. Afterwards, she sent me for an electromyogram (EMG), which is a test that checks muscles and the nerves that control muscles. Needles that were attached by wires to an electrical recorder were put in my tongue. The test was very painful. When Dr. Hanson got the results of the test, she determined that I had ALS. Even though Dr. Hanson was certain of her diagnosis, she arranged for an appointment for me to see Dr. W. King Engel, Director of the USC Neuromuscular Center at the Good Samaritan Hospital, for a second opinion.

Dr. Engel, another great doctor, is a world-renowned specialist in neuromuscular disease. He took a long time to examine me and told me he was not sure that I had ALS. He made arrangements for me to have a special liver test and ordered a muscle biopsy. The biopsy was taken from my thigh. After getting the result of that test, Dr. Engel was convinced that I had ALS.

Lakhan: When did you realize all the clinical manifestations of ALS?

Ismail: When I was first diagnosed with ALS, I did not know anything about the disease. Dr. Hanson and Dr. Engel explained to me and Cheryl how ALS kills a human being by destroying nerve cells that allow the brain to control muscle movement until eventually the person becomes paralyzed. The muscles of the diaphragm eventually stop working, causing respiratory failure.
Because I have a slowly progressing form of ALS, I experienced the symptoms of the disease gradually over many years.

Lakhan: What words do you have for others newly diagnosed with ALS?

Ismail: Take one day at a time and enjoy every minute you can. Focus on the things you can do, not on the things you can’t do. Never stop dreaming.

Do not give up. There is always hope. With all the research that is going on, soon science will provide answers. Hopefully this disease will be eliminated, and it will be a thing of the past.

Lakhan: The Ice Bucket Challenge was a real success in raising funds for ALS. However, we recently wrote on the subject and exposed that most of the participants didn’t know what ALS stood for let alone what the disease actually entailed. What are your thoughts?

Ismail: The Ice Bucket Challenge has been the greatest thing to ever happen to people with ALS. When I first heard about it, I never dreamed how big and important it was going to become. Cheryl and I thought it would die out after a couple of weeks. We were wrong!

When I was first told I had ALS, I didn’t know what it was. When I told other people I had ALS, most of them didn’t know what it was either. Even when we said it was “Lou Gehrig’s Disease” a lot of people didn’t know what we were talking about. But thanks to the Ice Bucket Challenge, people started talking about ALS. Celebrities, politicians, and CEOs of big companies poured buckets of ice water over their heads and challenged other famous people to do it, too. People from around the world began doing the Ice Bucket Challenge, and everybody was talking about ALS! Unfortunately, even with all of the publicity from the Ice Bucket Challenge, many people, including some of those who participated in the challenge, still do not know very much about the disease. They thought the challenge was a fun thing to do, but didn’t take the time to learn about the reason they were doing it. That is why it is important for everyone to continue talking about ALS and educating the public about what it is, what it does to people, and why it is important to find a cure.

The ALS Association’s annual “Walks to Defeat ALS” and other fundraising events help to raise awareness of what ALS is and why it’s important to raise money for research and family services. Cheryl and I feel our book, One Blink at a Time. also helps educate people about ALS and how families can face its challenges. It includes an appendix with lots of resources that can be helpful to people with ALS and their families.

Lakhan: We received a number of questions from our readers that we would love for you to answer.

BB Readers: What does it mean to be “locked in”?

Ismail: Sometimes a person can become so totally paralyzed that they have no muscle movement at all, not even eye movement. Not only can’t they talk, but they can’t even blink their eye like I do to communicate and become unable to communicate in any way with the outside world. This is what is called being “locked in.” This is how Cheryl describes it in our book:

Those who are “locked in” survive in complete isolation. They can see and hear everything around them, comprehend everything, think complex thoughts, experience joy, sorrow, and pain, and yearn to communicate with their loved ones and caregivers, to express their feelings, their discomfort, and their desires, but they are hopelessly trapped inside their bodies with no way of communicating with anyone.

Cheryl and I are always looking for new technologies that will help me communicate if there comes a time when my eye blink becomes so weak that I’m no longer able to communicate as I do now. I have signed up to be an early adopter of a new eye gaze technology called EyeSpeak. With EyeSpeak I hope to be able to select letters from a virtual keyboard by looking at each letter and then selecting a button with my eyes that will make the glasses read out loud what I have typed. I might also be able to use a computer with the help of these glasses.

BB Readers: How do you communicate?

Ismail: I communicate with eye blink. Many years ago, one of my nurses helped me design a spelling chart (above) that worked well for me. The chart has alphabet letters divided into six rows. Each row is numbered. For example, row #1 is a-b-c-d and row #2 is e-f-g-h. Row #7 says “end of word,” which I select if I want to tell my caregiver that I’ve finished spelling a word or a sentence. Row #8 contains numbers. The chart also indicates that one blink means “yes” and two blinks means “no.” Cheryl or one of my nurses calls out the numbers of each row. I blink when I hear the number of the row I want. I blink again when I hear the letter I want. Letter by letter, blink by blink, I spell out words.

Spelling out words by blinking is not the only way I communicate. I grind my teeth whenever I need to get someone’s attention (for example, when there is something wrong or I need something urgently). I can also make my ventilator beep by holding my breath and building up pressure in my ventilator circuit. My caregivers all know my code: if the ventilator beeps twice in a row, I am calling them. I also “point” at objects by looking at them. That way, I can call attention to things.

BB Readers: If you muscles are too weak, how do you breathe? Eat? Move about?

