May 15, 2006

Chapter 17

They gave Kate Kelsall a card to show to people. It reads: “I am not inebriated and it is not contagious”.

Kate Kelsall

See that woman in the garden playing the accordion, with her open face and her warm and joyous smile? Yeah, her. That’s Kate Kelsall, and they put a warning label on her. The government re-assures you, that despite playing accordion in the garden, she’s not drunk and she doesn’t have bugs. So what are they afraid of? Maybe she is too free? Or too happy? Or they are afraid they could never be as strong in the face of adversity as she is? So they gave her a label: “not drunk, not contagious.” Thing is, she is not the one who needs to carry a warning sign. If Parkies have to be labelled, everybody should have to be labelled.

She should have a card saying, “I am not inebriated but you seem to be.”

She should hand out cards saying, “What the hell is wrong with you?”

Kate Kelsall is not drunk and she will not infect you with viruses, but the experts failed to register that her spirit is contagious. And that is far more dangerous.

Could somebody straighten out the medical industry about what is going around out here? The scientists will not reach the moon if they keep aiming at the wrong one.

They should be encouraging more people to be like Kate.

In case you hadn’t noticed, this is an advocacy website about one school of thought. We want to find out if we can migrate to the part of the brain that handles dance and music, because Parkinson’s does not damage that part of the brain.

But we will be just as happy if the cure for Parkinson’s comes from some other school of thought. That’s why Kate Kelsall’s website is one you must visit. She watches over the whole scene, with an open mind and a generous spirit.

Kate Kelsall is a musician, dancer, writer, and den mother to us all on the Parkinson’s internet. She is our reference point when we need a sanity check about Parkinson’s, when we need to regain balance. Her website, with all its links and archives - is complete, informative, humane, many-sided. Shake, Rattle and Roll

She has two signature anthems: "What a Difference a Day Made" and "I Can See Clearly Now". She means it. And she is generally not inebriated and generally does not have the ‘flu. But she is contagious.

She describes better than anyone else what we all went through, that first day:

The Answer

By Kate Kelsall at Shake Rattle and Roll (excerpt)

I squeezed into the tiny exam room. Although I was only 46 years old, I looked like a senior on a cruise, dressed in my green and white striped polyester pantsuit, fresh off the rack from J.C. Penney’s.

The 85-degree temperature probably broke a record. I didn’t know if it is the heat or the humidity, but it was certainly hot.

I was oblivious to the sun-shiny day. The mountains in the west were a blur. The birds chirped outside, and I hated them. I wanted to be anywhere else, except in these confined quarters.

Instead, I was at the Neurology Office of Kaiser Permanente in Westminster, Colorado, on May 8, 1996, waiting for the answer as to what ailed me. For nearly six months, my left hand shook. My left arm hung there like a dead animal. I dropped things. People told me I had a blank facial expression. My voice was soft and raspy. Typing on the computer slowed and became punctuated with errors. A typed word such as “home” appeared as “homeeeeeeee” on the computer screen. My fingers grew minds of their own.

Although, I tried not to worry, I secretly hoped this physician would have the answer and prescribe medication that would take care of my medical woes.

When the physician entered the room, I sat up and tried to act alert. She looked more like an attorney than a doctor in her business suit. She was short, slim and appeared to be in her thirties. We both hovered around five feet. Her first name was Mindy, but I knew I wouldn’t be calling her that. I wanted her to be the one with the answer. Dr. Mindy Wiener became my neurologist. I’d had an internist and an OB-GYN, but never a neurologist.

During the prior two months, she administered neurological tests. She had asked me to open and close my hands and tap my feet. She had attempted to push me over from behind. She had requested that I take off my shoes, outstretch my arms, and walk with one foot in front of the other. My body fell hard against the cool tile of the exam room. I failed that test. She scanned my brain with an MRI, zapped my nerves with electrical currents, and then referred me to specialists.

I sat with Dr. Wiener on that hot afternoon as she reviewed my tests and scrutinized the medical reports and X-rays. Her mouth pinched, and brows furrowed.

I distracted myself by looking away at the walls, which were undecorated except for her certificate of residency in neurology from the New England Medical School Hospitals in Boston. The silence was excruciating. When she finally did speak, her words seemed scrambled. I leaned forward and focused to understand.

“I have good news and bad news,” she said. “The good news is that you don’t have a brain tumor, Lou Gehrig’s disease or Wilson’s disease. The bad news is that it appears that you have Parkinson’s Disease.”

Somehow I missed the part about the good news. I didn’t want to have anything to do with any of those dreadful diseases.

Too afraid to ask out loud, I silently questioned: Will I end up in a wheelchair? Will I be able to work until retirement? What about playing in the accordion competition?

I left the land of health and entered into the land of illness, a different country, where I became a permanent resident.

I was issued an ID card that says in big bold letters that I AM NOT INEBRIATED, that I have a medical condition called PARKINSON’S DISEASE, and that it is NOT CONTAGIOUS.

Dr. Wiener had the answer. It was not the answer that I wanted to hear.

Kate had the courage to have the Deep Brain Stimulation (DBS) surgery performed on May 4, 2005. It terrifies us all, that operation. It caused her to suffer for two years, but since then she has found ways to make it help her. Today, she continues to play accordion, solo and with the Silver Notes Ensemble, and she continues to dance with the Rockyettes, a Colorado take-off on the Music City Hall Rockettes of New York City. She volunteers with DBS patients and their families at the University of Colorado Hospital and co-leads a DBS support group. She participates in yoga classes three times a week. She maintains and continues writing her blog, the go-to site for us Parkies when we need a full and level-headed and well-written description of what is going on with this beastly disease, and when we need to be comforted by her calm and her warmth and her acceptance of reality.

Here at the Parkinson’s Underground Internet Conspiracy, we are printing up cards and giving them to Parkinson’s patients to hand out in the street and during conversations, as many as required, depending on the situation.

The cards say:

“Heavily drugged, wants to dance.”

“I have Parkinson’s. WTF is your excuse?”

“Wanna snort some Mirapex, baby?”

“Not inebriated. Please get me some booze”

“Come with me to Vegas.”

“No known cause, no known cure. A lot like you.”

“Part of my brain is dead, and it was my favorite part.”

“Your tax dollars at work.”

“Parkinson’s: $200 million a year research; nothing new in 60 years. Just give us the money and bugger off.”

“I was okay until I met you.”

“They are doing experiments on me. Are you one of them?”


“Who to sue? Who to sue?”

“When you hear sizzling and smoke comes out your ears, you’ve got what I’ve got.”

“I have trouble undressing myself. Want to be a good citizen?”

“What the hell is wrong with you?”

“I call myself a spastic. What do you call yourself?”

“When I fall down, I am just practising for my sky-diving classes.”

“The Parkinson’s Underground Internet Conspiracy – rich, powerful, stoned on levodopa, and coming to your neighborhood sooner than you think.”

“Don’t drink the water. It’s in the water.”

“There, but for the grace of God… no, wait a minute.”

“And to think that I used to vote Liberal.”

“So just exactly what are you afraid of?”

"Seen any sabre tooth tigers recently?"

“At least it teaches me a lot about you.”

“They will stamp you, and they will label you. Like they do with pants and shirts.”

“We will soon be a majority. Things will change.”

“We are pretending to have Parkinson’s, just like Michael J. Fox.”

“We can’t dance, the experts say. But we are awfully good stuntmen and body doubles.”



The Rockyettes

Kate Kelsall. The show must go on.

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