For the writer, tears are steak dinners served with garnish. They are leather to the shoemaker and paint on the artist’s palate.
Understandably, we give attention to the person who falls on the trail, but less to the one who trudges on. That is why Thelma Balbes is a challenge to write about. She doesn’t cry, she doesn’t complain. She just trudges on. And the writer marvels, but gropes for words …
Thelma is a 73-year-old grandmother who lives comfortably atop a hill in Carlsbad. The comfort is in her surroundings, not in her body.
Thelma is afflicted with Parkinson’s, a disease that teases and torments before it eventually leads to death.
She was diagnosed in 1997 when living in St. Louis, where she was working in market research, and her husband, Ray, was a college math professor. She at first disbelieved the finding, but the increasing effects of the disease gave her a dash of cold water. They moved to Carlsbad in 2005 for the same reasons anyone else would.
To surrender or serve — she had to choose how to respond to her affliction. To the gratitude of others with Parkinson’s, she chose to serve.
When you meet Thelma, the first thing you notice — you can’t avoid it — is a nasty thing called dyskinesia. It’s a side effect of carbidopa-levadopa, a medication that fights Parkinson’s.
It’s difficult to describe what dyskinesia does without sounding clinical or crude. It is involuntary spastic-like movements of the arms, legs, torso and head. In other words, the body jerks uncontrollably.
Dyskinesia is a nasty example of the lesser-of-two-evils syndrome: If you don’t take the medicine that causes it, you run an increased risk of becoming “frozen,” which is a sign that the brain is not producing dopamine and prevents movement signals from the brain to the muscles, explains Paul Raffer, M.D., a Chula Vista neurologist.
Thelma says, “The last two years I’ve had some problems of ‘freezing.’ When I’m walking, I might see something and I stop, then I can’t get going again. I can’t get my feet to move. Sometimes it’s just my legs, but most of the time my whole body is frozen, and I’m just standing there.”
How do you get out of that?
“One way is, I shift my weight back and forth and try and move my foot, and eventually I am able to lift it up because I am moving from side to side.”
Imagine going to Walmart like that, or sitting in the middle seat of an airplane with uncontrollable movement, both things that Thelma does without hesitation. Some people I know “would rather die,” as we flippantly say, than suffer that “humiliation.”
Thelma keeps a busy schedule working to advance the care and understanding of Parkinson’s, but first she has to get started each day.
“I wake up usually close to 6. I usually check my emails, then I get dressed. It takes me about an hour, sometimes longer if I have to go somewhere and I have to wear support pantyhose. It takes an hour just to get them on. Sometimes it takes 20 minutes just to do a button, I don’t like to depend on (husband) Ray for everything, but he will help me if I’m having problems.
“When I was first diagnosed, I decided I’d do what I could to help others, so I led a support group. When we moved out here I started a new support group, and it gave me instant friends. It was really nice. I like to think that I’m making life easier for people who are following in my footsteps with this disease.”
Caryl Parrish, partner of a Parkinson’s patient and a support group member, says of Thelma: “She is an inspiration who works to educate and assist people with Parkinson’s. She is now co-leader of the North County group. She is on the board of the area Parkinson’s Association and is active in a number of other organizations. She also personally supports clinical trials. Thelma is never too busy to offer assistance.”
Parkinson’s can be serendipitous across the age span, but normally afflicts older people. The end is always the same after it weakens the body and gives way to some opportunistic disease such as pneumonia, which ends the suffering.
Some 1 million people in the U.S. have the disease. Of course, we all know about Michael J. Fox having it, but do we know about the man or woman down the street?
Raffer says the disease is caused by a progressive loss of dopamine-producing cells. The afflicted can live a normal lifespan with treatment, but also with unavoidable, progressive impairment.
There is a slight predisposition for persons of Eastern European Jewish ancestry to contract the disease via the LRRK2 gene. Thelma is such a person.