Ismail: The more my ALS advances, the more dependent I become on machines and devices to help me. Because I can no longer walk or even stand up on my own, I use a power wheelchair to move around. The wheelchair has a control switch that Cheryl and my nurses use to drive it and to lower the back when I need to recline. My caregivers also use a Hoyer lift to transfer me to and from my bed and wheelchair. When it was no longer possible for me to eat because I could not chew or swallow my food, a doctor inserted a feeding tube into my stomach so that I can be given formula and pureed food through the tube.

When I started to develop respiratory failure, I had a tracheotomy and began using a ventilator to breathe. That was 24 years ago, and the ventilator has kept me alive all this time. There are other machines available, such as the C-PAP, BIPAP, and oxygen concentrator, that can help some people breathe who have different needs than I do.

I am thankful that so much great technology exists today that can help people continue to live and enjoy life like I do.

BB Readers: When you wake up every day, what keeps you going?

Ismail: Every day I get up and look forward to being with my wife and seeing family and friends. I enjoy going out and visiting different places, and I love working with Cheryl on books, musicals, and other projects.

Death is an end of all things on earth. Life is a celebration. I want to enjoy the part of the world that belongs to me and celebrate life.

This is what I wrote in One Blink at a Time:

People are amazed that I have survived ALS for thirty years and still feel good and enjoy life. They want to know how I’ve done it. They ask me how I can continue to wake up every morning, totally paralyzed and unable to talk or to eat, and still want to go on after so many years. The answer is simple. I have a lot to live for. I love my wife and enjoy being with her. She is my best friend and collaborator. I want to continue to be with her as long as I can. I dream of living many more years with Cheryl and giving other people in situations like mine encouragement and hope.

Lakhan: Any closing remarks for our readers?

Cheryl: Life is short. It’s not always perfect, but I believe in living life to the fullest, despite challenges and limitations. I consider every day I have with Ismail a gift, which I cherish and for which I am grateful. Together, we make the most of every day.

Ismail: I hope that One Blink at a Time will be helpful and informative for other people in situations such as mine and will educate the general public about ALS. I hope that it will inspire people to live every day to the fullest with optimism, courage, and hope.

People can learn more about us and our book, read what people are saying about the book, and click on a link to Amazon to buy a copy by visiting our website at www.oneblinkatatime.com.

Image via Huntstock.com / Shutterstock.

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Patients Creating Meaningful Solutions for their Own Disease http://brainblogger.com/2015/01/22/patients-creating-meaningful-solutions-for-their-own-disease/ http://brainblogger.com/2015/01/22/patients-creating-meaningful-solutions-for-their-own-disease/#respond Thu, 22 Jan 2015 17:46:37 +0000 http://brainblogger.com/?p=18292 We live in a time of transformation in the way scientific breakthroughs are created. Or more correctly, we all feel like it is time we will be living in times in which there is a transformation in the way scientific breakthroughs are created. People are more informed then ever and the free flow of information seems like the new normal way of life. Yet still, millions of people all over the world who suffer from rare, or orphan, diseases, find themselves alone in a battle- with diseases not well understood, not well addressed, under-researched and certainly under-cured. This article is about the emergence of new tools for patients to take control over their future and  accelerate the developments of treatments and cures for their own diseases.

I first learned about the possibility of patients accelerating the development of treatments for their own conditions when I met Avi Kremer. I was then a young faculty member at the University of Pennsylvania researching the brain, and within that, many topics related to ALS — a terrifying disease that destroys the motor neurons activating the muscles leading to progressive paralysis and ultimately to death typically after only 3-5 years. There is no treatment for ALS and the only approved medication, riluzole, increases a patient’s life span by approximately 2-3 months on average. I knew, of course, all those terrible facts. But I had never met an ALS patient and never prioritized my own research agenda according to the needs of ALS patients or any other patients. Avi changed that.

Avi was diagnosed with ALS at the age of 29 years old, while an MBA student at Harvard Business School. The gap from being an MBA student at Harvard, with the world as your oyster, to being told you have 3-5 years to live and the only advice is “to make a will” was incomprehensible to Avi, and it was not comprehendible to anyone who ever met Avi. It seemed the sort of situation that would have been reasonable in the middle ages, not in the 21st century.

See Avi’s own words about starting Prize4Life

Everyone that met Avi was shocked by this gap between his youth and talents, and his prospects. I am sure Avi was too. but he was able to say the next obvious conclusion – that if we all believe that in the 21st century there should be a cure for ALS, then  we simply need to make it happen. “I am certain that there will be a cure”, Avi told me. “I am certain that the idea for it is in someone’s head right now already, he just needs to connect the dots. I want to make that happen. It will happen, I will just make it happen sooner”.

With that dream, with that spirit, Avi founded Prize4Life, a non-profit organization focused exclusively on accelerating the development of treatments, and a cure, for ALS using powerful and novel incentives. Avi was joined by Shay Rishoni, an Israeli ALS patient, and also a corporate executive, pilot, military colonel (ret.) and an Iron Man. These two have created a way for patients to create a change on their own. And on the way, they also got me, and several of my colleagues. We know that what they were planning would be more impactful than what we could do ourselves, alone in the lab.

See Shay’s own word about the responsibility for accelerating a cure for ALS

So how does a small patient-based non-profit accelerate the development of treatments for a rare disease like ALS? That was Avi’s pivotal question after his diagnosis. The answer: through bringing as many new people together as possible to combat the problem together. ALS is a scientific problem. With enough brilliant minds, it would be solved.

What tools are available to bring in new minds, new insights and new solutions?

