Minnesota Prairie Roots

Writing and photography by Audrey Kletscher Helbling

Retraining my brain post-COVID November 29, 2023

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This art by Faribault middle schooler Mohamed depicts how my brain felt post-COVID. (Minnesota Prairie Roots copyrighted file photo)

IT’S BEEN A JOURNEY. That best summarizes the path I’ve been on since January to reclaim my health. It’s been difficult, stressful, taxing, challenging, emotional and often overwhelming. But I was determined to do what I could to reach a better place health-wise in the aftermath of unconfirmed, but suspected, COVID.

This was a virus which messed with my brain, my neurological system, leaving me with a long list of debilitating symptoms. Prior to COVID, I was healthy, medication-free, living a normal life. And then…everything changed. (Click here to read my initial post about how COVID affected me.)

My route to managing long haul COVID began with my medical team, including my compassionate primary care doctor who listened, who admitted when he couldn’t help me, who referred me to specialists, who handed me tissues when I cried in the exam room. He never gave up on me. Nor did my vestibular rehab therapist.

Some of the exercises I did in vestibular rehab therapy. (Minnesota Prairie Roots copyrighted photo November 2023)

VESTIBULAR REHAB THERAPY, MY ROAD TO RECOVERY

I credit my physical therapist, Ryan at Courage Kenny Rehabilitation Institute in Faribault, for leading the way in my recovery. He has extra training in vestibular issues. From the get-go, Ryan encouraged me, worked with me, supported me, showed deep care and compassion. Those went a long way in empowering me to work hard. And that I did.

During those initial once-a-week visits with Ryan, I barely managed conversation with him. I would mostly close my eyes and listen as he told me how we would work first on overcoming my balance problems. And then I would do as he instructed. Simple things like turning my head while seated. Then trunk rotations. Then turning my head while walking. Soon rotating while walking. Moving my hands back and forth aside my head while listening to white noise. I was building my tolerance for sensory input one exercise at a time. Retraining my brain. It took many months to progress through these seemingly basic exercises. But they were helping.

Each session Ryan gave me homework, which I faithfully did. I understood that no amount of therapy would work if I wasn’t willing to work hard at home. Soon he was encouraging me to get out, to try socializing. He even convinced me I could manage a mid-summer stay at a lake cabin, giving me coping tools to handle the long drive (close my eyes and wear ear plugs and sunglasses), to handle sensory overload (take breaks) and more. I managed that vacation get-away, but not easily. I remember the evening I snuggled next to my eldest daughter, put my head on her shoulder and sobbed, “I can’t do this any more.”

A page from Eric Carle’s book, “From Head to Toe” inspires me. (Minnesota Prairie Roots copyrighted file photo)

ENCOURAGEMENT IN THE MIDST OF DESPAIR

Many times I felt despair, as if I wasn’t making progress. Ryan assured me I was improving, even if I couldn’t always see it. I often felt, too, like no one understood what I was going through (although I’m sure that’s not true). But what I had was unseen, literally in my head. And when people can’t see, or make no effort to understand neurological issues, support lacks. That said, I had a core support group of friends and several sisters-in-law who gave me ongoing encouragement.

And so the months passed. Randy and our eldest daughter, especially, offered unconditional love and support that carried me through some of my darkest days. I wanted desperately to feel better, to have my old life back, pre-virus. By mid-September when I’d advanced to virtual reality roller coaster rides, my physical therapist deemed me ready to graduate. I was ready, yet I wasn’t. I would miss Ryan’s weekly encouragement.

Here I am today, two months out from therapy’s end. I am in a much better place than when I began vestibular rehab therapy in mid-April. I am out and about. Grocery shopping, attending church, speed walking a half hour daily, going to concerts, socializing… I still struggle if I overdo it, if I have too much sensory input. I rely on ear plugs to handle loud music. I close my eyes. Sometimes I have to leave a place or event. I am not the same as I was pre-COVID.

Up next, eye muscle surgery. (Minnesota Prairie Roots copyrighted photo November 2023)

UP NEXT, EYE SURGERY

In January, I will undergo bilateral strabismus surgery at the University of Minnesota to realign my eyes. It is a re-do of a 1960 surgery. As my neuro ophthalmologist explained, the eye muscles that were surgically tightened decades ago have loosened through the decades. Up until my neurological system was affected by COVID, my brain compensated. No more. I am seeing double, and not just when I read. Trying to focus my vision to see only one exhausts me.

But in the all of everything I’ve endured since January, I’ve made significant progress. I’m doing much better. Mostly managing. And that is reason to feel thankful.

© Copyright 2023 Audrey Kletscher Helbling

 

No more VR roller coasters for this graduate September 26, 2023

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(Minnesota Prairie Roots copyrighted file photo May 2016)

CUE “POMP AND CIRCUMSTANCE.” Wednesday, September 20, marked graduation day for me. After six months of vestibular rehab therapy at Courage Kenny Rehabilitation Institute in Faribault, I graduated.