The disease is a multi-tasker. It affects speech in a way that makes the afflicted talk in a low, slightly slurred, fighting-for-breath voice that requires concentration to follow. That doesn’t dissuade Thelma from talking because she wants to make known how this ugly thing sits astride her life.
Parkinson’s can also diminish memory, and medication side effects can even cause aggression toward innocent people. Most commonly, nightmares can cause striking out at spouses lying alongside in the same bed. It’s an outgrowth of a dream-induced psychosis, and not malintent.
Thelma says, “The worst I know of happened to a man with Parkinson’s and his wife. They lived at home, and were getting along quite well. Then, he had a vivid dream that caused him to attack her. She couldn’t have him stay with her any longer. It wasn’t safe. He had to go into a nursing home.
“Vivid dreams happen quite frequently. I’ve had a couple. Fortunately I’m not violent, I just chase people (in them).”
Depression, of course, is an understandable outgrowth, but Thelma says she has never taken medicine to ward off those dark moons.
As we converse, she seems to be working really hard at it, so I ask if talking is a strain.
“Yes, because if I talk in my normal voice you wouldn’t hear me.”
She says, “I do a lot of cooking. It’s hard because I can’t smell what I’m cooking. That’s one of the first things to go. No sense of smell at all. I’ve been in the house when there was a gas leak and I haven’t smelled it.
“Swallowing can cause problems, because if your food goes down the wrong way, you start choking and coughing. You have to eat very carefully.”
In public, your condition draws stares, obviously. How do you deal with that?
“I just tell them I have Parkinson’s, and (shaking) is one of the side effects of the medicine.”
It will shock no one to be told that divorce can be another side effect of Parkinson’s. Thelma tells of a young woman in her 30s who was afflicted. She had been pregnant when first diagnosed. After about eight years, her husband could no longer handle the stress and divorced her. He had found someone else.
Another drug that Thelma takes, pramipexol, can loosen inhibitions, she says. For example, if one is inclined to gamble, the drug turns the impulse loose. Thelma knows of one Parkinson’s patient who lost a home because of gambling. She, personally, was always a casual gambler, but now has to carefully control what she spends at the casinos, which she takes pleasure in occasionally visiting.
A third of people with Parkinson’s will also suffer from dementia.
Thelma’s husband, 74-year-old Ray, is quiet and steady, a man to easily fit the stereotype of a math professor. The type you would want at the helm in a storm. He took early retirement to be at her side, and gives support as needed, but makes it a point to not hover.
Considering that Thelma does not shrink from public contact, she has had only one unpleasant encounter.
“I was helping at an art show and was assigned to help someone at the booth. A woman came in wanting something. I went to help her and she asked me to stop moving. I told her I couldn’t because I had Parkinson’s. She went and told the owner of the store that she didn’t want to deal with me.”
How advanced is your Parkinson’s?
“It’s pretty advanced. I’d say I’m going to have to try something more in a little while. There are some (new drugs) coming out soon, and I’m going to see if my doctor will prescribe them.”
She’s been to every World Congress for Parkinson’s — in Washington D.C.; Glasgow, Scotland; Montreal — and plans to attend the fourth one in Portland in 2016.
Thelma plays bridge online and, amazingly, has sculpted in the recent past. She says the relaxation it gave her diminished her shaking so she could shape the clay. However, she had to give it up because of carpal tunnel syndrome.
It takes a woman well-grounded in her own sense of personhood to face gawking kids and total strangers who are trying not to stare, and, in effect, to say to them: This is me, and this is what I’m dealing with. I’ve made my peace with it, and I’d like you to respect that.
Thelma manages to regard an abnormal condition as a normal part of life. That’s a rugged hill to climb, but once done, the achievement has to be satisfying.
When you encounter someone like Thelma, it’s okay to take a lingering look. That’s less hurtful than to quickly and awkwardly avert your eyes. However, meet their eyes with a soft face and a smile; then, add a friendly nod. You’ll both be better for it.
Fred Dickey’s home page is www.freddickey.net
His email is [email protected]