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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.
Monday, July 21, 2014
We’ve Already Had Dinner
2005...Caymen Islands...All sun...No swimming...Too cold! My mouth drooped...Doctor said that I had had a stroke!!! Three weeks later, mouth normal...No stroke!
“But,” said the doctor, “Let’s get a picture of your brain, just to see what’s going on.”
“Oops! There is a shadow...Looks like a tumor!” Three weeks later, no tumor!
Then, I started having a problem with balance and had difficulty walking. Back to the doctor, then to a neurologist. Diagnosis...Multiple Sclerosis.
Of the three choices, stroke, brain tumor or MS, I’m happy to have the MS.
I’ve had MS for 10 years and fortunately I have a rather light case. I was diagnosed at age 60 and I think that the later-age-onset is less debilitating. And then, my 60 year old male first cousin was diagnosed with MS! We shared a grandfather who had ALS! My cousin, too, has a light case. We both consider ourselves very lucky.
Fortunately, outside of walking slowly and watching where I am stepping, I have been able to travel extensively. I have visited all seven continents and have just a few places remaining on my “bucket list.”
In 2011, I visited four countries in Africa. The lions were well fed and used to humans. But there were men with guns trained on the animals, just in case! Perhaps they were going to shoot us tourists since the lions are more valuable than we are!!
My family was concerned about my African adventure but the trip was marvelous. Then...A few weeks after my African adventure, I was hit by an SUV while I was walking in a local parking lot. My femur was broken but has healed. My MS is not faring so well. The impact has made my walking very difficult but...I am on my way to Tibet.
MS is a disease which affects each person individually. Thankfully, with the attention and care of my neurologist and medication, I have been able to lead an active and relatively pain-free life. But I do shy away from speeding SUVs.
Renee Maxwell
Long Branch, NJ

Wednesday, July 02, 2014
I am writing in regard to trigeminal neuralgia (TN) and am recommending that allergies (including sensitivity to chemicals) be ruled out early in seeking a diagnosis.
I suffered for 15 years before being diagnosed, and the simple solution was anacin and benadryl. The combination is important. It is a safe enough diagnostic tool. Also, avoidance of triggers is a constant alert.
My problem dates back to the 1960’s and 1970’s when little was known about environmental allergies. TN was the most painful symptom but there were many others: cardiac, thoracic, joint pain, “brain fog” (which devoured much of my normal life), inability to read for any length of time, temporo-mandibular joint pain, and many others. These varied symptoms forced me to see many specialists from orthodontists to psychiatrists. Fortunately, I had faith in myself that my symptoms were real. After 12-14 years I became a recluse and was near suicidal a couple of times.
I had seen a allergists early on but since I had no hives, runny red nose or eyes, and no asthma, allergies were ruled out. Even today I have learned that most doctors do not understand my kind of allergies.
After 15 years of constant pain I was again referred to an allergist. Fortunately he happened to be a mentor of one of the pioneers in this field. What a relief it was to see him nodding his head in agreement when i described my symptoms. He became, needless to say, my household god.
In a year or less, under his tutelage, I was feeling much better. Petro chemicals are my worst offenders, plus bleach and ammonia, the former found in so many products. I stripped my house of all plastics, including such things as shower curtains. I learned I had to be alert to all my choices: new cars, toothpaste, clothes that had to be sent to the dry cleaners, cheap leather products, shoes with black rubber soles (recycled tires!), perfume and dye-free cosmetics, shampoos, cleaning products and laundry detergents. I have few rugs (all wool), no under-carpeting. The list is endless. I must avoid downtown areas because the car fumes can trigger an attack.
Although this letter may seem endless to you, I can go on writing for even longer. I am grateful for the things I have learned and the fact that my life is now livable, but I still feel cheated out of 15 years of my life when the answer was so easy. The allergist told me that the environment and peoples’ reaction to the many pollutants would get worse and I find that this is so. My new kitchen cabinets and all materials in my house are now formaldehyde free, the floors are hard wood.
Please bear in mind I am now 81 years old and know this letter could have been more coherent but I am still compelled to proselytize and try to help others.
I sincerely hope this will encourage you to mention environmental allergies and chemical sensitivities in some future articles about how they can affect the brain.
Jeannette R. Konopka
Gettysburg, PA
P.S. I subscribe to your magazine because my daughter (now age 53) was diagnosed with MS eight years ago and we are both truly grateful for the articles and updates concerning this disease.
Also, we realize how fortunate we are to have all the miraculous pharmaceuticals that are available today.

