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  Thursday October 30th, 2014    

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Awakening from Parkinson’s Disease (03/10/2013)
By Janet Lewis Burns
by Janet Lewis Burns

“God doesn’t build a bridge over our troubles. He gives us a tunnel through them.”

-Unknown

I noted a spiritual glow melt across my granddaughter’s beautiful face. Ally, 12, is more sensitive and empathetic than most kids her age, taking others’ troubles to heart. My two granddaughters’ visits mean even more to me since I completed the D(Deep) B(Brain) S(Stimulation), at Gundersen Lutheran Hospital in La Crosse, on October 2, 2012, to treat my relentless Parkinson’s disease.

Ally sprang through the front door, calling out my name like she always does. As I stepped around the corner of my study, we nearly collided. At that moment I saw the face of hope fulfilled in a child’s smile. The strength of her embrace flowed through my veins like communion.

Ally knows that I have had Parkinson’s disease for nearly 13 years, and that there is no cure. It disturbed her to stand helplessly by as I endured what the doctors refer to as “off times,” which never failed to throw me into a tizzy!

People with Parkinson’s aren’t producing enough dopamine in order to relay messages from one part of the brain to another. A number of positive changes in my body have already proven that the DBS was just what the doctor ordered!

There’s a limited window of opportunity when the DBS can be offered to a patient, after a “team” of doctors determines that the patient would greatly benefit from it. This seemed to be the miracle Pat and I had been praying for when I was chosen. How often did we drive home from the many appointments with our hopes dashed, with no relief in sight?

On January 28, I turned 68 years old. I realize that I have received the greatest gifts anyone could bestow onto another! After the DBS is completed most people are immediately transformed! My case was no exception! I no longer suffer weak spells or lose my capacity to walk. I seem more alert. I can concentrate again while reading. Bathrooms have returned to their brief, intended purpose, and not dreaded miserable, unfriendly waiting rooms that hold you prisoner in continuous daily indigestion.

I don’t hallucinate anymore, a huge improvement! It became unnerving to share my house with strangers hanging-out all over the furniture, many deformed and crippled. My floors were alive with dogs and cats. Looking out the windows, familiar objects seemed to be transformed into imaginary children waving or animals rolling around the yards. My penmanship has become legible, so I can jot down notes and read them later.

“Grandma, you’re walking without your walker! Does this mean that you really are better? Lots of people have been praying for you to get well, so I knew you would.” Ally taught me, in our fleeting moments of togetherness, that blind faith is comforting. It’s not about “the words that you pray.” It’s “what you feel deep inside and what you’re willing to give of yourself” that count.

The medication Levodopa is taken into the brain and turns into dopamine, which is lacking in Parkinson’s patients. When the medications fail to work until the next dose is due to be taken, the “off times” raise havoc with the body. Side effects of PD medications can be very harsh, causing their own debilitating miseries.

Every two hours, when due for another dose of medicine, I often lost the ability to walk, becoming very weak and anxious, dragging myself hurriedly. Shuffling as I clung to my walker, I endured urges, such as the need to rush to the nearest bathroom (usually a “false alarm.”) The nighttime urges are the most frustrating! A full good night’s sleep is nearly impossible.

Backtracking to the initial diagnosis: I’d always enjoyed my own company, strolling along a familiar forest path, exploring bright, colorful corridors of blazing Midwest Autumns, and stealing away for a pot of Earl Gray or Tazo Tea to accompany my recent book purchase, somewhere in “the season of things to come.”

In my mid-fifties, I sensed an uneasiness and discomfort throughout my body. My legs and arms failed to move in precision. The common trait shared by most PD patients is a tremor. Mine began to show up, only slightly, on my left side. I became very self-conscious and easily overwhelmed. Though we know of no one in my family who has ever had Parkinson’s disease, that was my suspicion.

A visit with a neurologist at Mayo Clinic confirmed my logical dreads and fears. All went well until my entire body seemed to fall apart and come undone in March of 2011. It was quite by accident that we learned about Gundersen Lutheran’s Parkinson’s Disease and Movement Disorders Center, directed by an ambitious, enthusiastic, dedicated and caring young man, Jason Alred, M.D., who is devoted to his patients and research in the field of movement disorders. Along with a “team” of professional doctors and nurses, every patient is treated as a special individual, according to his or her personal medical history.

My husband, Pat, a supportive, steadfast caregiver every step of the way, decided to try the Gundersen walk-in clinic for help we couldn’t seem to find elsewhere. We were very fortunate that a nurse detected a serious health issue and made an appointment for me, on the following day, with their Parkinson’s department.

