Sara Kerr

Musings

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Lover of Snow, Winter Vacations, Good Beer & Great Music, Minnesota Weather, French Wine & Sidewalks. Yogi for life.
  • My Path to Deep Brain Stimulation (DBS)

    My Path to Deep Brain Stimulation (DBS)

    Why I decided to have brain surgery

    Happy 5th Anniversary to my Bionic Brain

    I’m celebrating the decision by getting a new battery for my Percept Deep Brain Stimulator and by taking Iriah dance classes with other adults, who don’t have Parkinson’s Disease. A fact that astonishedd my neurologist (and delighted him, as well.) Surprising doctors, is my specialty. I shocked the previous one, by showing up to the appointment, sweaty from cross country skiing for two hours a mere two weeks post surgery. A perfect snow had fallen, and I felt great. How could I not ski?

    No regrets

    I have never doubted thr decision. It eradicated the painful, unpredictable, and frankly untenable dyskinesia. Continue reading to learn why it was so awful. Inspite on a long a chronic fear of needles and hospitals, I enthusiastically scheduled the 7.5 hour surgery that required me to be awake and articulate, for the next available appointment, as soon as possible.

    This post was updated Nov. 7, 2025. The original was written two years ago.

    Disappointed, sort of

    I am like Excel without pivot tables: so much data that cannot be analyzed and used. My DBS is underutilized. Yes, my life post DBS is certainly better, but I still live with a great deal of variability in terms of how well I can move every day. I am the most unreliable friend. Thankfully my friends understand. My current neurologist, whom I really like working with, isn’t among the four identified by Medtronic. He’s great for many reasons. But he doesn’t believe there is any need to change my DBS ever again. This doesn’t seem right. The $100,000 DBS system in my brain came with so much potential. I feel like I need to explore it.

    My Brain Surgery

    I had the newest deep brain stimulation (DBS) device implanted in my brain in November 2020. My neurosurgeon recommended the Medtronic percept system because of its great potential to provide up to four simulation settings for four unique situations. In other words, the stimulation would be different based on my needs. For example, my dystonia is worse in the evening so one would assume that I need a different level of stimulation to treat that versus when I’m sleeping or exercising.

    …the Percept™ PC now represents the first opportunity to observe and capture brain signals of interest in the broader population of patients receiving DBS while also delivering stimulation, all outside the research environment. Within the BrainSense™ platform, the immediate benefits of brain sensing and diary functions include implications for programming and correlating symptoms with neurophysiologic features. 

    Joohi Jimenez-Shahed (2021) Device profile of the percept PC deep brain stimulation system for the treatment of Parkinson’s disease and related disorders,Expert Review of Medical Devices, 18:4, 319-332, DOI: 10.1080/17434440.2021.1909471

    I’ve got the data, who wants to play?

    New tech appeals to me. It’s like a new toy for grown-up kids. I need to find someone who’s excited to play with the data my brain is producing. While I live in Medtronics backyard, in a state overflowing with medical professionals, per Medtronic, there are only four neurologists who work directly with Percept here.

    As with any new technology, initial high rates of adoption are likely to be seen as clinicians explore the potential for value added to their practices and care of their patients. However, there is an anticipated learning curve that will be required for physicians to familiarize themselves with a neurophysiologic approach to understanding disease and DBS care which may be more time consuming. This combined with the limitations of Percept™ PC in its current form may therefore temper initial interest for some practitioners.

    Joohi Jimenez-Shahed (2021) Device profile of the percept PC deep brain stimulation system for the treatment of Parkinson’s disease and related disorders,Expert Review of Medical Devices, 18:4, 319-332, DOI: 10.1080/17434440.2021.1909471

    One of the four Percept-trained doctors in Minnesota, was my neurologist who recommended DBS, despite my relatively recent diagnosis. My Parkinson’s disease was challenging. We could not find a medication therapy to treat my symptoms without producing disabling dyskinesia and nimmediate wearing off (rapid on/off cycle). I kept detailed journals and my doctor prescribed almost all formulations of carbidopa/levodopa.

    Why I elected to have DBS

    My life sucked with only two hours each day when I could kind of move like a normal person.

    “On time” is Parkinson’s slang for when you feel great because your meds work and you can move fluidly.

    “Off time,” naturally, is the opposite. It’s when you experiencing all your Parkinson’s symptoms either because your meds are not working or you didn’t and take them.

