If any had asked me, I would have told them that I would likely live into my late 80s or early 90s. I have longevity on my mother’s side, after all: most of her brothers and sisters and mother lived into their 80s. My father’s side? Not as good, but his mom lived into her 80s.
If anyone had asked me.
No one did, but I thought about it now and then. When I heard of someone with cancer or attended a funeral of a friend or acquaintance, I wondered how I would end, and more importantly, how I would handle the inevitable, either a terminal diagnosis or old age.
God has an ironic sense of humor; in my thinking about it, He determined to let me experience it. I do not blame Him; in some ways this is a journey that gives a special meaning to life.
In July 2013, I was diagnosed with ALS.
When I tell people, I sometimes get a blank stare, because ALS is considered an “orphan” disease. We all are well aware of some forms of cancer, thanks to wonderful efforts on behalf of encouraging people to be tested, and the deeply unfortunate prevalence of various cancers. ALS is much less common, thankfully. No disease diagnosis is good, and my heart goes out to everyone who has any affliction of body, mind or spirit. I have ALS, however, so that is what I will write about here. While only 30,000 people in the United States typically are people with ALS, called PALS, Havre has seen its share: two well-known community leaders died from ALS complications, one lives an inspiring life with it, and I am experiencing its onset.
Amyotrophic lateral sclerosis, or ALS, is a motor neuron disease. Motor neurons control voluntary muscle motion. Basically, the brain sends signals through the motor neurons to the muscles to get them to do their job. Something happens in an ALS patient: the nerves that transmit the signals start to wither and die. As they do so, the muscles lose not only the signal from the brain, but nourishment. The Greek-origin name translates to: “a” = without or no; “myo” = muscle; “trophic” = nourishment.
No cause is determined; no treatment or cure exists.
However, as we have recently heard, professional football retirees with MS (multiple sclerosis) and ALS will be given $3 and $5 million, respectively, as a settlement for repetitive concussions suffered while playing in the NFL. Clearly, the conclusion of the court was that repetitive concussions likely had influence on the development of these two neuromuscular diseases. The long-term care costs of diseases such as MS and ALS require substantial financial input, so hopefully these former players will get the help they need.
Regardless, once one has the disease, there still remains no cure, and very little treatment of symptoms, which include muscle cramping or twitching. One drug exists, called Rilutek, but it doesn’t alleviate symptoms, and extends expected life only by two to three months. Rilutek tries to address a suspected cause: pooling of glutamate around the motor neurons. At $900 or so a month, is it worth it? I didn’t think so; I’d rather spend the money traveling and enjoying life!
So, what lies ahead? My ALS is progressing, much as that was something we hoped never to face. I walk with a cane, and have an ankle support orthotic brace. It keeps my right foot raised so I don’t trip. Of course, it doesn’t stop me from falling backward; I am getting my share of bumps and bruises as my balance deteriorates with the degenerating neurons and muscles. At some point, I will need to use a wheelchair.
Sometimes as I walk slowly along a hallway, I think what it will be like to see everything from half my height in a wheelchair.
I relish being able to walk still, albeit slowly. I can even still go up and down a staircase, although my arms are doing the lion’s share of pulling me up — and keeping me from plunging headlong down! You don’t want to be behind me on a stairwell when you’re in a hurry.
I can talk, I can type, I can write. I can still do so much, and I hope to hold on to most things as long as I can.
When it gets to the point that I can’t do those things, I will find other things to do. Reading, NetFlix, DVDs, music, watching the sun rise and set or the rain or snow fall: ALS doesn’t usually take one’s mind, eyes, or ears, thankfully. There is still so very much to live for beyond physical activity. I would have never believed that until I was faced with the reality.
I was told by one doctor to get working on my “bucket list.” I have no particular list; I have been fortunate to have had lots of travel and adventure in my life already. My most important goal is to see Caroline graduate high school. That seems near yet far: 4-1/2 years away with a disease that has a 3-5 year mortality for the majority of patients. I will do what it takes to get there.
And maybe Dolan will get married and have a baby by then. No pressure, Dolan, and please remember the sequence — first comes love, then comes marriage, then comes baby in a baby carriage!
I can’t write anything, here or in my blog “Living With ALS: Each Day is Joyful,” without expressing my appreciation for the love and support of my extended family and friends and the community of Havre and the Hi-Line. I am blessed to experience this here, among people who care, and I hope to show you how much your support means to me in my words and actions.
Life is good. That is my mantra, and I will say it over and over. I have not been treated badly by God, or Fate, or whatever. If ALS makes me appreciate more what I have, then it can’t be all bad, can it?
(Pam Hillery is a former Havre city councilwoman and has been active in a multitude of civic, educational and community activities.)