Prize models: To achieve all of that, Prize4Life adapted the prize models-identifying the greatest barriers for development and clinical testing of ALS testing, and around each such barriers creating a prize program that attracts people to solve it. Prize4Life’s prize model is inspired by similar programs such as X-prize for space travel, demonstrated to foster meaningful research. These programs raise awareness and bring new minds into a field and generate measurable results for well-defined goals. Prize4Life wants to bring all these benefits to ALS – awareness, new minds and measurable, highly needed, results – prize programs where the real prize is Life.

Prize4Life aspires to span broad fields of innovation for their importance for ALS: we gave a $1M prize for a medical device that serves as a biomarker for ALS, another prize for developing algorithms that can predict disease progression and we are running a prize for a druggable cure. We believe that biologists, chemists, engineers, clinicians, software developers and all citizen scientists can bring a meaningful change in ALS.

Open Data: Awareness is about telling researchers that ALS exists, with the hope that it would pique their curiosity. But that is not enough, as for rare disease a lot of time the problem is not the interest, but the ability to research.One of the biggest problems with rare diseases is well, the rarity. With only a few patients (one of a 1,000 individuals will die of ALS, but due to the devastatingly short life span, there are only 30,000 ALS patients in the USA right now), it is hard to gather enough information about the disease. For rare diseases, many basic questions go unaddressed due to scientists’ and clinicians’ lack of knowledge. Which patients are likely to survive more and which is less, what are the typical courses of the disease? To address these questions, data from thousands of patients is needed at any given moment. But a typical clinician, even in the largest clinics, only sees several hundred patients at most.

The solution that Prize4Life came up with is to find another source of data- data from completed ALS clinical trials. Unfortunately, all but one ALS trial have failed, with the exception being the trial to test riluzole, mentioned above. But the data collected through them still hold a great promise for better understanding ALS patients. The largest ALS clinical trials database, The PRO-ACT database, holds data from 17 clinical trials – and over 8600 patients. It is available open access and free of charge to any researcher interested. In the 2 years of its existence, more than 400 researchers have accessed it. Many of these researchers are new to ALS because until now, there was not data available for them to work on. Among the individual researchers making use of the PRO-ACT database, there are also researchers from more than 40 pharmaceutical companies, using it to drive their clinical ALS research.

Open Science: Broadly, open science is about accessing ideas from a broad array of scientists and interested but non-scientifically trained individuals – and using the collective wisdom of the crowd to solve challenging scientific problems. More specifically for us, it is the bringing together of open data and the prize models.

One of the most important things about the prize model is that it allows opening the door to news researchers – not only newindividual scientists but in some cases, a completely new type of research. For example, because of the limited availability of ALS data, it never drew much attention from the quantitative sciences. Techniques developed in machine learning, statistics, bioinformatics and medical informatics were all breaking new grounds for biomedical sciences in recent years, but not for ALS. These techniques range from requiring large samples of patients for statistical accuracy to requiring big data of millions of data points for unraveling of novel patterns of change undetected before. Amazing discoveries were made in quantitative open science through groups like Sage Bionetworks and DREAM fostering and creating world-leading standards in the creation and rigorous running of such open science initiatives. A rare disease like ALS was not part of this development, and we were determined to change that.

Therefore, before the official launch of the PRO-ACT database – before that, there was ever any large scale ALS patient data available open access for research – we teamed up with DREAM to test the power of open challenges to advance ALS research. The first ALS Challenge ran in the summer 2012. The Challenge asked solvers to use three months of patient information (from the PRO-ACT database) to predict the patient’s state 9 months later, at the end of the year.

Predictability is crucial for understanding ALS. Although the average life expectancy of an ALS patient is about three years, some people live for decades, while others succumb within months. This lack of predictability makes the design of clinical trials to discover new treatments a long, costly and complex process. An algorithm that can reduce this uncertainty would reduce the costs of ALS clinical trials by millions of dollars. We offered $50,000 as prize foran algorithm that would meet the Challenge.

The Challenge was able to attract no less than 1,000 solvers from 63 countries, working on novel methods that have the potential to reduce the costs ALS drug development by millions of dollars. In a post-Challenge survey, 80% of the solvers that answered indicated they had minimal knowledge regarding ALS before participation in the Challenge. This already demonstrates the virtue of Open Science- bringing new minds in to the field of ALS research, that can potentially create valuable solutions ( the winning solutions can reduce the costs of large scale ALS clinical trials by at least $6 million) over three months of work and in exchange for a $50,000 prize. The winning approaches are now being used in the development of several ALS treatments, and are described (and available as supplementary information) in a recent article in Nature Biotechnology, and were also covered by Science News and Science Translational Medicine.

Given this success, Prize4Life, DREAM and Sage Bionetworks are already planning the next Challenge. The ALS Stratification Challenge, opening in Summer 2015, will be a worldwide cloud-based competition designed to spur the development of quantitative solutions for developing treatments for ALS. It will be based on the full PRO-ACT database, and newly donated trials in addition that were never analyzed before. It asks the question that follows after the question of predicting ALS – not only predicting ALS progression, by identifying meaningful subgroups of patients with different disease courses and different progression rates- understanding the difference between a patient like Lou Gehrig that will only live for two year after his diagnosis, and a patient like Stephen Hawking, who has been inspiring millions for 50 years of being an ALS patient.

Open Funding: The last piece of the puzzle is open funding for the open science programs. “Crowdfunding” uses the collective financial contributions of the crowd to raise capital for innovative programs and projects that are not readily funded through traditional financing mechanisms. It democratizes science in full, and gives both patients and patient-supporters the ability to be the most important part of the solution, to choose what solutions will be created – for them!