    About a year of record keeping (me) and pharmaceutical adjustments (my doc), we knew that eating and exercise caused large and unpredictable fluctuations in my ability to move fluidly, versus being frozen in rigidity (being “off”) or writhing about in constant and painful movement (dyskinesia). We adjusted these independent factors (diet, exercise, and medications) in many permutations. But nothing worked.

    My response to medication remained highly unpredictable. I was never quite sure how I was going to feel and move at any time of day. Other than there would be many hours where I was so rigid I could do nothing or writhing in pain with dyskinesia. There seemed to be some unknown variable working behind the scenes wrecking havoc in response to my medication. So three years after the car accident that unleashed my Parkinson’s, I had two hours each day that I could move well. So for the second time, my neurologist recommended DBS.

    And I said yes.

  • My Work

    My Work

    Books
    Shopping Bag
    Clothing
    Woodblock prints on vintage maps

  • CHANNELING GRIEF THROUGH ART

    CHANNELING GRIEF THROUGH ART

    Art is where my grief comes out. As I watched my father linger until he passed January 31 from here to the next, complex feelings hit me that I have to acknowledge. At 96, he led an interesting and fulfilling life, but he was not ready to go. Nor did I but I also hated watching him suffer.

    My Mother

    When my mother was dying, a relatively short few months that were excreuitiqting to witness, we all spent hours by her side as she surfaced from a btain injury-induced fog and angry to be living as she was. At the same time, my family was moving to North Carolina early that summer. One day, ignoring the boxes needing to be packed, I sat down at the sewing machine and played with a pile of scraps. Almost magically (because I was not really aware of what I was doing), a complex flower emerged. The design came from one my sister’s gorgeous paintings. The luscious flower was how I celebrated my gorgeous, lovely and talented mother.

    Grieving My Fahter AND My Mother

    My parents and my darling in the Florida Keys.

    I feel like I’m grieving my mother all over again.

    For months, when my dad was diagnosed with Covid for the umpteenth time. I was making, creating, sewing etc. from the moment I was able to move until I fell into bed. When he passed I was angry. And the urge to create stopped. I’m trying to rekindle it. Here’s my dad’s story — and my mom’s since they were married for 55 years.

    A tongue-in-cheek version of my dad’s story

    He was an amazing storyteller, so my memories are full of tall tales, humor, and life lessons.


    My dad, John (Jack) Kerr Jr. passed away at 96 surrounded by his family on January 31, 2024. We all like to think our loved ones pass peacefully but my dad was the most stubborn person I know. He would have lived forever if he could have. So I prefer to think of him kicking and screaming on his way out the door.

    Like me, and my brother Paul, he was a native Iowegian. Where our mom benefited from a hospital when we came to be in Iowa, our dad was born on the family farm near the Field of Dreams. A smart and handsome man, he planned on college, caught the war fever, and enlisted in the Navy. At the end of World War II, he returned to school, completing the degrees and licensure required to be a psychiatric social worker. To me, he was a pacifist and anti-violence.

    The story goes that upon graduation, he and a beautiful Italian singer in Boston had the very same idea of moving to Miami, I remember them saying they wanted to move as far away from their families as they could. We know they met on a blind date and we’re told there were martinis involved. They had a never-ending wanderlust and curiosity about the world that I cyertainly inherited.

    When my dad finally came home from Korea, he sported a mustache that he kept regardless of whims of fashion. Our mom, on the other hand, had a glorious sense of style. The rest of my smart, creative, and fabulous siblings joined the family as my dad pursued his career in multiple states (having a kid in each.) Iowa was supposed to be a stopover like everywhere else, but they stayed awhile. I take full credit for keeping my parents so young — in appearance and action.

    Although he never farmed, my dad’s skill with tractors and tools was ever-present. Whether he was adding yet another screened porch to our latest home, roofed with sailcloth, teaching each of us adoring children how to properly lay a brick 🧱driveway, or muck a 🐎 horse stall. Boarding horses and flipping houses (back when there weren’t capital gains taxes…) were our family’s side businesses.

    Fun

    My parents enjoyed life. But two things stand out to me; sailing and the continuous string of sports cars that brought them so much joy. They toured the country in British roadsters (always hiding the keys declaring no teenager could safely handle a Triumph “TR4” (his first), a Jaguar E-type, or MGB. ). Where as I won’t even take my B to Paul’s house, but she is 50 years old now. They purportedly stuffed all 5 of us kids into a roadster and went to church. Hmmm, but I do remember the long drives in the country with my hair flying everywhere, and my dad telling us there were no speed limits in the country.

