Month: June 2022

My Brain is a Volcano

On By Andi BrownIn Uncategorized10 Comments

Where are these clever and sometimes even erudite words coming from? I mean the ones that just seem to spill out of my brain at will. And how do they manage to arrange themselves so prettily on the page, each one interestingly depicting an idea or a person, or charmingly connecting to another word?

My prefrontal cortex is a volcano and the words are lava.  

I think that’s a pretty neat sentence, if I do say so myself, and before Parkinson’s, I never would have been capable of such an elegant turn of phrase, or at least not with so little effort.

I’ve always been a decent writer, but getting my writing to engage the reader deeply, to establish a mood, or to vividly describe took a fair amount of work. I especially struggled with metaphors, and when I employed them, they were often labored and clunky. And frankly, I don’t think the end product was ever as compelling as what my volcano-brain is churning out these days. Why is that?

Turns out that Parkinson’s is a kind of gift to my brain. Some patients – and I suspect I’m one- respond to dopamine therapy with an emergence of innate artistic skills. In other words, my verbal aptitude is amped up by dopamine medication. I’ve become a “dopa-fiend.” (See blog post The Lost Month for another take on that phrase.)

A different manifestation of the same brain activity among Parkinson’s patients can show up as compulsive gambling or shopping, hoarding or hypersexuality.* I’m not flushing away my retirement savings at jewelry stores, galloping off to Vegas, or checking out guys to hook up with in bars, so there’s something to be thankful for.

So yay, I’m smarter and more creative with Parkinson’s. Well, I’m here to tell you that life with a more creative brain is no bed of roses.**

There’s what I call “the yuckies.” Even a dopa-ed up writer like me can’t find the words to describe what I’m experiencing. It’s kind of like having the flu, with overall body discomfort and near-nausea. Put simply, I feel like crap, or at least a bit “off,”often for several hours a day.

I don’t want to convey the impression that I’m miserably in pain pretty much all the time. I have good days (not terribly symptomatic) along with the not-so-good.

The principal pain center is my lower left leg, which sometimes jiggles and other times hardens into a block of wood. Both sensations are extremely uncomfortable, and often disrupt my life, including my creative activities, because they’re just too damn hard to ignore. If only I could pop a pill and make the feelings disappear. Truth is, I can, but it’s an addictive and sedating medication that I shouldn’t use too frequently, and the effects of which, principally fatigue, don’t exactly lend themselves to much activity, mental or physical, during the daytime.

Would I try to exchange my newly-enhanced brain at the brain store for a more ordinary one? Absolutely. But we play the hand we’re dealt, and at least I’m not (yet) sporting that $30,000 Birkin bag I saw on Ebay.

*I’m no scientist. In fact, high school chemistry and college biology nearly did me in. So apologies if I have misinterpreted or mischaracterized any scientific findings or literature.

**I’m still not smart enough to avoid the occasional cliché.

Recommendation

This gem from HBO doesn’t always get the love it deserves.  Six Feet Under portrays a dysfunctional family that owns a Los Angeles funeral home.  Powerful stories, believable characters and great acting make this a compelling binge. Featuring a pre-Dexter Michael C. Hall.

Till next week!

Andi

I hate my lamp

On By Andi BrownIn Uncategorized6 Comments

I bought the lamp when I first moved into my empty-nester apartment, and thought it the coolest thing.  To turn it on, you swiped your hand over a red dot on the top of its stem, and voila!  It lit up.  It was also in possession of a USB port, so, with its final destination my night table, adjacent to the bed where I’d be reading and watching TV, I’d be able to effortlessly charge my phone all night long.  The lamp was the final touch in the creation of my haven.

I chose it for its brilliance. I like a lot of light when I read. But a funny thing happened on the way from the neurologist. I was diagnosed with Parkinson’s Disease, and everything changed, including my relationship with my lamp. The light that illuminated my calm sanctuary had become a prison searchlight, like you’d see in The Shawshank Redemption or The Great Escape.

My light may have always been harsh, but I hadn’t been bothered by its unsparing, intense glare. But now, post-Parkinson’s, as soon as I entered the room and flicked the switch, I became instantly depressed. Nothing like this had ever happened before. The light illuminated the entire room with its unforgiving rays. My boudoir had taken on the gloomy aspect of a crime scene.