It was a milestone day for me in managing the neurological issues I’ve faced following a *viral infection in early January. Twenty-one therapy sessions later and I’m much-improved. Not cured. Not fixed. Not all better. I’ll never be the same as I was pre-virus. But, through targeted therapy exercises, a lot of hard work and simply easing back into life, I’ve built my tolerance for everyday experiences. I can better handle sensory input. I can walk without feeling unbalanced. I can manage beyond sitting in a room with the curtains drawn to shut out light, windows closed to keep out noise.

I still have challenging days. I still struggle. But I am in a much better place than even a month ago.

And so I graduated. Not because I wanted to leave Courage Kenny and my incredibly knowledgeable, supportive and caring therapist. But Ryan and I mutually agreed that I was ready. And so he asked, on that final day together, whether he should cue “Pomp and Circumstance” on his laptop, the same laptop he used to introduce me to virtual reality roller coasters as part of my therapy. I told him we could pass on the music. And I am happy to pass on roller coaster rides.

But I did bring celebratory homemade carrot cake cupcakes with homemade cream cheese frosting. Ryan laughed when I walked through the door carrying that box of cupcakes to share with the Courage Kenny team. When I’d asked the week prior if we would have graduation cake, he said only if I brought it. So I did, along with a thank you card and homemade chocolate chip cookies for this professional who worked tirelessly to improve my health. I always felt like we were a team.

And now, like any new graduate, I hold the knowledge and tools that will help me handle daily living. I participated in class (kinda hard not to when you’re the only student). I did the assigned homework each week. I followed through by getting back into the real world, sometimes failing in my efforts, sometimes succeeding. I’ve done my best, through tears and discouragement and struggles, to rise above the challenges. And now I’ve graduated. Onward.

© Copyright 2023 Audrey Kletscher Helbling

* Even though I self-tested negative twice for COVID in January, my primary care doctor believes I had COVID, the cause of my multiple, ongoing neurological issues.

 

Invisible, but, oh, so real September 20, 2023

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Early on in my diagnoses, my brain felt like this, scrambled. Art by Bill Nagel, previously exhibited at the Paradise Center for the Arts, Faribault. (Minnesota Prairie Roots copyrighted photo March 2023)

FOR ME, THE FEELING of imbalance started shortly after an early January virus, likely *COVID-19. At the time I didn’t make the connection between the two. But eventually medical professionals did. That led to multiple diagnoses of vestibular neuritis, Meniere’s Disease and peripheral sensory neuropathy. Yes, it’s been a lot to handle. But I’m in a much better place health-wise than nine months ago thanks to professional intervention and a whole lot of hard work.

The thing about having a vestibular disorder is that it’s unseen. You can’t see inside my brain to view the damage. And, for the most part, you can’t see the effects of a malfunctioning vestibular system, unless you’re my husband or eldest daughter who can. Randy and Amber can look at my face, see my eyes squinting, my look of fatigue, tell-tale signs I’m not doing well. And if I’m closing my eyes or holding my hands on the sides of my face, I’m blocking my peripheral vision, thus reducing visual input.

All of that aside, I’ve at least reclaimed my balance. Most days. Brief bouts of vertigo set me back mid-summer. Via vestibular rehab therapy to retrain my brain, I’ve learned to manage and live with my many ongoing symptoms and mostly get on with my life. Maybe not as I did previously, but with a renewed appreciation for something as simple as walking with confidence, as watching TV, as shopping for groceries.

A promo postcard from VeDa. The painting, “Uncharted Waters,” is by vestibular patient Nicolle Cure.

FOCUS ON BALANCE

Today, though, I want to focus on balance, for two reasons. Imbalance was the first issue I overcame. And secondly, September 17-23 marks Balance Awareness Week, started in 1997 by the Vestibular Disorders Association. That national nonprofit is “a lifeline of support to anyone affected by vestibular (inner-ear and brain balance) disorders.” VeDA has proven an invaluable resource for me in learning about my vestibular-based diagnoses.

Knowledge is power. Just ask my physical therapist at Courage Kenny. Ryan answered many questions during my vestibular rehab therapy sessions, especially early on when I was just learning about my health issues. He always replied thoughtfully, helping me to understand what was happening in my brain and how we would work together through targeted exercises to manage my symptoms.

I’ve come a long way from the days of standing in place turning my head back and forth to the beat of a metronome. Today I’m power walking 15 minutes in the morning, 15 minutes in the evening with Randy. Even I’m amazed that I can do this. Not all that long ago, I couldn’t walk a block, often needing to hold onto Randy.

Fiona the Flamingo is VeDA’s Balance Awareness Week logo/mascot.

EVEN THOUGH MY DISORDER IS INVISIBLE, I STILL NEED TO BE SEEN, ENCOURAGED…

There is hope for anyone dealing with a vestibular disorder. Many seniors (and, yes, I’m a “senior”) struggle with balance. So do those who’ve suffered traumatic brain injuries like concussions. That includes my sister-in-law Rosie, my go-to support. Because she understands. And encourages. She realizes the importance of physical therapy in recovery.

