April 2024 was Parkinson’s Awareness Month. I’m aware I have PD, as are many of you. We’re in the know, lucky us. So, let’s hunker down and find a cure. Please. Dr. James Parkinson, who first identified the disease in an 1817 essay, “An Essay on the Shaking Palsy,” was born on April 11, 1755,…
When my precise – he died eight months to the day after his cancer was diagnosed – and extraordinary father was dying he said that he didn’t mind dying so much, but that knowing when was troublesome.
“We love our children the best we can.” I defend the parents who did and do love me with all that they are, all that they are able to muster.
“Let’s play ‘Ask a Parkie,” I say, helping my mother to pull herself up to the room service breakfast table. “What?” She asks, pouring us coffee with a hand steadier than mine will ever be again. “Ask me anything about Parkinson’s Disease, anything.” She starts to tap dance. “Do you like your doctor?” “Yes.”“How often do…
“I brought you some lemons,” she said, showing me a bowl brimming with sunny spheres. “Thank you,” I replied to my longtime housekeeper. That’s one of the blessings of living in Southern California, stuff grows. I mean everything, everywhere. Citrus trees are fecund with fruit. “One tree will serve a whole family,” says my husband….
April is Parkinson’s Awareness Month. I am quite aware I have Parkinson’s. I bet other twitchers are too. What good does awareness do? Does it help the outstretched hands of non-profits? “Now that you’re aware of fill-in-the-blank will you write a check?” Maybe. Every day of every month someone is trying to make me aware…
“Georgia O’Keeffe moved to rural New Mexico, from which she would sign her letters to the people she loved, “from the faraway nearby.” It was a way to measure physical and psychic geography together. Emotion has its geography, affection is what is nearby, within the boundaries of the self. You can be a thousand miles…
“Do you ever cry?” asked the blue-suited banker as our formal lunch segued from spreadsheets to stories. “I had a very dark weekend when I was first diagnosed.” Reflexively, I share the story of the weekend after my Thursday diagnosis almost five years ago. In truth, I barely cried then – the reality of the…
This post originally appeared on the Parkinson’s Community LA Blog in the fall of 2019. In honor of James Parkinson’s birthday (April 11, 1755) I am reposting it here. My left-hand dances to a beat all its own. It doesn’t need a partner or even music. The digits just flutter. Constantly. Faster when I’m cold,…
On November 5, 2015 – the anniversary of Guy Fawkes and his Catholic crew’s attempt to blow up the British Parliament in 1605 – my world was blown up with a diagnosis. “Could it be anything else?” I asked the head of UCLA’s Movement Disorder Clinic “No, it’s Parkinson’s Disease,” he replied. There was never denial…
On a crisp November morning, an esteemed neurologist confirms what I already know. “It’s Parkinson’s Disease.” “Could it be anything else?” “No. You have PD. But I have patients who are in their eighties and nineties – and I know that you’ll be one of those too.” Learning that one has a neurodegenerative disease is…
I am losing my mind. Am I’m losing it to my Parkinson’s Disease? To age? To maladies yet to be diagnosed? I stare into space, trying desperately to remember what was right there, right there, on the tip of my tongue just moments ago. Then it hits me: I have children. It’s not the Parkinson’s…
I am happy because my home is solid and my kids… well, they’re here and kinda solid too. I am happy to have learned from my many mistakes and hope that this hard-earned knowledge will spare others pain. I am happy that I have Parkinson’s Disease instead of Multiple Sclerosis which I admit seems like…
“If you’ve got your health, you’ve got everything.” Well, then, I am lacking. I am afflicted. But so are many. My conditions are my constant companions. They’ll shuffle along this mortal coil with me for as long as I shuffle along upon it. But there is a gift in my conditional state: my chronic ailments…
There is no challenge that duct tape can’t overcome in the right hands. My husband has such hands. There is a pesky, Parkie peculiarity pertaining to stairs. Specifically–walking down them. When I look down, I see the step as if I’m wearing reading glasses and looking at a distant object. The challenge is heightened when…
I Have the Touch* Of a community that doesn’t want me afflicted. Of literal embrace. Of phones that would be answered in the middle of the night. I am touched. “Have you heard?” “No, what?” “I have Parkinson’s Disease,” I share my then-recent diagnosis as I join the parent posse outside of our children’s school….
