Please God, Don't Let It Take My Smile
It was a sunny day in May 2005, the flowers were just coming in which Mom loved and
she told me she had something called ALS. Mom just had her 65th birthday in September.
She was involved with the heart institute in Ottawa at the Civic Hospital as a volunteer.
Mom loved working there, and loved talking with people and sharing different ideas with
them. Mom also went to the Nepean Sportsplex once a week for exercise class. My
mother enjoyed having lunch or dinners with her friends and family, enjoyed going to the
Arts Center for plays and concerts. My Mom was very independent. Mom loved listening
to what was happening in her children's lives and was always ready to give advice. Mom
was a very outgoing person, and had the most beautiful smiles.
Several months before May, Mom started to trip a lot, getting off buses, walking down
the street, she had several problems. Mom, who never ever complained about things,
thought she should go to the doctors, and see what was wrong with her. So off we went to
her family doctor, and then off to specialists, she had tests for this, and tests for that, and
then Mom was diagnosed with ALS, and at that moment, life would not be the same as
she knew it.
Many people have asked, what is ALS? ALS is better known as Lou Gehrig's disease.
ALS strands for Amyotrophic Lateral Sclerosis. ALS is a rapidly progressive an d fatal
neuromuscular disease that is characterized be degeneration of a select group of nerve
calls and pathways (motor neurons) in the brain and spinal cord. The loss of motor
neurons leads to progressive paralysis of the voluntary muscles. The heart is not a
voluntary muscle, and therefore, remains unaffected by the disease. However, since
breathing is controlled voluntarily by the chest muscles, death usually occurs when the
chest muscles are no longer able to help the lungs achieve adequate oxygenation.
Generally there is little impairment to the brain or senses.
ALS is not contagious, but it is fatal. For the most part, the battle is short, with 80%
loosing their lives within 3 to five years of diagnosis. While between 10 and 20% live ten
years or more after diagnosis, others only live a few months. While the cause is unknown,
research is being conducted in areas related to genetic predispositions, viral or infectious
agents, environmental toxins and immunological changes.
For some people, the muscles for speaking, swallowing or breathing are the first affected.
This is known as Bulbar ALS. The term “BULBAR” refers to the motor neurons located
in the brain stem that controls the muscles used for chewing, swallowing and speaking.
ALS symptoms, and the order in which they occur, vary from one person to the other.
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In 85% of cases, ALS affects the lower portions of the spinal cord first. This is known as
limb onset ALS. In these cases, muscle weakness, cramps and weakened reflexes affects
the muscle in the arms and legs as the first signs of ALS. The rate of muscle loss can vary
significantly from person to person with some patients having long periods with very
slow degeneration.
So when Mom told me she had ALS, I went to see her and told her you will not go
through this on your own. I will beside you all the way through this disease. I started to
read all I could about this disease and possibly slower it's progress. As I sat beside my
Mom, I told her you have to keep moving your hands each and every free minute. Mom
you need to move your arms, and legs, we need to keep those muscles alive as long as we
can.
I made an appointment with the ALS chapter for Eastern Ontario, where I now met an
amazing person and very good friend Marion Williams, who was the Regional Manager.
Marion explained to me more about ALS and how horrible this disease was, and that it
didn't get a lot of support from the government or even local governments and that most
money and time come from the ALS patient families. Sure ALS doesn't kill like cancer or
heart disease, but ALS has horrible odds also.
Well Mom had just moved into her apartment, and was just getting settled when this
flashed into her life. Had to move around items, in her apartment, so she wouldn't trip
over things. So then had to start getting rid of some of her favorite things, so she could
move freely in her apartment. Had to go to doctors every 2 – 3 weeks at the Ottawa
Rehab center at the General hospital. Would pick Mom up and we would spend mornings
going to see specialists. Mom and her best friend Sandra began looking at nursing homes.
They would visit many of them till they could make a list of three that Mom would
eventually end up living in one of the three.
Life as my Mother knew it was changing very quickly. Mom was starting to divide up her
precious belongings to my Sister and brother and I because she couldn't keep them
anymore. It was just more stuff in her way. Mom began having troubles with the stairs to
get to her apartment, it was just so tiresome to climb the stairs to get to her home, she just
stopped going out. So we called the head office, and asked if it was possible for her to get
an apartment on the first floor. Within a few weeks, they called us and said they had one.
So we moved her downstairs.
Mom said to me, you have to find a way to bring awareness to this disease. I promised
my mother that I would find ways to raise awareness and monies for ALS, that way
families who did not have a lot of money or resources; it would be there for them. So I
had the first Drive4ALS in the Ottawa area, and raised just over $4000 dollars for the
ALS community. My Mother would start buying equipment, and never use it just so other
families would have the use of it when they needed it.
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Shortly after the golf tournament, Mom was no longer using a cane. But was now in a
wheel chair, her legs were no longer strong enough for her to go out and walk. She was
able to walk somewhat in her apartment. Next to come was a motorized wheelchair. She
would use it to go outside on her own. All these changes were within a 2 year frame.