In sharing a bit of my story with you, I am aiming to increase awareness. Make Vestibular Visible themes Balance Awareness Week. A promo from VeDA reads: Balance Awareness Week is our time to shout from the rooftops: “I have a vestibular disorder and this is my story.”

This is my story. One of challenges, of professional intervention, of hard work, of acceptance, of perseverance, of relying on others, of patience, of strength, of gratitude, of tears, of resilience, of focusing on what I can do (and not what I can’t). It is also a story of recognizing that no matter what we face in life—whether visible or invisible—we all need to be seen, to be uplifted, to feel cared for and loved.

#

© Copyright 2023 Audrey Kletscher Helbling

*I self-tested negative twice for COVID, but those tests (if done incorrectly and for other reasons) can be wrong, my primary doctor told me. He guesses I had COVID in January, and I agree based on my symptoms.

 

It’s been a roller coaster ride September 14, 2023

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“The Legend,” one of a few remaining wooden roller coasters, located at Arnolds Park Amusement Park in the lakes region of northwestern Iowa. Built in 1930, it is the 13th oldest wooden roller coaster in the world. (Photo courtesy of Arnolds Park Amusement Park Marketing)

SOME 2 ½ MONTHS AGO, I boarded a roller coaster for the first time since I was a teenager screaming my lungs out while riding “The Legend,” a wooden roller coaster at Arnolds Park Amusement Park in Arnolds Park, Iowa. It’s not that I decided this would be a fun activity to try again in my late sixties. Rather, the choice was made for me, as part of my vestibular rehab therapy.

I warned my physical therapist that I don’t like amusement rides. But my comment didn’t deter Ryan. He determined that riding a virtual reality roller coaster on a June morning might be exactly what my brain needed to retrain itself. Since January, I’ve struggled with neurological-based issues resulting from a viral infection, suspected to be COVID, even though I twice self-tested negative for the virus. In early April, I started physical therapy and have been working hard ever since to manage my many debilitating symptoms.

Fast forward to today. I am in a much better place, even while on a VR roller coaster, a tool I’m using to build my visual, auditory and spatial tolerance. Early on I had doubts about my therapist’s plan. Initially, I couldn’t tolerate the VR roller coaster for long (less than a minute) before symptoms flared. After minimal exposure, my head hurt, my eyes hurt and I felt utterly exhausted. When I experienced a health setback mid-summer with vertigo returning, Ryan abandoned the amusement ride therapy for therapies less taxing on my brain.

ROCKS, RABBITS & A ROLLER COASTER

Slowly, surely, I started feeling better and Ryan decided it was time to pull out the VR headset again for another go on the roller coaster. I did not enthusiastically hop on board, only reluctantly agreeing to give it a try. I lasted 25 seconds on a roller coaster ride where boulders tumbled off rocky mountains toward me. Rabbits loping under the track proved the only redeeming feature. I hold a fondness for rabbits, my high school mascot being a White Rabbit.

That was two weeks ago. The following week I did better, albeit on a less visually-stimulating ride, this one under the sea in a darker environment. Still, I could manage only bursts of riding before needing to pause.

NOT ONE, NOT TWO, BUT THREE ROLLER COASTERS

Five days later I was back at therapy, knowing full well that I would again be riding a roller coaster. Make that plural. Three roller coasters. I started therapy Wednesday morning with the least stimulating under-the-sea ride. And just to make that more challenging, Ryan asked me to stand, rather than sit. He allowed me to place my hands on the back of a chair to ground myself. I successfully finished the ride, then took a break before re-boarding, this time without touching the chair. Success again. Time to up the challenge.

Ryan pulled out the rabbit-loping, boulders-falling themed ride. This time I completed the ride, which was visually much more exciting with dynamite and fire and a whole lot more coming at me. Once again, I tolerated the roller coaster twice while standing and without needing to stop.

I felt my confidence grow as each roller coaster ride became more sensory challenging. I could do this. But when the next ride began with a garish parrot getting in my face, I questioned whether I could manage a tropical-themed roller coaster with worn vivid red and yellow rails. (Was it even safe to ride?) It was a lot—the bold hues, the squawking flapping seagulls, the palm trees, the steep climbs, the height, the sharp turns. But I made it. Twice on that roller coaster curving toward the ocean.

DOING GREAT, BUT I HAVE MY LIMITS

My brain was adjusting, learning, retraining itself to take in more visual, auditory and spatial input. Ryan praised my success, both of us somewhat surprised by how well I’d tolerated those roller coasters Wednesday morning.

But before I left therapy, I wanted Ryan to know one thing. If he planned a field trip to nearby Valley Fair Amusement Park next Wednesday for a ride on a real roller coaster, I wouldn’t be showing up for therapy.

