Updated: Jun 18, 2019
Greetings and welcome back to my blog!
Saturday, July 13, 2019 is a big day for The Chris Heider Band. We will be making our debut performance at the Clifton Opera House (COH) in beautiful Clifton, OH. The COH is a quaint and cute small town theater and musical performance venue. My bandmates and I are donating our share of the gate to the University of Cincinnati Gardner Center Precision Medicine Neurodegenerative Disease Fund. To maximize our donation, our goal is to place a body in all 220 seats. Whether you are familiar with the Stray Cats and their hit song "Rock This Town" or not, here's how we're going to do it:
The "Stray Cats" Jingle
"WE'RE GONNA ROCK, CLIFTON,
ROCK IT'S 'OPERA HOUSE'!
WE'RE GONNA STORM THAT STAGE
WE'RE GONNA SING AND SCREAM AND SHOUT!
ON SATURDAY EVENING
2019 - MY BAND AND ME
WE'RE GONNA ROCK, CLIFTON
WE'RE GONNA SELL THAT PLACE RIGHT OUT!!!
BUT, NOT ONLY ROCK,
WE'VE GOT SOME FOLKSY-BLUESY SOUNDS!
WE'RE GONNA COUNTRY-POP-IT
YOU'LL BE CLAPPIN'
NEIL YOUNG, JT
THE BOSS,THE EAGLES
DENVER, DIERKS BENTLEY
GLEN CAMPBELL, JIM CROCE
AND MY BAND AND ME!"
My bandmates and I feel incredibly blessed for the invitation to perform at the Clifton Opera House. Many talented musicians have made their mark there over the years, including my dear friends, Bob Farley and Lynn Perdzock of "Raggedy Edge" and "The Littlest Big Band". It's a privilege and an honor to follow in their footsteps and those of other talented musicians in the greater Dayton area and beyond who have graced the Clifton Opera House stage.
What makes this event all the more exciting for me is my three adult kids and two daughters-in-law are coming back home to Dayton from Denver and Boston to see me perform professionally for the very first time. Cooler still, my son, Benjamin, is a professional filmmaker. I've asked him to film the entire event. Ben's "gonna put me and my bandmates in the movies and all we've got to do is act naturally." For more about Ben and the fantastic work he does, check out his Facebook page at https://www.facebook.com/FranklyBenjaminLLC/ and/or his website https://www.benheider.com/
As mentioned, all band proceeds will benefit The Gardner Center for Movement Disorders at the University of Cincinnati Medical Center. This fund is aimed at pursing precision medicine for Parkinson’s disease and neurodegenerative diseases. The endowed chair and lead researcher of the University of Cincinnati James J. and Joan A. Gardner Family Center for Parkinson’s Disease and Movement Disorders is my personal neurologist, Alberto Espay, MD.
I chose this fund because it was Dr. Espay who treated my father, Francis J. Heider, after he was diagnosed with Parkinson's Disease at age 65 in 1992. In 2009, I was diagnosed with idiopathic Parkinson's Disease by Dr. Espay. Just four years prior, my dad's PD ravaged immune system resulted in his death on August 23, 2005. He was 78 years old.
Not only is Dr. Espay a leading expert in his field, he's just an awesome human being. He has done so much to help slow the progression of my illness. In layman's terms, Dr. Espay is a stud in the neuroscience field. The fact that I am able to stand upright without losing my balance, swing my arms, strum my guitar, and belt out a song is a testament to the man and his expertise. For more information about Dr. Espay, click https://www.uchealth.com/physician/alberto-espay/ .
I made the decision to fund Dr. Espay's research after the recent tornado outbreak in Dayton, OH on Memorial Day, May 27, 2019. When a disaster of that magnitude strikes so close to home it totally changes your perspective. The tornado that originated in Brookville and ended in Beavercreek came within a mile of my mom's house. She and my sister, Mary, had not been watching the news. I called out of concern and told them a tornado was coming right at them - they needed to take cover immediately. They had no idea a storm was coming.
I admit now, much to my shame, that when local news stations interrupted regular programming, I was perturbed. "The Stanley Cup Playoffs are on for crying out loud!" I thought to myself. "Stop with the hype already!"
As their coverage continued, however, I quickly realized the gravity of the situation and how instrumental they were in saving peoples lives that evening. Given the extent of the damage, our local weather forecasters did one heck of a job getting the word out. The destruction I woke up to and watched on the news the next morning was catastrophic. So many peoples lives were literally uprooted. I felt a strong desire to get out and give back. I volunteered a couple of days distributing water and food to victims of the disaster. I hope to do more in the coming days. It's truly better to give than to receive.
My friend and fellow musician, Tony Peters and other artists I met hosting open mics in the area had already been planning a tornado relief fundraiser. Tony asked me to host part of the event and I had a great time, as did all who attended. It was a HUGE success. They raised $4,200.00! The place was packed. It was simply awesome!
