The Speak Up blog features essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
Monday, October 13, 2014
At 21, I thought I had the world at my fingertips. I was confident as I flitted through the streets of Paris, my new home, with visions of my future in fashion whirling around my head. I never dreamed that it would come crashing down around me. Cluster headaches – it’s a very unassuming name for a very vicious ailment.
Those who suffer from cluster headaches wince at the mere mention of the words, while loved ones who can only watch helplessly try to understand. The remaining majority of people cannot begin to comprehend what we unfortunate few endure. There is information out there, if you know where to look, but how many of us really research every illness that plagues our family and friends?
I want to give a glimpse into my world because, more than anything, people who experience cluster headaches want to know that someone out there understands.
I am no stranger to pain. Half of my childhood was spent sitting on the sidelines of PE class with a cast or a bandage on one part of my body or another, until I learned how to really injure myself in my sport of choice – equestrian. I earned myself three months in physical therapy after a bad accident, not to mention years of chronic sinusitis, which tested the limits of my pain threshold. But my strong will – what some might call stubbornness – never let me give in, and with the cockiness that comes with adolescent delusions of invincibility, I continued to live my life with nothing more than a slight grimace when no one was looking.
Last year, however, when I first felt the searing pain and the pressure behind my swollen and drooping right eye, I knew this was different. For the first time, I felt helpless and completely consumed by the pain.
When a doctor first diagnosed me with cluster headaches, I was relieved. I’d experienced weeks of pain that brought me to tears as I screamed and pulled my hair out, imagining how I would look with a shaved head after the doctors removed the tumors that I was sure were causing this inferno. Yet this diagnosis sounded so harmless. Headaches that come and go in cycles? I’ve dealt with worse, I thought.
When I got home, I immediately scoured the Internet for any information I could find about the condition. In an instant, my relief evaporated: “commonly referred to as ‘suicide headaches,’” “thought to be the worst pain known to man,” “pain often compared to natural childbirth and amputation without anesthesia,” “can become chronic,” “no known cause,” “no definite treatment.”
Quite simply, the name is deceiving. Most people hear “migraine” and they understand the severity of the condition. But even after I experienced this pain – pain worse than I had ever felt – the term “cluster headaches” made me think it was just another headache. Now, after one year and three cycles, the name has a new force and a new meaning to me. But looking back on that first day, I realize that as much as I want others to understand, they, too, need to be informed first.
I had just landed my first job in fashion PR in Paris and was preparing for Men’s Fashion Week when my second cycle hit. One morning I woke up with that completely unique pain behind my eye and I knew that I was in for a few rough weeks. The attacks were coming almost nonstop, lasting nearly two hours each with only about half an hour of relief in between. The pain came with such intensity that I don’t know how I managed to work those 10 stressful hours each day.
I grew more drained with each passing day, anticipating the few precious hours when I could expect relief. I was always anxious and fearful of the next big hit. I was not sleeping and could barely eat. I was getting confused and having trouble focusing, making mistakes that I would normally never make. There were times when I could barely even talk. My only saving grace was the fact that in the fashion industry, it’s acceptable to wear big sunglasses at all times, so I could disguise the fact that my right eye was swollen, drooping, red, and watering.
Pills, injections, numerous visits to neurologists – nothing could put an end to my misery. Then, five weeks later, the attacks were gone as suddenly as they had appeared.
Four months later, the demon has returned, and so far I have endured three months of non-stop pain. With each new cycle a new facet of this ordeal seems to arise. Finally, I found hope in the form of a little pill that has dulled the roar by a decibel or two, although the “supermodel effect” of extreme weight loss and diminished intelligence and memory is far from desirable.
The hardest thing to deal with – what I am constantly trying to fight – is the fact that the cluster headaches seem to be slowly sapping my zest for life. The emotional and physical strain leaves little room for the bountiful energy I once had. I am very fortunate to be surrounded by supportive and caring people, but it hurts me to realize how this is affecting them, too. The ones who truly understand realize it is not personal when I become anxious and do not want to be touched or spoken to, when I isolate myself with my pain and frustration. Others expect the “headache” to pass like any other, and urge me to put on my game face and my little black dress for cocktail hour. Friends occasionally offer me Tylenol, as if that was the secret treatment all along. Some friends are simply tired of hearing my excuses; others feel helpless themselves.
It is said that what doesn’t kill you can only make you stronger, but I feel a piece of me being etched away with each attack. My strongest trait was always my unshakable confidence; I could once proclaim without a doubt in my mind, “I can do anything I put my mind to!” Slowly that exclamation point is starting to take the brunt of each painful blow, becoming a question mark instead. I am frustrated, confused, and angry. There are times I get depressed and find solace only in being alone. I do not mean to shut people out, but I feel as if I don’t have room in my head for anything but the pain that is holding it hostage.
I recently had a reality check when a good friend was diagnosed with cancer. I realized that I should be thankful that although I live in constant fear of the pain, I do not have to live each day fearing for my life. And although the effects on our lives can be devastating, I remain hopeful that as long as we are alive to expose our troubles to those around us, we can begin to make a difference.
