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.
