Parkinson's Straight from the Horse's Mouth

Welcome to the blog of Barbara Waters. Experience my personal up's and down's in this new cycle of becoming a Parkinsonian. All is not doom and gloom! Join me on this adventure within and without.

Sunday, October 15, 2006

"Off With Their Heads!"

The only definition of "homebound" that the health care provider gives its patients is they can't go out without a cane, walker, or wheelchair. On the strength of being homebound, therefore, and of appealing to the farce of a medicare-affiliated "appeals" office, I have been granted another four to six weeks of home health care from a bath lady and a physical therapist. After that I'm on my own. As the Queen of Hearts said, "Off with their heads!" In a way I'll be glad to be rid of them. If PD doesn't finish you off, sooner or later fighting the Medical System will.

Fearing that I would again be deprived of homebound classification, on October 7 I skipped eating out with Alan and Stella Kishbaugh. We reminisced at my home instead. Alan remembered that regal Greer Garson was bashing a birthday pinata when we walked in on her party back in 1984. How could I have forgotten "Mrs. Miniver" conducting herself in such a non-British fashion? I shall use her fervor and aristocratic accent at my Medical System celebration when I command, "Off with their heads!"

Saturday, September 30, 2006

Big Brother Is Watching

The hounds of hell are always snapping at your heels when you have PD. Worst of all are the unceasing side-effects, like the bronchitis I've been battling since my birthday on September 26. My gift was escaping pneumonia this time around. Second worst is constantly being harrassed by the Medical System. My two health aides reported my eating out during Hazel's visit as well as my weekly visits to the beauty parlor. Now I'm being dropped from their Medicare services and coverage. Look, folks! The only Wonder Woman ever to be cured of Parkinson's Disease. She tries to walk. She talks. She thinks. She eats. She has clean hair! Step right up and see her in her cage. Just fifty cents!

Thursday, September 21, 2006

The Longest Mile

Of all the restaurants we ate at while Hazel was here, Rancho de Chimayo was the biggest challenge for me. In the first place, it took more than two hours to wind our way along the picturesque Route of the Churches (also called the High Road) south from Taos almost to Espanola. Each country village has its irresistably photogenic church or chapel shrouded in antiquity and lore, starting with San Ysidro Chapel near Ranchos de Taos. Every spring this pious saint of the farmers is carried through local fields to bless anticipated crops. God loaned him an angel to help with San Ysdro's plow and two yoked oxen, neglected due to his habit of non-stop praying. The High Road ends in Chimayo, an old village famous for its weaving, fruit orchards, and miraculous healing dirt in the Chimayo Sanctuario.

I was therefore tired when we at last arived at the historic Jaramillo homestead, now a restaurant called Rancho de Chimayo. It has two wings that look like identical houses joined by two rooms in the middle. In back are indoor and outdoor porches runnning the width of the adobe building. Every fall, bright red chili peppers are strung in four feet lengths all along the front roof. Below, a statue of St. Francis serves as official greeter in the front patio. Unfortunately, he does not warn that the handy bathroom once directly opposite the entrance door is now tucked the width and length of the building away from the front door. Once there, a long line of washbowls precedes two lines of toilets, only one reluctantly fitted for the handicapped. You have to understand the walking problems of a person in my condition to appreciate what a woeful state this is.

First is my characteristic PD shuffle, probably caused by decreased extension of muscles surroundiing the hip, knee, and ankle joints. Decreased movement of the trunk and pelvic areas lead to a shorter stride and steps. Then comes my habit of toe walking, which narrows my balance platform. And then there's "freezing," where my feet feel like they're planted in cement. With this comes the extreme mental fatigue of WILLING them to move. When they do, my forward stoop throws me into a fast set of running steps, called a festinant gait, in an effort to regain my center of balance. Finally comes the multi-tasking effort of coordinating all this with a quad-cane held in the left hand matched with a right-foot forward step followed by a quick left-foot step. "Quick"? Nothing is quick in the world of a Parkinsonian. Come to think of it, that trip to the bathroom felt longer than a mile.

But eventually I was back! Eating at one of our favorite spots, shooing away the bees divebombing our honey for heavenly soapapillas and remembering the late September afternoon in 1984 when Frank and I and the Kishbaughs crashed Greer Garson's eightieth birthday party, with her permission. We hadn't known the whole place was reserved this day for her party. Gallant as ever, "Mrs. Miniver" tossed her red hair and welcomed us with a laugh and warm recognition for Frank's superb writing. They seemed of a like creative temperament. Born two years later than he, she would die a millionairess in 1996 less than a year after he.

Except for their present bathroom, Rancho de Chimayo is a place of many happy memories.

Sunday, September 17, 2006

Angel Treatment

This past week an Angel named Hazel Gardner flew in on a rainbow to give me a lesson in self-confidence: self-confidence in walking and eating in public. After landing in Albuquerque she rented a Toyota Avalon sedan for the 140-mile drive up here to Taos. Her reservation had been upgraded to the top of the line free of charge due to lack of smaller rental cars. Avalon, of course, is the paradise King Arthur was carried off to after his death. Hazel's paradise glistened with silver and burled wood trim and mysterious blinking lights of green, red, and gold. Joy surged through me with a jolt when I discovered it was so spacious that I could lift my own legs in and out of the car, as well as my entire body. For over a year I hadn't been able to do this alone. "At first I was mad at this Avalon for being so complicated," Hazel said. "But then I realized it had been given to me for some special reason."