    Food

    In photos, he was once quite trim but my mother was an excellent cook so I have no memory of a thin father. At homr, we spent a lot of time debating the latest book/article we had read, enjoying the Kerr family dish of linguini with clam sauce, preceded by a very dry martini, and accompanied by a glass of wine. It’s kind of cool now to say we made our pasta and polenta from scratch, but at the time I was not impressed by the chore or my mom’s cooking her way through “Mastering the Art of French Cooking….”

    Travel

    Travel permeated their life. From the annual motorhome trip to the Keys, picking my Nan up on the way back to visiting us kids where we studied. After my mother passed in 2006, he was sad and depressed (no surprise!). So my brilliant sisters and I ganged up on him and “sent” him to Italy where he had the great fortune of meeting, Sharon, his partner of 16 years. With her, he found new meaning which ultimately kept him with us until he was 96. Thank you, Sharon.

    Weird and wonderful lessons

    My childhood was filled with learning, both weird & wonderful, how to pull a sailboat with a motorhome on a super narrow 7-mile bridge, how to double cluching (👏🏽to Steve), and a unique type of frugality that makes room for wants and passions by cutting back where few would. My favorite home was heated with wood because it was so much cheaper than electric. But the best lesson was reading the wind and always looking over the horizon for the next great place.

  • My Beloved Aunt Angela

    My Beloved Aunt Angela

    My beloved Aunt Angela passed away Sunday. It was not unexpected but that doesn’t make it hurt any less. She was 89.

    A singular number

    She had the same phone number for 50, 60 or maybe even 70 years I don’t know.

    Just think on that for a moment.

    What does that mean?

    To me it meant reliability, confidence, and contentment.

    It also means I could always find my Aunt Angela. I could count on her to always be there when I needed her.

    Today I am comfortable with words like quirky, odd, capricious, unconventional, and divergent. As the kid who never quite fit in, they didn’t feel very good.

    She’s the only person that never made me feel like I was different.

    It was the most precious gift.

    Unlike my Beloved Aunt Angela, I am the eccentric aunt. You know the one who delights your children with the most unusual gifts; who pairs cowgirl boots with never seen before purses, and is unsure of her natural hair color.

    She gave me the confidence to be me.

  • Grief in art and French

    Grief in art and French

    Ma mère est morte en 2006. En mars, elle était en vacances avec mon père prés de Key West ce qui est trop loin de Miami pour faire une différence. Elle a eu une saignement du cerveau sous anticoagulants. Rien de bon ne peut venir de cette combinaison.

    Au même temps, ma sœur, Lisa, peignait une série de lys pour sa fille. J’ai fait cette couette basée sur une ses peintures pendant notre mère mourait lentement à l’hôpital. Chaque morceau de tissu retient mon chagrin, chaque trait contient ma tristesse.

    Elle est décédée le jour du 55e anniversaire de leur mariage en juillet.

    Elle me manque tellement. Elle aurait pu dissiper mes craintes pour l’avenir.

    Why French?

    I have no idea. So here’s the translation.

    My mother died in 2006. In March, she was on vacation with my dad near Key West which was too far from Miami to make a difference. She had a brain bleed on anticoagulants. Nothing good can come from this combination.

    At the same time, my sister, Lisa, was painting a series of lilies for her daughter. I made this quilt based on one of her paintings while our mother was slowly diying in the hospital. Every piece of cloth holds my grief, every line holds my sadness.

    She passed on their 55th anniversary of their wedding in July.

    I miss her so much. She could have allayed my fears for the future.

  • KLM lost my luggage

    KLM lost my luggage

    And my gifts of mustard and goodwill

    Not quite as catchy as “United Broke My Taylor Guitar,” but it’ll do pig 🐷 .

    This story was a lot funnier, before I erased it from Instagram. (And a lot shorter, too) It must’ve been good because the image of my lovely friend MK cartwheeling & chortling on her front lawn continues to thwart my sleep. (Kidding- a plethora of ideas deserve the blame.)

    But alas, like my #LostLuggage full of Pearson Nut Rolls, Native Harvested Wild Rice, and the five beloved jars of moutarde française, that wild tale is lost to the memories of my iPhone.

    Saved by my random recall!

