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Speak Up
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.
Wednesday, April 09, 2014
In the February/March 2014 issue of Neurology Now, Editor-in-Chief Dr. Robin Brey asked readers to share their strategies for falling asleep. We received many responses. Here are a few we selected to publish. Thank you to everyone who responded!
 
 
In the February/March 2014 issue, the article “Sleep Well” (http://bit.ly/1eSAndW) included a link to other articles from Neurology Now on sleep disorders. However, the link doesn’t seem to be working. Would you let me know the correct link?
 
— Lynn Richardson
 
THE EDITOR RESPONDS: The link appears to be working. Here it is again: http://bit.ly/1hIPHuV.
 
I am giving this issue to a student in my yoga class who uses yoga and meditation to help manage her multiple sclerosis. The article on sleep particularly intrigued me. In “From the Editor” (http://bit.ly/Mvvr2Q), Editor-in-Chief Dr. Robin Brey asked readers to send tips on sleeping well. I have been teaching yoga for 20 years, and I sometimes recommend “legs-up-the-wall” pose for insomnia. One lies in bed backwards or on the ground if possible with the legs up a 90-degree angle for 10 to 15 minutes. I have had great experience with this safe and gentle pose. I also like to read a psalm before bed, as it gives one a sense of peace and safety to know God is there with you.
 
—Carol Serna
Jupiter, FL 
 
This may qualify as a good strategy for preventing sleepless nights. In a 1958 book on folk medicine by D.C. Jarvis, M.D., he suggests two teaspoons of honey as a natural tranquilizer. If that doesn’t induce sleep within 20 minutes, I believe he wrote, take two more. On my occasional sleepless nights, two teaspoons of honey works well. And on the rare occasion when that doesn’t work for me, a little more will.
 
—Robert Seibold
Shippensburg, PA
 
You asked us to tell you how we fall asleep. I’ve used this for years: Pretend a lit candle is held directly in front of your face. The flame flickers as you inhale and exhale. Your job is not to make the flame flicker, so you must make your breath smaller and slower. But the flame keeps flickering still, so you must make your breath even smaller and slower. But that flame keeps on flickering still… so, breathe smaller and slower. Hopefully, good night. This is a yoga relaxation exercise. I’ve used it for years. I’ve gotten so that I can eliminate the visual of the candle and just go to repeating a single word. My word is “slow” over and over.
 
—Martha Walton, RNC
Webster, NY
 
The article “Sleep Well” in the February/March 2014 issue was interesting. Although I don’t have chronic sleep problems, I do have occasional insomnia. I have learned to use a tactic that usually allows me to get sleep quickly.
My insomnia is often brought on by “hot button” issues that keep my mind too active to shut down. Realizing what’s happening, I try to focus on one thought, rejecting all others as they come up. It is very difficult to concentrate on one thought, and as I start the process, I am flooded with intrusive thoughts. After a minute or two, I can more quickly reject them to return to the main subject. That concentration subject is the abstract idea of sleep—abstract because I can’t visualize it. This process is very mentally tiring if done rigorously. Sleep usually takes over shortly. Hopefully this technique will be useful to others.
 
M.E. Sweeney
The Woodlands, TX
 
I have been reading Neurology Now for a few months. I am a 71-year-old fibromyalgic/depressive. There was no mention in the February/March 2014 sleep article on the exploding head syndrome, an apnea-related condition described by Dr. John M.S. Pearce in 1989 (http://bit.ly/1coJ1kr). I wrote Dr. Pearce to thank him for helping me with this awful thing.
I have central hypopneas, which are episodes of overly shallow breathing. I think the basic sleep guidelines you discussed do not apply to everyone. I am a beer drinker; the hops help me sleep. I have also found large late-night meals helpful. Also, I am on a limited, fixed income and live in a small studio apartment. Could you feature some articles on poverty-stricken sick people?
 
—Karen Keys
 
THE EDITOR RESPONDS: Thank you for your letter, Karen. Generally, doctors recommend against consuming alcohol before bedtime; although it will sometimes help a person fall asleep in the short-term, it can lead to dependence. We will also try to include more stories about people with neurologic conditions who are facing poverty. Please see our “Penny Wise” department, which includes stories about managing the cost of care: http://bit.ly/1fHx2is.

 

Tuesday, February 11, 2014

By Beverly Kuzman

 

Some people have a good luck gene. They win raffles; when they select a day for a picnic, the sun shines. Unlike the pessimist who sees the glass as half-empty, their glass is always half-full. I am one of those people. In addition to winning an unusual number of raffles, I have multiple sclerosis (MS).

     Many people would not regard having a disease like MS as evidence of good luck. I assume most people who see me getting around with the assistance of two canes, or who watch me walk like a drunken sailor when I haven’t had a drop to drink, wouldn’t consider me a fortunate person. But luck is often a matter of perspective.

     Nearly 30 years ago, an unwelcome and persistent stranger entered my life. Mister M. Sclerosis was very subtle as he attempted to steal my mobility and independence. First, I began walking with a slight limp; next, I needed one care for stability. Now I walk slowly with two canes, but my unwelcome suitor also opened my eyes to the goodness of people.

