Finding Hope – Hood County News

Heather Cleveland

Heather Cleveland shares about her diagnosis, next weekends fundraiser and hope for a cure

Heather Cleveland has been a staple of the Granbury scene for decades both as a businesswoman, and as an involved participant in the local art scene. Cleveland was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in May 2021. On Saturday, Oct. 21, she will host an ALS walk in Granbury to support and provide funding for the ALS community, after hosting a walk last year in Weatherford Weatherford and Granbury being her two hometowns. Here she shares with Hood County News readers the story of her diagnosis, struggles and words of hope in her own words. Cleveland is able to type her story by using technology that allows her to type using her eyes:

You have ALS.

Nothing can prepare you to hear those words or for the overwhelming sense of fear of the known and the unknown. You know whats coming, but not exactly how or when. Every persons experience with ALS is different.

Amyotrophic lateral sclerosis (ALS) better known as Lou Gehrigs disease in the U.S. and Motor Neuron Disease in the rest of the world causes the upper (brain) and lower (spinal cord) motor neurons to die. These are the neurons that signal voluntary muscle movement.

Without those signals, your muscles begin to atrophy and cease to function. You lose the ability to walk, talk, swallow, and eventually breathe. There is no cure yet.

Unless you opt for invasive procedures like a feeding tube or a tracheostomy, you are likely to only live an average of two to five years. Its as if youre in an increasingly constrictive straight jacket while your mind remains intact, unless you have ALS with FTD frontotemporal dementia a not uncommon combination.

When my local neurologist delivered my diagnosis, based on my symptoms and a brain MRI, she readily admitted ALS was not her specialty. Within the week she had me scheduled for a confirmation diagnosis with a doctor she considered the top ALS neurologist in North Texas Dr. Daragh Heitzman. He heads a multi-disciplinary ALS clinic at Texas Neurology in Dallas.

Diagnosing ALS is a process of elimination because so many of the symptoms mimic other diseases. It takes a battery of tests, bloodwork, and scans to rule out everything else but ALS.

One of the tests is an EMG where needle electrodes are inserted into your muscles to measure electrical activity.A spinal tap is another diagnostic tool. Its all as much fun as it sounds. From the onset of symptoms, the average time it takes to get a definitive diagnosis is 18 months. For me it was about four months only because I delayed seeing a doctor.

Sure enough, on May 3, 2021, it was indeed confirmed I had ALS. At both neurologists offices, I felt like I had out-of-body experiences. A preternaturally calm, detached me absorbed the information.

It was a full week before the reality, tears, rage, and why me? finally hit, especially as I contemplated how I was going to let family and friends know. It wasnt just my life that had been turned upside down and inside out. It felt as if the universe had just landed on me with both feet.

I suppose at this point I should explain the relevance of my experience to this article. But first a little background

I was born in Hico and raised in Parker County on my familys (maternal side) cattle ranch just south of Weatherford near the community of Tin Top and the Brazos River.

Growing up a 4-H kid when I wasnt on horseback, fishing, or looking after the cattle with my grandfather I spent my formative years raising and showing rabbits, sheep and Dobermans while also developing a lifelong interest in the arts, specifically photography.

After studying communications at Trinity University in San Antonio and photography and art history at the University of New Mexico in Albuquerque, I got the idea of having a retail kitchenware shop and began working on a business plan while still in New Mexico.

It wasnt that big a leap considering Id spent most of my college years working retail jobs and had grown up learning a love of all things culinary from a particularly adventurous cook my mother, Helen Cleveland.

My fondness for Granbury stemmed from my familys (paternal side) connection to the town and many memories of times spent on the lake or the square as a kid and it never occurred to me to consider anywhere else to start a business.

So, in 1993 I founded and was the sole proprietor of The Pan Handle on the Granbury Square until 2016 when I sold the shop. During those 23 years, I enjoyed prolific partnerships with Tarleton State Universitys Dora Lee Langdon Cultural Center, and various chefs and sommeliers, to produce a series of popular culinary and wine appreciation classes, tours, and trips. I also was an active member of the Historic Granbury Merchants Association and the Granbury Chamber of Commerce.

As a result of the classes, I developed a deep interest in the burgeoning Texas wine industry and in 2005, began studying viticulture through programs developed by Texas A&M University, Texas Tech University and the Texas Wine Grape Growers Association.

The Pan Handle is still a fixture on the square with its third set of brand-new owners and is celebrating its 30th Panniversary this year.

I am very fortunate to have worked with so many wonderful people who contributed to the success of the business. There are countless employees, customers, artisans, producers, and collaborators to whom I owe a massive debt of gratitude for their support and passion.

In 2011, I started Sanchez Creek South Vineyard in partnership with my mother, on the familys cattle ranch and became a full-time grape rancher in addition to running the shop.

I was also a founding member of the Granbury Wine Walk Committee, coordinating wineries and vendors as well as co-chairing the Sip & Savor event over the course of six years.

In 2013, I joined the Granbury Arts Alliance (GAA) and was involved with the formation and acceptance by the city council of a public arts policy.This led to the successful petitioning of the city council for the creation of the Granbury Cultural Arts Commission, on which I served as chairperson for its first two years.

I was so thrilled and proud when the current commission members were able to complete the five- year plan begun by the inaugural commission and achieve the recent designation as a cultural district by the Texas Commission on the Arts. That was huge and a long time coming.