© Copyright 2023 Audrey Kletscher Helbling

 

All about circles & numbers at physical therapy July 6, 2023

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Pretend this is a screen with moving circles. Tap all the red circles, then the blue, then the yellow. (Minnesota Prairie Roots copyrighted photo used for illustration only, June 2023)

“THIS IS FUN!” I effused as I touched a series of red circles, then white, then blue on a big screen. Since I quickly mastered that Fourth of July-themed task after several tries, my vestibular rehab therapist upped the challenge.

Next Ryan had me tapping first a square with a pulsing letter inside and then white circles that popped up randomly on the screen. Whenever the letter changed, I had to tap the blinking letter and then those elusive white floating circles.

I felt like I was getting not only a visual workout (the goal), but also my morning exercise as I stretched to reach the circles. At the ends of rounds, Ryan would adjust the time, increasing the difficulty. When he saw me struggling, he decreased the screen size. Magical, I thought in my exercising brain. My therapist’s aim was neuromuscular re-education via use of the Bioness Integrated Therapy Systems, software designed to present me with dual tasking and visuospatial processing challenges.

At this point the word “fun,” rather than “brain work-out,” still held my thoughts. But just as I was feeling good about my successes, my therapist determined I needed a bigger challenge. Circled numbers popped onto the screen. I should have stopped Ryan right then and there and told him that I am not a numbers person. Words are my thing. He knows I’m a writer. But I was willing to try as long as I didn’t have to solve math equations.

Turns out I only needed to know how to count. No problem. Easy peasy. Or so I thought. I was instructed to tap the numbers 1-10 in sequence inside a large rotating circle. That requires some visual dancing. The numbers disappeared as I tapped them. Then, of course, Ryan added more numbers. Fifteen. Then 20. He also adjusted the speed. And then he told me the numbers would not disappear. Oh, boy.

By then, the word “fun” had vanished, poof, just like that from my thoughts. I felt a tad dizzy and my head hurt. Ryan noticed. Play ended. I sat, closed my eyes, didn’t always look Ryan in the eye when he talked to me. Those are all cues that my brain is experiencing sensory overload.

We chatted about July Fourth plans and vacations and how I can manage my symptoms when they flare. I’ve come to understand what helps me deal with agitation and sensory overload—deep breathing, coloring, therapy putty, rocking, closing my eyes, ear plugs, retreating to a quiet place. But it’s always good to review those coping skills.

It was nearing the end of my 45-minute weekly therapy session. I still felt like my head had been slapped. At that point, Ryan gave me a break. He had planned to use the virtual reality roller coaster again to strengthen my visual and auditory tolerance. But he recognized my brain had had enough sensory exposure. Or perhaps to much exposure to numbers.

© Copyright 2023 Audrey Kletscher Helbling

 

Quite the ride June 28, 2023

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This battery-powered T-Rex was my son’s toy. It roared, turned its head, moved its arms and flashed its red eyes. My grandkids were terrified of it at one time. (Minnesota Prairie Roots copyrighted photo June 2023)

IF YOU HAD JUST DISEMBARKED a roller coaster only to see a T-Rex chomping up the tracks and roaring towards you, would you trust that you would survive?

So what does this have to do with anything relevant to today and, well, to me? Lots.

Last week my vestibular rehab therapist changed things up a bit. He led me from our usual private meeting room down the hall to a more spacious room with a large screen TV, a table, chairs, toys, a dollhouse and some type of exercise equipment I couldn’t identify.

“Yeah, I get to play,” I exclaimed to Ryan.

WE’RE GOING TO DO WHAT?

He had other things in mind. “You’re going to ride a roller coaster,” he said. I looked at him in disbelief and then with fear as he pulled out a virtual reality headset.

“I don’t like roller coasters,” I stated. That is true. The last one I rode was nearly 50 years ago. The Woody at Arnold’s Park in Spencer, Iowa. They called it The Woody back then for a reason. Built in 1930, this is the 13th oldest wooden roller coaster in the world. And this amusement ride was, for me, absolutely terrifying as the cars clacked up and down and around the tracks.

I also have minimal exposure to VR, having tried my son’s headset once and experiencing great difficultly in navigating anything. Simply being in a virtual world proved uncomfortable and disorienting.

So when Ryan mentioned roller coaster and VR in the same sentence, I felt my angst rise. But I recognized that he was serious and that this was just one more effort to retrain my brain by exposing me to motion and to noise in an attempt to manage symptoms resulting from vestibular neuritis, Meniere’s Disease and peripheral sensory neuropathy.

REMIND ME, WHICH BUTTONS DO I PUSH?

Alright then. Ryan set up the computer program, tightened the headset on my head, then handed me the controls, instructing me on which buttons to push. He told me to point the laser at the triangle to start the ride. I couldn’t even manage that as my hands shook. I failed at multiple attempts to use the hand controls, so eventually my patient PT took over. Young people can manage tech stuff far better than aging Baby Boomers like me.