     The newspapers may be filled with examples of man’s inhumanity to man, but my view from behind these two canes is quite different. From this point of view, provided courtesy of Mister M. Sclerosis, I see the best of humanity. People open up doors for me and wait while I totter through them. When I’ve been caught in the rain and unable to carry an umbrella, strangers have walked beside me holding an umbrella over me while they are exposed to the rain. One time a friend and I were walking on a busy city street when I tripped and fell flat. A man stopped his truck in the middle of the street, rushed out, picked me up, and then returned to his truck. The world is filled with amazing and considerate people, and I see the best of them.

     If I had the option of life without Mister M. Sclerosis, of course I would choose that. I’d prefer to be a helper, not a person needing help, but my 30-year involvement with this ever-present fellow has been filled with luck.


Tuesday, October 01, 2013

By Dan Dougherty

 

 

In late spring of 1972, I was still a dream of my mother’s.  On June 8th of that year, her dream was fulfilled as I came into the world. However, I gave my parents the unexpected shock of a lifetime: I went into fetal distress, and for four days straight, I experienced non-stop convulsions while I was in the hospital with all these crazy tubes and wires connected to me. It was my stubbornness and the grace of God that allowed me to survive. However, the seizures left scar tissue in my brain.

In spite of that start, I was a relatively healthy boy who loved to play. But when I was 10 years old, I contracted viral meningitis. Then, a few months later, I was sledding in the park and had a seizure at the bottom of the hill. (My doctors think that the scar tissue from the trauma at birth made me more susceptible to seizures later.) The seizure terrified me. The world was spinning and I vomited and screamed. After many tests, I was diagnosed with epilepsy.

I continued to have seizures and experienced the trial-and-error process of trying to find the right medications. Phenytoin (Dilantin) gave me a rash. Phenobarbital made me very, very irritable. These years of trial and error had been frustrating, but a stubborn part of me never allowed epilepsy to knock me down totally. This internal strength and a supportive family allowed me to get through school until I finally graduated from Cheltenham High School in 1991—a lifetime milestone that I’ll never forget.

I went on to take a few part-time jobs until I landed a job at my church for seven years, starting in 1995. During this whole period up to and including 2001, I lived a life of constant tonic-clonic (also called grand mal) seizures, a type of seizure that affects the entire brain. The medications never really helped lessen the seizures until I was put on oxcarbazepine (Trileptal) along with two other antiepileptic drugs.

Finally, with less severe seizures, I had the opportunity to go onto college. I entered Philadelphia Community College but only lasted a week—my sensitive nervous system could not handle the stress of higher education. At the same time, I was taking a medication for seizures that had a side effect that put me emotionally out of control, and I landed in the psychiatric unit of a nearby hospital. This experience forced me to start a journey of individual therapy and antidepressants.

I would like to begin by saying I was not happy making the decision to get therapy.  I walked out of the therapist office a couple times. It is very hard to admit I need help from another person!  I used to say to my therapist, “I’m paying you to listen to what I can tell a friend.” But as the years went by, my weekly therapy sessions—which often resulted in tears—eventually helped me deal with the fact of my epilepsy.

Here I am, 41 years old, fully accepting uncontrolled epilepsy as part of my life. What a peaceful feeling! This could not have happened without my therapist’s help. The bonus of my past experience of 30 years: I am now an advocate and public speaker for people with epilepsy. Only God knows what is next as my life’s story continues to unfold!

 

Dan Dougherty is a trained patient educator and public advocate for the Epilepsy Foundation Eastern PA. He hopes to continue using his public speaking skills to speak up about epilepsy as a guest speaker.


Tuesday, June 25, 2013

By Lillian Gallego

 

In the summer of 2009, after turning 57 years old, I noticed a slight shaking of my left thumb. I thought it was just a twitch and ignored it. Months later, my entire left hand began shaking and continued into my left arm. The shaking became so intense that my muscles hurt. I felt as if there were bees buzzing inside my hand and up my arm; that was the only way I could describe the feeling. There were days when my hand became so stiff that it was hard to hold things. The shaking became worse when I was tired, sick, or stressed. I held my hand in front of me rather than down at my side because it lessened the tremors. I had difficulty sleeping because I was unable to relax. Meeting people for the first time was very painful. I saw them look directly at my shaking hand and then at me.

 

I knew something was wrong and needed help. I went to my M.D., who recommended I see a neurologist. After two MRIs and many tests, I heard the awful words, “You have Parkinson’s disease.” I felt as if I was hit in the chest and couldn’t breathe. Thankfully, my husband was with me or I might have passed out. I was put on medication for stiffness and eventually medication for the tremors.

 

I’ve always been a strong person and felt if you do something, do it to the best of your ability. Be proud of your accomplishments. I’m still the person I was before Parkinson’s disease (PD) and will not let it stand in my way.  I’ve survived divorce, raising two children, and poverty. I will not let this disease get the best of me, stop me, or make me sad. I must continue to fight and be strong.