Other changes were afoot. Activities that had once captivated me were now on the back burner…or in some instances, not even on the stove. Knitting, my passion, came not to interest me in the least, whereas at one point, I’d been eagerly daydreaming about attending The Edinburgh Yarn Festival, a knitter’s nirvana. In fact, “knitter” was a key part of my identity. If I’m not a skilled fiber-crafter, than who am I?

Other pleasures were now in retreat. Retired, my need for a professional wardrobe was no more. I gave most of my work clothes to my daughter (who I must say looks adorable in them), but I probably won’t be replacing them because I have zero interest in shopping. Another new and not entirely welcome tendency. Not even a nice new pair of earrings? Nope. How about a pretty summer sundress? Who cares?

I was an avid cook pre-Parkinson’s, eagerly combing through the New York Times Cooking section for dishes that sounded flavorful and nutritious. Now, I hate to admit it but my freezer is filled with Trader Joe’s Indian dinners, and packages of vegetable Gyozas. The missing ingredient in these lost pastimes is energy.

On the other hand, I experienced a rather odd desire the other day. Returning from a visit to a friend in Atlanta, I saw a middle-aged woman reach down to the baggage carousel to collect her luggage. On her arm swung a pristine Louis Vuitton purse. The kind I’d been dreaming about…never! At no time have I been shy about expressing my disdain for clothing and accessories that advertise their creator’s moniker. Logo attire, not for me, ever. Yet in that moment I. Wanted.That. Bag.

Did it symbolize financial security, with the stock market currently tanking? Would it be a special treat after two years during which precious few extravagances made their way into my life? The first word that popped into my head when I saw the bag was not “beautiful.” Nor was it “elegant.” No, the first term that came to mind to describe the purse was “sturdy.”

Perhaps I was drawn to a durable object because I myself am less sturdy than usual. Fortunately, in the very early stages of Parkinson’s, I remain pretty robust, able to take long walks, even though the legs feel a bit wobbly at times.

One thing is certain: I’m not purchasing a Louis Vuitton bag. That’s not who I am, or who I want to be. Plus, I can think of a thousand things I’d rather spend the money on. But maybe I can locate an equally durable, logo-free, fashionable purse that won’t break the bank, and yeah, might provide me with a little bit of a shopping buzz. Maybe I could use that teensy bit of excitement more than I’ve admitted.

Change is an inevitable part of life, but illness can hasten the process, and necessitate choices. Maybe I’ll return to my beloved hobby, but in a different fashion – simpler projects, fewer sweaters, more shawls and scarves perhaps? Or I may no longer knit at all. Who knows? I’m open to the changes because of course I have no choice. It’s a strange situation to be in, and will require patience and open-mindedness. I hope I’m up for the challenge.

Meanwhile, I notice the lighting store around the corner is having a sale.  I think I’ll head over there for a lamp replacement.

Today’s recommendations

If you like nice clothes but you’re on a budget, check out The Real Real.  The garments and accessories are pre-owned but honestly, they’re in mint condition.  And you might have a bit of fun shopping around on the site.

Several years ago, I stumbled upon a little gem of a book called Man at the Helm by Nina Stibbe. It’s about two little girls who decide their family, which includes a younger brother and eccentric mother, needs the titular helmsman in order to be accepted in their snobby village. I’m reading it again for my book group, and I’ve gotta say, “Oh, those Brits! They really know how to make you laugh.” And I did, out loud and frequently, during both readings.

Let the Great World Spin by Colum McCann is one of my favorite books ever. Exquisitely written, the book captures and connects the lives of disparate people during a specific New York moment. It’s heartbreakingly beautiful.

Singin’ in the rain (and the snow, and the sunshine….)

On By Andi BrownIn Uncategorized22 Comments

Nostalgia:  a sentimental longing or wistful affection for the past, typically for a period or place with happy personal associations.

Do you have a happy place or event from your past, one that elicits perhaps a mixed array of emotions?  Glad you got to have that experience in that place, but sad that it’s over?   Maybe it was your participation in the citywide orchestra.  Perhaps it was the school gym where you got together with your first love at afterschool dances.  You wouldn’t be who you are today without those experiences.  Wishing yourself into a time machine won’t bring you back there, though.  Trying – and failing – to replicate the original experience, maybe by visiting the place, might bring on nostalgia’s gloomier cousin, melancholy. 

