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.
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.
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.
Minnesota Prairie Roots 
You are such an amazing example of someone who, when given a life- changing challenge, chooses to pro- actively understand it and work hard to overcome it, even on the hardest days. You are an inspiration and your words and experience will absolutely help others.
Thank you for your affirming words, Beth. Today I graduated from vestibular rehab therapy…after six months. I’ve come a long way.
Wow
🙂
I’m so glad that you’re seeing some improvement. ❤ ❤ ❤
Oh, Penny, I’m much-improved. I know I will never be as I was pre-virus. But I’m doing, oh, so much better thanks to therapy and a whole lot of hard work.
I’m pulling for you. I have trigeminal neuralgia, another unseen diagnosis. Head pain issues. Take my drugs and hope for the best. Today when I looked at your picture I thought it was a picture of me. I guess the Kletscher roots run deep. Keep hanging in there. I’m 72 and still going on.
Lynn, then this post today is partly for you given you also have an invisible diagnosis. Head pain sounds debilitating. I’m sorry.
You hang in there, too. I’m a few years behind you in age, but not many. My photos are not particularly current.
I have been following your story with great interest, since I related to your symptoms. I find your descriptions of the treatments fascinating. You have provided a meaningful message of hope.
Thank you, Beth. I’ll do a summary soon of everything I’ve been through, where I’m at today and how I got to a better place…because I graduated today from vestibular rehab therapy after six months.
I learned something new today – I was not aware there was a Balance Awareness Week. When I was in my late-30’s I did not realize what I was in for medical wise that would take time to diagnosis let alone learn to recover from and be with me for the rest of my life. For me a lot was due to gaining balance and strength back – I felt like my left side went one way and the right went the other while the top half was doing something different than the bottom half of my body. Fiona the Flamingo is the perfect mascot! The best thing I did for myself was to be my own advocate and seek out the Team I needed for my overall health, happiness, and wellness. I have a primary that is western and holistic, I have great therapists, and then I discovered Barre (ballet-inspired exercise) and that was the biggest game changer for my health. It also had me tapping into this daily nauseous I was dealing with for years and was just dismissed as stress. There was a real medical reason behind it and I have claimed back my liver health in the past few years. Everything is connected within your whole being and only you live in it and can tell when something is amiss. So grateful for sharing your story and you are a such a fighter and finding your balance and strength again 🙂 (((((((loveandhugs))))) Happy Day – Enjoy!
You’ve certainly experienced your own challenging health journey. But to know you are in a better place because you “found” the right help is reaffirming. What I love most about you is your always POSITIVE attitude. Thank you for sharing your story here today.
I’m so glad you’re seeing improvement!
Mostly, I’m better, although I still have challenging days, like today. It often depends on how much I do. On Tuesday I did a lot and, as a result, I taxed my brain.
I have a friend who is also experiencing symptoms similar to yours, but not as severe. Her symptoms are also thought to be caused by COVID. I am glad your therapy is bringing about some improvement.
I’m sorry your friend is experiencing similar health issues thought to be caused by COVID. Some days I feel optimistic, other days not so much. Today is one of those challenging days as I, once again, bumped into something due to my vision issues. That’s next on my list, to see a specialist at the University of Minnesota. I hope to post an update this week on where I’m at now in managing my symptoms.
You are such a fighter and I am so happy to hear that you are progressing each day to better health. What a journey this is and will continue to be. So thankful for organizations like VeDa who work hard to provide education and resources to those who suffer from debilitating diseases.
Thank you, Beth Ann. I’m trying hard. I am thankful for the Vestibular Disorders Association and so very thankful you alerted me to this organization.