Our Fund the Prize crowdfunding campaign raises the prize money for the ALS Stratification Challenge. It is the first of its kind effort to make the path for accelerating drug development completely open access- the patient data is open data, the research is open science and the funding is Open funding. We are already happy to have close to 100 donors from all over the world, including both researchers, ALS patients and several drug companies.

See how open funding enables open science in our Fund the Prize campaign

Supported by researchers, patients, and drug companies alike, these initiatives might well demonstrate the way drug development will look like in the not so far future. Open data, open science, open funding — Each of these concepts has the potential to enable activities that would not be possible in the closed scientific and financial worlds of the past. Together, they create a wholly new path to spurring innovation in biomedical research- a path that patients can lead themselves, and everyone can join.

Image via Smart Design / Shutterstock.

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Interview with Toni Alika Hickman – Songwriter, Singer, Stroke Survivor http://brainblogger.com/2014/11/15/interview-with-toni-alika-hickman-songwriter-singer-stroke-survivor/ http://brainblogger.com/2014/11/15/interview-with-toni-alika-hickman-songwriter-singer-stroke-survivor/#respond Sat, 15 Nov 2014 17:45:17 +0000 http://brainblogger.com/?p=17620 Toni Alika Hickman is not only a talented singer-songwriter; she is the survivor of two brain aneurysms and a stroke. Born in New York, raised in New Orleans by the streets and a single mother who both worked and went to school, she was on her own at the age of 15. Writing poetry was her escape. She soon realized that she could turn her poetic works into hip-hop. Her “street music” got her signed to Suave House Records where she features on gold and platinum albums. Here, I interview her on her latest single People Pleaser.

What inspired you to create People Pleaser?

Many things inspired the creation of People Pleaser. As my mother’s only child, I ended up in many situations where I was in fact a people pleaser myself. However, when I became partially paralyzed, that’s when I was faced with a mirror of understanding and accepting the whole concept of how important it is to love yourself. So many people with disabilities have had to face the wrath of people who unconsciously believe they are better than them. We have all at some point wanted people to like us… to be pleased with us… we actually live in a world that also promotes a better than/less than way of thinking. And while this way of thinking has inspired much needed growth in myself, it has also inspired the insecurities that can sometimes be attached with being “less than perfect.”

How can other artists (and the music industry) share in your vision?

The music industry is full of amazing artists who are in the process of doing their own people pleasing. Most of the music that is on radio is only promoting love, sex, disrespect of women, material objects and loneliness. This is also the music that sells, thus creating a world that mirrors this exact reflection. Good music can actually heal the world, and even though I love many of the artists on mainstream radio, I would love to see record labels push more music that is beyond these four subjects. I won’t say the music isn’t out there, it definitely is; it’s just that we don’t hear it on the radio much.

Toni Hickman 2Which artists do you look up to?

So many artists I can’t name them all. As far as artists who are mainstream, I love Mary J Blige, Tupac Shakur, Stevie Nicks, Erykah Badu, Alanis Morrisette, B.B. King, Buddy Guy, Raheem Devaugn, Coldplay, Pink, Kem, Mark Anthony, Kendrick Lamar, Stevie Wonder, Marvin Gaye, and sometimes Drake. The list changes as I change. There is an artist named Rapsody that my producer Big Yo turned me on to. She is a great lyricist and I would love to do a song with her as well as many others.

What music already out there is in line with your theme?

Kendrick Lamar’s I (I Love Myself), Taylor Swift’s Shake It Off, Meghan Trainor’s All About The Bass (even though she is dissing us skinny girls, I like the concept of loving and learning to except yourself as is), Echosmith’s Cool Kids, Pharell’s Happy, and Sia’s Chandelier.

Toni Hickman People PleaserDo you have any closing remarks for our readers?

Even though I’ve had two brain aneurysms and a stroke that partially paralyzed my right side, I haven’t and won’t let that stop me from accomplishing what some may think is impossible. I am now a speaker for the American Heart Association and Krip-Hop, as well as an independent motivational speaker and performer that has chosen to not box myself into one way of thinking. Learning to love yourself takes courage, people pleasing is easy. My motto is, “I do the impossible all the time!”

People Pleaser is now available on iTunes and other sites. #loveyourself.
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Multifaceted Causes of Obsessive Compulsive Disorder http://brainblogger.com/2013/07/13/multifaceted-causes-of-obsessive-compulsive-disorder/ http://brainblogger.com/2013/07/13/multifaceted-causes-of-obsessive-compulsive-disorder/#comments Sat, 13 Jul 2013 11:00:09 +0000 http://brainblogger.com/?p=14903 Obsessive compulsive disorder (OCD) is an anxiety disorder which is characterized by intrusive thoughts (obsessions) that result in worry and repetitive behaviors (compulsions) aimed at alleviating the anxiety. While most of us have run back into the house to check the stove was turned off, people suffering from OCD experience these thoughts more frequently, and to the point that it becomes alienating and all-consuming. But what causes it?

While the exact cause of OCD is not completely elucidated, researchers believe that it results from a combination of genetics and environmental factors. Genetic studies have linked a specific mutation in the serotonin transporter gene to the manifestation of OCD. Additional data from studies on identical twins have corroborated these results.

However, the studies also show that genetics accounts for only 40-65% of the risk for developing OCD, thus indicating that environmental factors also play a role in manifestation of the disease. Reports suggest the potential for a number of different environmental risk factors including strep infections, anxiety, emotional instability, depression, handwriting difficulties, behavioral aggression, and oppositional behaviors.

