Recently I was listening to Pandora in the carpool line, when my mind wandered to the successful #ALSicebucketchallenge and a visit of its co-founder, Nancy Frates whose son Pete has ALS.
“Come Talk to Me” by Peter Gabriel came on the station.
It immediately resonated. I looked it up online. Come Talk To Me Peter Gabriel
I learned he wrote it about communicating with his daughter.
Communication – isn’t that what we all want? What we need more of?
Come Talk to Me.
This song reminded me of my mom who had ALS.
When Mom first showed signs of ALS, it affected her speech.
She began to slur her words.
When she called friends or businesses she knew, they thought she was drunk, so hung up.
3 years after she was dx. with ALS Mom became totally paralyzed.
She often had to rely on people coming up to her to talk.
Come Talk to Me.
As the ALS progressed in her body, she could not speak or type on a computer.
Her facial muscles weakened, so eventually it became difficult to read emotion on her face.
The worst part of her ALS for me was when we really struggled to communicate.
Because in the end, she could only communicate with her eyes.
Upon hearing this song, my thoughts about the ALS challenge came full circle.
The #ALSicebucketchallenge and ALS is so much about communication.
Social media was the perfect platform.
What if you have ALS and you cannot talk, walk or move well but your brain still works?
You CRAVE to converse, to sing, to run, to play instruments, to write and type.
You want to SCREAM from a mountain top.
You want to SHATTER the glass walls around you with a wrecking ball.
But you can’t.
So what can you do to get attention?
Embrace 21st century technology!
That IS it! That is freaking it!
The #ALSicebucketchallenge is a rally cry.
Yes, a battle cry by the ALS community, and for all of those who suffer from incurable diseases and can’t advocate for themselves.
Come talk to us. Stop looking the other way.
This challenge rocked the world.
Like ALS rocks ours.
Come talk to me.
In January 2000, my sisters and I learned our mother had a strange disease called ALS.
It was a cold, rainy day when we found out it was ALS.
Even the doctor’s office was grim when we waited for the diagnosis.
When the young neurologist finally walked in the room she said,
“You have ALS. I am sorry.”
I am sorry?
“There is no cure….”
Then she said, “We all die someday…it is just a matter of how.”
OMG, what a thing to say!
As my body tried to fight back the tears my heart ached and my lungs burned.
Our dad had died 8 years earlier of Cancer. That was hard.
Now Mom had ALS, an insurmountable diagnosis. What would this bring?
I hugged my mom and asked the doctor, “What can we do?”
“Well, there is an interesting study going at Johns Hopkins. You should call the lead researcher.” (I later learned the study was with mice.)
She scribbled his name on a little piece of paper.
My God, my God…where for art thou?
“Good luck” said the Dr. as she disappeared from the room.
Good luck? We got out of that hell hole as fast as we could.
I read all about ALS that night and cried myself to sleep.
My pillow was soaked with tears.
ALS moves fast.
Most ALS patients become 100% paralyzed within months or years, yet their mind stays intact. Many patients die within two to five years.
Yet, while living with ALS, patients lose their ability to walk, speak, feed themselves, lift a glass, hold a pencil, hug their children, or pet an animal.
In the later stages of ALS, patients are only able to communicate with their eyes.
Then they lose their ability to breathe and die.
Why does this happen?
In a normal situation, the brain sends out messages to tell the body and muscles to move, or take a certain action, the message carriers deliver the message, and we move.
With ALS, the message carriers (motor neurons) die so when the brain says go do this action, the muscles don’t get the message, so they begin to atrophy and paralyze.
The conversation just stops.
As a newly diagnosed ALS patient, you might be brave enough to walk into an ALS or MDA support group meeting.
There you will see patients of all ages, races and stages of ALS, but also see reps for power wheelchairs, accessible vans, ventilators, breathing machines, Hoyer lifts and portable ramps.
Just Imagine what you get to look forward to!
Mom remained positive throughout her journey with ALS, but as a newly diagnosed patient, she walked in-and then right out of her first support group meeting.
Mom was very outgoing and loved interacting with people.
She was a business entrepreneur and active citizen.
She also loved singing, biking, working out, dancing and playing her piano.
ALS first attacked her speech.
Then it affected her hands.
So, Mom could no longer play the keys on her piano.
Her handwriting soon became illegible. Within a year it became impossible for her to hold pencil, or type on a keyboard with her fingers-even with the lightest (like a feather) touch.
As a result of the atrophy in her hands, Mom also had problems feeding herself.
It was very uncomfortable for other people to see her eating or being helped to eat, so like many patients, she stopped attending events she loved where food was served, or just would not partake at an event while others were eating.
Then it progressed to her legs.
I vividly remember one day early in her diagnosis when we were driving back from Johns Hopkins. The appointment with the neurologist and drive back had been really tough.
It was raining.
Happy to be safely home, we parked in the garage and headed towards a short ramp to the elevator at her apartment. The pavement was slick from the moisture.
She was using her walker shuffling ahead to the elevator. I was holding groceries and close behind her.
Suddenly, she lost balance and began to fall forward as she got to the cement ramp. HOLY SHIT!
We both screamed in pure terror as I dropped the bags, grabbed her by the waist, and pulled her back with all my might to prevent her from dropping face forward. I am thankful to this day she did not smash her beautiful face.
We realized right then we needed to get a wheelchair for safe transport.
Soon thereafter, we would get calls from Mom often at 2 and 3 am because she had fallen out of her bed. It took brut physical and mental strength of both my husband and I to lift her back into bed safely.
