David Taffet says, due to Parkinson’s Disease, he sometimes has trouble getting the words in his brain to come out of his mouth
Learning to take pills on an empty stomach has been my biggest challenge in treating the disease
DAVID TAFFET | Senior Staff Writer
taffet@dallasvoice.com
Today is a good day. The toothpaste ended up on the toothbrush and not on the floor, and I got my pants on without leaning against the wall.
Dallas Voice Publisher Leo Cusimano was the first to notice how I was walking — slowly, stiffly and stooped over, without swinging my arms. After he pointed it out last summer, I noticed that, in addition to those signs, I was curling my hands inward.
Then I began to notice several other things: I was using my right hand — and I do nothing right-handed. I noticed a tremor in my left hand. Balance was a problem at times. I was even having some speech issues.
So I made an appointment with my doctor at the time, who brushed off the symptoms I listed for him. He was good at reading the results of blood tests, but there is no blood test for what was wrong. So my doctor quickly became my former doctor.
I made an appointment with Nick Bellos, my former doctor who is now, once again, my current doctor. He had retired from practice but had recently reopened his business. After an exam, he had me get an MRI to rule out stroke. With a stroke ruled out, we made an appointment with a neurologist specializing in Parkinson’s Disease.
My Parkinson’s specialist spent quite a bit of time with me on that first appointment. After observing my movements, giving me several motion tests, asking and answering a number of questions, my new neurologist gave me a tentative diagnosis of Parkinson’s Disease or a related syndrome with parkinsonism symptoms.
He prescribed a medication that replaces dopamine in the brain and said it should slow progression of the disease. He said he’s seen patients thrive on the medication for 10 years, and we caught it early.
So I began taking levodopa/carbidopa, slowly amping up to full dosage. I began with half a pill in the morning and half in the late afternoon. The next week, I added a half a pill at midday. Then a week later, one of the half pills became a full pill.
Then two. Then three.
Each time I increased dosage, I felt as if there were little explosions going off in my head.
The biggest challenge was taking the pills on an empty stomach and giving them time to absorb.
The morning pill is the easiest. I get up around 6 a.m., take a pill and go back to bed for an hour. Then breakfast is at 7 a.m.
In my office, I usually sit at my desk and nibble. Now nibbling stops at 10 a.m., pill at 11 and lunch at noon. Repeat at 3. Stop eating for an hour. Pill at 4 and dinner when I get home.
After a few weeks, the routine got easier. Days in the office when I’m sitting at my desk are simpler than days off when I could be anywhere and not where my pills are.
So I keep extra pill bottles not just in my office but also in my car.
And once I got used to the routine, I began feeling pretty good.
What is Parkinson’s Disease?
According to The Michael J. Fox Foundation, “Parkinson’s disease occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die.” It affects about one million people in the U.S.
And the symptoms? A cure?
“Because PD can cause tremor, slowness, stiffness and walking and balance problems, it is called a ‘movement disorder,’” the foundation says on its website.
“Constipation, depression, memory problems and other non-movement symptoms also can be part of Parkinson’s.
“PD is a lifelong and progressive disease, which means that symptoms slowly worsen over time.”
I’ve had some tremors. My walking was what others noticed first. Balance issues I noticed not just when getting dressed but sometimes even when lying in bed. Pissed off, but no signs of depression. Memory? Names. More than once I’ve caught myself calling Jeremy, my partner of about two years, by my late husband’s name. (My husband Brian passed away more than seven years ago.)
I’ve had some speech problems. The thought is there, but I have to push the words out. Brain to fingers on keyboard? No problem. Brain to mouth? Problem.
Not great for a talk show host, but so far no one’s particularly noticed. Three of us host the radio program Lambda Weekly, and we’ve been a team for 25 years. So we already tended to finish each other’s sentences. Patti and Lerone have done a good job of covering for me.
The first thing I worried about after getting my diagnosis was that I’d have to retire. So I began speaking to friends and relatives who’ve retired. Over and over again they told me it was the best thing they’ve ever done. One after another said they’re doing all the things they’ve always wanted to do.
Hmm. I’m already doing what I want to do. I love writing and telling stories of people in our community. I love doing radio. As a kid, I hung a curtain in my basement.
Behind the curtain was a sofa and a desk. Like The Merv Griffin Show, which I watched every night. (Johnny Carson was on too late). Even after more than 34 years doing Lambda Weekly, I’m not ready to give it up.
But I have pulled back on some responsibilities. I’ve been permanent guest DJ of a music show on KNON, but we’ve found a new, permanent host for the show. I stepped down as president of Congregation Beth El Binah. I’m still on the board, but someone else can deal with the bomb threats and the FBI.
When Brian died during a collapse of the 911 system in Dallas, I wrote about it. Several other people who had recently lost their husbands contacted me and we started a support group for people who had lost a same-sex partner. The group still meets to help newly-widowed spouses through their grief.
I decided to handle my recent diagnosis the same way. I’m writing about it. It’s how I handle things. Maybe it will help someone else who’s suddenly experiencing strange symptoms — stiffness, balance issues, walking without arms naturally swinging, even memory problems.
My best advice is talk to your doctor about it, and if your doctor doesn’t take these symptoms seriously, make an appointment with a different doctor. See someone with experience in geriatric medicine.
Geriatric medicine? Yikes!
For the past 20 years, when anyone has asked my age, I’ve said, “I’m in my extremely late 40s.” I completely skipped my 50s and 60s. Now that I’m in my … more-than-60s, just please don’t make me play pickleball.
Parkinson’s can strike at any age. Michael J. Fox was diagnosed with the disease at age 29. Today, he’s 62. The average age of diagnosis is 60. Younger than 50 is considered early onset Parkinson’s.
I’m trying to not let my Parkinson’s diagnosis keep me from doing things I’ve always enjoyed.
The rest of my family doesn’t do old age very well. For example, my mother’s younger sister recently turned 96 and just traded in her old car for a little red Honda sports car. That’s how I picture aging.
So, we’ll see how it goes and I’ll keep posting.
And as for my diagnosis, when I last saw my Parkinson’s doctor, he said I looked much better than I did when I first came to him. That means the medication is working. But good news/bad news: Without a blood test to screen for the disease, Parkinson’s medication working pretty much confirms the Parkinson’s diagnosis.
Blessings to you, dear sweet brave David.
Thank you, David. This article is helpful. I look forward to your continued descriptions.
Informative and helpful. Thanks for your forthrightedness.
Wishing you all the best!
Keep using your strength, intelligence and humor as you move forward.
My partner was diagnosed with Parkinson’s disease at the age of 66.. His symptoms included excruciating calf pain, muscular aches, tremors, slurred speech, frequent falls, loss of balance, and trouble standing up from a seated posture. After six months on Senemet, Siferol was given to him in place of the Senemet. It was also at this period that he was diagnosed with dementia. He began seeing hallucinations and became detached from reality. With the doctor’s approval, we stopped giving him Siferol and chose to try the Natural Herbs Center PD-5 protocol, which we had already looked into. After three months of therapy, he has made significant progress. The illness has been completely contained. There are no symptoms of persistent twitching, weakness, tremors, hallucinations, or muscle soreness. The PD-5 Protocol was obtained from natural herbs centre Though you still need to determine what works best for you, I thought I would share my husband’s story in case it could be helpful. Greetings and prayers