That got me thinking about doing something for people I know who have Parkinson's Disease or who know people that do. My band's upcoming performance at Clifton Opera House is the biggest stage I will perform on to date. It holds 220 seats. At $10.00 each, a sellout nets $2,200. My band gets half of that ($1,100.00).
Granted, $1,100 is a far cry from $4,200.00 and compared to the millions of dollars needed it takes to fund PD research, it's a drop in the bucket, if that. But, something, in this case, is better than nothing.
I recognize and accept the reality that some may view this as a publicity stunt to gain attention and sympathy for myself and/or notoriety for my band. As I have no control over the opinions, actions, or accusations of other people, I'm leaving it at that.
My father lost his fight with Parkinson's in 2005. I have numerous relatives, friends, and acquaintances who struggle with the scourge that is PD. My goal is share the reality of what it's like to live with the illness from the perspective of the caretaker and patient. If you or someone you know has PD, I hope this blog is helpful.
The remainder of this blog focuses on three things:
What Parkinson's Disease is and how people are impacted differently by it;
Statistics about the future of PD in the United States and around the world
My dad's personal struggles with PD and how it eventually resulted in his death.
Researchers have discovered that Parkinson's is no longer one disease. In fact, it's much more than that. No two cases of Parkinson's patients are exactly alike.
Unless you have been diagnosed with Parkinson's yourself and/or know intimately someone who has it, when you think of PD you more than likely think of people like Michael J. Fox, a big screen and television actor who was diagnosed with PD in 1991 at age 29.
It is rare for someone as young as Michael J. Fox to be diagnosed with the disease. The average age of diagnosis is 56. Men are likely to be diagnosed than women. Fox's diagnosis at age 29 is known as "young-onset" Parkinson's.
In her August 3, 2017, Parkinson's News Day article "11 Facts about Parkinson's Disease You May Not Know", Marta Rebiero describes Parkinson's as a movement disorder characterized by one or more of the following motor symptoms:
Stiffness (rigidity): muscle stiffness detected by a doctor on examination
Slowness (bradykinesia): decrease in spontaneous and voluntary movement; may include slower walking, less arm swinging while walking, or decreased blinking or facial expression
Resting tremor: a rhythmic, involuntary shaking that occurs in a finger, hand or limb when it's relaxed and disappears during voluntary movement.
Other motor symptoms — walking problems or difficulty with balance and coordination (postural instability) — also may occur. These can happen any time in the course of Parkinson's, but are more likely as the disease advances.
Not everyone with PD experiences all three symptoms, however, slowness is always present. While tremor is the most common symptom at diagnosis, not everyone with Parkinson's has tremor.
However, according to Rebeiro, Parkinson's is much more than a movement disorder. Numerous non-motor symptoms also occur in Parkinson's patients. They are often referred to as the "invisible symptoms". These common symptoms can affect almost every bodily system, occur any time in the course of disease (even before motor symptoms or diagnosis) and differ in severity from person to person. Non-motor symptoms can significantly impact quality of life for people with Parkinson's and their families. They may include:
Autonomic Dysfunction: Parkinson's can affect the automatic/involuntary functions that our bodies perform to keep us alive.
Constipation: decreased or difficult-to-pass bowel movements
Low blood pressure (orthostatic hypotension): decrease in blood pressure when changing positions, such as standing from sitting, which can cause lightheadedness, dizziness or fainting
Sexual problems: erectile dysfunction in men; decreased libido or pain in women
Urine problems: frequent urination, involuntary loss of urine (incontinence) or difficulty emptying the bladder (weak stream)
Sweating problems: excessive perspiration, even when not hot or anxious
Mood and Thinking Changes: Parkinson's disease can impact how you feel and think.
Apathy: lack of motivation and interest in activities
Memory or thinking (cognitive) problems: vary widely; range from multitasking and concentration difficulties that don’t interfere with daily activities (mild cognitive impairment) to significant problems that impact a job and daily and social activities (dementia)
Mood disturbances: depression (sadness, loss of energy, crying spells for no defined reasons, decreased interest in activities) and anxiety (uncontrollable worry)
Psychosis: seeing things that aren't there (visual hallucinations) and having false, often paranoid, beliefs (delusions), such as that a spouse is being unfaithful or money is being stolen
Other Physical Changes: Parkinson's can cause other difficulties, as well.
Drooling: build up of saliva because of decreased swallowing
Pain: discomfort in one body part or the entire body
Skin changes: oily or dry skin; increased risk of melanoma
Excessive daytime sleepiness or fatigue: feeling drowsy, sluggish or exhausted; may be symptoms on their own or result from Parkinson's medications
Smell loss: decreased ability to detect odors
Speech problems: speaking in a soft and monotone voice and sometimes slurring words or mumbling
Swallowing problems: choking, coughing and clearing the throat when eating and drinking
Vision changes: dry eyes, double vision and trouble reading
Sleep problems: insomnia (difficulty falling or staying asleep), restless legs syndrome (an uncomfortable sensation in the legs that goes away with moving them) or REM sleep behavior disorder (acting out dreams)
Weight changes: mild to moderate weight loss; some patients actually gain weight
The following stats compiled by the Parkinson's Foundation based in Miami, FL are sobering, to say the least.
