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Speak Up
Enjoy essays and poetry by people living with neurologic disorders and their caregivers. Readers can also find letters to the editor.
Monday, September 19, 2016

BY GREIG WELCH

Life as I knew it has completely changed.

What used to be has been rearranged.

Ways of the past disappear each day

without me having much to say.

 

I move slowly and feel my body shake

Creating adjustments that I have to make.

What once was a simple movement

now is an effort with little improvement.

 

Speaking is full of lingering doubts.

I have thoughts that do not come out.

I often just nod my head and smile

wishing to join in all the while.

 

Trips to the doctor are something to dread

worrying about things not being said.

Taking pills that I cannot spell

hoping they make my day go well.

 

In my heart I wage a strong fight.

I want this to end with all my might.

Wondering how this could happen to me

I had many plans I may now never see.

 

But despite my will and resolution,

I eventually come to the conclusion

Life as I knew it has changed.

What used to be has been rearranged.


GW.jpgGreig Welch, a retired educator in Paso Robles, CA, was diagnosed with Parkinson's disease in 2012. During his 38-year career, he was a teacher, coach, high school principal, assistant superintendent, and educational consultant. He is also a former college athlete.

He has been married to his high school sweetheart, Gwen, for 45 years. They have 2 daughters and 5 grandchildren. 



Wednesday, July 27, 2016

Memory meanderings.jpg

BY BERNIE GREENBERG

I am clueless, more often than useful.

Annoying to everyone else,

and at times dangerous.

Could be I am forgetting,

but I have no idea.

 

Do you remember memory?

When things fit in,

when life was semi-sequential,

when there was meaning,

and purpose,

and sense?

Well if you do...forget it.

It will be less memorable.

 

Can't  remember memory.

Not a big deal for me,

more so for everyone else.

They expect me to make sense

but I don't recall being logical.

Nor do I care.

I am happy not remembering that I know.

 

Long-term memories are easier somehow.

They seem fixed in place like concrete.

Medium-term memories get lost transferring from short to long.

It's a transmission problem like being stuck in park.

Short-term memories are just that, short.

 

Memory is hard work.

Looking for what was,

among billions of brain cells

and trillions of synaptic connections.

There is a lot of pressure to find familiar links.

Memory is tense.

It is all past tense.

 

It would be nice to learn from the past.

To recreate those moments of joy

To fix those that brought disappointment or fear.

However, both would require that I remember the past.

When I can't, it is not a character defect,

a hiatus in concentration, or lack of willpower.

It's just because I forgot.

 

IMG_0228.JPGBernie Greenberg sustained a traumatic brain injury (TBI) in 1999 that affected his balance, depth perception, vision, and memory. He began writing poetry in 2002 and has since made almost 60 presentations about his TBI experience. He lives in central Florida with his wife and two cats. He has a son, a daughter-in-law, and two wonderful grandchildren.


Wednesday, March 23, 2016

Prayer.jpg

Psyching Out MS

A psychologist uses his professional skills to face down fears about a life-altering diagnosis.

BY PAUL ROBINSON, PhD

Up until my 64th birthday, life was rolling along. I had recently retired from teaching psychology at North Central State College in Mansfield, OH, after a satisfying career. I enjoyed riding my bike, swimming, hiking, and gardening in the summer and skiing in the winter. I considered myself in near perfect health, despite some minor tingling, numbness, weakness, and rigidity that I dismissed as inconsequential.

Then, three days after my birthday, I awoke completely exhausted. I could barely get out of bed and move around. I immediately called a doctor friend, who connected me with a neurologist at the Cleveland Clinic. After undergoing a magnetic resonance imaging (MRI) scan, blood work, and a spinal tap, I was diagnosed with multiple sclerosis (MS).

I was stunned and initially depressed. MS had never been on my radar. I had imagined biking, skiing, and hiking well into my 80s. Now, I wondered how soon I'd be in a wheelchair. As it turned out, my fears were far worse than reality. After a round of corticosteroids to reduce the inflammation and unsuccessful trials of eight medications, my neurologist and I decided to halt all drugs until otherwise indicated. To this day, 10 years later, I am still not taking any prescribed medication though I occasionally experience bouts of rigidity, pain, burning, fatigue, and minor balance problems. My case puzzles my neurologist, who says that although I have the clinical and biological signs of MS, my case does not quite fit the normal pattern of the disease.

But I still find myself battling distressing feelings about my future. Fortunately, as a professional psychologist, I have a few strategies that help me cope.

Counter Negativity

First, I monitor the comments I say or think to myself. So, for instance, if I find myself saying "I can't" when it's time to go to the gym, I'll challenge myself to at least try and remind myself that I'll feel better if I exercise.

Express Gratitude

Next, I count my blessings—the love and support of family and friends and relatively good health. I even consider the ways my condition has improved my life—it has invited me to slow down and appreciate the beauty around me. It has made me more mindful and purposeful in my daily life. It has increased my compassion and empathy for others.

Practice Acceptance

I also monitor my emotions. When I catch myself feeling sad or sorry for myself, I acknowledge that it's normal and natural to feel this way, but I'm careful not to get stuck in self-pity or anger. I realize that there are no guarantees in life and that my challenge is to meet and accept life as it is and not as I wish it to be.

Time for Reflection

Finally, I reinforce these practices with prayer and meditation, which deepens my sense of inner peace and equanimity. I also help counsel others with chronic health conditions. I encourage them to be kind to themselves without being too indulgent and to welcome the lessons that come their way. MS may damage the body, but it doesn't have to damage the spirit. 