 

Having a caring and loving family is important to me. They enveloped me in a feeling of security and in a place of safety, knowing my strengths and weaknesses. They are my rock and my strength, taking away the pain, the fear and the stress. The joys in my life are my grandchildren: they’re my best medicine. Just seeing their smiles or hearing them laugh gives me much happiness. All the pain, suffering, and stress are gone, and I feel calm and relaxed. How truly blessed I am to have them all in my life.

 

For the past 35 years, I’ve volunteered and advocated for different organizations. I now advocate for myself and others with PD. Being a member of many PD organizations, I’ve acquired much needed informative information, raise funds for research, and facilitate a support group. In addition, I support many PD organizations, attend walk-a-thons, and communicate with elected officials to support continued research. I converse with many in the PD community around the country. We’ve developed a friendship and bond between us that holds us together with support, strength, and hope. I know I’m not alone in this struggle.

 

Nearly 200 years ago, James Parkinson published the first detailed description of an illness he called “The Shaking Palsy.” Today, an estimated seven to ten million people worldwide live with PD. In the United States, as many as one million people are living with PD. The cost of this disease in the United States alone is nearly twenty-five billion dollars a year. This includes treatments, social security payments, loss of income, medicines, and surgery. Over the years, significant advances have been made in research and treatment. This must continue in order to help the millions who suffer with PD.

 

Thanks to medication, physical therapy, and diet, I am able to lead a productive life. I have found strength again in my mission to help myself and others. Together we stand strong to fight this disease in hopes to someday find the cure.


Wednesday, June 12, 2013

Invisible shackles on my psyche,

thrown into a dark dungeon of mental despair,

hoping light will seep through the cracks and crevices,

providing a new outlook.

This thing called seizures.

They strike unexpectedly with the audacity of lightning

traumatizing my mind with the force of a tsunami

traveling with the speed of light across my brain,

doing irreparable damage.

This thing called seizures.

They represent a padlock on my brain

in which no one has discovered the combination

that may unlock hidden secrets

stored away in the attic of my mind.

This thing called seizures.

I think of ice that has formed into thick bars hanging from my window,

distorting my view of the outside world,

much like a prisoner who may receive a guarded glimpse of the sun

when he receives “good time” for excellent behavior.

This thing called seizures.

They threaten to sap the very energy

that once fueled my ambitions and dreams,

taking up residence in my mind,

accumulating like a one-inch layer of dust.

This thing called seizures.

It can make a sworn optimist see the glass “half empty”

even when it's running over the rim,

once alive with promise and conviction

to find its niche in the grand scheme of things.

This thing called seizures.

They can alienate you from yourself and loved ones

who can eventually become strangers,

much like the gradually-eroding effects

of Alzheimer's Disease.

This thing called seizures.

I have been diagnosed with complex partial seizures.

An aura or sensation comes over you as an initial warning sign.

You temporarily lose consciousness and become disconnected from reality.

Your speech and memory are restored after a few minutes.

This thing called seizures.

They make you want to surrender in defeat

to a war that hate did not produce,

invading a territory of the brain

that makes you feel like an impending casualty.

This thing called seizures.

They are no longer private

when displayed in public,

much like a journal that is wide open

for someone to read your innermost thoughts.

This thing called seizures.

Pumping loads of medication into your system

that still provide no guarantee

that your brain will be free

from the “invisible shackles.”

This thing called seizures.

They inhabit the mind and body.

I think of an uninvited guest

who wears out their welcome,

and then some.

This thing called seizures.

They really torment the mind

like a nightmare that plunges you into an abyss,

waking you up with a chilling effect,

as if you had just viewed a horror movie.

This thing called seizures.

The word “disability”

becomes cemented in your brain.

Driving privileges are suspended.

Your mobility becomes limited in more ways than one.

This thing called seizures.

I have developed a profound interest

in watching people go by

while riding a bus, or sipping on a soda in the mall,

for movement tends to indicate progress.

This thing called seizures.

They can rewrite your script in life,

and you transform into someone other than yourself

I think of a trained actor who can embody a character so well

that you forget it's fiction.

This thing called seizures.

You look in the mirror

and the reflection bears witness

to another image

bouncing off of the glass.

This thing called seizures.

They will inspire you

to consult with God and the angels

to see if there is a broader purpose

in your existence.

This thing called seizures.

They truly cause a battlefield in the mind.

One does not have to dress for combat

or be armed to protect against the enemy.

There is a militant invasion that is profoundly silent.

This thing called seizures.

They literally “seize” the mind and body

holding a person hostage while debilitating the brain.

It's like they relinquish their grip between each stanza of sheet music,

each occurrence belting out a more bitter refrain.

This thing called seizures.

They will leave you in a holding pattern.

I think of an ice floe that doesn't melt with the passage of time,

even with the onset of global warming.

Stoic facial expressions are hidden behind a contrived smile.

This thing called seizures.

They will shake you at the epicenter of your faith,

leaving you disillusioned by their magnitude.

Winter becomes the perennial season.

All others are merely an illusion.

This thing called seizures.

Mapping their own destiny across the frontiers of the mind

until medical research discovers a cure

that will cause seizures to stop rearing their ugly head

from beneath the depths of obscurity.

By Asta Corley

© January 2013

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