"Nearly one million will be living with Parkinson's disease (PD) in the U.S. by 2020, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and Lou Gehrig's disease (or Amyotrophic Lateral Sclerosis)
An estimated 1.2 million people will be diagnosed with PD in 2030
Approximately 60,000 Americans are diagnosed with PD each year.
More than 10 million people worldwide are living with PD.
Incidence of Parkinson’s disease increases with age, but an estimated four percent of people with PD are diagnosed before age 50.
Men are 1.5 times more likely to have Parkinson's disease than women.
The combined direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income, is estimated to be nearly $25 billion per year in the United States alone.
Medications alone cost an average of $2,500 a year and therapeutic surgery can cost up to $100,000 per person.
My first exposure to Parkinson's Disease raised its ugly head when my father, Francis J. Heider, retired from his job as a dry cleaner in 1992. He was 65 years old. My mom bought my dad a bass fishing boat as a retirement gift. Dad loved to fish; he lived to fish. I think everyone in my family was present when the boat was unveiled beneath the awning on my parents driveway.
Everybody, including and especially my mom and sister, Mary, who lived at my parent's house felt something just wasn't quite right with my dad. He looked old, tired, and lethargic. He had an odd expression on his face - hollow, frozen, distant, and apathetic. He wasn't as steady on his feet as he once was. He moved slower, more cautiously. His stride was shorter. His arms didn't swing in unison with his steps as he walked. He was thrilled with the gift he received, but as he climbed aboard he just didn't look like himself.
As time passed, I noticed whenever I came over to visit my parents at their house, dad had a blank stare on his face, especially when he sat in his easy chair in the front room. His cheeks appeared to droop, his mouth was often open, his eyes seemed glassy - almost as if there's was nothing behind them. Everyone who visited my parents noticed it. So did my mom. We would all learn that look was a common feature portrayed by many PD sufferers - the so-called "Parkinson's look."
I don't recall what convinced my mother to take dad to see a neurologist. More than likely, our family's general practitioner recommended he see one. After one meeting with a neurologist, Dad was diagnosed with Parkinson's Disease.
Parkinson's Disease? What the hell is Parkinson's Disease? Slowly but surely, we all found out. In future blogs, I will describe what it's like to have one of the worst forms of PD a person can contract - from the viewpoint of someone saddled with the disease as well as his or primary caretaker. I will admit now that prior to his death on August 23, 2005, my dad had exhibited every motor and non-motor symptom in the PD manual.
In the later stages of his bout with PD, dad could no longer dress himself, clean himself up after having a bowel movement, take a bath or a shower, hold a spoon in his hand, comb his hair, brush his teeth, much less walk or climb into bed. He was chronically constipated and suffered two hernias, more than likely the result of having to work so hard trying to evacuate his bowels.
At age 65, when he was informed he had PD, my dad stood 6'3 and weighted 240 lbs. At age 78, he was a living, breathing human skeleton. His body had completely atrophied (i.e. he was stiff as a board). I estimate his weight was 175 lbs, if that. He was skin and bones. His muscles were straps of sinew and bulging blood vessels. He had "strings," not hamstrings. There was no ham. No bacon. Just frail bones wrapped with a thin layer of human flesh.
My mom, all of my brothers and sisters and brothers and sisters-in-law, my ex-wife and I, a couple of dad's best friends. my dad's youngest sister and brother-in-law, our parish priest, and the Hospice nurse checking dad's vital signs were all present in dad's bedroom when he breathed his final breath. It was one of the holiest, most sacred moments I've ever experienced in my life. It was finally over.
I can think of three other similar sacred moments - the birth of my son, Zachary, on April 21, 1988, the birth of my son, Benjamin, on March 6, 1990, and the birth of my daughter, Caroline on April 23, 1993. I cried like a baby when each of them were born. Tears of absolute joy.
I cried like a baby when my dad died, too. Tears pursed with sadness, relief, and yes, even joy. The joy you feel when someone you love is finally liberated from the body and united with His creator. In the end, "The Spirit is willing but the flesh is weak."
Join The Chris Heider Band as we celebrate our debut performance at Clifton Opera House, Saturday, July 13, 2019 from 7:30-9:30. Tickets are $10.00 at the door. They go on sale at the box office a half-hour before showtime. Our goal is a sell out. We want every seat in the house filled.
Help us "Rock, Clifton....sell that place right out!" All for a good cause!
Chris Heider - Just Passing Through
The Chris Heider Band