Differences in the physical structure of the brain are also a prominent factor in patients with OCD. In fact, neuroimaging techniques have revealed structural and volumetric abnormalities in the brains of these patients: People with OCD have a patterned increase in grey matter in the brain in certain areas and a decrease in others.

Other studies have examined the role for a potential chemical imbalance in the brain leading to disease symptoms. From a molecular perspective, data show that in fact neurotransmitter dysregulation does play an important role in the manifestation of OCD symptoms. More specifically, reports indicate that the neurotransmitters serotonin and dopamine are associated with the pathophysiology of OCD. Scientists show that patients with OCD may experience an increase in dopamine in the prefrontal cortex and/or a decrease in serotonin in the basal ganglia.

Currently used medications for managing the disorder including Clomipramine (Anafranil), Zluvoxamine (Luvox), Fluoxetine (Prozac), Paroxetine (Paxil, Pexeva), and Sertraline (Zoloft) specifically focus on regulating these neurotransmitter levels in the brain. Selective serotonin re-uptake inhibitors (SSRIs) decrease symptoms of OCD in two-thirds of adults and children who take them.

While there are a number of available medications for treating OCD symptoms, they come with unique risks. Similar to other psychological disorders, the choice of which mediation to use is often the result of trial and error, and drug interactions must be carefully considered. Furthermore, side effects may include an upset stomach, sleep disturbances, sweating, and a decrease in libido. It is hoped that additional research into the causes and molecular mechanism of OCD will ultimately lead to more effective and safe drugs for treating disease symptoms.

References

Cath, D., Grootheest, D., Willemsen, G., Oppen, P., & Boomsma, D. (2008). Environmental Factors in Obsessive-Compulsive Behavior: Evidence from Discordant and Concordant Monozygotic Twins Behavior Genetics, 38 (2), 108-120 DOI: 10.1007/s10519-007-9185-9

Harsányi A, Csigó K, Demeter G, & Németh A (2007). [New approach to obsessive-compulsive disorder: dopaminergic theories]. Psychiatria Hungarica : A Magyar Pszichiatriai Tarsasag tudomanyos folyoirata, 22 (4), 248-58 PMID: 18167420

Kim CH, Cheon KA, Koo MS, Ryu YH, Lee JD, Chang JW, & Lee HS (2007). Dopamine transporter density in the basal ganglia in obsessive-compulsive disorder, measured with [123I]IPT SPECT before and after treatment with serotonin reuptake inhibitors. Neuropsychobiology, 55 (3-4), 156-62 PMID: 17657168

Ozaki N, Goldman D, Kaye WH, Plotnicov K, Greenberg BD, Lappalainen J, Rudnick G, & Murphy DL (2003). Serotonin transporter missense mutation associated with a complex neuropsychiatric phenotype. Molecular psychiatry, 8 (11), 933-6 PMID: 14593431

Image via Milkovasa / Shutterstock.

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Familial Hemiplegic Migraine – Within and Beyond Genes http://brainblogger.com/2013/06/10/familial-hemiplegic-migraine-within-and-beyond-genes/ http://brainblogger.com/2013/06/10/familial-hemiplegic-migraine-within-and-beyond-genes/#comments Mon, 10 Jun 2013 11:00:02 +0000 http://brainblogger.com/?p=14716 Migraine is a common, disabling, and highly prevalent disorder of neurovascular origin, leading to a diminished quality of life in both those affected and their relatives. It’s not an uncommon disorder either, affecting between 12% and 15% in most populations. But what do we understand of migraine’s genetic and non-genetic causes?

Migraine attacks are characterized by a throbbing, often unilateral, headache, accompanied by symptoms such as nausea, vomiting, and sensitivity to light and sound. In about one third of patients, the headache is preceded by an aura phase, consisting of visual and sometimes sensory symptoms, known as migraine with aura (MA) rather than migraine without aura (MO). Migraine is also defined by the recurrence of attacks. As things stand, it is largely unknown why migraine patients suffer so many attacks.

Migraine episodes seem to be triggered by specific events, when a certain internal threshold is reached which the nervous system cannot cope with. Internal and environmental factors such as hormonal, emotional, nutritional, physiological or weather changes may act as triggers, leading to the activation of several pathophysiological mechanisms. However, pathophysiology of migraine is still being widely discussed since it is still not well understood.

Migraine clusters in families and it is well established that it has a strong genetic component. But unraveling the genetic determinants for the common forms of migraine has been challenging, because of its high prevalence and complexity, and because both genetic and environmental factors are involved.

However, genetic studies of familial hemiplegic migraine (FHM), a monogenic subtype of MA have identified three genes of importance. All of these genes code for ion transporters: one is a calcium channel subunit gene (CACNA1A), one is a sodium potassium pump subunit gene (ATP1A2), and one is a sodium channel subunit gene (SCN1A).

FHM is a rare form of migraine with aura characterized by reversible motor weakness (hemiparesis). With the exception of motor weakness, FHM episodes are similar to MA. Typically, at least three or four aura symptoms occur during an FHM attack (frequently in the temporal order: visual, sensory, motor, aphasic). To be considered as familial, at least one first or second degree-relative must have also hemiplegic migraine.

The familial clustering of migraine is largely assessed by calculation of relative risk (RR), although twin studies have also been reported. Methodological differences have provided variations in familial aggregation results, evaluated by calculation of RR, ranging from 1.5 to 11.8.

RR estimations suggest that familial factors — environmental and/or genetic — account for less than half of all cases, and that RR is higher in families of affected relatives. A pivotal study showed that there is an increased disease risk for relatives, with first-degree relatives of those with MO having 1.9 times the risk of MO and 1.4 times the risk of MA; while first-degree relatives of those with MA have nearly 4 times the risk of MA but no increased risk of MO. Earlier onset and greater severity of migraine are associated with higher familial aggregation.