Soon I was on the dreaded roller coaster, riding up and down and all around while noise roared. It was a lot of visual and auditory stimuli as intended. Curves and the roar of a waterfall proved the most challenging. Almost immediately I asked to sit. But when I grew more comfortable, Ryan had me standing with my hand touching the back of a chair to help me feel grounded. I took multiple breaks.

OH, NO, THERE’S MORE!

When I thought a roller coaster ride was surprise enough, yet more awaited me. I soon noticed dinosaurs lurking in the background. Then a Tyrannosaurus separated from the herd and began chomping the track, moving at a ferocious pace directly towards me.

“My granddaughter would love this,” I said in the midst of all that chaos, then corrected myself. “Well, maybe not.” Isabelle, 7, loves dinosaurs but even this teeth-baring meat eater might scare her.

In the end, I survived. Both the T-Rex and the roller coaster. Ryan was pleased with my ability to mostly handle the stimuli. Now I wonder what he has planned for physical therapy tomorrow?

© Copyright 2023 Audrey Kletscher Helbling

 

The dance goes on June 23, 2023

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I’ve owned this classical music album since the 1970s. (Minnesota Prairie Roots copyrighted photo June 2023)

IT’S BEFORE 8 AM, and I am twirling across my living room to early 18th century classical music playing on a stereo.

You might call this dancing. But, for me, this is an exercise in balance. For two months now I’ve been in physical therapy to help retrain my brain. That followed a diagnosis of vestibular neuronitis in my right ear and Meniere’s Disease in early April. And now I have the added diagnosis of peripheral sensory neuropathy. And more, possibly post-COVID symptoms, even though I’ve never tested positive for the virus. I had a virus in January and all of my symptoms started in the months thereafter.

I have been working really hard to do whatever I can to help my body adapt to the deficits in my brain that stretch well beyond a loss of balance. Thankfully, I can still write. There are many days when I feel frustrated, impatient, overwhelmed, anxious, exhausted, wondering if I will ever feel better. Able to live the life I once lived.

And so I continue this dance. Four steps across the living room floor, turn a 360, four more steps, turn, four more steps and turn again. By the third turn, I am feeling dizzy. Then it’s back twirling the other direction, pausing at the end of each set to regain my balance. Back and forth several times, the energetic music of Johann Ernst von Sachsen Weimar, Francesco Antonio Rosetti and Johann Wilhelm Hertel propels me across the floor.

IMPROVEMENT & DETERMINATION

There was a time early on in my diagnoses when I couldn’t have listened to this music. All I wanted was quiet, minimal auditory input. I worked in physical therapy to build my tolerance to sound. I still struggle with sound and other sensory issues. But I know I’m better than early on. The fact that I can even sit at a computer and type is proof. Early on that was difficult, if not impossible.

I just now paused to turn off that classical music. It was too much after 45 minutes of listening while exercising and now writing. The right side of my head feels as if it’s been slapped. I recognize that as a symptom that I need, in this moment, to calm.

Dealing with these multiple diagnoses feels as much a mental challenge as a physical one. I suppose anyone experiencing a serious health issue would say the same. I try to remain positive and hopeful, but I recognize that, in all reality, feeling upbeat takes effort.

Just like my physical therapy takes effort and commitment. I’m determined to follow through with the exercises my therapist, Ryan, gives me during our weekly sessions. I look forward to therapy because I feel so encouraged and empowered, like there’s something I can do to help myself get better and that I have the strong support of a caring and compassionate professional.

FOCUS, EXERCISE, TRY

And so I continue twirling across my living room. In another exercise, I focus my eyes on an X slashed on a Post It note I’ve placed at eye level on the wall. I keep my eyes on that X as I do figure eights around two containers of therapy putty I kept after breaking my left wrist several years ago. Because I also have diplopia, I see two Xes due to my eyes not tracking together.

Another exercise takes me outdoors to Central Park or the campus of the Minnesota State Academy for the Deaf. There I walk along the sidewalk and then on the uneven surface of grass, turning my head from side to side and then up and down. Randy walks near me as my spotter. I invariably veer hard to the left. It’s his job to keep me safe and I am grateful for his loving care and attention.

One of my biggest challenges remains the ability to engage in conversation. Listening and talking for any length of time tax my brain. When my dear aunt phoned the other day from Missouri, I finally had to end the call because my head was hurting so bad. I’m hoping my therapist can give me some exercises that will improve my ability to engage in conversation without experiencing symptoms.

And so I keep trying. I keep dancing, twirling to the early 18th century music of classical composers.

TELL ME: If you’re living with a chronic illness/disease or have dealt with a major health issues, what helped you cope? I’ve found coloring, playing with therapy putty, doing crosswords, lifting hand weights and rocking in the recliner with my eyes closed to be soothing, helpful distractions.

© Copyright 2023 Audrey Kletscher Helbling

 

A health update: I like savory food, but not this tasty June 17, 2023

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Nothing spicy for me last week. Nope. (Minnesota Prairie Roots copyrighted file photo)

AT 7:11 PM TUESDAY I TEXTED this to my oldest daughter: Do not forget you have super sensitive taste buds & lick an envelope flap. Really bad idea.