If you are a sufferer, don’t be afraid to talk about your condition with friends, family, and colleagues – and despite your pain, realize that they are affected too. If you recognize these symptoms in a loved one or an employee, be open to what they have to tell you and try compromise so that everyone might suffer just a little less.
And if you’re a pharmaceutical company, please find us drug that works!
Monday, October 06, 2014
Our family gathered in Providence for our fourth child’s college graduation. It was 1998. Summer was upon us. My husband, Fred, began reminding me to stand erect and to swing my arm as I walked. Taking offense, I ran into the surf, ignoring the exasperation in his voice.
It had become a joke that I struggled to roll over in bed. Was this a normal part of the aging process? In silk pajamas, I was able to roll with no difficulty. My husband vowed to buy me only silk and satin nightgowns. My right leg was frequently unresponsive – it felt as though there were a light weight attached to it. Chills ran down my spine, leaving my hands clammy and my mind foggy with worry. We knew that something was wrong, but my denial became the biggest problem.
In October, we traveled to Southern California for a family wedding. The Sierra Nevada Mountains loomed in the distance. It was a perfect day to celebrate. Fred and I were dancing on the tennis court when a tap on his shoulder interrupted us and a voice asked to dance with Dad. I sat watching father and daughter glide across the floor, engaged in intense conversation. As the music ended, they walked toward me with serious expressions.
My daughter, Kristen, who has a clinical background in occupational therapy, asked me to promise to call a neurologist as soon as I arrived in Boston. Eight months had passed since I had last seen my daughter, and the changes in my movements had become sufficiently noticeable.
I was diagnosed with Parkinson’s disease within the next six months. Not yet 50, I was a young-onset recipient of a degenerative brain disease with no cause and no cure. Immobilized by the verdict, I temporarily shut down. For three years I kept it a secret.
Why me? I asked over and over in my mind. I was the healthy person who ate nourishing food, never smoked, drank wine modestly and worked out regularly. As a respected first grade teacher, I was reluctant to let parents know about my diagnosis for fear they would ask to have their children placed in other classrooms. I retired from my lifelong profession earlier than planned, never expressing my fears.
Then I began to recover, in mind and in spirit. I was determined to move on. I became involved in a support group, and I read every book I could find on Parkinson’s disease. Our eldest daughter, as well as extended family and friends, participated in their first Parkinson’s Walk in 2003. Our three distant kids, scattered across the globe, hiked mountains, ran marathons, and climbed rocks for Parkinson’s.
At that time David, our youngest, was in New Zealand, climbing the Southern Alps. He met another climber at the summit, and the two young men conversed. David discovered that John was studying in New Zealand and hailed from England. David said he was climbing in honor of his mother, who had Parkinson’s disease. John looked shocked. He explained that he, too, was climbing for a mother with Parkinson’s disease. Both mothers were educators, and had been 49 years old when diagnosed.
The two young men descended from opposite sides of the mountain, invigorated with unexplained energy. What had compelled them both to hike into the wilderness and exchange stories high upon a ridge, 10,000 miles away from home?
My children still challenge me to join in their outdoor adventures. I encourage Parkinson’s patients to educate themselves about their disease, to accept challenges and to exercise daily. I am blessed to have a support system of family, friends, medical professionals and Parkinson’s colleagues. Each day dawns as a gift. The greatest treasures, my four grandchildren, have infused my spirit, engulfing me with their unconditional love. As my disease progresses, I nevertheless see a future overflowing with hope and promise.
Maureen M. Chamberlain
Maureen Chamberlain is a retired first grade teacher. She recently accepted the position of President of the New Hampshire Chapter of the American Parkinson’s Disease Association. Writing has always been her passion, and she finally has the time to write the anecdotal stories that have accumulated in her journals over the years. When she is not writing, Maureen kayaks, swims, cross-country skis, hikes, takes photographs, and spends time with her grandchildren in Rhode Island, Colorado, and California.
Wednesday, October 01, 2014
I woke up in Milwaukee and thought, “I wonder how I got here.” I was confused, and not in Milwaukee at all.
I found out I had had a stroke, but it took me several days to realize it. When I finally regained my sense, I accepted that I could not walk or use my right arm – but I was confused because no one could understand my speech. In the past I prided myself on my ability to communicate, but now no one could understand me.
Before the stroke, I had been a senior project manager at Xerox and Zurich Insurance, and for 21 years had been employed by CNA in various positions. I had a wife, two kids, and a house in the suburbs. I rode my bicycle around 2,500 miles per year. I was happy. To my knowledge, I didn’t have an enemy in the world.
To paraphrase a line from the Wizard of Oz, “It’s not how you love, but how much you are loved by others.” That fit me to a tee, but it took the stroke for me to realize that. I received hundreds of letters, cards and emails. They are still coming, and it’s been almost two years.
