Monica McHam was diagnosed with ALS in 2021. She must now use a wheelchair and has lost the use of her voice, but Monica’s mind remains as sharp as ever. She is completely paralyzed on the right side but was able to type her story using two fingers on her left hand.
These are her words, and this is her story.
I am 66 years old. I was born into a large family in Cincinnati, Ohio. I am married to my heaven-sent husband, Mick McHam; we are celebrating our 27th wedding anniversary. We have no children, but between us we have 18 nieces and nephews, and they are all busy populating the next generation.
For as long as I remember, I knew I would see the world. After one year of college, I enlisted in the US Army (to begin seeing the world). I had my 19th birthday in basic training. I was in the army for not quite eight years, and I was stationed at three different bases in Germany. Because of Germany’s central location and with 30 days paid leave per year, I got a great start on seeing the world. I travelled throughout Europe, Iberia, Scandinavia, Greece, Turkey, and parts of Africa.
In the years Mick and I have been together, we have travelled thousands of miles here in America. It is a country filled with history, natural beauty, and wonderful people.
I finished college when I got out and later went to law school, both at the University of Houston. I lived in Houston for about 35 years and moved to Weatherford in 2018.
I was diagnosed with bulbar onset ALS, voice affected first, on April 6th, 2021. I began seeking medical help in October 2020. I had begun to slur my speech occasionally. I sought help from a local ENT, who insisted my problem was acid reflux. I could/did not believe him. To humor me, he sent me for speech therapy, and many tests. None of which confirmed or countered his diagnosis. As a last resort, he sent me to a local neurologist. By now it was March 2021.
The neurologist recognized the problem immediately; he talked briefly about ALS and referred me to the neurology specialist at UT Southwestern. I had multiple tests there to eliminate other diseases. There was no other possibility, I had ALS. During our initial discussion with the doctor at UTSW, she noted that in women over 65 with bulbar onset, ALS progresses rapidly. I thought ‘not me. I’m special.’
In a year and a few weeks, I have gone from fully functional to wheelchair bound. I cannot walk, talk, hold a book, brush my teeth, bathe myself, dress myself, or leave the house for more than a few hours. My pulmonary function is down to 43 percent. All my water, nutrition, and medication are injected through a feeding tube. My right side is totally paralyzed, my left leg is weakening, and I have two functional fingers on my left hand.
Although we have a part-time home health aide, Mick is my primary caregiver. He is a geologist, and like any good scientist, he immediately dove in getting the facts and learning about this wicked disease. He found the ALS Association of Texas, multiple ALS forums, identified the equipment we would need, and got lots of help from them all. He still goes back for help as my disease progresses.
When I told my siblings about my ALS diagnosis, they were appropriately horrified. My younger sister, Patti Hill, is amazingly proactive. The day after I told her about my diagnosis, she had gone online and learned a ton of good information about ALS. She had found the ALS Association of Texas, signed up a team, put the walk and request for donations on FB. She is our team leader…an obvious choice.
My parents and one brother have passed away. So now I have two sisters and three brothers, we are scattered across four states. Even at a distance my siblings shower me with love, cards, and visits. Several of them came to Dallas last year to walk with us. The rest walked in their hometown.
The team name, Queen Bee, is a nod to my eye-smacking yellow wheelchair. When I was being fitted for it, they asked me what color I wanted, noting the reds were quite popular. I still thought I was ‘special’ so red wasn’t going to cut it. The yellow popped out. Mick said, ‘yellow and black, she’ll be the queen bee.’ Shortly afterwards he got bee stickers and plastered them strategically on my chair.
Patti, being the great team leader, got me a QUEEN BEE t-shirt, Mick a HUBBEE t-shirt, and the rest of the team members WORKER BEE T-shirts.
I walk because: I want the world to know what ALS is. Like me before diagnosis, the average person may have heard of Lou Gehrig or Steven Hawking, but that’s it. I want the world to know and understand what ALS means. Anyone can get it, it is evil and progressive, and there is no cure.
This brings me to my second reason for walking: I walk to raise money. I believe that science will find a cure or realistic treatment for ALS. Not in my lifetime, but it will be found. In the real-world research takes money.
At an individual level ALS Texas educates people about the disease, hosts support groups, and works year-round as an advocate for people with ALS. My hope is that every person diagnosed with ALS gets the love and support I have received.