I was the one who forgot, not her. I was the one with the hypersensitive taste buds. I was the one who grabbed my bottled water and ran to the bathroom to repeatedly rinse the strong taste from my mouth. I was the one with overly-active taste buds, just another of the many sensory overload symptoms I’ve experienced following a virus in early January.

Of all the past and present symptoms—from imbalance; short-lived vertigo (only when prone): ear ringing, popping and pain and feeling of moisture in my ear; sensitivity to light, sound, smell and touch; feelings of ice water coursing through my body; feeling like I’ve been slapped on the face; headaches; and more I’m likely forgetting right now—this taste issue proved particularly challenging. It landed me in the ER one Thursday afternoon recently with swelling of my tongue and lips and a feeling of my throat closing. That’s scary, darned scary.

Oatmeal with brown sugar, not bananas or any other fruit, was one of the few foods I could eat last week. (Minnesota Prairie Roots copyrighted file photo)

WEARY OF OATMEAL

Thereafter, for the next week, I could eat only bland foods and only small amounts. Oatmeal. Graham crackers. A blueberry proved too intense. So did a grape. It tasted awful. In five days, I lost nine pounds. Not a weigh loss program I recommend. Anything I ate caused an allergic reaction, but thankfully not enough for a return ER visit.

I couldn’t brush my teeth because my taste buds couldn’t tolerate even a non-flavored toothpaste. Toothpaste set my mouth afire. Eventually, after contacting my dentist’s office, I tried baking soda. That tasted like someone dumped a load of salt in my mouth.

I feel like I’m reaching reaching for help as seen in this public art sculpture, “Waist Deep,” photographed in Northfield in 2019. (Minnesota Prairie Roots copyrighted file photo)

JUST WANTING TO BE WELL

To say it was a hellish week would be an understatement. I was scared. Frustrated. Anxious. Wanting answers and hope. More than once, Randy heard me state, “I just want to feel better.” He was patient, encouraging, supportive, as he has been through the past six months of multiple building symptoms.

Back at the end of May already, I noticed toothpaste seemed especially minty. I told two of the doctors I was seeing of this occasional taste oddity. That went nowhere and perhaps I did not push the point enough. And then came that Thursday afternoon ER trip and my taste buds run amok.

This art by Faribault eighth grader Mohamed represents how I feel regarding my overstimulated senses. This art was shown at a student art show earlier this year. (Minnesota Prairie Roots copyrighted file photo 2023)

TIME TO CALM THOSE NERVES IN MY BRAIN

It was at my ER follow-up visit with my primary care doctor that I found hope in a physician with deep compassion and care. I could see both in his eyes, hear both in his words. He pledged to try what he could to help me. He prescribed a medication to help calm the overactive nerves in my brain which control the senses. After one dose, I was already feeling relief. My taste buds are back to normal. I can eat without feeling like the food I just put in my mouth is starting a fire. No more throat, tongue or lip swelling. If it continues to work, and I have no reason to think otherwise, then I am grateful.

A THEORY, GUESS OR WHATEVER YOU WANT TO CALL IT

This is all a bit of a guessing game, a try and see what works process. Even my family doctor’s diagnosis of peripheral sensory neuropathy seems a best guess. The sensory part fits for sure. His theory is that the virus I had in January was COVID, even though I self-tested negative twice for the virus. Those home tests, he said, can be inaccurate if the tester doesn’t quite do things right. I am beginning to believe more and more that he’s right, that I am experiencing post-COVID symptoms.

A page from Eric Carle’s book, From Head to Toe. I ought to frame this page and hang it in my office. (Minnesota Prairie Roots copyrighted file photo)

PHYSICAL THERAPY CONTINUES

I continue with vestibular rehab therapy to retrain my brain to compensate for the irreversibly-damaged 8th vestibular nerve in my right ear. That nerve controls balance. My initial diagnoses of vestibular neuritis and Meniere’s Disease (due to hearing loss caused by a virus in 2011) remain.

All of this is a lot. These are diseases that I must learn to live with and manage. I have good days and bad. But I am determined, working hard at therapy, getting out and about to build up my sensory tolerance. A recent attempt to dine out at a restaurant proved overwhelming. But I managed a dental cleaning with a sensory accommodating hygienist. A trip to a big box store nearly proved too much given the music, the people, all the visual stuff. I managed an outdoor concert with an ear plug in my good ear. I struggled to get through a meeting with a financial planner when I had to listen closely and engage in conversation. I am beginning to understand my limits, yet try to push myself just over, to challenge myself without experiencing full-blown symptoms.

These roses are for you, dear blog readers, for your kindness, compassion and support. (Minnesota Prairie Roots copyrighted file photo)

WITH GRATITUDE

Onward I go. I want to pause and thank you, my dear readers, for your ongoing encouragement and support. I’ve needed both, welcomed both, felt so very loved. I am grateful. I told Randy, “I have the best blog readers!” You are. The best.

