Month: February 2023

Fun with hallucinations and other weird Parkinson’s symptoms

On By Andi BrownIn Uncategorized2 Comments

SEND ME YOUR STORIES OF WEIRD SYMPTOMS – ALL DISEASES WELCOME.

I’ll go first.

I recently read an article on hallucinations in Parkinson’s patients, prompting me to revisit that strange and unanticipated phenomenon, which I discussed in my very first blogpost, titled Creepy-crawlies Under My Skin and published on April 23, 2022.

Here’s what I said then:

Imagine 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 beneath the skin.”  

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 insect 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 think about 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. 

I told my hairdresser about the insects I was certain I’d laid my very own eyes on, and she responded with the tale of her uncle with Parkinson’s who had, against his family’s wishes, insisted on calling the exterminator to rid his home of an insect infestation. Of course, neither in my case nor his, had the creatures been living beings. But to both of us, they were a pestilence that needed to be eliminated.

And now I’m seeing “ghosts” on a fairly regular basis, as if M. Night Shyamalan were seated in a director’s chair in my brain, except he never yells “Cut!” These phantasms are mere suggestions of people and animals, a hazy Dickens-era schoolboy here (yes, they’re often in period costume), an adorable cocker spaniel there. Unlike my first visitation ( see bugs on bras, above), I’ve never, ever thought them real. They provoke neither laughter nor fright. They’re just, for a fleeting moment…benignly there.

There’s also the movement of inanimate objects. The carpet appears to rise off the floor, the bath mat ripples into waves. The most dramatic and seemingly real vision was the twisting of a doorknob, accompanied by the sound of metal( doorknob) on metal (closet door). It was so real I got up to check if perhaps the cat had gotten into the closet and managed to twist the knob from behind. True fact: I have seen the actual cat come pretty close to turning the actual doorknob.

Another Parkinson’s symptom to which I fell prey, and that would be a premier contender for weirdest symptom of this very weird disease is the acting out of events that occur In dreams. Why else would I “dive” into a swimming pool -actually off the bed and onto the floor. Or leap for an invisible basketball and again end up next to my bed, this time laughing as if this were a perfectly-timed joke by (insert name of favorite comedian here). I’ll leave to your imagination the details surrounding the toilet dream.

Last but not least was “the poke!” I was reading on the couch when I felt a finger poke me on the arm. I looked to that side and saw … nothing. No ghostly apparition. No doorknob, no dream-like basketball. Just… the poke.

I imagine further Parkinsonian adventures await.  I won’t say I’m eager to encounter them, because I’m not.  But if they’re neither painful, frightening or otherwise unpleasant, I don’t think I’ll mind.

Now it’s your turn! Send me your weird, little-known, unexpected symptoms, of Parkinson’s or some other condition/ disease, and I’ll include them in a future post (anonymously unless you tell me otherwise). You can post your story directly in the blog or email me at andib88@comcast.net.

Sweet dreams!

Recommendation:

The Mindy Project

By far my new favorite show. Mindy Kaling and company lead me off to dreamland every night with a smile on my face and a hug in my heart. I don’t really know what that means, except it is definitely feel-good TV. Mindy is confident, competent where she needs to be, charming and downright adorable.

And don’t get me started on Chris Messina.

A new name for Parkinson’s pain

On By Andi BrownIn Parkinson's15 Comments

But first, I’ve discovered that my body is the gift that keeps on giving. To refresh your memory…first, Mr. Parkinson came a-calling. But apparently he was lonely and invited “The Hipster” aka hip fracture to join the party. Just as the two were beginning to work as a couple, someone – I’m not telling who – opened the door to the charming Ms. B, aka blepharitis, she of the watery, itchy eye. Two days into a regimen of what was supposed to be a lethal weapon against her charms – prescription eye drops – and she refuses to cease sending freshets of water down my cheeks. Will we need to call in the big gun – The Allergist? Stay tuned.

Back to everyone’s favorite topic – pain. The pain of Parkinson’s, but what I’m about to describe may apply to other chronic illnesses. That is, the existing language of pain doesn’t apply to us.

