71. COO-EEE BLOGGERS ONE AND ALL.
Hello. Hello. Hello. Anyone still out there? Coo-ee? I’m back.
Hi Care-partners, Parkinson’s bloggers. Hi blog readers, hopefully, you.
Like Thomas the Tank Engine getting up steam, I think I can I think I can…begin blogging again. Once a month beginning this first Saturday in May. Thereafter the first of each month. Yup. At this moment I feel I can keep going FOREVER. Will have to anyway while David needs me as his caregiver, like it or not.
Rejuvenated by my break, I’m again ready to take up the pen…or should I say tap the keys…and keep going like the 8 and 0 symbols of infinity I’ve just celebrated this April.
To top this milestone, for the first time since beginning writing, I received an email offering me something.
“What me? God’s truth?” my sentiment, not my actual words.
“We’d like to invite you to a PARKINSON’S ADVOCACY BLOGGERS SUMMIT in LA. All expenses paid.”
Airfare, pick-up at the airport, hotel and meals, plus… was I hearing right…what the organizers called a small Honorarium. Which to me, meant money falling from the sky at a time I needed it to pay my speed-working friend formatting The Perfect Servant—nope blogs into book form.
“We found you through your blog,” the organizer replied when I inquired suspicious the email was some kind of scam.
Reassured the invite was legit, I disguised myself in casual chic and hopped on the plane to join the other seven participants, all of whom were there like me because of their blogs on Parkinson’s. Three brought their Care-partners.
All of us Parkinson’s survivors, and that’s the truth— survivors—for each exhibited marvelous endurance and determination in the midst of dreadful suffering.
We all of us had a massive amount to say as to diagnosis….a couple of the young women at the Summit waited years before discovering what the hell was happening with their bodies. When one woman learned she suffered from Parkinsons she threw her arms about the doctor, she was so relieved she didn’t have ALS, or some other feared disease.
“What?” she later corrected herself, “Am I nuts? I’m pleased to have Parkinson's?”
Forced to self-educate ourselves about the vagaries of the dreaded Parkinson’s symptoms, treatment, medication choices and information… well … all over the country it seems the medical profession’s knowledge of Parkinson’s was and still is too often horribly and sadly lacking.
Ironic, we, the desperate untrained bloggers, have to search out a Movement Disorder Clinic and Specialist for information and support. Diagnosis too, can you believe?I wasn’t the only moaner. Each blogger at the Summit, described similar tales of doctors’ woeful ignorance.
“You’ve taught me something today,” I remember David’s neurologist confessing when I told her David’s improved movement was due to a program called Think Big and Loud.
It’s still a mystery why David and I are doing so much better day to day. The only answer I can come up with is ACCEPTANCE of what cannot be changed… I’m talking of the damn Parkinson’s, of course.
Hate to sound so preachy, but it’s the only explanation I can come up with and genuinely believe. Doesn’t mean I don’t loose it every so often, like the times David cannot lift his legs high enough for me to pull on/off his socks and shoes for example, and I’m stuck waiting with my back killing me, U-bent over at his feet waiting to help.
“Bloody Hell. LIFT!” I yell to vent, but no longer feel any anger in it.
I accept David’s and my lives can never run the natural course of healthy ablebodied folk. Normal. That we’re stuck in this night of the present till one of us is no more.
No denying. We look odd. Are odd in the way we interact. Me struggling him to his feet, spooning food, steering a cup or glass to his mouth, walking backwards holding him from crashing into objects when his eyes freeze shut. One of the things I miss the most from the time David was autonomous is to be free to just get up and go. No fuss, no delay, no doing for another person, no trundling him into his jacket and to the car.
“Ain’t going to happen I tell myself.”
The light does glimmer some part of every day, every week and month despite the exhausting and debilitating regime Parkinson’s demands of us, both David the sufferer, and me his carepartner alike.
At a concert recently, sunk deep in the midst of a dreamy movement of Schumann’s Fourth Symphony, the thought came to me how lucky David and I are to have each other. We share love. We have a good marriage. I’m so lucky how much he helps me. How even tempered. Without him I’d be a wreck.
We’ve just come back from a dental trip to Puerto Vallarta in Mexico. It was David’s idea. I had long given up…ACCEPTED…David’s symptoms were too hard to cope with for us to travel this year.
“I’d like to see our dentist in Mexico,” he announced out of the blue.
“It’s ever so late to find accommodation, and flights,” I fenced. “Plus I’m not taking you without finding a person to come with us to help.”
Boom, boom, boom, done. Unheard of…within two hours everything fell into place…beachfront two bedroom at our timeshare for two weeks, perfect dates and flights, and a male friend desperate for dental work.
Had a super and refreshing break, two implants notwithstanding. Talk about a glorious break, the bluest sea, and time to breathe over a margarita or two…
So here we are back home still trucking.