© Copyright 2023 Audrey Kletscher Helbling

 

Vestibular neuronitis: Challenges, info & a trip to China June 2, 2023

Filed under: Uncategorized — Audrey Kletscher Helbling @ 2:22 PM
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A turtle, rather than a tortoise, used for illustration only. (Minnesota Prairie Roots copyrighted file photo June 2020)

I TOOK A FIELD TRIP TODAY. Not the fun sort like my granddaughter, Isabelle, took Thursday to see a performance of “The Adventures of Tortoise and Hare” at the Ordway in St. Paul. Rather mine was into the outdoors, outside a physical therapy office in Faribault.

Friday marked my seventh vestibular rehab therapy session with Ryan at Courage Kenny. I started weekly therapy in mid April after being diagnosed with vestibular neuronitis and Meniere’s Disease. These are complex diagnoses which affect the vestibular system in my right ear. (Click here to read an earlier blog post that details my many symptoms.) Basically, therapy is retraining my brain to handle the deficiencies I’m now experiencing due to damage to my eighth vestibular nerve. And to think this all started with a viral infection in January.

Back to today. Typically I meet with my physical therapist in a small room where we review my symptoms and progress and I learn, and practice, new exercises. Last week we ventured into a long hallway so I could walk back and forth, moving my head from side to side and then up and down. I didn’t do so well, veering to the left and into the wall. But I practiced at home all week, as I do all exercise homework Ryan assigns, and I felt I was doing better. I am determined to do everything I can to reclaim my life, or at least some version of what life was before these health issues.

A scene at Falls Creek County Park, rural Faribault, used for illustration only. (Minnesota Prairie Roots copyrighted file photo May 2022)

OK, WE’RE TAKING THIS OUTSIDE

Then Ryan announced we were going outside to try this walking and head turning activity on the sidewalk. I started out not so well, again steering left. Being outdoors added sensory input I wasn’t used to experiencing inside a small room. This exposed me to a real world environment. One with chirping birds and traffic and people crossing the parking lot and trees and clouds. Just a whole lot for my brain to try and manage. Once I’d semi-managed the sidewalk, we moved onto the lawn. Another new landscape to take in while I moved my head and attempted to walk a straight line.

That was my field trip. A change-up from a controlled environment. My ability to handle my symptoms has assuredly improved with therapy as Ryan nudges me to push myself more. And I am. I’m out and about some now, trying to do things I once didn’t think twice about doing. Trips to the grocery store, big box stores, a walk in the park, doing photography, simply being among people. It’s not always easy, especially when symptoms flare. Sometimes I fail. I recognize my limits. That includes time on the computer. Too much online time and my head begins to hurt, my vision blurs, I see double. Because of that, I’ve been publishing fewer blog posts.

This is how I feel sometimes. Artwork close-up by Bill Nagel. (Minnesota Prairie Roots copyrighted file photo)

YES, IT REALLY IS IN MY HEAD

Yesterday my dear friend Beth Ann, whom I met when she lived in Iowa but who now lives in North Carolina, blogged about vestibular neuritis/neuronitis. I had no idea she was going to write this and then designate the Vestibular Disorders Association as the beneficiary of her monthly “Comments for a Cause” project. (Please click here to read Beth Ann’s well-written, informative blog post.)

Each month Beth Ann chooses a different group or nonprofit to feature and support with a financial gift. I was humbled by her desire to increase awareness of vestibular issues. And, bonus, she enlightened me about the Vestibular Disorders Association which, at quick glance, will be a valuable resource as I navigate my diagnoses. I feel validated just scrolling through the website, like I want to shout, “This is real! This isn’t just in my head. It really, truly is in my head!”

Merchandise vended by an international singing group that performed in Faribault and used for illustration only. (Minnesota Prairie Roots copyrighted photo July 2014)

GOING TO CHINA WITHOUT GOING TO CHINA

Earlier this week I endured an MRI per my neurologist’s orders to assure nothing else is going on inside my brain besides the already-known. I get results on Wednesday. He’s confident nothing additional will be found and I hope he’s right. While in that machine for an hour trying to manage the blasts of overpowering noise (I’m hypersensitive to sensory input), I remembered Ryan’s advice to “dig deep” to get through the procedure. I think I dug a hole all the way to China.

 Next week I will need to dig deep again to get through another hearing test, followed by an appointment with the ENT given persistent, intermittent ear pain and more. I’m documenting my symptoms (once a reporter, always a reporter). And I’m hoping for answers as I press onward, preferring not to travel internationally again.