Mom's life had changed drastically. So many things had changed. She could no longer
cook 3 meals, she couldn’t bathe on her own anymore, could not do her laundry, all
things that you and I take granted. But with ALS that takes energy that you don't have. So
we needed to get a PSW worker in with Mom 3 times a week, and every morning. After
only being in her apartment for no more then 3 months, Mom said it was time to go to the
nursing home. So we made the call. On June 30th 2007 the Gary Armstrong Nursing
Home called and said they had a room for her. So I took Mom up to see it. She loved it,
and made friends instantly before she moved in, that Thursday of the same week, we
were moving Mom into the nursing home. I felt so bad, but as Mom said we would have
more time together this way.
Life with ALS progressed very fast, Mom could not do a lot any more, and she was a
prisoner to her wheelchair. Everywhere she went, or did was in this chair. Could no
longer take her out in the car for a drive, or go to Tim Horton’s and get a coffee, and sit
in the car because she was too small to sit in the seat with a seatbelt. She was the size of a
4 year old in weight and only flopped around in the seat. Mom then found a friend in the
nursing home named Jenny, and they began to explore the city from their wheel chairs,
they found a way to go to the Rideau Mall, Tim Horton’s, Wal-Mart and that gave a
spark to Mom's life again. Mom had a great summer in 2007 with her new traveling
friend Jenny. But soon after that Mom's breathing would become very tight and shallow,
and she had very hard time breathing.
We had another golf tournament with help of others who lost loved ones from ALS and
we were able to raise about $8500 for the ALS Society. And that made my Mom smile
again, and feels proud that she was helping others with this disease. Mom now needed a
machine called a Bi-Pap machine to help her breath when she lay down, because the
muscles around her lungs were dying. So when she lay down, there was no muscles nor
would gravity pull Mom's lungs down when she was laid down, so she got this machine
called a bi-pap which forces air in and out of her lungs helping Mom breathe. We went to
the Rehab centre of Ottawa, and got lessons on how to use the machine, and what it does
for us when we use it. How to use the machine, how to clean the machine. So Mom
would explain to each and every PSW worker and nurse on the floor how to use, how to
clean this machine. Mom taught everyone she ran into the nursing home how to treat a
patient with ALS. She became a true advocate for ALS.
Mom’s life was getting smaller and smaller each day. Mom used to go outside on her
own, enjoy the fresh air, look at the birds, and talk to everyone. And just enjoy life the
best she could. Mom was really starting to have trouble breathing now, so the home
suggested she didn’t go outside on her own anymore in case she didn’t have the energy to
get her self back into the home. And that was another hurdle for her to get over. Mom
was beginning to feel her life was really starting to crumble, but she just kept on smiling!
Everything was disappearing from her, but she still had that wonderful smile.
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Christmas 2007, Mom began to tell me she was dying, the ALS was finally beginning to
take over her life, we began to talk about funeral arrangements, and stuff I needed to do,
people I needed to call. Stuff she needed to buy for the ALS Society, so others would
have it. Mom always worried about others then just she, I remember a man at her table
couldn’t see outside when eating, as it bothered him, so she asked the staff to move him,
or change with her. Mom always made sure we smiled at others in the nursing home, and
gave everyone big smiles. She always had nice things to say to the people visiting the
nursing home for the first time, on how wonderful the staff was, all the staff, didn’t
matter what their jobs were, she always talks highly of them. Her world was getting
smaller and smaller, as she was also. Mom said she was starting to realize what ALS was.
All the muscles in her body were beginning to shut down, Her legs began to swell. Every
other Sunday I would take in a bake potato from Wendy’s, it had to have butter and sour
cream and chives, and that would be enough to fill her. Mom was eating less and less.
Every level of ALS that affected Mom, we thought the end was coming, but she just kept
fighting this disease till the fullest. She lived another year and surprised everyone. Mom
even worried about when to die. She would say, I can’t die Dec 12th because that was my
father’s birthday (even though they weren’t married anymore) She couldn’t die because
that was Greg’s birthday, She couldn’t die Dec 18th because that is when her younger
brother died, and then Christmas, and then Jan 6th 2009 because that would have been her
anniversary. My mother even worried about dying on important dates for others. So we
got through Christmas, and now Mom weighs no more then 75 pounds, and loosing
weight what seemed to be hourly. She looked like a old frail Lady, she was like 65
pounds soaking wet. Having a extremely hard time breathing. But every morning she
awakes with help from the nursing home, and puts on that incredible smile. Till this day
as I am writing this story, Moms is now like 55 pounds, can hardly breathe, and is still
smiling when I walk in the room. Today is March 24, 2009, and my Mother is still with
us as I write this. She is now on drugs to calm her when she lays down and uses her bipap, still gets up with lots of hardship, but still gets up, gets in her chair, and joins the rest
of the residents for breakfast.
Till this day, Mom thanks God, For not taking her Smile, She has lost almost every other
motion, but as rough as ALS has been to her, she still smiles.
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