Over time, I learned I had a brain disorder called aphasia. I learned it had no known cure, and I would just have to learn to live with it. The news was devastating; I was locked inside my body, unable to communicate.
Aphasia does not affect intellect, and that’s what’s so frustrating about this disorder. Because aphasics speak haltingly or not at all, people often assume they are mentally ill or mentally challenged. It is one of the most heartbreaking and devastating of disabilities; I know because I have difficulty communicating with my two young sons.
But my aphasia has a bright side. I made several friends that I would never have made if I didn’t have aphasia. My relationship with these new friends is very different from the friends I made before I had aphasia. They understand what it’s like to have this disability, and I feel like there is a common bond between us. I am somewhat uncomfortable with someone who has not had aphasia, because they do not know what it’s like to struggle with every word you speak.
Through hard work and perseverance, my aphasia has improved with time. But I’m not nearly back to my old self. I can think something, but I cannot say it or read it or write it. My mind has a will of its own. Along with my wife, I am now participating in a project sponsored by Northwestern University. It is called the Midwest Regional Aphasia Conference. I am also volunteering my services to many studies at the Rehabilitation Institute of Chicago (RIC), and I am in several writing exercises and conversation groups.
Before my stroke, I was into bicycle riding in a big way. Recently, my cycling buddies bought me a high-performance tricycle. Last summer, I rode more than 1,000 miles, and I plan to do more this coming year. When I’m riding, I feel like I never had a stroke. I feel free!
I’m learning to accept that I will never get back to the way I was. I have to realize that I’m stuck with aphasia, but I can’t let my disability get me down or give up. I’ve made new friendships, reaffirmed some old ones, become closer with my wife and children, and have become more reflective in my way of thinking.
My stroke and aphasia have taught me several things. For starters, don’t worry about the little things. Second, don’t fear death – now that I have been near it, death doesn’t scare me anymore. And three, enjoy life. It is precious.
Prospect Heights, IL
Monday, September 29, 2014
I applaud Neurology Now for your article on medical marijuana in the June/July 2014 issue (“Medical Marijuana”; http://bit.ly/NN-MedicalMarijuana).
When dealing with neurological disorders, I believe that we must explore every avenue of treatment, and medical marijuana seems like a relatively benign form of treatment for epilepsy when compared to some of the more potent drugs that are prescribed.
As the parent of a child with epilepsy, I don't believe that the side effects of medical marijuana would be any more severe than the nightmares, depression, and memory loss that my daughter experienced after taking both Lamotrigine (Lamictal) and Carbamazepine (Tegretol, Equetro).
I do agree that more research needs to be done, but we should not delay researching the benefits of marijuana as an effective treatment for neurological disorders solely due to the social stigma that is associated with it.
Morris Plains, NJ
THE EDITOR RESPONDS: We agree that more research needs to be done about medical marijuana, Gerald. We hope to follow and continue to cover developments in this area in future issues of Neurology Now.
Friday, September 26, 2014
The article, “It Takes a Team” from the August/September 2014 issue (http://bit.ly/NN-ItTakesATeam) is missing a team member. The article had some good information concerning caregivers, but I felt it was lacking mention of a chaplain.
As a board-certified chaplain, I am trained to encourage people to identify and take care of their own needs, help people connect with their inner strength and explore and give voice to their feelings, accompany them into uncomfortable places so they can deal with spiritual angst, and reflect with them on the path that lies ahead. I am also the only team member who is professionally trained to deal with guilt and shame, feelings that may arise during this stressful time.
All of these concerns are spiritual needs that are common to everyone, regardless of religious affiliation. However, chaplains can also offer comfort through religious rituals such as prayer, anointing, scriptures, and hymns, if that is desired. Most hospitals have chaplains in-house or can refer patients to clergy, and all hospice patients are offered a spiritual care counselor as part of their caregiving team.
Please encourage newfound caregivers to avail themselves of this valuable resource. Board-certified chaplains often must have a three-year Master’s degree, a one-year internship and residency, and another year of successful practice before they can apply for board certification. Aside from doctors, they are one of the most highly trained members of the caregiver team.
Connie Regener, M.A., M. Div., BCC
Congratulations for your new department, “For the Caregiver.” This gives much-needed assistance to the many dedicated caregivers who expend energy, time, and goodwill to care for family/friends who suffer from neurologic illness.
Your explanation of the therapeutic roles of neurologists, neuropsychologists, physical therapists, speech pathologists, and other team members is an eye-opener for new caregivers who don’t yet know the full team of professional helpers involved in the daily struggles of a caregiver. Your list of supportive caregiver organizations is an “open sesame” of information and aid to the hard-working caregiver.
Leo Shatin, PhD
Thank you for the caregiving information in your magazine. I know from first-hand experience how important this information is to caregivers. Following a loved one’s stroke, I learned how truly devastating this can be, both for the person and their families. Several lives are changed in an instant. I received much support and encouragement from the local stroke support group.
I would encourage anyone, especially those with a new neurological issue, to join a group. There, people understand, and often have suggestions regarding helpful resources.