Hazel was brimming with angel lore and magnetism. She brought two lengthy written visualizations describing how to keep one's guardian angel at hand. Her niece had sent her the same angel birthday card as my niece had sent me. And halfway through dinner at the Apple Tree restaurant in Taos she looked up above my head and exclaimed, "Look! Three silver angels arranged as a mobile are floating with their arms outstretched over your head." Sure enough, they slowly circled around a small central sphere, symbol of the universe.

Eating in public has become one of the banes of my existence. Since the Parkinsonian tremor is helped very little by levodopa medication, one has either to take a second medicine providing substitute serotonin or to live with the tremor. I have lived with a tremor in my right hand and arm for more than a dozen years. It was diagnosed originally as "essential tremor," meaning tremor was the only symptom; but I was warned it might some day progress to PD. Back then the tremor was treated with Inderal 60 mg. pills, and they still help although my Santa Fe neurologist said they wouldn't work with PD. If I take one of these pills before dinner and select the right food, I don't look like as much of a pig.

Soups, pasta, rice, and limp cooked spinach are out of the question. Salads I eat mostly with my fingers, so they are generally taboo in public. I look forward to finding some handicap eating utensils and a lifetime supply of designer bibs. In the meantime, sticking to my left hand and salmon, sea bass, shrimp, zucchini, and scalloped potatoes, I managed to eat out at five restaurants with my visiting Angel. And at home I had no problem whatsoever consuming her inspired gifts of a chocolate eclair and a pound of Mrs. See's chocolates. It was my own private Avalon.

Sunday, September 10, 2006

A Synchronicity

Synchronicity has beeen defined as a meaningful coincidence where inner growth is reflected in an outer happening. Recognizing these synchronicities in our lives helps us move into a higher consciousness. In the following example, I became aware of untapped energy available for my health care from so-called "angels."

In case I hadn't already gotten the message, my niece Janice sent me an early birthday card one week after I'd written my "Angels All Around" entry here. She has no idea what a blog is, let alone that I have one. Here is the poem by Emily Matthews that appears on this card:

To an Aunt Who's a Real Angel

If an angel is someone
who's filled with love,
it's a gift
that they constantly share...

If an angel is someone
who looks out for others
and gives them a nudge
here and there...

If an angel is someone
who touches your life
with a heart
that's both joyful and wise...

Then even though aunts
don't have halos or wings,
they are angels
in human disguise.

Saturday, September 09, 2006

September Song

September is "My Month." Good things happen to me then. I found Taos in 1968 on September 24. Two days later on my birthday I found a teaching job here. A year later in September I found "La Isla," as Taos Indians long ago called the fifteen wooded acres where I now live 8,000 feet high at the foot of the Sangre de Cristo Mountains. Seated atop the closed aluminum gate in front of Frank Waters' property, I heard the golden aspens murmur, "Some day you will be the steward of this land." One year later I found Frank Waters. And we are still here, although Frank's energy has been transformed since June 3, 1995. As his memorial boulder promises, "We Will Meet Again As Equal Parts Of One Great Life."

After all these years, September is still gold with sunflowers and purple with wild asters under a cobalt sky. Its peace and contentment fill me with equanimity about my August news. I do not feel "optimistic" about having Parkinson's, as Michael Fox claims to feel. He is writing a book about optimism. Fox is too young, and I am too old. I am satisfied to settle for equanimity, seasoned with peace and contentment.

Living in an old adobe house has a lot to do with my sanguine frame of mind. A visitor to a friend's old adobe recently caressed its walls with her hands and said, "It's like being in a convent."

"A convent?" said my friend, picturing a cold, sterile prison.

"These walls radiate peace," replied her visitor.

At La Isla the whispering aspens echo, "This entire golden acreage radiates peaccce. Treasssure it. Peaccce be with you."

Thursday, September 07, 2006

Fava Beans

Fava beans are one of the oldest crops cultivated around the world. The Chinese have eaten them for more than 5,000 years. Pythagoras warned the ancient Greeks NOT to eat them. He didn't give any reason, but it is known that some people back then believed part of the soul was expelled with the flatulence resulting from bean-eating. One of my health aides ventured the wild guess that fava beans have "speed" in them because eating the raw contents of three pods before bedtime kept me wide awake all one night and made me walk much faster next day. She thought I might be "tripping out." You can imagine what happened to HORSES after eating fava beans grown for fodder! Many a Roman chariot race may have been won with fava fodder instead of oats. And pity the poor farmer trying to plow his field with a couple of these fava-bean-inspired horses. In the past century farmers around here grew big fields of favas, dried the beans, and sold them in little paper bags. Italy named the bean, featuring it in soups and stews. Spain followed suit, but called them "avas."

A member of the pea family, this legume comes in big pods six or seven inches long. Inside are an average of six beans, or seeds, each about an inch long. They resemble giant lima beans. Young, green, immature beans contain the most levadopa -- 50 to 100 mg. per three ounces. Two tablespoons of beans -- one ounce -- makes a good daily beginning, which gradually might be increased to a daily maximum of four ounces, or half a cup. One's doctor should be consulted before trying this natural alternative or supplement for levodopa. If he doesn't say you're crazy, he will establish dosage and adjust other medication. Little research has been done on this subject. A small percentage of those who eat fava beans may experience inherited anemia or allergies, especially those persons of Mediterranean, African, or southeast Asian descent.

Despite their fame (renewed by Anthony Hopkins), two big questions remain. Do they help PD? Why did Pythagoras say, "Do not eat fava beans."