Tuesday, July 01, 2014
I am writing to you on behalf of my aunt, Kathryn Louise Saupp. Kathryn recently passed away at the age of 62 after a 21 year battle with Parkinson’s disease.
As an undergraduate at Towson University, I dedicated my studies to neuropsychology. My aunt signed me up for a subscription to your magazine and I have renewed several time since then.
Up until she was no longer able to type, Kathryn was a writer and author. After her funeral, I came across the enclosed article she wrote in 2008 about her experiences. I found it very moving and chose to send it to you in the hopes that you may share it with your readers or at least read an account from “inside” the disease.
Thank you so much for everything you do,
Kathryn A. Saupp
Beauty and the Beast
By Kathryn Louise Saupp, 2008
Fairy tales are usually about magical creatures. Magic is the art of producing a desired effect or result through the use of various techniques that presumably assure human control over supernatural agencies or the forces of nature. Magic can be both enchanting and sinister.
When the beast started grabbing my left ankle, causing an improvident limp, I ignored the symptom. Later, when it insistently restricted my walking and balance, I began to acknowledge that the beast could make demands that were going to change my life. It wasn’t going away. Our courtship consisted of innumerable tests such as magnetic resonance imaging (MRI), nerve conduction tests, and a spinal tap. We got to know one another through a regimen of physical therapy. My life held no plans for union with the beast: the marriage predicted was not to my liking. The words which sealed my fate were spoken when I was forty-one years old, as a medical “minister” simply stated, “You have Parkinson’s disease.” The beast was in my life forevermore.
I had already vowed that the beast would never totally possess me and together we slid into a new castle of chronic illness, irrevocably wedded to my beast. The beast is enraged by fatigue and stress. It insists on proper meals at regular intervals. It grabs my body and reduces all movement to a bulky tremor. The beast growls and complains so loudly that when my mind says “move,” my limbs cannot hear. Yet no one can care for the needs of my beast as gently or as lovingly as I, even as my life fills with equipment and little tricks, such as visual cues, to soothe our encounters. The beast is always with me now, even when I sleep. I affirm that the beast is part of me and therefore beautiful in its own way because I am beautiful. I don’t consider it presumptuous to call myself a beauty, because from such assumptions we humans approach the divine. I find nothing in life more magical than those beauties coupled with their beasts of chronic illness each and every day since magic is both sinister and enchanting. Our happily-ever-after is ours to make.
Now after nearly seventeen years married to a degenerative, debilitating chronic movement disorder, my beast still overshadows me. Plus a few of his friends and relatives have moved into the castle. Anxiety gets underfoot and freezes me like a tin man. Depression becomes an intimate meddler with the beast and me, killing any motivations to continue or begin again. Apprehension perched itself on my shoulder whispering fearful thoughts making me fret over what to do when I got immobile. Endurance and tolerance have become my daily advocates.
The medicine honeymoon is long over. It ended after I had taken the medicine for about five years. My beast became quite unruly as the medicine developed critical side effects, including rolling dyskinesias all day and end-of-dose freezes.
On doctor’s orders, I had the dopamine dose on a time clock because the side effects were minimized by a regular schedule rightly maintained. I had to change my entire lifestyle to suit my medicine schedule. I found that “on” times and “off” times were so different in mood that I seemed schizoid. Now, over a decade and half later, if the medicines are even a half hour off schedule, my symptoms alternate between writhing movements or no movement at all the rest of the day. The beast built a fence to keep me in the illness castle. I lost my drivers’ license because of my unpredictable symptoms. I was constantly fighting for as close to normal movement as possible. Photos of me reveal an asymmetric form of the woman I had been.
After 15 years with the beast, I found I had acquired a number of different assistive devices: canes, walkers, electric scooters, things that folded up or out for easy assistance with unpredictable movement in my arms and legs (and sometimes even my torso). Dressing and cleaning myself became miracles. Exercises were no longer sport; they became essential requirements for movements such as turning my head or stepping over something or turning over in bed.
My beast has mellowed over the years as it becomes severely joined with me. I try not to think of myself as ugly, but instead as one of those remarkable pilgrims who lives entwined with Parkinson’s disease. The magic has not gone from my striving for happily ever after. I remember the day that I realized I was never going to feel good again, and the day when I couldn’t remember what feeling good felt like. Now I take each day as it comes. I am prepared to engage my beast. This involves fighting dose delays and overactive movement. I take a pyramid of medications to act on the main medication that first healed me. I fully believe my attitude today will determine my happily ever after tomorrow. When my anniversary with the beast reaches twenty years, I wonder how we will celebrate.
Finding a cure through genetics, stem cells, miracles or magic would allow me to bury my beast before it buries me. I’ll soon be 59 years old and fear I’m running out of time. Those who survive 20 years with the beast must be truly enchanted.

Monday, June 16, 2014

tears held back

ready to gush

spinal fluid at last

released to let healing

begin a new life

how was i to know

endless vacant hours

restore damaged

cells rigorous rehab

to set me straight

oh, to walk again

the cold wind slaps my face

and I walk in my pink

shearling houseslippers

without losing balance

—Sandra Roth

Monday, June 16, 2014

didn’t like the word

never could enunciate it

my tongue-tied itself


didn’t like what it did to me

played hide-and-seek with my doctors

rooms spun


thoughts confused themselves

crème brulee didn’t tempt me

my head ached


Dr. A’s clever cutting

unraveled my head


I caress my scar


—Sandra Roth

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