There is a story here that must be told. If it gives just one family important information that can restore their quality of life, then it’s worth the telling. Gundersen discovered that my medications desperately needed to be regulated. I had been failing to take them on an empty stomach and sometimes strayed from the two-hour intervals prescribed. We didn’t know how I had lost 45 pounds in six months. Parkinson’s is a complicated, isolating, and anxiety-ridden disease that presents itself differently in each patient who is afflicted with it.

This will be the first shared writing I’ve done since I reluctantly gave up my Winona Post column, “From the Heart of the County,” in 2012. Feeling that somehow I had lost the flair, the quick-witted humor, and the spark in my writing, along with my struggles with depression and anxiety, I became an empty shell for lack of purpose in my life.

My column had been consuming all of the quality time and energy I had to spare. I do miss it for all the meditative enrichment that reading and writing has fed my soul. People still come up to me to tell me that they miss my columns. I can’t deny that the desire to write again sometimes beckons me.

A realistic, sensible guy, Pat tries to guide me to accept the fact that I’m still stressing over things I can no longer do. I must move on! I don’t have to do anything that requires physical exertion. It’s been very unselfish of him to spend his newfound retirement doing all the household chores, acting as my chauffeur, keeping track of all my medical records, and seeing to it that we are well-supplied with groceries, but, mentally, I am unfulfilled!

“Janet, wake up! Open your eyes. Follow the flashlight.” I kept hearing this monotone voice trying to arouse me from a deep and eerie departure. I had to struggle to keep from getting lost in those enticing pools of the greenest eyes I’d ever stared into. I felt the presence of my loved ones, then, standing at my bedside, eager to have me back.

That was the first thing I remember, following the DBS surgery, and there was Ally, holding my hand, sternly peering down at me. She wasted no time reprimanding me for causing a big hullabaloo earlier, hollering for Pat to come and take me home. He was soon there, as always.

I longed to “go home.” This had become a tedious journey. I wanted to scream, “Help! Someone save me from myself!” We soon came face to face with my neurosurgeon, Gregory Toczyl. Handsome and congenial, his confident demeanor was impressive as he proclaimed that he was very pleased with the way the “leads were placed” in my brain. Another success story!

During the DBS, two holes are drilled in the front part of the skull. The patient isn’t put to sleep completely, because they have to be able to answer questions during the procedure. I felt as though I was being pulled through a dark tunnel. There was an impending static, whooshing noise, which the doc said were the sounds of my brainwaves. I didn’t have a clue!

After some time of answering simple, repetitive questions, I began to shake violently. The nurse explained that was because they were putting my medications in the I.V. drip, so my body could rest—and that it did, for a day in oblivion.

On October 9, a generator (that resembles a pacemaker) became an intricate part of me,

stitched just beneath my skin where the lead wires are connected from their placement in the brain. We would be waiting once more, for a doctor to “turn on” the amazing, manmade marvel to program it. As Pat toyed with the remote, I could just imagine what he was thinking! No, he wouldn’t be able to turn me on and off at will.

November 8 was my “turn on” date. I hoped I wouldn’t short circuit during one of my nervous spells! Actually, the generator can be programmed frequently, due to scar tissue and other changes in body chemistry.

Apart from relieving symptoms caused by PD medications, this Deep Brain Stimulation (DBS) can reduce several motor symptoms associated with the disease, which include: Rigidity (stiffness or inflexibility of the lower limbs or joints); Bradykinesia/akinesia (slowness of movement/absence of movement); tremor (involuntary, rhythmic shaking of a limb, the head, or the entire body).

One primary goal of DBS is to reduce, and sometimes to eliminate altogether, the medications which lead to drug-induced side effects.

One article I read recently stated that over 80,000 Parkinson’s suffers have been greatly helped by this procedure, but few people seem to be aware of it. As we talked to many who have gone through the procedure, every one of them said that they would do it again with no hesitation.

“The season of things to come” is always a heartbeat away. Where is this weary world headed? Hope is desperately needed in today’s society, in order to keep prayers on our lips and faith in the hearts of humankind.

To the countless dedicated scientists, researchers, nurses, doctors, surgeons, lab technicians, and seekers of medical cures for mankind: you are a lifeline to the believers in a world of innocent and loving grandchildren, and those who would give their lives, to preserve, for all time, the natural sincerity and affection they propagate. 

 

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