Paul Robinson.jpgPaul Robinson, PhD, a semi-retired psychologist, lives in Mansfield, OH, with his wife, Lana, of 53 years.


Friday, February 5, 2016

Speak Up blog.epilepsy.jpeg

For years she kept quiet about her disease, but today the author speaks often about epilepsy. 

By ANN MARIE GILLIE
 
I had my first convulsion when I was 3 years old in 1972. Before I started nursery school, I had a seizure that left me paralyzed on my right side. I had to drag my right leg when walking and do daily exercises to get my muscles strong again. I was prescribed phenobarbital and my parents were told I would be paralyzed permanently and have a speech impediment and learning disabilities.  

To everyone's surprise, I regained the use of my right arm and leg within the year and never had any speech or learning disabilities. By the time I was 9, my seizures had stopped and by age 11, I was off all medication. Finally, seizure free.

Then in 1990, just when everything was going as I wanted—I had my own place, my own car, a job—the seizures came roaring back. I was devastated. Once again, I was back on medication, which often had intolerable side effects like depression, weight gain, and low self-esteem. I had always been a happy, vibrant, and energetic person, so this was like hitting a brick wall again and again. Eventually, I found drugs that both worked and had tolerable side effects. I even stayed on them during my pregnancy and never had one seizure. After my son was born, the seizures returned.

After years of working with the same neurologist, I decided to try a new one. During the first visit, he asked me if I'd ever been considered a candidate for surgery. When I said no, he arranged for me to meet with a neurosurgeon who placed electrodes on my head to determine from which part of my brain the seizures originated. A week later, I was told I was eligible for surgery. The surgeon explained that I had mesial temporal sclerosis (MTS), which is scarring of the inner portions of the temporal lobe. It can be caused by head trauma, lack of oxygen, brain infection or by something unknown. In any case, MTS can cause a form of temporal lobe epilepsy.

Three months later, I was wheeled into the operating room for a surgery that would change my life. The enormity of the operation didn't really hit me until after it was over. Called a left selective amygdalohippocampectomy, the procedure was eight hours, including prep and intensive care afterwards. I stayed in the hospital for six days where I had to learn how to walk again and refresh my memory with word and number exercises, as if I were in elementary school again.

Now, 13 seizure-free years later, I'm still talking about my experience with epilepsy and my surgery. Helping others is my passion and I know that with my personality—someone who isn't afraid to talk about her experience—I can help others with their epilepsy.

In 2012, I was asked to be an epilepsy advocate for Canada to help spread awareness of the disease. I also established a support group on Facebook called "Life after brain surgery. Epilepsy needs to be talked about." My goal is to speak at seminars, conferences, and forums, to add a patient's perspective to help others understand the disease and the type of brain surgery I had. After years of being silent about my disease, it's all I want to talk about now.

IMG_5751.JPGAnn Marie Gillie is the author of Let's Talk about Epilepsy (Outskirts Press, 2012). She lives in Spruce Grove, Alberta Canada, and is the mother of three sons.


Wednesday, December 16, 2015

After her mother was diagnosed with dementia, the author created new ways to celebrate the holidays. 

 

BY COLLEEN BOYLE

 

 

My memories of childhood Christmases are sharp. I can taste the yummy treats, rejoice in the carols sung in harmony out in the cold, savor the late supper after Christmas Eve Mass in front of a roaring fire, see the smiling faces of family and friends around a well-stocked table, and feel the happiness that comes from surprising someone with the perfect and unexpected gift.

 

In every scene my mother looms large. Honoring those memories of her after her diagnosis of dementia was challenging, especially as her disease progressed and she no longer recognized me. But with a little forethought and a nod to simpler times, I was able to create an experience that proved to be a gift to both of us.

 

Instead of a big, ornately decorated tree, I placed a little Norfolk Island Pine with one red bulb hanging from a red ribbon on the table next to the chair in which she watched television. She was delighted. I skipped the complicated and fancy dinner that took hours (and several bottles of wine) to prepare and bought a box of rich German pastries reminiscent of those my mother fell in love with while serving as a nurse in the Army in World War II. We shared them over cups of coffee—mine with a dash of sugar, hers dosed with Ativan.

 

Dozens of extravagantly wrapped gifts would have crowded the little pine tree, so instead my mother and I wrapped several small items with pretty paper I had brought. Minutes later I handed her one of the presents and watched as she opened it, eyes as bright as a child’s. She was thrilled with the bottle of hand cream and smiled contentedly as I rubbed it into her hands and arms.

 

Attending Midnight Mass was out of the question—too intimidating for my mother—so instead I brought one of her favorite Bing Crosby CDs and we hummed along to “White Christmas.” Then we quietly sang a few notes of “Silent Night”–a moment as sacred as any I have felt in a cathedral.

 

Since my mother couldn’t leave her assisted living home without becoming agitated, I had delivered the holidays to her. We repeated this simple tradition until her death, and each time was as special as the first. Some celebrations lasted only 30 or 40 minutes, but that was enough time to smile, laugh, and share a snack. Those memories of Christmas with my mother in her last few years are as sharp and deeply cherished as those of my childhood.

 

For more information about celebrating the holidays with someone who has dementia, read “5 Tips for a Joyful, Inclusive Holiday” and “Holiday Gifts.”

 

Colleen Boyle is the author of Mary's Gift: A Caregiver’s Journey of Love, Loss and Connection, a memoir of a mother’s decline from dementia and a daughter’s efforts to care for her. She lives in Denver with her wise and supportive husband.