Creepy-crawlies under my skin

On By Andi BrownIn Uncategorized

“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!

Andi

36 thoughts on “Creepy-crawlies under my skin”

    2. peter ruggill face book

      great to read a humorous narrative about life with parkinsons instead of the usual complaining, and or searching for a better pill and doctor. your focus is on life and not on the nasty disease which needs to be ignorerd or ridiculed. welcome to the club.

      Liked by 1 person

      1. That’s so nice of you to say, Peter, and to get in touch. I’m glad you enjoyed the blog so far. If you don’t mind, it would be great if you could subscribe; the more subscribers I have, the easier it is for people to find the blog when they search. Thanks for your consideration. Best, Andi

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  2. Alison

    I fell in love with Velvet when you first recommended it. Thank you! Let me know if you ever need a dance partner ❤

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  3. Anonymous

    Andi- so entertaining and informative! We love you – and your writing is amazing – your charm and humor and attitude always carry the day.
    ‘Sex Education’ anyone?
    We hope to come visit soon!
    XOXO, Leslie and Stan

    Like

  4. leslie

    Andi- so entertaining and informative! We love you – and your writing is amazing – your charm and humor and attitude always carry the day.
    ‘Sex Education’ anyone?
    We hope to come visit soon!
    XOXO, Leslie and Stan

    Like

  5. starlightmidat

    Andi: I love your writing style!
    Regarding Restless leg syndrome, my husband has had RLS for many years. At least 15 years ago, his neurologist at the time (since retired) recommend an off-label use of oxycodone-acetaminophen (APAP) 5/325 Mg (brand is Percoset) once a day (typically around 3 PM). The neurologist also had RLS, and this medicine worked well for him. Bottom line: the off-label use of this low-dose opioid really controls Gary’s RLS. Every so often when he is overly tired, he will get RLS, and then he takes one or two small tabs of Ropinerole 0.5 MG (brand is Requip). In addition, every day around 3 PM he takes two tablets of Ropinerole Extended Release 2 MG (brand is Requip XL) to keep the RLS under control. Feel free to contact me directly for any questions. XXX Judy. — JKOPFF@AOL.COM

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  8. Maureen

    Andi, I look forward to reading your blog posts. You’ve got a big group of fans out here. Thank you so much for including me!

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  9. Francey J Nathan

    Andi, I am so sorry to hear this. My Dad was diagnosed with it when he was 57 or 58. I think they know much more now than they did then. I have actually been to see the neurologist a few times for what i thought were symptoms. If you’d like to talk, i will be happy to give you my phone number. Thanking of you!

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  10. Karen Gormley

    Hi Andi! I wasn’t aware you had been diagnosed with Parkinsons. I found this blog post very informative and entertaining at the same time. Love your writing. I remember buying both of your published books and then getting to meet you in Boston 🙂 Take care x

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  11. Batya Neppe

    Hi Andi
    I really appreciated your positive way of looking at such a challenging situation
    Have you ever lived in Rhode Island?

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      1. Hi batya k.a. Barbara. I don’t know why i thought that might be sarcastic. Of course you have no way of knowing that it is that Andi Brown, your cousin from Providence, John Howland school, etc.

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  12. Fredda Zaiger

    Hi Andi
    I’m am so sorry to learn about your diagnosis.
    You are a beautiful writer.Your great sense of humor and sarcasm really shine.
    Looking forward to following your blog as you navigate this new you.
    ❤Fredda

    Like

  13. Betsy feld

    Andi… what an upbeat attitude…. Am hoping your symptoms ease and you can feel comfortable! Your writing is so creative and engaging and I’d love to subscribe to your blog.
    Loved “Velvet” and also “ Black, money, love”….
    Just watched “anatomy of a scandal “… watch it!
    Still knitting and ripping.
    Take care, love, me❤️

    Like

    1. So nice to hear from you, Betsy. And thanks for subscribing!
      I’m unfortunately not knitting as much as usual; can’t seem to find the energy. I am about to turn on the TV to watch the third episode of anatomy of a scandal. Yes it’s very good.
      Thank you pu for getting in touch!
      Love,
      Andi

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  14. George M. Goodwin

    A fine piece of writing, Andi. Thank you for including me. I was of course delighted to see that your blog now includes your recent article for “Rhode Island Jewish Historical Notes.” I hope that you’re planning to write another about your roots in Little Rhody. Meanwhile, best wishes, George

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    1. Andi

      I am thanking about another article, George, with a co-rider. I’ll keep you posted when we have more to tell you. Thanks, Andi

      Like

  15. Thanks Andi, for sharing some of your struggles with us in a most poignant and witty way! I look forward to being one of your most loyal blog readers!
    ~Kenny Weinstein

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  17. Jeff Johnson

    Thanks for including me in your circle, Andi. I have another dear friend who is waging the war against Parkinsons. She was fighting it (literally) by learning boxing. This blog is a great idea and you are the one to do it right. A sense of (dark) humor is some of the best medicine. Wishing you the best as we share your struggle.❤️

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