A.A. Milne, Pooh and Piglet
The class of 1960 is sliding into home base any way we can with mobility being a big issue as we enter our 80’s! Remember all that baby equipment that we used to give our young children to encourage freedom of movement? Taking another look at our beginnings might inform our endings.
My boys loved their Jolly-Jumper that bolted in the ceiling beam in the center of the room. I stopped a highly entertaining event when the two oldest boys played “catch” with the baby and shot him across the room by stretching the swing to capacity and letting go. The baby was strapped into the canvas seat, and he torpedoed to each of his brothers.
As old people, we avoid sudden catapulting in anything by use of seat belts and by gait belts with our physical therapists. A Jolly-Jumper has been replaced with rocking chairs, porch swings, canes, walkers and wheel chairs.
A number of conditions can compromise our mobility and our functioning. Parkinson’s disease is just one of those. What follows are personal commentaries from Debbie Snyder Tucker, Judy Zyskowski Moon, Rich Hayse, John Van Slyke, Fred Elder, and me, Glenna Stearman Park.
John sent the above drawing of Pooh and Piglet. Think of it as a touchstone for coping with aging. Glenna contributed the cartoons below. She drew them when she was thinking about our fall 2022 Reunion and imagining the potential for shaking in time to rock and roll music.
Experience with Parkinson’s Disease: Different for Everyone
mayoclinic.org: “Parkinson’s disease is a progressive disorder that affects the nervous system and the parts of the body controlled by the nerves. Symptoms start slowly.”
Parkinson’s disease signs and symptoms can be different for everyone. Early signs may be mild and go unnoticed. Symptoms often begin on one side of the body and usually remain worse on that side, even after symptoms begin to affect the limbs on both sides.
Debbie Snyder Tucker said, “I first noticed an essential tremor in 2018 in my right hand. I wasn’t concerned as my father had essential tremors. Subsequently, I went to a neurologist to confirm the diagnosis. He confirmed it was essential tremor and gave me medication.”
The medication, however, triggered an anxiety attack and was stopped. Debbie followed up with a primary care doctor who noticed an abnormal gait, in addition to the tremor, and prescribed physical therapy.
Debbie went to another neurologist in San Antonio who specialized in Parkinson’s, and he started her on the drug Levodopa Carbidopa.
She is more tired now and also freezes in doorways as the medication wears off. Freezing is the abrupt inability to continue moving. Back on Home Health care, Debbie is getting physical therapy to build up strength and improve her balance.
She remembers that while sleeping, she used to have wild nightmares where she thought she was being chased. She would wake up out of bed to find that she had tried to run and had slammed into her bedroom wall. This dream happened more than once. It happened after she fell asleep and is not the same as hallucinations that occur when falling asleep or waking up. Both are common in early Parkinson’s Disease. Fortunately, she has not experienced this type of dream in the past six years.
stanfordhealthcare.org Levodopa temporarily replaces dopamine, which decreases in Parkinson’s, to treat more symptoms, such as a tremor, slowness and stiffness. Right now, levodopa comes in the form of a pill, a dissolvable tablet, a gel infused into the small intestine, and an inhaler to use as needed.
Judy Zyskowski Moon explained, “My husband was diagnosed with Parkinson’s about seven years ago by a classic symptom, pill rolling between his thumb and pointer finger. Although he retired 14 years before diagnosis, he did have the following symptoms which have now stopped. 1) Acting out dreams, similar to nightmares. 2) Hallucinations, which occur most often when going to sleep or when waking up. He is not taking any L-Dopa, typically prescribed for Parkinson’s, since another brain disorder like Lewy Body Syndrome might be present. L-Dopa is not recommended for other brain issues. L-Dopa did not help him improve.”
Judy reported other symptoms have remained constant for her husband. 
- Loss of motor function (Reflexes also, so driving is out)
- Sporadic bouts of confusion (Especially when tired; smaller environments with minimal furniture work best.)
- Continuing good appetite
- Inability to comprehend and carry out anything involving multiple steps to completion, like cooking a microwave dinner
- Bladder and constipation issues
- Choking sometimes when eating
“He might have several good days, then bad days. We are trying to figure out triggers. Fortunately, he can still walk without assistance and since I’ve been with him in an Assisted Living facility, he seems to be improving in some areas.”
