The ALS Ice Bucket Challenge.
Unless you live in a remote area with no Internet access, no cellphone service and no TV (and how are you reading this if that is the case??!), you have seen dozens, if not hundreds, of people get soaked over the past couple of weeks. All this is an effort to raise awareness of ALS as well as funds to fight this horrible disease.
Two of my friends from high school accepted the challenge this past weekend and posted videos on Facebook, mentioning my name. I am so honored. And our church asked the other day if the staff and some others could come on Thursday and do the ice bucket thing on our front lawn! Pictures coming soon.
What does all this mean? Let me answer as one whose life has been hijacked by ALS.
Now, perhaps for the first time since Lou Gehrig fought his own battle with it, ALS is very much in the public eye. Awareness is a great place to start. We who are living with this disease don’t always attract a lot of attention. After all, you see people in wheelchairs every day for many reasons.
What most don’t see is the reality of the relentless decline in physical strength. Gradually (or in some cases, rapidly), something as simple as combing your hair becomes too much for your weak arms. Dressing becomes impossible without help. Eventually, the most basic human activities, including bathing and toileting, require assistance.
But ALS doesn’t stop there. The muscles used for swallowing are also affected. Meals become rather tricky as you try to avoid choking or sending something “down the wrong pipe.” Not everyone with ALS chooses to have a feeding tube surgically inserted into their belly. I have. The procedure will probably be done in early October.
But wait! There’s more! The muscles you use to speak are also going. People can’t understand you and you must repeat things. Then one day, speech becomes impossible. Without functional limbs, even writing is out. Before eye-gaze technology arrived on the scene, this was the point where your voice was silenced forever. Communication ceased and you were cut off from those you love.
Still alive. Mind intact. Full sensation.
But ALS isn’t finished yet. Take a deep breath. Now exhale. You just used some muscles. ALS takes those too. Cause of death with this disease is usually respiratory failure.
What about a ventilator? Sure, some choose to undergo a tracheostomy and can be kept alive a long time. In an emergency, this will be done unless the patient has specifically instructed that it NOT be done. I have so instructed. It is not my wish to go on a ventilator. My family knows this and I am confident that they love me and will respect my wishes. This is also legally spelled out in my Advance Directive. It’s a personal choice. I would never presume to advise another ALS patient.
The sequence of progression varies in each individual. So does the rate of progression. But the eventual outcome is the same.
If you’re still with me, you are perhaps more aware now than before of how ALS affects someone.
Now consider the wider shadow a diagnosis of ALS casts. Spouses, children, parents, siblings, friends and more. ALS causes collateral damage. It takes a heavy emotional toll on a family. Few escape unscathed.
Sounds bleak, huh? That’s because it is. ALS is 100% fatal.
(You did know there was a “but” coming, right? Hey, it’s ME!)
This ice bucket thing has raised millions of dollars. Millions. And with this money, families affected by ALS can be given the help they need by way of equipment, support groups and education. Doctors and scientists can continue the work already in progress to pinpoint the cause(s) of the disease, and to identify effective treatments leading one day to a cure.
Because that is the goal. A cure. Right now, there is only one FDA-approved drug to treat ALS and its effectiveness is questionable. Now, maybe work can speed up on investigating the use of already existing drugs to fight the disease, and to develop new therapies including the use of stem cells (which shows promise.)
Every video shared in sincerity represents hope to me and so many others. I know a cure won’t come in time to prevent the inevitable in my case. And I am OK with this. But it has got to stop somewhere. How about before your kid or grandkid gets diagnosed?
Want to help? Here are a few excellent places to start.
The ALS Association (ALSA)
The ALS Association Greater San Diego Chapter
Muscular Dystrophy Association (MDA)
Each of these organizations has helped us in tangible ways. We could not cope without their help. If you think your gift wouldn’t directly benefit those of us on this journey, I’m telling you: It most certainly will.
To all who have taken the Ice Bucket Challenge, thank you! Thanks to Legacy Church, LuAnn, Cindy, Bonnie, Nani and the Vasquez family! Thank you all from the bottom of my heart.
Today I feel drenched in buckets of hope. Hope that ALS will someday be just a chapter in history. My hope is rooted in something much more powerful than science, though. The Lord is my strength, my song and my salvation. I am filled with hope in Him.
This blog was posted originally on Aug. 22, 2014.
About the Author
Hi. I’m Patty, and I’m a wife and mom to two grown daughters, and I'm in my 50s, dealing with amyotrophic lateral sclerosis or ALS (also known as Lou Gehrig’s disease, or motor neuron disease). This blog is my journey through uncharted waters. People ask me constantly how I’m doing. The short answer is “OK.” I add “so far” in my head most times. So that’s what I’m calling this little corner of the interwebz, OK, So Far. So if you’re up for it, come along on this roller coaster ride known as my life. I can’t promise much in the way of entertainment, but I’ll try not to be too boring! Thanks for stopping by.