Another intriguing question that has been addressed is how characteristics such gender can influence RR estimation. In addition, higher risks have also been shown among siblings from three-generation families with MA, when compared to families with fewer generations. One study presented young age, female gender, no education, familial history and high workload as factors of increased risk for migraine. Therefore, despite its name, familial hemiplegic migraine is likely to be influenced by different genetic and non-genetic factors.

References

Hansen JM, Hauge AW, Ashina M, & Olesen J (2011). Trigger factors for familial hemiplegic migraine. Cephalalgia : an international journal of headache, 31 (12), 1274-81 PMID: 21784774

Montagna P (2008). The primary headaches: genetics, epigenetics and a behavioural genetic model. The journal of headache and pain, 9 (2), 57-69 PMID: 18345478

Pelzer N, Stam AH, Haan J, Ferrari MD, & Terwindt GM (2013). Familial and sporadic hemiplegic migraine: diagnosis and treatment. Current treatment options in neurology, 15 (1), 13-27 PMID: 23203776

Pietrobon D (2007). Familial hemiplegic migraine. Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics, 4 (2), 274-84 PMID: 17395138

Stovner LJ, Zwart JA, Hagen K, Terwindt GM, & Pascual J (2006). Epidemiology of headache in Europe. European journal of neurology : the official journal of the European Federation of Neurological Societies, 13 (4), 333-45 PMID: 16643310

Image via Evgeny Atamanenko / Shutterstock.

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What is Creativity? Art as a Symptom of Brain Disease http://brainblogger.com/2012/09/23/what-is-creativity-art-as-a-symptom-of-brain-disease/ http://brainblogger.com/2012/09/23/what-is-creativity-art-as-a-symptom-of-brain-disease/#comments Sun, 23 Sep 2012 11:00:40 +0000 http://brainblogger.com/?p=13215 We don’t normally associate creativity with brain disease, but a recent paper published in Brain suggests that maybe we should. When we think of someone affected by a serious brain disorder, we imagine deterioration and loss of function, but a surprising new study shows that some people may actually develop artistic talent as a result of their brain disorder, and that in turn, their art can tell us about the nature of their brain disorder.

This recent review by Schott brings together cases of individuals with neurological conditions, who with no previous artistic motivations suddenly become compelled to make art, and the art is good!

The authors describe a case of an epileptic man with no artistic ability who began to suffer recurring epileptic attacks in which he acted aggressively, could not speak or focus his eyes, and acted out of character. During these attacks, the patient began to draw spontaneously and compulsively, and with remarkable skill. In another case, a 68 year-old man had begun to paint at age 56 with the onset of dementia, despite never being interested in art before. In the ten years that passed after the onset of his dementia, his paintings became more and more detailed, colorful, precise and realistic, and he even began to win awards for his art.

Both these cases highlight the importance of context in understanding how art can tell us about brain disorders. The onset of uncharacteristic artistic behavior or the compulsive desire to create art where there has been no desire before might indicate an emerging neurological abnormality. Similarly, in people who already have creative ability, dramatic changes in style (e.g. from abstract to realistic) can indicate the onset or progression of brain dysfunction.

But how can these unusual events tell doctors about the patient’s underlying condition? In these and most other cases of emerging artistry, involvement of the left anterior temporal lobe appears to be crucial. The temporal lobe and frontal brain regions work together and are involved in creativity. Damage or degeneration of temporal regions can release the temporal lobe’s inhibitory influence on the frontal cortex, resulting in enhanced creativity. For example, a magnetic resonance imaging (MRI) scan of the elderly man with dementia revealed severe damage to the temporal lobe, while his frontal brain regions remained intact.

Similarly, an imbalance between left and right hemisphere activity appears to affect creativity. For example, in the case of the epileptic patient, based on his unusual behavior, neurologists deduced that the seizures were originating in the left frontal hemisphere. Depression of the dominant, logical left-brain regions during his seizure had caused the “release” of the more creative right brain, resulting in his unusual artistic ability.

These interesting case studies offer a new perspective on the way we study brain disorders, and challenge our understanding of creativity. The neural networks involved in creativity are delicately balanced. Disruption of this network can lead to the surprising and counter-intuitive emergence of new artistic talent; talent that is regarded by many to be a skill that is learned over years of practice. What makes some people artistically talented and others not? Practice or innate ability? The relevance of the age-old debate, ‘nature versus nurture?’ is brought to the fore by these cases, and points to the emergence of an exciting new, interdisciplinary field of neuroscience research.

Reference

Schott GD (2012). Pictures as a neurological tool: lessons from enhanced and emergent artistry in brain disease. Brain : a journal of neurology, 135 (Pt 6), 1947-63 PMID: 22300875

Image via IgorGolovniov / Shutterstock.

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Interview with the Woman who Changed her Brain http://brainblogger.com/2012/08/28/interview-with-the-woman-who-changed-her-brain/ http://brainblogger.com/2012/08/28/interview-with-the-woman-who-changed-her-brain/#comments Tue, 28 Aug 2012 11:48:47 +0000 http://brainblogger.com/?p=13295 Barbara Arrowsmith-Young life’s work has been a quest to develop programs that use the principles of neuroplasticity to strengthen underlying cognitive functions in the brain that impact learning. Today she can assess, and has programs to strengthen, 19 cognitive areas of potential learning dysfunction. In her book, The Woman Who Changed Her Brain: Stories of Transformation from the Frontier of Brain Science, she chronicle’s the brain’s ability to change. Through the practical application of the principles of neuroplasticity — simply put the brain’s ability to change as the result of mental exercise — we can change the brain’s capacity to learn and to function and this can happen throughout the lifespan.