© Copyright 2023 Audrey Kletscher Helbling

 

Roadblock inside my brain May 8, 2023

Filed under: Uncategorized — Audrey Kletscher Helbling @ 5:00 AM
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Just like along US Highway 14 in southern Minnesota, I’m dealing with a closed road in my brain. (Minnesota Prairie Roots copyrighted file photo)

IMAGINE YOU’RE ON THE ROAD, when, unexpectedly, you encounter a Road Closed Ahead sign. Now you must take an alternate route to reach your destination. You follow the detour signs, which lead you along twists and turns of back country roads. You are in a hurry and frustrated. But eventually you are back on your mapped route, arriving much later than planned.

That scenario is familiar. We’ve all experienced such travel detours. But not many have experienced vestibular neuronitis, a health issue I am currently facing. The road closed/detour analogy is the best way I can explain what’s happening inside my brain.

My problematic right ear… (Photo credit: Randy Helbling)

MULTI-LAYERED & COMPLEX

Mine is a complex diagnosis, a neurological condition resulting from an inflammation of the nerve(s) in the inner ear, in my case the right ear. The apparent cause, a viral infection. In 2011, a virus caused me to lose nearly all of the hearing in my right ear during an episode of sudden sensory hearing loss. This most recent virus affected the balance in my right ear. My initial symptom of feeling off-balance followed a really bad cold in early January. (Not COVID; I self-tested negative for that, twice.) I didn’t think too much of the off-kilter feeling, hoping it would pass. It didn’t.

My symptoms progressed: fullness, ringing, clicking and minor pain in my right ear; hyper-sensitivity to sound; double vision; awakening with headaches; feeling like someone slapped me on the right side of the head; unexplained anxiety; rosacea; fatigue; vertigo (only while sitting up from a supine position or rolling onto my right side in bed) and more I’m probably forgetting. I felt like my brain was working really hard to manage auditory and visual input, processing conversations, and balance. I still feel that way.

Kind of how my brain feels right now. Artwork by Bill Nagel, exhibited at the Paradise Center for the Arts earlier this year. (Minnesota Prairie Roots copyrighted file photo March 2023)

BRAIN FATIGUED

Back to that road closed analogy. The nerves/pathways in our brains are all interconnected, one leading to the other. Kind of like the system of roadways we follow to get from Point A to Point B. Now there’s a blocked road inside my head and my brain is struggling. It’s taxing to determine how to make this all work. Vision. Hearing. Maintaining my balance. I’m feeling brain fatigue.

One day I may feel fairly normal, the next, not so much. Or even through the course of the day, how I feel is affected by input into my brain. If I’m out and about, which I mostly am not, I quickly feel overwhelmed. Even by something as simple as a one-on-one conversation.

A tablet of Prednisone, a med which I took for two weeks. (Minnesota Prairie Roots copyrighted file photo)

SYMPTOMS LESSENING

Yet, today I see a lessening of my symptoms. The anti-inflammatory steroid Prednisone, as much as I disliked the insomnia, heart palpitations and anxiety side effects, reduced the nerve inflammation. My symptoms are less severe, but still linger under or at the surface and sometimes flare.

I am in vestibular rehab therapy, working with a skilled, knowledgeable and compassionate physical therapist who is determined to help me retrain my brain, to get me back on the right route. Ryan tells me I’m improving, even if I don’t always see that. I appreciate his encouragement and specialized training in the exact therapy I need. I listen. I ask questions. I do my exercise homework. Already I’ve seen improvements in my balance.

My vision has improved, too, although I still must work hard to focus and not see double. I can now tolerate my computer screen for more than 10 minutes. Headaches are mostly gone as is the feeling of being slapped on the side of my head. And I no longer need to close my eyes during a conversation because I can’t handle simultaneous visual and auditory input. That said, I will occasionally close my eyes when I feel overwhelmed and need to concentrate solely on hearing.

No big road trips for me as I navigate through vestibular neuronitis. (Minnesota Prairie Roots copyrighted file photo)

LIMITATIONS, FRUSTRATION, DISAPPOINTMENT

I have my moments when I feel depressed and frustrated and wish I was “all better.” I don’t know if I will ever be “all better” or whether this is something I will have to learn to live with and manage. There are moments when I feel overwhelmed. This whole vestibular neuronitis is difficult to explain and you can’t see it, so people don’t necessarily get it.

I’m sad because a long-planned trip to Indiana this coming week to attend my son’s graduation from Purdue University with his master’s in computer science will not happen for me. I am disappointed that I can’t be there in person to celebrate, to hug him, to congratulate him on his accomplishment. But I recognize my limits. I can’t handle a long road trip and attending commencement with the masses. It would be too much for my brain. I’m not even attending church yet because I can’t tolerate the organ. I’m not even grocery shopping because of the sensory overload. Mostly, my interaction with others is limited because my brain can’t handle much.

But onward I go, navigating away from the closed road in my brain to alternative routes that will allow me to reclaim my life. Soon. I hope.

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NOTE: By writing this post, I hope to encourage others who are on a similar journey or who are supporting loved ones. I also aim to provide info on this unfamiliar-to most condition.

© Copyright 2023 Audrey Kletscher Helbling