My final hope (but not really an expectation) is that the next POWERBALL winner will donate millions to defeat ALS.
The rate of ALS in veterans is twice that of the public. All military veterans with ALS will be classified as 100 percent disabled by the VA.
If you are diagnosed with ALS or possibly diagnosed, contact the VA center near you. It doesn’t matter when you served, how long you were in, what you did, where you were stationed, or how long you have been out.
The ALS advocacy organization that works with the VA is Paralyzed Veterans of America (PVA). When you contact PVA, they will walk you through the process and hand carry your paperwork up the line.
You will receive amazing benefits in addition to all medical care. ALS is an obscenely costly disease, and the VA goes out of its way to eliminate that source of stress.
ALS is also hard because once someone sees me in a wheelchair and learns I cannot talk, they act like I am not there. They ignore me or talk to me in a childish voice. It drives me crazy that my mind is fully intact, but I cannot communicate the fact. That a fully functioning brain is in this damaged body, apparently never occurs to them.
So, with rapidly progressing ALS, it seems I am not as special as I thought, at least not in the way I thought. I am special because I realize my life has been an amazing journey. I am grateful to have found ALS Texas and to have the opportunity to contribute to its mission. This is just one of the special gifts I have received. I realize that in these ways, I am special…
If ALS were more widely understood people might understand that it leaves the mind intact. That is the greatest things that ALS Texas does…educate the public.
She recalls the difficult ALS journey her mother Jackie faced. Several years ago, Jackie started having trouble with her balance. Patricia laughed as she shared her mother was always a clumsy woman, so they didn’t think much of the symptoms. But after she also started having issues swallowing, the family searched for answers
Unfortunately, Jackie’s ALS symptoms progressed quickly, causing her condition to decline. She lost her battle with ALS in March 2020. Patricia stayed in Lubbock for another year to handle her mother’s affairs before moving back to Oklahoma. “I will stay involved and do everything I can for this group and ALS in general because it is so near and dear to my heart. These people really are my family now,” Patricia shared.
Ken Olson has lived in Texas since 1967. He and his wife Charlene have a background in law enforcement and emergency management. Ken was diagnosed with ALS in 2015 after experiencing drop foot and a complicated recovery from a bilateral knee replacement. “I’m the older dude with ALS in our group,” Ken shared with a chuckle.
Rebecca Talley was a runner who was very active in sports. She and her husband Tim met in university and were full-time missionaries in Kenya and Tanzania for 27 years. Rebecca also worked as an adjunct professor at Lubbock Christian University. She retired in 2019 after being diagnosed with ALS in March of that year.
Bruce Gilliam played softball for many years before being diagnosed with ALS in 2019. Today, the disease has progressed to his foot, legs, and it’s now affecting his right hand. That doesn’t stop him from coaching a senior softball team in Lubbock or spending time with his wife, Raquel, and rescue pup, Mia.
For many in the group, their first encounter with ALS was when they or a family member was diagnosed. They want that to change. The group discovered the Walk to Defeat ALS and decided that’s where they would get started.
Last year, the group had plans to do a big BBQ cookoff to raise funds for the Walk. However, due to the unexpected circumstances of the pandemic, the team participated virtually. This year, they’re back bigger and better than ever.
Not only does the team hope to raise awareness, but they also hope to attract better resources in Lubbock. Amanda noted that while there’s a population of ALS patients in Lubbock, there aren’t many doctors equipped to treat ALS nearby. “I’d love to see more of our medical community involved in ALS.”
The group hopes that the efforts of the Walk will help encourage other medical professionals in Lubbock to join the cause. It’s important to have knowledgeable professionals who can guide those experiencing ALS as they navigate treatments and those who claim they have solutions.
Cool Cats for a Cure
The Long Road to Diagnosis
Maggie was told to see a neurologist, but with the holidays, they were not able to get an appointment until the end of December. By Halloween, Maggie was unable to move her leg all the way up to her hip, and shortly before Thanksgiving, the family became so concerned about her condition that they took Maggie to North Methodist hospital where she stayed for three days. A nurse there told Priscilla “if it was my mom, I would take her straight to University Hospital,” stating that they have more equipment there to help get answers.
Priscilla and her family did just that and took her mother straight from one hospital to the next. After a long 48-hour wait, the family was finally able to get a room on the neurology floor. As the tests and treatments continued, it became more and more clear that Maggie most likely had ALS.