Combining her own dramatic personal story with case histories from her three decades as a researcher and educator, Arrowsmith-Young unravels the mystery of how the brain mediates our functioning in the world.

SL: How did you come to realize you had severe learning disabilities?

BAY: In grade 1, at six years of age, I remember listening in quiet horror as my teacher informed my mother that I had a mental block and that I would never learn like the other children in my class. As children do, I understood this truth quite literally, believing that a chunk of wood was lodged in my brain. The teacher was almost right. The word block missed the mark, but blockage was pretty close. For the first twenty-seven years of my life, I lived in a dense fog.

I reversed numbers and letters, struggled with reading and writing, and could make no sense of the relationship between the big and little hands of an analogue clock. Asked to perform the simple addition of a small two-digit column of numbers, I would randomly choose numbers from the left or right side. The logic of basic math, the concept of telling time, the ability to truly comprehend what I was hearing or reading: all eluded me. On the playground, I couldn’t follow conversations or the rules of simple games. I could hear the words, but people might as well have been speaking a foreign language — as I was later to learn the part of my brain that interpreted meaning was not working properly, my translator was broken.

I was labeled “slow” and “difficult.” My first grade teacher, convinced I was being deliberately stubborn, administered the strap.

Some parts of my brain responded like a finely tuned musical instrument; others were not to be relied upon. There was no language then to describe my condition. The phrase learning disabled would not be coined until 1962 by a Chicago psychologist named Samuel Kirk and not come into common usage until the late 1970s. Fifty years ago, when I was a child, you were seen as smart or slow or somewhere in-between. The belief then was the brain you were born with was fixed and hardwired and so I was told I had best learn to adjust to my limitations.

I became a workaholic in grade one, studying before I left for school in the morning, over the lunch hour, and as soon as I got home from school, just to stay afloat in an incomprehensible world. I could not understand cause and effect, so felt buffeted by random events, unable to see the ‘why’ of things. As I advanced from grade to grade, the going got harder and I had to double and redouble my efforts.

Not only was I cut off from understanding the world of language, I had other brain deficits that meant I could not excel in sports. I would misjudge where my body was in space so constantly ran into things, bruised my body, chipped teeth and took stitches — my whole left side felt alien to me, almost as if I had suffered a stroke at birth. I had difficulty registering sensation on the left side of my body, was “accident-prone,” and a long series of mishaps had left a roadmap of scars on my body and my psyche.

I felt there was no arena in which I could be successful, there were no solutions on the horizon, there were periods of despair, and suicide was contemplated as a way to end the pain of the struggle.

SL: How did you manage to cope with your neurological deficits and eventually complete graduate-level studies?

BAY: Along with my crippling learning deficits, I was gifted in some areas. I had a verbatim auditory memory and a visual photographic memory. I came to rely on memory to absorb what was required to pass exams, literally memorizing my notes and textbooks and matching the exam question with what I hoped was the correct answer from my store of memorized information. I also was strong in what is now referred to as ‘executive functions’ — the myriad of processes that the prefrontal cortex, both in the left and right hemisphere, are responsible for. This was the engine that kept driving me to seek a solution to my problem and eventually lead me to put together the two lines of research I happened upon when in graduate school which provided the solution to my problem and became the basis of my life’s work.

SL: How did you connect neuroplasticity studies in animal models and humans to your own life?

BAY: In 1977, when I was twenty-five years old I happened upon a book The Man With a Shattered World: The History of a Brain Wound written by a Russian neuropsychologist, Alexander Luria, and began reading the account of Zazetsky, a Russian soldier who had suffered a brain wound. As I read his words, “I’m in a kind of fog all the time… All that flashes through my mind are images, hazy visions that suddenly appear and disappear.” This brain-damaged soldier was describing himself but he was also describing me. I was dumbstruck, I am living this man’s life I thought.

Neither of us could tell time. Trauma inflicted on a particular part of Zazetsky’s brain resulted in his losing the ability to tell time. But where a bullet had inflicted the damage on this soldier’s brain, I entered the world with my brain as part of my genetic baggage.

I now had an explanation for my years of struggle. Here was evidence that my learning disabilities were physical, with each one rooted in a specific part of my brain. This realization marked the turning point in my life. Despair turned into determination to hunt for a solution to this ‘brain’ problem.

The problem, for both Zazetsky and me, lay in the left hemisphere at the intersection of three brain regions — the temporal (linked to sound and spoken language), the occipital (linked to sight), and the parietal (linked to kinesthetic sensations). Both Zazetsky and I saw perfectly well and heard perfectly well; making sense of what we saw and heard was the issue.

During this time, I came across the research of American psychologist, Mark Rosenzweig, at the University of California at Berkeley. He demonstrated that the brain (of rats) can physically change in response to stimulation, what we now refer to as ‘neuroplasticity’. If a rat could change his brain as a result of very specific stimulation, I had to believe that a human could do the same. I married the work of Rosenzweig and Luria in order to create an exercise to change my brain.

I had no idea whether this might work, but I had nothing to lose but time. And this, I had already lost. Luria explained that people with lesions in this cortical region (the juncture in the brain of the parietal-occipital-temporal lobes) had difficulty telling time on an analogue clock. I wondered, therefore, if a clock-reading exercise might stimulate this part of my brain.