We knew we needed more help.
Thankfully, mom had purchased long-term care insurance (LTC) eight years earlier after my Dad died, so we were able to hire CNAs to help us at night. It was peace of mind and respite for us, but a major loss of independence for mom – just a year into her ALS.
Many patients have to rely solely on their family, friends or neighbors for help.
She began losing weight quickly.
What a diet eh?
The Dr. said we needed do go ahead with surgery for a feeding tube. She had never had surgery before so we were scared, but installing a tube would ensure she would get the life saving calories and nutrition she needed.
She had to do it, or else. So one day in the back pew at church we made the tearful decision to get it done.
We went through four wheelchairs in three years, the last one being a shiny red power wheelchair, just like the fancy one we had seen at the very first support group meeting.
By this time, Mom was almost totally paralyzed. But she was able to “drive” the wheelchair via a tiny switch on the arm pad.
This was great when she wanted to run away from us or get some speed!
Mom continued going to concerts and church on Sundays. She loved to hear the choir, organ music, and visit with friends, so she had always sat close up front.
Once she was in a wheelchair, she had to sit in the back of the church.
Please talk to me.
Church friends who normally talked to her would smile as they walked by us as they left the church. They could not understand what she said, or did not know what to say, so they did not try too hard. Awkward I suppose. So, communication was at a minimum.
Along our journey, a sweet reporter with Fox news in Washington, DC did a long documentary on mom, ALS, and our fundraising and advocacy efforts.
At one dramatic point during the filming, Mom said:
“I want to stand up and say please don’t ignore me!”
“I just want you to come talk to me!”
The lack of communication was painful.
She could hear but eventually could not speak.
When Mom could no longer speak or communicate with her hands or a laptop dictating her typing (think early version of Siri), we held up an alphabet chart in front of her, so she could “point and click” with her eyes what she desperately wanted to communicate.
Then she began to struggle to breathe.
Our gorgeous, outgoing, wildly fun Mom died in 2004, just 4 years into her diagnosis and 2 weeks after my baby daughter was born.
ALS brought this Type A girl to her knees.
No matter how fast we worked to obtain assistive technology, equipment, the insanely expensive medication for symptom management, and get the doctors, insurance, nurses, and care team aligned, as well as raise money for research; we could not halt ALS.
Think this is a fundraising fad?
Imagine having ALS.
Imagine desperately trying to communicate with your words or hands.
Imagine not being able to hug or hold those you love. imagine not being able to hold your child or grandchild safely.
Imagine trying to get to an ALS walk on time when the wheelchair does not work or the van ramp mis-functions.
Imagine not being able to get up Capital Hill in your power wheelchair on ALS Advocacy Day because, even with the power chair, it takes too much oxygen.
Imagine not being able to enter a house or business because there is no ramp to get in, nor door wide enough, nor accessible bathroom for you, your wheelchair and a caregiver.
Imagine being a caregiver to someone you love with ALS.
Imagine all that you see and do for your loved one to keep up with ALS. Then you pause and remember to show your love by wrapping thier arms around you for that hug, because they are unable to move their arms by themselves.
IMAGINE all this frustration! Then imagine not being able to verbally express it.
OR do anything to stop it.
There is good though. Really. You get something for going through ALS.
Gratitude, Humility and Community.
When you take care of someone you love who has ALS, you become highly sensitive and thankful for accessible parking spaces, supportive friends, businesses, restrooms, venues service providers, firemen and ALS/MDA support teams who come to the rescue.
You also become very thankful for any simple act of kindness people show, such as opening a door, giving a smile, making eye contact, lending a strong hand, stopping by for a visit, or simply making a certain transaction easier.
You also become utterly thankful for the doctors, researchers, scientists, microbiologists, ALS and MDA foundations, activists and advocates and big data. All these people and groups try year after year, to help slow or stop the progression of ALS.
This is why the #Icebucketchallenge is so amazing for all of us in the ALS community.
We are so thankful.
It gives us a way to communicate en masse and it continues to give a glimmer of hope.
A certain justice indeed. Take that ALS Monster.
Here is the kicker. This is why it matters so much.
It made a difference.
ALS was first discovered in the 1860 by the father of neurology, Jean-Martin Charcot. Yet it is 2017 and we still have NO cure. Like so many neurological diseases, ALS has not been profitable enough for drug companies to bring to market life saving therapies and discoveries. We have been waiting for progress for over 157 years.
Yet, the Ice Bucket Challenger has turned the tide.
My mom would have loved this.
Here is the impact you had as of 2017.
RESULTS: Ice Bucket Challenge Progress
Over $250 Million for ALS has been raised around the world.
ALS foundations, researchers and scientists have collaborated for the very first time. 80 researchers in 11 countries shared knowledge. #BeyondPublishing.
This Ice Bucket Challenge funded a new gene discoveries announced July 2016.
2 new drugs are in clinical trials with ALS patients.
100% increase in patient care and services.
$75 Million given to the Department of Defense to understand why Veterans are twice as likely to get ALS.
Clinical Trials Push.
FDA agreed to speed up clinical trials for ALS patients.
This happened in just 2 years!
We need to keep the momentum.
We need you #Changemakers to stay engaged.
One amazing discovery with ALS could open up a whole new world in nueromuscular research, therapies and cures.
Thanks to the Frates and 21st century fundraising.
We made this kind of impact together.
Fin. ARP Updated 5/1/17
*I do not own rites to this incredible music.