Parkinson’s disease can’t be cured, but medications might significantly improve symptoms. Occasionally, a health care provider may suggest surgery to regulate certain regions of the brain and improve symptoms.
Rich Hayse. “My first symptom was a left hand tremor. I went to
my general practitioner who had me hold my arms straight out in front and turn the palms up and then down. He did not render an opinion, but recommended me to a neurologist. That doctor did the same test and also asked me to walk down the hall. His observation was that I had Parkinson’s disease. When in the narrow confines of a hallway, I may shuffle. In a more wide open space I do not shuffle and can walk more normally. I wanted a second opinion, so I went to the KU Medical Center in Kansas City, where the same basic tests were applied and that neurologist also diagnosed PD. He 
cheerily said, ‘You will die with it, not from it.’
“In March of 2010, 12.5 years ago, I was diagnosed with very mild symptoms that did not change much until the pandemic. Until then my wife and I had gone to a gym to do daily exercise. Once I stopped going to the gym out of fear of Covid, my symptoms became more noticeable. Over time I have developed a weakness in voice and balance issues—falling ever so often. I don’t bounce, but I can get up on my 
own. Having a weak voice is a strong issue for me.”
mayoclinic.org: “In the early stages of Parkinson’s disease, your face may show little or no expression. Your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson’s disease symptoms worsen as the condition progresses over time.”
On drugs, Rich added, “I took Azilect for 12 years, then went off it because my neurologist did not want to renew it. Nevertheless the impact of the drug was so helpful that I insisted to be put back on it.”
Google on Azilect: “Azilect acts by slowing down the breakdown of dopamine in the brain. Dopamine is a chemical that sends information to parts of the brain that control movement and coordination. In early Parkinson’s Azilect can be used as a single drug therapy to slow progression of symptoms.”
Rich says that his personal belief is that exercise is critically important in controlling or delaying this disease. He and his wife are not currently discussing assisted living or care-giving issues.
John Van Slyke has had Parkinson’s for many years, over which his symptoms have progressed. The key issues for him are balance and
fine motor coordination, with tremors and cognitive issues less so. He considers himself extremely fortunate, but this is the luck of the draw. He says that a person who has Parkinson’s disease needs a sense of humor to deal with both aging and Parkinson’s. At a certain point, age-related declines and those attributable to Parkinson’s disease become indistinguishable. “Ultimately, all of the parts of our bodies and brains break, and we head under the sod.…”
“It is also a good idea to be skeptical when looking at and comparing the experience of others who have Parkinson’s. So-called experts say that the reason is that Parkinson’s disease presents and progresses in ways that are unique to individuals. Variations are so great that generalizations cannot be made. That is not true.”
Speaking as one who knows from statistics, John says this statement is absurd. “When looking broadly at the data from millions of cases, symptoms of Parkinson’s disease cluster. There also are variations of Parkinson’s disease itself, which is a movement disorder. The disease 
progresses in phases, and each phase has certain characteristics.”
“The key issue seems to be the rate at which symptoms progress from phase to phase in individuals. For example, Parkinson’s progresses slowly in some people, and adverse effects can be managed with levodopa, the go-to med for Parkinson’s disease. In other people, the progression of Parkinson’s disease is much more virulent, and some people can be totally debilitated or dead within a few years.” John has known friends who went through the entire cycle from diagnosis to death in as few as five years.
“Parkinson’s disease is a medical condition. It is not a result of an act of god or bad karma. Consequently, the best course of action is to locate a competent neurologist and follow the medication and exercise protocols prescribed. Make the most of the good years that are left, and step up to end of life decisions early while you have clarity of mind. One such decision may be to check out on your own terms. 
Belgium and some states in the US, like Washington and California, have laws and agencies that allow people to take control over their lives and die with dignity.” That is the path John says he will be taking.
Meanwhile, John advises making the best of it and developing a sense of purpose to your life. “Talk to others who have Parkinson’s disease and share experiences and approaches to dealing with issues and symptoms. The worst thing to do is to adopt a strategy that is based on self-pity and negative thinking. Parkinson’s disease strikes mainly randomly and out of the blue. Best to accept those facts, get on with it, and make life as easy as possible for spouses and care givers. They often have the worst of it.”
