Why? Why? Why?

For me, the most shocking aspect of becoming ill is that…it wasn’t supposed to happen! My father lived to be 96 and my mother 90. My dad had experienced several health issues during his long life (tiny stroke at 60, a mild heart attack a few years later, non-fatal case of prostate cancer) and my mom had hardly any health problems till the very end. I’d won the genetic lottery, right? I was destined to be trekking around the world in my eighties and if I thought about aging at all, which I didn’t much, I figured I’d be felled by some cancer at ninety. Whoever runs this show had other plans for me.

If I ever get those cats I’ve been considering, I think I’ll name them “Twitch” and “Tremor.” The twitch is pretty much exactly what you’d expect: an involuntary movement, my leg taking orders from no one but itself with a kick or bend of the ankle. Oddly, it recalls the sensation of my daughter squirming around in my belly. The difference: this hurts. That didn’t.

My Parkinson’s also expresses himself (his pronouns are he/him) every night around 7:00 p.m. with an intense and very unpleasant ache that usually starts around my ankles, and moves up my body, settling in on his final resting place for the night in my hips and my butt. It matters not if I’ve exercised a lot that day or not; I feel as if I’ve climbed Everest every night. I found some relief to counter this annoyance…and you’ll have to wait till my next post to see what it is.

I turned seventy in February, 2021, at which time I’d experienced some symptoms but didn’t yet know what was in store for me.  I was expecting to retire around 72, but when I was informed of my condition, and experiencing increasingly disturbing symptoms, I decided to move it up a bit.  My last day of work was January 18, 2022.

I was ambivalent about this significant life change.  Initially, as I pondered my permanent exit from the workforce, I was convinced I needed a solid plan in place, so that when I awoke that first Monday of my unemployed life, I’d know that I would be at, say, a class on Tuesday, and a volunteer commitment on Thursday.

But with fatigue from medication cramping my style (working at home allowed me to indulge in naps in the afternoon with no one the wiser), I acknowledged that a full lineup of activities might not be the best idea, with the help, nay insistence, of friends who thought I was nuts and strongly encouraged me to go “plan-free.”

Do you remember the famous Twilight Zone episode, in which avid reader Burgess Meredith survives some sort of apocalypse? Alone, he stumbles into the local library, whose books are miraculously intact. He has enough canned food to last a lifetime, surrounded by his precious volumes. The future looks pretty bright…until his glasses fall, shattering their lenses along with his dreams. All those books, and he can’t read a one.

Maybe I should try for a spot as a TV critic.  Yeah, I spend a lot of time doing THAT.

I’m the vision-impaired protagonist in that scenario, with the library my retirement, and the shattered glass my shattered retirement hopes. I thought retirement would afford me ample opportunity to do all the things I’d lacked enough time for while employed–more knitting, cooking, writing – favorite hobbies that have waned in recent months due to apathy and fatigue. It’s not that I want to knit. I want to want to knit, but I lack motivation and energy, which is probably related to both the disease and the medication. These conditions may change once my dosage is at optimal levels.

Immune Boosting Ginger Nectar Here’s my cure for the blues and/or illness. I always make this when I have a cold or the flu. It can’t cure Covid, or really anything else, but it may very well help you feel better.

Peel a large hunk of fresh ginger and cut into a couple of big chunks. Put into a pot and pour a couple of cups of water over it, then squeeze in the juice from a lemon. Add some honey and a little bit of cayenne pepper. I sometimes add a few shakes of cinnamon (or a whole stick) for taste and because it’s good for the immune system. Let the whole thing simmer for around 10 minutes. Then get out your favorite mug and allow the potion to soothe your aching bones. At night, I sometimes add a little bourbon, which is very nice.

Do you have a favorite feelgood potion, activity, distraction from your PD?  DO SHARE!

Till next time!


Creepy-crawlies under my skin

“My leg feels like it’s made of wood,” I tell my friend, attempting to describe my Parkinson’s symptoms.

“But is it like balsa wood?“ she inquires.  “Or maybe more oak-y?”

“Shut up.  I’m describing a sensation in my body, not a model plane or chardonnay.”

I try again. “My left thigh and calf feel heavy, like some object has taken up permanent residence inside me. Do this: tighten the muscle in your calf or thigh.  I’ll tell you when to stop.”

“Okay, I’ve tightened.  I get it.  When can I stop?”

“Never,” I reply.“ This is what it’s like, all day every day.  But wait, there’s more!  Imagine,” I tell her, “there are bugs under your skin and they’re crawling around ALL THE TIME. Another way to think of it is it’s as if someone is tickling you under the skin.”  

