Minnesota Prairie Roots

Writing and photography by Audrey Kletscher Helbling

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

Filed under: Uncategorized — Audrey Kletscher Helbling @ 5:00 AM
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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.

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© 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.

 

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