Myparkinson’s.com reminds us that “Parkinson’s disease is a neurological disease that becomes progressively worse over time. Non-motor symptoms such as cognitive impairment, behavior changes, and psychosis, are common in later-stage Parkinson’s. All these factors can create caregiving challenges. “
A Note to Caregivers: The extra care one gives to a Parkinson’s patient requires careful attention to one’s self. Simplifying the environment is a significant issue. Throw rugs, tripping hazards, and unstable furniture need to be removed. Often the best option is to move into Assisted Living where the caregiver has back up. Many different levels of care can be offered; although often costly, it can be useful in the future.
Fred Elder reported that, “At least today, I do not have diagnosed
Parkinson’s disease.” For a while he was incorrectly diagnosed with neuropathy, but an MRI showed that he had significant spinal issues, which resulted in spinal surgery in late July to “reduce the compression on spinal nerves (laminectomy) and to anchor a loose lumbar vertebra (fusion).”
Fred was told, no twisting, bending, or lifting more than 10 pounds for 3 months following surgery; hence, his not attending the Wichita
reunion. Since then Fred has been able to walk longer distances while learning to take shorter and slower steps and walk correctly by training occasionally with a walker. He said that he should be able to recover the walking deficits within six months to a year. Fred’s goal is a major Colorado hike next August. Hopefully, we will be reading another hiking story, similar to the entertaining ones from his European treks. Fred’s slight left hand tremors have not been diagnosed as PD, but may just be what is called “Parkinson’s syndrome.”
Glenna Stearman Park. My oldest son, Dr. Joel T. Park MD/PhD, looked over this report, and suggested that knowing the difference between Parkinson’s disease and Parkinson’s syndrome is important. He says, “In one case a neurologist has diagnosed the nerve disease and in the other, a patient may have some Parkinson’s symptoms without actually having PD.” So many problems cross over and are similar as we decline with age. He suggests that “exercise is a very compelling and powerful self treatment,” even if it is just 10 minutes a day. In PD, various types of dementia are difficult to diagnose. Sometimes they need the same treatment. The brain disorder can be Alzheimer’s, Lewy Body, or “somewhat forgetful.”
Symptoms of Parkinson’s vs. Symptoms of Aging
Falling: Babies in walkers followed busy parents and siblings around the house as they were curious and wanting to be part of family activity. That pre-walking framework gave a stability to the constant practice of mobility and exploration. Throw rugs and excessive decorative elements were removed then as they are now. Tripping and falling are major issues and require specific processes in getting up, then and now.
I fell down the basement stairs and hit my head on the floor. That kind of fall requires a trip to the ER, x-rays and follow up check for head injury. Falling outside often attracts the attention of friends and strangers who might understand how to pick up an older person or just call EMS, which gets lots of calls to pick up older people. Slipping on a wet floor made me do the splits without benefit of being in shape. That
pick up was difficult and earned me a week at Mass General in Boston.
In middle school and high school gym classes, we girls had to learn to “butt walk” where you sit up on the floor and basically walk by moving your gluteus maximus forward. Our gym teachers even set up “races” down the basketball court. I finally understood a logic for that skill when I fell in a narrow passage and “butt walked” to where firemen could help me get up. Not to waste my skills, I have earned the status of frequent flier from the fire department’s “pick up” crew.
Tremors: Shaky hands can revisit as we age. Training a toddler to
drink from a Tommy Tippy cup reminds me of trying to carry a coffee cup in my left hand as I leave a string of spills on the carpet. From medication after-effects, I once lost my ability to hold silverware. It happened quite shockingly as we were having dinner with friends. I could not pick up my glass of water and could not hold a fork or spoon. My friends offered to spoon feed me like a baby, but I asked if they would be OK if I ate with my fingers. Everybody laughed. Later at another house, I could not hold a coffee cup. It was mildly amusing when my young grandson said, “Grandma, wait a minute. I know what you need.” Then he dashed to the kitchen and brought back a straw. It was a perfect way to handle the situation. Many people carry water bottles everywhere.