I’m now eight months into my Parkinson’s diagnosis, though surely several years into the disease.  Who knew that some pretty weird experiences were symptoms of a life-altering condition, one that I’d given absolutely no thought to?

Although there was that strange recurring dream from my thirties and forties.  Occasionally, before waking, I’d dream that I had MS, evidenced by a weak feeling in my legs and my falling onto the floor because my legs couldn’t support the weight of my body.  Whenever I had the dream, I woke thinking “I have MS in me, and some day it will fully flower in waking life”.  No, I don’t have MS but that disease and Parkinson’s share some characteristics so I do wonder, was my unconscious sending me a message for the future?

Weird symptoms please!

Acting out one’s dreams   I was diving into a swimming pool (dream) and found myself standing on my bed (real life) whereupon I “dove” onto the floor.  Fortunately, I was unhurt.  About a month later, I dreamt I was playing basketball (something I hadn’t done since summer camp) and again stood on my bed and leapt for the ball, landing on the floor as I burst out laughing.  

Who would have ever suspected these incidents as harbingers of a chronic illness?

Hallucinations  Whether fully awake or half asleep, starting a few years ago, I would see things when I went into the bathroom during the night  And the things were…insects, crawling all over my bras, which were swaying on the towel  rack.  The bows on the bras transformed into grasshopper-like critters,  or sometimes I thought of them as tiny fairies, celebrating some special occasion as they cavorted through my undergarments. No other objects in the bathroom moved of their own accord, but I must have been convinced of the insects’ existence because, one particularly buggy night, I found some bug spray and gave them a good soaking, I awoke the next morning no closer to the truth, finding only my damp lingerie.  

Then I decided to document the wildlife that had invaded my bathroom, and attempted to film their little ballet.  I’d set up my phone’s camera and tear into the room but as soon as I drew close to the action, it stopped.  So, believe it or not, I never did get a decent snap of my entomological visitors partying the night away.

You’re no doubt wondering why I didn’t check myself into a psychiatric hospital after the spraying and documenting.  Wasn’t I worried about the fact that I’D DOUSED MY UNDERWEAR IN BUG SPRAY?  OR TRIED TO FILM MY DANCING BRAS?  I wonder that too.  What was going through my mind as I accepted as real these chimera that had “invaded” my home?  Your guess is as good as mine.

In case you’re wondering, now that I’m on carbi-dopa leva-dopa,  I’m no longer entertained by those nocturnal creepy invaders, though the bras do seem to continue their swaying movements on occasion. 

Restless legs syndrome The sensation described above as bugs/tickling under the skin had been a once or twice yearly phenomenon, usually occurring in a movie theater.  A few years ago, though, I had an attack while pinned to a table at the acupuncturist’s; I had to yell for her to come and remove the pins immediately.  Never had the expression “jumping out of my skin” felt more apt.    

Tremors  These fall into the category of “normal” signs of Parkinson’s, but I’m including them since they are my principal symptom.  They started several years ago, and were limited primarily to my left leg.  I was assured by my PCP that it was likely an essential tremor and not to worry about it, though she did suggest I see a neurologist.  It was after a year of several visits and a worsening of the tremor and muscle stiffening that the neurologist diagnosed me with Parkinson’s.

Drooling.  And then there’s that.

Tell us about your own weird symptoms. 

You may be seeking information on the latest Parkinson’s treatments, research, and the like. Stop! You’re in the wrong place. There are lots of excellent sites for information and support out there. I particularly like Twitchy Woman (and what a great title). Also, for fun, check out Who Stole My Dopamine?

And now, some recommendations to see you through your days.  I’ve been an avid consumer of all types of entertainment but, like many of us during these provoking times, I’ve lost my appetite for the dark and the brooding.  Example: the film Spencer, with yes, a stunning performance by Kristen Stewart, but after half an hour, I’d had enough of the lugubrious cello music and the glacial pacing.  I knew it was a quality production but I just couldn’t handle the moody tone.  

So, herewith are some fun entertainments:

Derry Girls on Netflix – teens in Derry, Northern Ireland getting up to all sorts of hilarious mischief. True confession: I’ve watched every episode five times and I’m not ashamed.

Velvet, also on Netflix – Possibly my favorite series ever, an upstairs/downstairs drama set in a posh Madrid department store.  Yeah, soapy and maybe even a little predictable, but man, those gorgeous fifties outfits, business hijinks and romances! Fall in love with Ana and Alberto and all the rest.

Any recommendations for some upbeat entertainment? Comments welcome!

Till next time!