    #NoMoreShopping

    (Seriously there’s no room in my bag for anything more—I was forced to open the bags of Carambar I’d bought for my kids and stow thé single caramels in my (new) shoes. (Désolée).

    Why is this funny!? China and Taiwan will kiss and make up, men will cease driving in Saudi Arabia, and Texas will vote blue (one can hope) before I forgo my Mom’s early, diligent, and prescient training.

    Besides I kind of like France. 💙🤍💔

    I could see MK rolling her eyes 👀 at the impossibility of me spending the next two weeks in France 🇫🇷 — land of my favorite things, host to many wicked smart writers (Yourcenar, Voltaire, Childs), and yes doer of bad, bad things, without shopping. I’m a damn good buyer, shopper, purchasing agent, Call it what you will, this skill (often maligned in the context of shoes and thrifting) bought undervalued stocks, fed my wanderlust, and saw value in forgotten real estate.

    My absolutely mignon Monoprix valise in claire bleue already defies the natural laws of physics. One more gift could cause an explosion — and I’m not checking this bag.

    Bonnuit

    Say goodnight to my adorable new $70 @monoprix mini-valise. It’s packed with my new PJs, airy sun dresses (»), a modest swimsuit that fits 😳😲😮, des sous vêtements—bien sûr, shampooing, etc.

    Perfection is the enemy of the good.

    Le mieux est l’ennemi du bien, a translation of the Italian proverb il meglio è nemico del bene.[

    Voltaire (1764), “Art dramatique”, in Dictionnaire philosophique (in French), published 1878: “C’est bien ici qu’on peut dire : Il meglio è l’inimico del bene”

    Publish the Damn Post, Sara. It’s good enough.

  • The Power of Shared Stories

    I cannot lose the stories we’ve created together. Unlike a photo album, there is nothing tangible that could be taken or destroyed. Stories are not static, they morph into a phase that becomes our short hand for a complex and profound idea. Our stories bind us together because using them feels like a comforting enveloping hug. But none of them are serious or even notable. They are quirky and frequently contextual.

    Our Words

    On y va, Guys! We speak franglais a lot at home. Two of my kids speak French so well, I’m envious. In France, one says, “On y va” On y va, pronounced “o(n) nee va,” is a quick, informal way to suggest an outing. In France it’s used to say, “Let’s go,” “Wanna go?” or “Here we go.” As the awesome parents we are, we encourage our children (and our dog) to speak French. In Minnesota, we don’t have “Y’all” or “Yous,” here it’s always, “Guys” as in, “Guys! Wait up!” or “What are you guys doing tonight?”

    Mosty flat Yeah, right Google. A few short months and a lifetime ago prior to the pandemic, we took our kids to Europe. We had promised Francophones the trip in appreciation of their studies. Nor could we leave one behind. He wanted to go to Pompeii and Rome. We said, “Certo!” of course. Armed with Siri and Google, we easily found what we were looking for. But nowhere in Rome is flat. It’s known as the city of 7 hills. Quand Même, Google?! Everywhere we went in Rome, Google told us the way was mostly flat.

    “Mostly flat” now means something is not what it seems and there’s a lot more to the story.

    Quand Même! Naturally, you must be curious what this means. I like to think of it as a polite, French version of WTF! But really, you say it when you’re really surprised.

    More to come tomorrow…

    Yadda, Yadda, Yadda

    72 Hours

    Husband Number Blonde

    Weather.

  • My Madeleine: S.O.B. by Nathaniel Rateliff and the Nightsweats

    My Madeleine: S.O.B. by Nathaniel Rateliff and the Nightsweats

    So I started writing this poem about one of my sisters, “I think of you, when I eat Kale.”


    Yeah, that’s kind of odd or “different,” as we say in Minnesota. But that’s one of the cool things about having a neurological disorder–people EXPECT me to be weird. I’m enjoying it.

    Music is my soul food

    Anyway, as thoughts of my sister sashayed through my dreams last night, I realized how music narrates my life. How songs evoke powerful emotions in me –my Proustian Madeleines. I realized later that I have very few intimate friends that are not as passionate about music as I am. My marriage would be weaker

    James Taylor’s “Mexico” reminds me of dancing with my sisters as a young child;

    “Country Roads” and “We are Family” conjure the magic of driving around with my daughter, singing—loudly;

    “Chicken Fried Steak” summons my younger son grinning ear-to-ear;

    Where as my eldest son shares at least a dozen songs for cooking together as does my spouse.