I created flash cards, not so different from the ones my mother had used with me in Grade 1 to teach me number facts. Since I could not accurately tell time, I had to use a watch and turn the hands to the correct time (with a friend’s help), and then draw the clock face. I would do the exercises every day for up to twelve hours a day, and as I got better at the task I made the flash cards more complex. The goal was to make my brain work exceedingly hard at interpreting relationships and over time what I found was that I could begin to interpret relationships in what I read and what I heard — and this had been impossible for me before doing this work.

SL: How did you apply your knowledge of neuroplasticity into the Arrowsmith School and Program?

BAY: When I saw the results of doing this mental exercise – being able to understand text as I read it, grasp conversations as they unfolded in real time, see points of logic in mathematics, follow reasoned arguments, all things that with the best effort in the world, I had never been able to do before, I knew something fundamentally had changed in my brain to allow me to grasp and process relationships. I knew there was beneficial value in putting together Luria’s work of identifying the function of different brain areas and Rosenzweig’s work of stimulating function, and went on to create exercises to work the function of other areas that had caused me problems – my penchant for getting lost (even in buildings) to my lack of coordination and clumsiness that led to lots of physical injuries. As I worked my way through these mental exercises, I saw changes specific to function of these areas – I could read maps, create maps inside my head, navigate through space without getting lost and I could move through narrow spaces without bumping into things, I could use the left side of my body in an efficient and coordinated manner, no more accidents.

This then became my quest, to apply what I had learned from my own experience, to use this research to create additional exercises to stimulate and strengthen more and more cognitive functions, with some of these creations being discarded, until I developed programs for a broad range of problems (19 to date) covering auditory memory, memory for symbols, memory for objects and faces, motor planning in writing, sense of number/quantification, non-verbal interpretation, reasoning, thinking/strategizing/ problem solving, kinesthetic perception of the body in space, spatial reasoning and mechanical reasoning.

In 1978 I began applying these programs to children struggling with learning disorders in an after school program and in 1980 I founded a private school to further develop, refine and deliver programs to children, adolescents and adults. The program continues to be refined based on the performance of the thousands of individuals who have been involved in the work.

The philosophy that the learner is not fixed, but can be modified through the application of the principles of neuroplasticity sets the Arrowsmith Program apart from the majority of other programs for students with learning difficulties. The Arrowsmith Program is capacity based in that it changes the cognitive capacity of the student to learn, rather than compensatory which tries to work around the problem. Strengthening these weaker capacities increases the overall functioning of these specific cognitive areas, allowing them to be used more effectively for learning.

Barbara Arrowsmith-Young holds a B.A.Sc. in Child Studies from the University of Guelph, and a Master’s degree in School Psychology from the University of Toronto (Ontario Institute for Studies in Education). She is the Director of the Arrowsmith School and Arrowsmith Program. Her life’s work has been a quest to develop programs that use the principles of neuroplasticity to strengthen underlying cognitive functions in the brain that impact learning. Today she can assess, and has programs to strengthen, 19 cognitive areas of potential learning dysfunction. The program originated in Toronto in 1978 and today is implemented in 35 schools in Canada, Australia and the U.S., including New York, New Jersey, Pennsylvania, Michigan, Florida, Georgia, California, and South Carolina.
For more information on the book visit http://www.barbaraarrowsmithyoung.com and on Arrowsmith School and Arrowsmith Program visit http://www.arrowsmithschool.org.
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My Nephew and his Brain, Part 4 – Their Life Today http://brainblogger.com/2010/03/18/my-nephew-and-his-brain-part-4-their-life-today/ http://brainblogger.com/2010/03/18/my-nephew-and-his-brain-part-4-their-life-today/#comments Thu, 18 Mar 2010 12:00:54 +0000 http://brainblogger.com/?p=3786 Continued from Part 3. After the surgery we were hopeful, that with a few limitations on his left side, my nephew would have a fairly normal life. Unfortunately, this was not to be. The faulty electrical impulses that had caused his seizures had migrated to the left lobe and a few days after surgery the seizures returned. It was true that they were milder than they had been before; he no longer stopped breathing when he had them, so some good had definitely come out of his surgery experience. They weren’t gone, however, so he spent another month in the hospital as the doctors tried a staggering amount of drug cocktails on him trying to figure out the best combination for controlling his seizures. None of them worked perfectly, though, so even today at the age of seven, he still has multiple seizures a day.

Under that kind of duress, his brain hasn’t been able to develop and he is pretty much an infant in a little boy’s body. He can’t walk or talk, and he has myriad medical problems due to his developmental difficulties. He has a problem with coughing, so mucus builds up in his lungs and he has been hospitalized many times for pneumonia. He has had hydrocephalus and now has a shunt that moves cerebral-spinal fluid from his head into his digestive tract. Because he has trouble swallowing, he is fed through a tube with a liquid diet and his digestive troubles have landed him in the hospital at least twice. He also has more doctors and specialists than an HMO, and his daily medication regimen keeps his local pharmacy in business.

But, in spite of everything, he has the most beautiful smile in the whole wide world, and even though he is limited in how much can tell us, that smile tells us when he is having fun and enjoying life. We try to do everything we can to coax out that smile, and we have found that adventures with his family can make it appear faster than anything. So, my nephew has been to Walt Disney World, Canada, the Bahamas, Mexico, the Grand Canyon, and just this last summer, Australia, in addition to his numerous trips all over the country to visit relatives. And, it is our sincere hope that we will be able to have many, many more adventures with him for the rest of his life because this kid is truly one of a kind.

Editor’s note: this is the fourth and last part of a series offered by Flummerfelt. Read parts one, two, and three.

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