My nostalgia occasionally drifts into melancholy, especially by way of music.  I have been known to repeatedly play my favorite make-out songs from 1968, the Year of the First Boyfriend, with whom I foolishly broke up for reasons I still don’t quite comprehend.  Listening to The Look of Love and This Guy’s in Love With You can put a damper on my day for sure.  The capacity of a melody to affect one’s emotional state is both intense and mystifying.   Torturing myself with music from a very formative – and sweet – time in my life, it’s as if I want to be miserable.  

My therapist reminds me about the guy who doesn’t understand why his head continues to hurt when he continues to bang it against the wall, but the pain disappears when he stops banging. In other words, stop playing the music that makes me sad.

But for creating a positive, intense musical experience, there’s nothing like singing.  

Singing is often recommended for people with Parkinson’s because, for some patients, loss of vocal power and monotonous speech are symptoms of the disease. Those who sing may regain vocal strength and improve breathing and swallowing.

Even more powerful is the evidence for the benefits of singing in a group.  There have been academic papers written on group singing as a vehicle for building community.  The activity causes the body to release endorphins, which in turn promotes positive feelings along with a deep sense of belonging.  One study showed that cortisol, the stress hormone, was lower in those who sang with others.  Singing collectively can also imbue participants with a sense of well-being, and even elation. 

The memories of my happy place are inextricably connected with singing. I firmly believe that the near-constant bursting into song at Camp Mataponi, an all-girls camp in Naples, Maine, helped invest my nine summers there with joy. And in the process, perhaps because of all those endorphins, I was able to become the more self-assured person I yearned to be, at least for the summer.

I recall vividly my first night at camp. I was nine, and assigned to a cabin with three other girls, two of whom I knew slightly from Hebrew school, and the third a New Yorker I’d never met. All four of us were tucked in for the night, the other three girls weeping softly when a woman who wasn’t our counselor entered the bunk. I heard Lee, the director’s wife, go from bed to bed, talking in soothing tones to every sobbing girl. I didn’t understand why everyone was crying until Lee got to me and asked “Do you miss your mommy?” I had no clue as to why that would be the case, but at least now I knew why everyone was crying. I somehow realized that I was expected to say yes, I missed my mommy, while managing to summon up a few crocodile tears.

And now you might have some notion as to why camp loomed so large in my psyche, and still does. No parental fighting, no unclear set of rules I was always unwittingly breaking and being punished for, no unrealistic expectations for, well, every single aspect of life.  At camp, I was free!!!!

And I flourished. Back home, I was shy and insecure, uncomfortable in social situations, and always afraid of getting into trouble for some infraction, even though I was a good student and a very obedient child (except when I broke the rules I didn’t know existed).

The all-girls environment probably had something to do with my blossoming at camp. I had lots of friends and, miracle of miracles, I became a leader. In a single summer I was elected color war captain of the green team and given the lead in Annie Get Your Gun. I was popular at our socials with neighboring boys’ camps.

Emblematic of the role of singing at camp was the crooning that followed Friday night Sabbath services.  As a younger camper, I couldn’t wait till I got old enough to stay late, when those who wished to could remain for the sheer pleasure of joining our voices in song.  No one noticed the hardness of the social hall benches, or that some of us could barely carry a tune.  What mattered was that we were all friends together for the summer, singing our hearts out as one, as Phil, the music director, accompanied us to Old Man River, One Little Candle, and Green Fields.To me, and I suspect to others, the singing was the true spiritual part of our Sabbath.

A couple of years ago, a camp friend (who was my “little sister” one summer) organized a Zoom sing-a-long. With Mataponi surely the singing-est camp around, it was only fitting that we’d reunite to recapture our youth with music. Before me on my computer appeared nearly 100 screens featuring childhood intimates singing our hearts out as we had when we were eleven. It was happiness personified.

Every once in a while, I’ll hear a song from an old musical, and it brings me back to Mataponi, to those warm Friday nights, Phil at the piano, leading us all in song.

I haven’t sung much in years, but a few days ago I was in my car, and decided to check out my newly-acquired Pandora app, which featured a 60’s playlist.  I have done Karaoke maybe three times in my life, and my go-to song is Be My Baby by the Ronettes.  And up it popped on Pandora!  Naturally, I began to sing with gusto at the top of my lungs, and naturally, to feel a little bit joyful.  

