A new name for Parkinson’s pain

On By Andi BrownIn Parkinson's

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.

15 thoughts on “A new name for Parkinson’s pain”

  1. Judith Fineman

    Thanks for sending, Andi. 

    We just returned from Australia. Will call you soon. Have to wake up!

    Missed you, 

    <

    div>Love, me

    Judy Fineman

    <

    div dir=”ltr”>

    <

    blockquote type=”cite”>

    Like

  4. I tried to find Pearlman’s address – she was described somewhere as living in a middle class Jewish neighborhood- but was not successful. Tell me what you think about the stories if you decide to read them.

    Like

  8. Thanks for your honesty and transparency. The strangest symptom I have so far is drooling. I’m minding my own business when I realize that the right side of my beard, just under my mouth, is soaking wet.
    I do a lot of cooking for my family. It is so embarrassing when I look into the pot and a huge drop of salivagoes into whatever I am preparing.
    Pavlov’s dogs have nothing on me.

    Like

  9. Anonymous

    It “pains” me to hear about your pain. I’m so sorry you’re dealing with this, but on a brighter note, your writing has reached a new level of excellence!

    Like

  10. Robin

    Hi Andi,
    Although I read many posts written by PWP online as well as communicate directly with many PWP in a local support group, I have yet to meet anybody who has such a similar pain to mine as you do. I also get the awful aches that spread through the lower half of my body that remind me of the type of aches I would get post strenuous exercise. And again, these aches seem to appear without rhyme or reason and are more often present than not. I, however, am beginning to believe that these aches are not a symptom of my Parkinson’s but are rather a side effect of the Levadopa/Carbadopa. But since I am unable to “test” stopping the L/C because I need it to function, I can’t confirm this. I find this achy symptom to be my post “painful” part of my current plight and so I am forever attempting to figure out what exactly is causing this symptom and what I can do to counter it. Being a PWP is like being a detective, always trying to figure out the “mystery” of our own individual experience. I’m hoping that someday I will be able to stop the C/L and be able to use the now being developed Parkinson’s Gloves instead and then maybe, just maybe, I’ll be able to ascertain which of my symptoms are from the disease and which are due to the medication.

    Like

  11. Hi Robin,
    Thanks for writing. I too am confused: what’s a symptom of PD and what of the meds. (In addition to C/L, I take Pramipexol and Gabapenten. I’m actually feeling the best (least off time) lately than I have in years, so I am not messing with the meds right now. Oh, when I’m having a really bad “off” period, I reach for the ATivan, which is magical for me – the yuckies, the aches and even the attendant depression go away, from this one tiny pill. The downside is that it can promote cognitive decline, so I try not to take more than 3-4 a week. I’d take it every day if I could. When I’m having a tough period, I tell myself that there’s always surgery. And now the gloves, maybe even this year!
    Hang in there, Robin. I was pleased to hear about your symptoms because it’s always nice to be validated. You’re not alone. Just out of curiosity, where do you live? I’m in the Boston area.
    Take good care, and feel to get in touch any time.
    Best,
    Andi

    Like

    1. Robin

      Thanks for your message, Andi. It’s interesting that Ativan is your panacea. I have a prescription for Ativan that I was originally prescribed for occasional use for anxiety (prior to my diagnosis of Parkinson’s), but I almost never take it. I have not found it to be particularly helpful for my Parkinson’s symptoms. I too am reluctant to take Ativan regularly (and I don’t) because my Mom has been taking it or other benzos daily, 3x per day, for probably 50 years now and she has almost no short-term memory left. Clearly that is extreme use and in no way equivalent to your use, but I concur that being careful with Ativan is a prudent move!
      And yes, I also feel validated in reading of your symptoms that are so similar to mine. These leg aches have been particularly upsetting to me because my MDS has stated that these are not Parkinson’s symptoms and must be due to some other cause. Well now that I read of your experience, I tend to think my MDS just may be wrong! (Imagine that!)
      You asked where I am located–not too far from you actually. I live in Kittery, Maine, which is about an hour’s drive from Boston. So hello fellow New Englander!
      And by the way, one of my most pronounced Parkinson’s symptoms is my stiffness and slowness in my right hand. This makes it far more cumbersome to type and so I don’t normally write long messages or emails on the computer anymore and I don’t like using any voice to text programs. However, this morning, about 1.5 hours after my first dose of C/L, my hand is feeling particularly limber, so I am thrilled to be able to type you this long response. I’m certain I would write more comments on your blog posts were it not for this difficulty, as I really enjoy all of your musings. You are a talented writer.
      All the best Andi and thank you for your blog!
      Robin

      Like

Comments are closed.