Language: This is an entertaining process with babies. They babble and squeal. Then, they start putting words together. One of my sons always tried to tell me about the helicopters flying over student housing using the words “upper choppers” and “he-coppers.” A young grandson loved his green rubber “dinawhores.” Adults can have slurred speech, awkward combinations of words, and even complete loss of a word. Middle and high school parties were very amusing as we acted out words and phrases in Charades. Now as we age and lose our words, we may rely on our talent at Charades to manage a conversation. We often have to function like a walking thesaurus to complete an idea or comment.
Structuring a look at Parkinson’s symptoms around the parallels between baby development and our demise suggests humor. I have a left hand tremor, a loss of vocabulary, and frequent falls, a walker and sometimes a wheel chair. I do not have PD. I am old. Life has it’s ironies. We go out like we came in.
Perhaps, like the inscrutable star child at the conclusion of the book and movie 2001, A Space Odyssey, we are all reverting to infancy.
Useful information about Parkinson’s Disease
As several of us mentioned, talking with others who have Parkinson’s or who care for PD patients can be very helpful. If you would like to talk with one of us, contact Marilyn Tompkins Bellert (mbellert@niu.edu) for help in making connections.
The best online sources I found for information about Parkinson’s:
DIAGNOSIS – mayoclinic.org: There isn’t a specific test to diagnose Parkinson’s disease. A doctor trained in nervous system conditions (neurologist) will diagnose Parkinson’s disease based on your medical history, a review of your signs and symptoms, and a neurological and physical examination.
Your doctor may suggest a specific single-photon emission computerized tomography (SPECT) scan called a dopamine transporter (DAT) scan. Although this can help support the suspicion that you have Parkinson’s disease, it is your symptoms and neurological examination that ultimately determine the correct diagnosis. Most people do not require a DAT scan.
Your health care provider may order lab tests, such as blood tests, to rule out other conditions that may be causing your symptoms.
Imaging tests — such as an MRI, ultrasound of the brain and PET scans — also may be used to help rule out other disorders. Imaging tests aren’t particularly helpful for diagnosing Parkinson’s disease.
In addition to your examination, your health care provider may give you carbidopa-levodopa (Rytary, Sinemet, others), all Parkinson’s disease medications. You must be given a sufficient dose to show the benefit, as low doses for a day or two aren’t reliable. Significant improvement with medication will often confirm your diagnosis of Parkinson’s disease.
Sometimes it takes time to diagnose Parkinson’s disease. Health care providers may recommend regular follow-up appointments with neurologists trained in movement disorders to evaluate your condition and symptoms over time and diagnose Parkinson’s disease.
An article in the October/November 2022 of AARP Magazine entitled “Brain Health” describes what it calls a breakthrough treatment for Parkinson’s called Ultrasonic Parkinson’s Relief. Tests indicate it is effective in reducing essential tremors, muscle rigidity and uncontrolled movements, especially for those with one-sided problems.
I’ve talked with most of you over many decades, before and after PD. Your candor, wit, observations and concern for what other folks around PD person should and shouldn’t think about is valuable, as well as warning signs. I prefer to deal with health as I dealt with exercise: ignore. But prostate cancer late 50s, having doc that knew my temperament (!) and teased, cajoled, reasoned and argued as I needed was invaluable. More cancers followed. Chug on as we all try to do. Strategies at one age are good and circumstances change.
Thanks again.
And, Glenna, PLEASE don’t give my daughter ideas with the baby slingshot for dad who doesn’t understand anyway.
Glenna, as usual you write with stunning clarity tempered by wit and wisdom. Please keep writing for us and please give the fire department a chance to go assist some other oldies. Meanwhile, I’m going to practice butt-walking!
Butt-walking is a piece of cake. But how do I get up off the floor when I am done? No diagnosis yet but it is almost impossible to get mascara on the lashes without looking like I lost a fight. Keep on keeping on, fellow 🧳 travelers.
I have a T-shirt with the Winnie-the-Pooh picture and saying you have above. A.A Milne was such a wonderful philosopher through his Pooh stories. Milne’s poems and stories are still my favorites, so I keep them close at hand. Sometimes I need the reminder to make today my favorite.
Janice, Pooh and Piglet were brought to the story by John Van Slyke who is negotiating his own Parkinson’s with the grace of Milne’s writing. I thought it was a very significant contribution for all of our aging issues!