When I arrived home a few minutes later, I kept the app on, and sang some more, with the addition of …..dancing! I’m a pretty lousy dancer but I honestly don’t care. I sang and danced for about half an hour to those songs of my youth, but perhaps because of the singing, I didn’t feel sad. Just a little bit wistful, but mainly just a little bit blissful.

I’ll continue to sing and dance as part of my Parkinson’s treatment.  Because I’m all for things that make me healthy….and happy.

To sleep, perchance to dream….

On By Andi BrownIn Uncategorized7 Comments

Parkinson’s dreams. As in the ones we Parkinsonians act out. Like when I dreamt I was playing basketball, and found myself standing on my bed and leaping onto the floor as I reached for the ball. Or the one where I was again standing on my bed and diving into the swimming pool in my dream, which translated into diving onto the floor in real life, laughing hysterically as I landed. WTF?

Most of my friends complain (a lot!) about sleep issues, i.e. not enough.  Never enough. They try everything and just can’t sleep as much as they’d like, or feel they need to. 

The Facebook Parkinson’s groups are filled with sleep laments – too much or too little. I’m in the former category. Rod Serling might intone: “In a world where up is down, daytime is sometimes night, and sleeping like a baby means a 70-year-old turns into an infant, sleep becomes an impossible objective, as elusive as the snow leopard or Bigfoot. The harder the insomniac tries, the more unattainable sleep becomes. Enter the world of Parkinsonian slumber, also known as The Twilight Zone.” (Literally.)

I’ve had the usual, non-Parkinson’s sleep issues for years, mainly trouble falling asleep. I’d toss and turn for hours, sometimes trying to read myself to sleep, or playing games in my head like remembering every child alphabetically in my elementary school or camp. It sorta kinda worked sometimes. I was actually doing a bit better pre-Parkinson’s diagnosis with the help of a sleep specialist who happens to be my therapist. Here are his directives:

  1. Decide what time you want to wake and how many hours of sleep you need every night.
  2. Say you want to awaken at 7:00 a.m. and get 8 hours of sleep a night. Count backwards eight hours from 7:00 a.m., which means you go to bed at 11:00 p.m. EVERY SINGLE NIGHT. And awaken at the same time EVERY SINGLE MORNING.
  3. No phone or computer screens for an hour or two before lights out. (TV is okay if you’re not right on top of it.) If it takes you more than 20 minutes to fall asleep (or fall back to sleep if you wake up in the middle of the night), get up. Go into another room and read, listen to music, or watch tv. When you feel tired, try again to sleep. Lather, rinse, repeat.

Here’s my current rather bizarre sleep schedule:

7:00 a.m.   Wake up.  Turn on phone, play Spelling Bee and crossword  puzzles in New York Times, Wordle in English, French. and sometimes Italian and Spanish.  

8:00 a.m. Take meds, which include two pills of the sedating pramipexol. Continue puzzles.

8:30 a.m. Back to sleep for first nap of the day, Or is it just a continuation of my night’s sleep broken up by the aforementioned puzzle interlude?

10:00 a.m. Re-awaken after Nap #1.

10:00 a.m. – 3:00 p.m. Go about my business.

3:00 or 4:00 p.m. Nap #2

5:00 p.m.  Re-awaken.

5:00 p.m. – 11:00 pm.   Live my life.

11:00 p.m. –  12:00 a.m.   Back to sleep.

This doesn’t feel right. I don’t like it. Sometimes I forego the morning nap. I’m pretty energized those mornings, but then I’m exhausted in the afternoon.

Sadly, I find I can only engage comfortably in one or two activities a day. If I go to the supermarket in the morning, forget about dinner with a friend at night. That’s a bit of an exaggeration but you get the drift.

This limitation is perhaps my greatest loss – the reduction of time to just plain LIVE.

In a support group posting, advocating for getting past the fatigue, Gaylord-Tanya Diedrich says, “I literally tell myself “you can be less tired on the couch or tired on the go…seriously….choose go.”

I’m working on finding the self-discipline to just get the hell up and GO.

Some entertainment for the week:

Workin’ Moms. Those fun Canadians are at it again (see Dan Levy/Schitt’s Creek post from last week), with an amusing take on the challenges of parenting while working.

Starstruck, in which an average but very disarming woman inadvertently gets mixed up with a movie star. Romance and charm ensue.

Hacks, starring the indispensable Jean Smart as a past-her-prime comic who enlists the assistance of a down-on-her-luck young writer (Hannah Einbinder) to help her get back on top.

See you next week!

Andi