A Whole New World
Priscilla and her family were able to keep her mother at home, and even though it was hard to see her decline, Priscilla says it was a good opportunity for the family to get every moment they could with Maggie.
Wind Warriors
Priscilla’s Family used their restaurants as a platform to kick-start their fundraising. They sold t-shirts, held their own ice bucket challenges, and even held a special fundraising dinner. Together, they raised thousands of dollars to support Maggie and other Texans with ALS.
“It’s important to us because we know so little about this diagnosis and because no other family should have to suffer this way. I feel that awareness and knowledge need to be brought out in the medical industry. There were times that we got hospitalized and there were nurses and doctors who had no idea what ALS was.
“Although it’s an incredibly devastating diagnosis, try to look at it in some positive way and cherish every moment. I think the only good things I can say about the diagnosis was I could’ve lost my mom to a heart attack or an aneurysm – something where I never would’ve had time to say my goodbyes. We got 14 months to cherish every moment with her.”
This group grew tremendously with more students and community mentors getting involved each year. Later, he helped found a Girls of Greatness club for young women. As Trace continued to impact his community in Weatherford ISD, he was promoted to Assistant Principal at Weatherford High School.
The Long Road to Diagnosis
We Can Make a Difference
Rupesh Kotiya grew up in North Carolina and moved to Dallas, Texas fifteen years ago after spending some time in New York. Siobhan is originally from the UK, and after dating long-distance for a while, she moved to Dallas the same year. Today, they are married with two wonderful boys, Ronan who is 10 and Keaton who is 8.
In that moment, everything changed for the Kotiya family. Their sons were only 4 and 2 years old at the time. Rupesh still had a successful career as the VP of Sales in North Texas and Oklahoma for Mainstay Investments, a division of New York Life. Nothing would be the same, but they would not let ALS get the best of them.
Despite the challenges of a new diagnosis, Rupesh continued to work full time for two years. He had an impressive career as the VP of Sales, and it was only after it became unsafe for him to drive that he retired.
By the time 2020 came around, Rupesh felt his symptoms more in his arms, legs, and hands. It became more difficult for him to walk without a walker and now he uses a motorized wheelchair. In that same year, his doctor recommended that he have a trach placed and he is now on a ventilator 24/7. Even still, Rupesh doesn’t let that stop him from making memories with his family.
The Kotiya family previously supported other walk events, but after connecting with ALS Texas, they decided to support the organization. “Even though the prognosis is never good and there is no cure, maybe we can be the ones to help find the cure,” Siobhan shared. They joined the Texas Walk to Defeat ALS under the team name, Friends of Rupesh.
Siobhan hopes that Rupesh’s legacy will have a lasting impact on their two children. Already, their oldest son Ronan, has been inspired by his father. He wrote a book about his father’s ALS journey. “The book is written from the perspective of a 10 year old and aims to provide hope that you can still do many things, e.g., go on holiday, attend parties and most importantly, enjoy life with your loved ones”. What started out as a summer project turned into a fundraiser. Ronan has sold over 600 books and is close to raising almost $7,500 to benefit Texans with ALS.
Ronan isn’t the only one inspired by Rupesh to support the ALS Texas mission. Six years ago, one of Rupesh’s close friends created the “Friends of Rupesh” golf tournament to raise funds for the ALS Texas mission. This year marks the sixth anniversary of this event to honor Rupesh.
She noted how ALS Texas supports her family with resources like a shower chair. She also discussed how the North Carolina chapter is equipping them with a power wheelchair to use while they travel to the state where Rupesh grew up.
You can support Texans with ALS like Rupesh this year at the Texas Walk to Defeat ALS! With both virtual and in-person options, you can walk YOUR WAY! Register in the city nearest to you and walk wherever you want on Saturday, October 30. Learn more at alstexas.org/walk. Together we will create a world without ALS!
John Lay is a 3rd generation Austinite and a 4th generation Texan with a long history of being active in his community. He served on the Austin ISD school board for eight years and furthered his love for the river by serving on the Colorado River Alliance board for twenty years. Recently, John was bestowed the honor of having their annual River Hero award named after him. Family is everything to John and his wife Jill. Their tight knit family of five children and eight grandchildren must agree, as they all live within three miles of one another. John is outgoing, has never been afraid of a microphone or podium, and his children often joke that they are jealous of their parents’ fun social life and incredible friendships. John often says, “Surround yourself with people that make you smile.”