When I initially developed Parkinson’s symptoms, I had a great deal of difficulty describing them, for they were unlike any other bodily sensation I’d ever experienced. I had no idea what to call the strange phenomena that had invaded my body. Pain, to me, implied a sharp sensation, often though not always sudden and brief. What I faced now was a feeling that took over my butt and my legs. It wasn’t an ache, and it didn’t meet my definition of pain. For want of a better term, I called it “the yuckies,” because there was something unpleasant and disgusting about what I was experiencing. I’ll place one of my most uncomfortable symptoms, muscle stiffness, into a subcategory of the yuckies.

Often, when I met someone who had Parkinson’s, I asked them if they had any pain, and they mostly said “no.” Yet they all felt something mightily unpleasant though they had difficulty describing the sensation. We learned to call the symptomatic episodes “off times,” that is, our medication had worn “off.” Good bye feeling almost normal, hello I’m now a patient facing a really annoying illness.

But what exactly did the off times feel like? Tingling? No. They included but weren’t limited to the yuckies. Has anyone provided a name that conveys what we’re feeling (or ten names for that matter? There may be dozens of PD physical manifestations out there.)

Aching – finally a label we can all understand- is another symptom but on a grand scale, in my case anyway. Imagine your muscles aching after a strenuous workout. Now picture yourself having done nothing more active all afternoon than lie on the couch watching the game. The muscle ache commences at your waist and by halftime it’s taken over your belly, your backside and both limbs down to your ankles. Man, that hurts, until it decides to depart, maybe an hour later, maybe three. At least that’s how it is for me. As we’ve all heard dozens of times, “if you’ve met one person with Parkinson’s, you’ve met one person with Parkinson’s.” So don’t even try to extrapolate from my experiences what your friend in Pawtucket might be feeling.

Here’s another sensation for which a medical term just might exist, but not one in common parlance. Some non-PWP’s (people with Parkinson’s) know it as restless legs syndrome. I know it as tickling under the skin. Also bugs moving around subcutaneously. I find this one especially unpleasant.

I don’t know what exactly they meant but I just learned of someone who described her symptom as the sensation of having to go to the bathroom all over her body. I haven’t had that one though I have experienced a twinge in my hand that signals a strong need to urinate. This goes back decades and has had several doctors stumped. Who knew the human body could be so filled with surprises? And who knew this blog would get so very graphic and personal?

And wait, there’s more. And let me tell you, this might be the weirdest . A few weeks ago I was in bed, reading and minding my own business when I felt a drop of water land on my wrist. I looked up, searching for a leak in the ceiling and, nothing. I touched my wrist and it was not even moist. Over the next couple of weeks, the teeny tiny shower visited me a few more times. This phenomenon actually has a name! It’s called parathesia and my neurologist has actually heard of it. It stems from pressure on the nerve, which sends an abnormal signal to the brain. Or you might prefer this definition I found online: “it is a sign that the spirit realm is trying to communicate with you.” Whatever the trigger, I find it very strange and and I wonder, what next? Will my toenails spontaneously burst into flames? Will I develop a rash in the shape of Beyonce? (or maybe Chris Messina? That I wouldn’t mind).

If anyone has suggestions for describing and/or naming symptoms of Parkinson’s or other conditions, please send them along. I’ll include them in the next post. Meanwhile, I’ll continue to call my tremors, muscle tightening, and other symptoms pain. At least folks will have some idea what I’m talking about.

Have a tremor-free day- or whatever is a realistic wish for you!

Recommendation:

Binocular Vision or really, anything by short story writer Edith Pearlman, who just died a few weeks ago. Why she gained so little recognition until late in life is a mystery. The New York Times said in its obituary “Each story (in her Binocular Vision collection) was chosen to show Ms. Pearlman’s range as she brought the reader into the private worlds of characters as disparate as suburban mothers and Holocaust survivors. The characters tend to have dark secrets and sharp wits, and their lives are transformed from the ordinary to the unexpected in a moment.”

I can’t do better than that, so I’ll just leave you with the suggestion that you get yourself to the nearest library or bookstore and get a copy of anything by Edith Pearlman. Full disclosure: I feel a kinship to Pearlman because, like her, I grew up in a Jewish family in Providence, RI. I now live in Brookline, MA, where she too lived after leaving Rhode Island. Plus, her father was my mother’s eye doctor.