“Shoe” is a good word as is “sale.” When combined… well, who can resist such bipedal pleasure? Not I. Thus, I am shod in new shiny slides. They are well-priced. They are pretty. They are comfortable. They are flat. Flats and low heels have always dominated my closet. Now … they are my closet. High…
“Your hand is shaking,” says a well-coiffed brunette of a certain age who, like me, is waiting, waiting and waiting for her car. “Can I help you?” I smile – we’ve just been at a posh cocktail party for a children’s charity. “I have Parkinson’s Disease.” “Would you like assistance?” I dive back into my…
April is Parkinson’s awareness month. I’m already aware I have Parkinson’s. You are too. As of this sentence, if not before. What is the point of such awareness – in April or in any month? Is it like giving people volunteer opportunities? Is it all a self-aggrandizing way to raise money? Is it okay if…
Do you have a tribe? You should. You need one. At least one. Trust me. I have several. A posse of Parkie pals. A sisterhood of mothers. Friends from all eras of my life. Preschool pals who remember when I sucked my thumb. College chums who remember the passions I explored: friends from my various…
“Do you have delusions?” asked my husband while we were watching TV, reacting to the commercial that just aired. “No!” I said emphatically. Delusions of grandeur? Perhaps. But the people who are in my room are there in the flesh. And they’re usually asking for something. True, I do hallucinate occasionally that my children aren’t…
It’s been said that when those of us with Parkinson’s Disease receive our initial diagnosis most ask, ‘Why me?’ It never occurred to me to ask that question. I believe that I have PD because the Universe is random, but God’s grace is not. I believe that it might just as well be me twitching…
When I was first diagnosed with Parkinson’s Disease in late 2015, a couple of close friends envisioned my near future with dread. They had me losing my license …. or in a wheelchair, the dementia unit or my coffin. They were living in the fear of my brain’s future wreckage. I was somewhat shell shocked…
Throughout time, great physicists and soldiers put their heads together to create. In Wuppertal-Elberfeld Germany in 1938, in Los Alamos in 1945. They combined their superior intellect for its seemingly highest purpose— to create a stronger pesticide, to split the atom—all to improve our lives. Instead they gave us the threads to sew our own…
If “it” has a name, then you can deal with “it.” Fight “it.” If “it” has a name “it” is a quantifiable enemy that can be vanquished. Decades ago, on a crisp Fall day I walked out of an office with a name—a diagnosis. ADHD—the “it” that ailed my older stepson, the one I don’t…
I got the horse right here The name is Paul Revere One of my favorite numbers in Guys and Dolls is sung by a trio of gamblers. And here’s a guy that says if the weather’s clear Can do, can do, this guy says the horse can do If he says the horse can do,…
I had a vision for my life. Perfection of the sort seen on big screens and small greeting cards everywhere. I had a vision of my life – and then I lived it. The white picket fence with the blended family of four – two steps, two bios — all living happily together, memorialized in…
I have no sense of direction. Literally. I can get lost on a straight line, never mind a path with twists and turns. Understandable, I guess as I come from a people who were lost in the desert for 40 years. Frankly, if it weren’t for GPS I’d be late everywhere all of the time….
I’m a huge fan of Jim Carrey’s “Liar, Liar,” about a workaholic attorney who loses his ability to … well… massage the truth… and in so doing becomes a better person and father. I’m particularly fond of Carrey’s Claw routine when his arm is possessed by a loving ‘Tickle Monster’. My husband and I enjoyed…
I think about mortality as much as the next 51-year-old – maybe more so because I have a neuro-degenerative disease that may result in disability, dementia or death – but not now. I’m here and quite alright now. And now is the only gift that we are guaranteed so hope that you’ll join me and embrace it….
So, how did my tremulous life begin? I guess, as with most things, it started when I was a child. Because of the side effects of the asthma treatments available in the Dinosaur Age, I often had shaky hands. Theophylline and Marax – drugs few doctors are even familiar with today were all that were…
I hosted an End-of-the-Year party for one of my kid’s classes. Cocktail hour was fast approaching as the party wound down, so I opened the bar. As I carried two drinks I announced that, “I serve all cocktails shaken, not stirred.” I laughed. No one else did. Among the few who heard me there were…
“If they make a big deal out of it, just tell ‘em it’s contagious,” my husband ‘advised’ when I told him that a manicure/pedicure was part of my plan for the day. “So if you see a large number of manicurists running in the street…” I responded… “I’ll know you’ve taken my advice,” my hubby…
I believe without justification but with unshakable faith that I twitch for a reason. I believe that I have Parkinson’s Disease because the universe is random, but that God’s grace is not. I hope that through my twitch that I might be able to help those whose walk with God shakes like mine does –…
I’m good. I hope you are too. I’m not on any Parkinson Disease symptom-relief medication for a variety of reasons – chief among them is that my tremor only marginally restricts my life. The medications I do take will, hopefully, slow down my disease’s progression. I won’t know how they’re working for decades. So, how…
The day after we told my mother about my twitch was sunny and beautiful. The type of Saturday that makes Palm Beach appealing even to those of us from postcard-worthy LA. Naturally, my mother and daughter decided on an indoor activity – shopping.Shopping is my daughter’s and mother’s ‘thing’. As my daughter puts it, “I…
“So, you’re coping,” she ‘asked’ about this major swerve in my life’s road. “Yes, yes, I am,” I said, as we’re only acquaintances and our time together was short. Still, it took a lot of effort to resist the urge to retort, “No, not really. I could fall apart at any moment. Arm yourself and…
“Tell her,” my youngest whispered urgently as we waited to check into our hotel. My mother stood by my side. “No, not yet.” My seven-year-old sat nearby clutching his monkey. I returned my attention to the front desk where my mother was invoking the name of the resort’s manager to criticize the harried gentleman working…
“Will your arm shake like that for the rest of your life?” my wee one asked as he started his drift toward sleep. “Probably.” “That’s creepy,” he said. “Yeah.”After a moment, I started to pull away, telling my tired tike that it was time to sleep. He held onto my right arm, the steady one…
I was diagnosed with PD a few months after my 50th birthday, smack dab in the middle between the cut off for early on-set PD – those who are diagnosed before their 40th birthday – and the average age of diagnosis, which is 60. Thus, I’ve determined I have “Precocious On-set PD” – or POPD…
I’m a Parkie. As a Parkinson’s Disease (PD) patient I’m allowed to refer to myself as such. I learned this from Jon Palfreman’s Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease, which I started reading as soon as PD was determined — while I was still in the exam room, to be…
After one of my few trips to Costco that didn’t leave me loathing humanity, I stopped at the Food Court to purchase a soda. With my cup in hand, I went to the soda station. “We’re making a mess here,” said a woman to a little girl I assumed was her daughter, as the duo…