I continue this week with my story of how I have dealt with having Parkinson’s.
As I said last week, the second question I’ve been asked a lot lately is, “What medications are there for treating the symptoms of the disease?”
Again, ask your doctor, there are advancements being made in medications all the time. Parkinson’s is a progressive disease and there is presently no cure. But there are medications and surgical procedures that can relieve the symptoms for a period of time.
The disease affects every individual differently, but can cause tremors, rigidity, poor posture and coordination and difficulty performing voluntary movements.
As I mentioned last week, my neurologist started treating me with a drug called Sinemet. Initially that took care of the tremors, but as the disease advanced, I started experiencing additional problems. I needed assistance in cutting my food. And once it was cut, I didn’t know if I could keep it on my fork.
In 2004, I traveled to Costa Rica to visit some dear friends who had retired there. Getting off the plane in San Jose, I experienced for the first time the “Parkinson’s freeze”.
I couldn’t move my feet. It was as if they were glued to the floor. A man came up to me and asked if I had Parkinson’s. I told him yes and he said he would take care of me. He ordered me a wheel chair and took me to the baggage claim, through customs and to my friends who were waiting outside of the terminal. I had a rough week in Costa Rica.
I had great difficulty walking and for the first time I felt afraid of this disease called Parkinson’s.
Fortunately, the same man who assisted me in the San Jose airport was also a passenger on my return flight and he again helped me at Sky Harbor until we found my wife, Diane. The man told me that his boss has Parkinson’s and he recognized the symptoms in the way I was trying to take a step.
I went back to my neurologist, Dr. Gary Reese, and at the suggestion of a friend, I also visited a hand acupuncturist who said he could help me.
Dr. Reese put me on Stalevo and Requip. The acupuncture doctor started inserting needles in my hands daily, he gave me a routine of stretching exercises and suggested changes in my diet. To this day I don’t know which helped the most. I definitely know the Stalevo and Requip did work and I remained on that combination until my Deep Brain Stimulation surgery last summer.
After going on those two medications I found I could walk again without using a cane. I began typing again, putting the voice recognition software back in the box and my voice, which had become quite soft, was getting stronger. Both doctors recommended I reduce the amount of stress in my life and get more rest. That was a most difficult task. I love what I do.
Volunteerism had been my way of giving back to this community that has been so good to me.
In 2007, I spoke to the local Parkinson Support Group and told them my quality of life had improved over the previous two years. That was true, but in 2008, I started having trouble sleeping. I was never one to sleep long. I generally only slept five to six hours each night, even as a young boy. Sleep was something I had to put up with. My attitude growing up was I would rather read an encyclopedia under the covers with a flashlight than sleep. And I couldn’t wait to hear the morning newspaper plop on the driveway. As an adult with my own business, I was often at the office by 6:15 a.m. to get my regular work done so I could work on volunteer activities in the afternoon.
But with the new problem, I would go to bed, fall instantly asleep but wake up two hours later. This went on for months. The main reason was after many years of good profitability, my business was suddenly running out of money. After falling asleep while driving on the 51 Piestewa freeway, I went to my GP doctor to tell him about my sleep problems.
He sent me to the Mayo Clinic Hospital where I was tested for sleep apnea. The test was conducted during an overnight stay. I was wired up at a number of points all over my body. It was all very strange. But at least I found out it was mainly stress that was keeping me awake. I had guessed that going in.
My regular doctor let me try some sleep aids. Ambien made my head do weird things. I tried a number of over-the-counter drugs. But then he tried me on Lunesta and that was the magic pill.
I’ve been sleeping much better since then and I’ve found I feel much better after a full night’s sleep. I also began practicing some relaxation techniques I read about in a magazine article while flying somewhere. I imagine a cabin in the woods with snow falling. And everything is in a light blue tint. If you’ve read my columns, I don’t like snow or cold weather. But for some reason that scene is very peaceful to me.
I also envision the beach behind the Hacienda Hotel in Cabo San Lucas. That is what I call relaxation. Warm, sunny and a Corona in hand. The only difference from the real beach is there are no vendors in my dreamland version.
The final thing I try is counting backwards from 100, mentally drawing each number as I go. I precede each of these visions by inhaling deeply through my nose, holding the air in my lungs for varying amounts of time and exhaling through my mouth.
I wear a mask over my eyes and try to avoid bright lights during the night. And television is taboo after you go to bed. I watch Jay Leno’s monologue each night, and turn on the TV’s sleep timer.
One other thing I did to help me sleep was change my eating habits. No caffeine such as no chocolate after 7 p.m. and no sweets after 8 p.m.
Next week as another chapter in this series of columns on Parkinson’s Awareness Month I’ll address Deep Brain Stimulation surgery and how it has helped me.