    But music and dance are not my languages — I embody color, flavor, and words. But my sister, her spouse, and daughter do with such grace and power. Watching her move –dance, stretch, or simply walk–and her spouse groove to music while making it with his voice and instruments thrills and confounds me. I have no idea how they do it. And their daughter’s voice is earthy and ethereal, so much like my mom.

    Last summer, extended family performed “Love Train” at a Prince event. All of you who were there, do you recalll how we danced and sang together joyfully as everyone else looked on but would not (or could not) unglue themselves from the safety of the walls? I left thinking how lucky I am to be part of this family. Fast forward to today. I spilled something , I swore under my breath saying, “Son of a bitch,” in perfect mimicry of my dad.

    So I grabbed my phone, queued up this song (loudly) and danced, cleaning up the mess. Maybe it’s not the most appropriate song to consider if he ever passes away, but it’s how I’d send him off.

    He’s fine, by the way. If anyone will live forever, it would be my father. ❤️

  • Gorgeous Garden in a Drought

    Five Tips to Survive the Drought in Your Backyard

    My yard is dead. I don’t mind because I’m not fond of lawn grass. Nor do I want to waste our precious resource. That’s water, which might be surprising to my Arizona readers. After all, Minnesota is crowned by Lake superior (the largest freshwater lake in the world) and bordered by the mighty Mississippi River. All we need to do is take a look at White Bear Lake, the St. Croix River or Lake Minnetonka to see that even we need to be careful with our water use.

    But I have a plan. (Because after all with Parkinson’s picking up a shovel is never going to happen again.)

    Derek Carwood, a sustainable landscape designer is helping me reimagine my front yard. So instead of a tiny, patch of dead grass ringed with mature trees, there will be a lovely entertaining space that doesn’t require daily watering.

    Derek and his company, Greenwood Horticulture, offer complete design services for your outdoor space or advice on your houseplants, plus bigger educational events such as for a garden club or company.

    I love Derek’s approach of thinking about sustainability from the very beginning–at the design stage–vs. trying to fix a series of bad ideas later. This speaks to me on a personal level because I spent a lot of time studying behavioral economics. Basically, I studied people’s buying decisions and what affected their choices, such as planting hybrid roses vs. purple coneflowers (Echinacea angustifolia) or companies trading the right to pollute vs. designing a system that pollutes less (or none at all).

    By re-thinking our gardens and landscapes as not only places of beauty and leisure, but also as smaller pieces of the greater ecosystem puzzle around us, we can create richly diverse and sustainable habitats for all flora and fauna.

    Greenwood Horticulture https://greenwoodhort.com/

    Five Tips for Surviving the Drought in Your Backyard

    1. Cut back on watering your lawn before you cut back on watering perennials—especially newly established plants. 
    2. Newly planted gardens need slow, heavy watering to encourage deeper root systems. Once established, most native pollinator gardens are very drought tolerant—much more so than most non-native plants. 
    3. Water your gardens early in the morning, before the heat of the sun so that water can fully penetrate the soil rather than evaporating. 
    4. Shallow water dishes, bird baths, and other containers provide much needed water for wildlife and keep critters from abandoning gardens during dry spells. Check for mosquito larvae and refill as needed. 
    5. Grey water from showers, baths, and sinks can be used to water the lawn and garden. Use all-nature soaps and cleaners and spread evenly throughout a given area. 
    A gorgeous and sustainable garden from Derek Carwood of Greenwood Horticulture.

    Even in Minnesota, the Land of 10,000 Lakes – our groundwater and our lakes, streams and wetlands are limited resources.

    Minnesota’s Groundwater:
    Is our use sustainable?
    A Freshwater Society special report / April 2013 https://freshwater.org/wp-content/uploads/2019/11/Updated-MNs-Groundwater-Paper-lo-res.pdf

  • Licorice’s Lickables

    I’m fostering a beautiful black cat and her four babies via the Bitty Kitty Brigade. Unlike me, this mama is skinny! My chief pet scientists helped me make a special treat for her.

    Urologist, Dr. Squirt doesn’t want to share.

    Licorice Lickables

    • 2 cans Canon Mama/Kitty food
    • 1 can water-packed tuna
    • 1 can chicken or turkey
    • 1 T water

    Blend and serve!

    Freeze leftovers in a ice cube tray.

    Psychiatrist, Dr. Whisky, assesses the sample.
    Step by step photos.
    Mama Licorice trying to clean up her yummy mustache.