Also, as part of GAA, I was involved with the Moon Auction fundraiser created by Elise Techentine in conjunction with the Harvest Moon Festival of the Arts (HMFA) during her tenure as chair of the annual event.

When she stepped down as chair of the HMFA, I happily took over the Moon Auction as a continuing fundraiser for GAA. It sort of became my pet project and every year I was overwhelmed by the generosity, talent, and ingenuity of our local artists in contributing moon-themed artwork for the auction. It continues to be an even bigger success under the current direction of Teresa Houston.

What does all this have to do with ALS? When I got my diagnosis in May 2021, I was fully ambulatory, albeit with balance issues and a pronounced limp. By November of that year, I was wheelchair dependent, only able to walk short distances with a walker.

By the following March I had lost the use of my hands, and at the one-year mark in May 2022, very few people could understand my speech. I had whats known as a limb-onset with fast progression.

Some people experience the opposite, their symptoms might start with their speech slurring bulbar onset and they may have slower progression. Everyone has a different journey, but in the end, ALS is 100% fatal.

In my case, I felt like I had been robbed of everything that had defined me as a person. That was a dark place to be and wasnt going to be sustainable if I were going to make the most of the time I have left.

Dr. Heitzman had several pieces of advice for increasing both longevity and quality of life: a proactive and positive attitude, seizing every opportunity to do things while youre still able to, belief in a higher power/purpose, and not thinking in terms of having an expiration date being key among them.

While I was figuring out how I was going to adjust to my new reality of being completely dependent on others for all my physical needs, a cousin happened to mention a young woman with ALS living in Hico.

Her name is Sunny Brous and she writes an award-winning blog about life with ALS (SunnyStrong.com). She was diagnosed at the age of 27, and in the past 7 years has made it her mission to embrace everyone in the ALS community to let them know they are not alone.

She also has a social media presence Talk ALS To Me where she educates and talks about her efforts to spread awareness and advocate for a cure. She has been all over the world and to Capitol Hill to testify about the need for more funding and faster access to finding a cure.

I reached out to her and after attending my first Walk to Defeat ALS hosted by Sunny in Hico in 2021, I was inspired to host a Walk the following year.

With two lifelong friends as co-captains, we formed the team Heathers Heroes, and had our first Walk to Defeat ALS in our hometown of Weatherford, raising over $18,000. All proceeds went to the ALS Association whose mission it is to help discover treatments and a cure for ALS, and to serve, advocate for, and empower those affected by ALS to live their lives to the fullest.

We were overwhelmed by the generosity and show of support from the community. And since I feel equally connected to both towns, I thought Id try hosting in Granbury this year along with my co-captains longtime friends Cindy Peters and Teri Ewing. I could not do this without them and so appreciate their willingness to dive in to help.

We would love to see everyone who wants to join our walk of hope, awareness, fellowship, and fundraising. There is a common saying among ALS advocacy groups, ALS is not an incurable disease. It is an underfunded one. Please join us in creating a world where no one ever has to fear the words you have ALS again.

As I learned to navigate my condition, my outlook has changed significantly from, Im dying of this disease to Im living with this disease. For all ALS takes away, it gives you clarity about what truly matters.

I have a lot to be grateful for: the love and support of friends and family and the constant and complete care by my mother; the drugs I take to slow the progression of the disease, which allows me more time with loved ones; and the possibility of a cure within my lifetime. Im thankful for the technology that allows me to type with my eyes, allowing them to speak for me. And finally, Im grateful for the recent, tremendous strides scientific research has made in understanding the underlying causes of ALS, and the potential impact of gene-editing and AI driven treatments. I remind myself of these blessings every day.

From Heathers team :

Most people only know of ALS because of the Ice Bucket Challenge and the names Lou Gehrig and Stephen Hawking. The Ice Bucket Challenge is an example of advocacy and funding that had a positive outcome. The Food and Drug Administration approved the first new drug in five years that significantly slows ALS disease progression and prolongs life. The drug development was partially funded by the Ice Bucket Challenge.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.The purpose of the Walk to Defeat ALS is to bring hope, to raise awareness, to provide resources and services to families free of charge, and to unlock the mystery of ALS. Families pay an average of $250,000 a year to support their loved one suffering with ALS.

Heather and her supporters would love you to join the Heathers Heroes Facebook page where you can find up-to-date information. They ask that you please consider joining the team and Walk to Defeat ALS. The team is committed to raising funds and supporting those in the ALS community as well as spreading awareness of the urgency to find a cure.

Anyone who joins the team and donates $100 will get an ALS Unlock the Cure T-shirt that can be worn at the event.

GRANBURY WALK TO DEFEAT ALS

Saturday, Oct. 21, 2023

9:30 a.m.

Granbury Square Pavilion

201 E. Pearl, Granbury

9:30-10:30 am: Check-in, Visit with Heather, Live Music with Joseph Nevelle. 10:30 a.m. Opening remarks

10:50 a.m. Group photo

11:00 a.m. Walk

Begin at Granbury Square Plaza, then walk past The Pan Handle on Crockett Street, left on Bridge Street to Houston Street, turning toward Shanley Park, continue on the walking trail to Memorial Lane/Firefighters Park and back. You may walk as much or as little as you like.The team is delighted to see a show of support for ALS and Heather Cleveland in whatever capacity.All proceeds go to the ALS Association to help discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.

To sign up and/or donate go to web.alsa.org/goto/HeathersHeroes23

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Finding Hope - Hood County News