Walk for ALS Guardian Angels E

MICROSOFT
Walk for ALS Guardian Angels
E - Newsletter
www.walkforalsguardianangels.com
A P R I L
Save the Date!
A Message from Becky
4th Annual
Walk Sept 24th, 2016
Mason Park,
Irvine,Ca
Be sure to visit
our website homepage to view walk
videos and go to
Photo Album to
view walk pictures
INSIDE
THIS ISSUE:
Who are the
2
ALSGA
A Story from 3
Stu Millheiser
Saying Goodbye
4
to a Dear Friend
A story from
2 0 1 6
3
OUR WALK IS BACK! I am excited to announce that our ALS
Guardian Angels Walk is back this September!
I missed seeing all of you last year and can’t wait until we’re together again on September 24th, 2016 to honor our PALS. We have
a lot of great things planned this year so you won’t want to miss it.
Come out for an exhilarating day of fun and fundraising!
This years walk will be dedicated to Mary Navarro, our dear friend
and very first ribbon cutter, who lost her battle with ALS in February. You can read more about this incredible woman and “Mary’s
Hope” on page 4.
Be sure to register on our website to walk as an individual, join a team or create your
own team and ask everyone you know to support you with a donation. If we all work
together we can meet our goal of $75,000 and give financial aid to PALS and their
families who are struggling from the effects of ALS.
Catherine Scott will be our honorary ribbon cutter and her son Anthony (of Ellen fame)
will give us some words of wisdom about his journey with ALS. He and his mom are
both suffering from this brutal disease and have done so much for the ALS community.
Catherine is one of the most determined women I have ever met (story on page 7) and
Anthony, a professional photographer before ALS, has not let anything keep him from
his love of photography. He’s rigged a camera to his wheelchair and has been cruising
Redlands, where he and his wife Laarne live, taking some awesome photos. You will
want to meet these two amazing PALS! (and maybe purchase one of his photos)
So put on your walking shoes, come out in your wheelchairs, put those babies in their
strollers and dogs on their leashes! Just get there any way you can for a day of love,
inspiration and an incredible feeling of community.
our founder
Getting to know 5
SEE YOU IN SEPTEMBER!
our PALS
Stories of the
ALSGA
6
Catherine’s
Quest
7
Compassion
Team Info
8
Registration
Now Open!
Click here
www.walkforalsguardianangels.com
PAGE
2
Who are the ALS Guardian Angels
The ALS Guardian Angel Foundation was started by one man,
Stuart Millheiser, who has no family member with ALS, just a huge heart
for those who do. His foundation helps those living with the disease
celebrate their time left with their loved ones, offering strength, hope,
and joy through grants.
Stu Millheiser
Founder of the
ALS Guardian Angels
“Yet today I
consider myself the
luckiest man on the
face of the earth. I
might have been
given a bad break,
but I ‘ve got an awful
lot to live for”
….Lou Gehrig’s
farewell speech at
Yankee Stadium
“I always
wondered why
somebody didn’t
do something
about that…..
then I realized I
was somebody”
Until there is a cure ...
There is the ALS Guardian Angels Foundation
The Reason We Walk
The ALS Guardian
Angels Foundation has
coordinated an overwhelming amount of
grants for ALS patients
and their families with
whatever is needed. It
may be an overdue mortgage payment. a remodeled bathroom to accommodate the patient, respite for a weary caregiver or maybe a last
wish fulfilled. The needs
of ALS patients runs the
gamut of financial and
emotional support.
Your donations help.
One of the best ways to
support our fundraising effort is to form a
team in honor or memory
of your loved one for our
2016 Walk …. and start
fundraising! Team work
inspires and motivates
others to be involved and
together you will be surprised on the amount of
money you’ll raise! And
the best part? The look
on the faces of the PALS
when they see the love
Silent Auction Items Needed!
and support from all the
teams on walk day.
So let’s get started! Go to
the Registration page of
the website and download
the “Walkers Handbook”
at the bottom of the page.
This will give you all the
helpful hints you will need
to create your team. Then
get your team registered
on our website link below
by going to the donate
page & clicking on “Start
a fundraiser” in the orange
box to the right!
www.walkforalsguardianangels.com
We need items for our silent auction on walk day and we have a great suggestion
from Team Schueller that your team can be involved in! Team gift baskets! If
your team would like to donate, you would come up with a theme and each member would donate one item for the basket to go along with your theme. An example would be: Take Me Out to the Ballgame and each member would donate one
item such as a small cooler, baseball cap, cracker jacks, tickets to an Angels game,
etc. Some other ideas are: Movie Night, Beach; Cheese and Wine…or come up
with your own idea! Email or call me if you’re in and what your theme is so we
don’t duplicate! Have fun with it! walk4alsga@gmail.com or 707 889-0603
WALK FOR ALS GUARDIAN ANGELS
A SLAP IN THE FACE by Stu Millheiser
The human mind works in strange ways.
At least mine does. I started The ALS
Guardian Angels to help those that I saw
as the most helpless among us. And to
feel good about myself. I didn’t look at it
as a sacrifice. After all, I had plenty of
time. And I could afford to help. So I did.
Year after year I saw what I could never
have imagined. People choking on their
saliva. Once vibrant individuals lying on
their backs staring at the ceiling. Day
after day. With no end in sight. Proud
adults suffering the indignity of having
their diapers changed by their spouses. Or
their children. Or complete strangers.
People suffering in ways the public never
imagines. Did you know that there are
four degrees of bed sores? First degree.
Second degree. Third degree. Fourth
degree. What could a fourth degree bedsore possibly feel like? Who ever heard of
such a thing? I thought I had the strength
to handle seeing the obvious horrors of
ALS up close. And I did. But it was the
less obvious horrors that got to me.
ALS exposes a person to a whole new
world of suffering. It goes far beyond
losing the use of one’s limbs. Or ability to
speak. As I sit here, I am consciously
trying to avoid swallowing my saliva.
One minute. Two minutes. That’s it.
Beyond that I feel as if I am drowning.
Think of what it would be like to have a
cold and not be able to clear your throat.
Or cough. Or have a rash you can’t
scratch. Or a bulging disc in your neck
from lying in one position. And not even
be able to move your head to relieve the
pressure and ease the pain. Our ability to
act reflexively evolved as a survival
mechanism. We never think about it.
That is until the ability to act reflexively is
taken away. Then a minor irritant can
become an all-consuming horror. We feel
as if our very survival is at stake. People
survive waterboarding. But they feel as if
they will drown during the process. And
panic sets in. Now try lying on your back.
Don’t swallow. Don’t clear your throat.
Don’t cough. Let your fluids accumulate
in your throat and chest. You can’t.
Many ALS patients don’t have a choice.
Now try it the next time you have a cold.
Waterboarding ends. ALS doesn’t. I
could go on and on without scratching the
surface. But you get the idea.
When it’s called to our attention, we can at
least grasp the magnitude of the physical
anguish an ALS patient suffers. And
shudder. And grimace. And shake our
heads. But what about the psychological
pain? We simply cannot get into a patient’s head and imagine what they are
thinking. And more often than not, that’s
all they can do. Think. I can’t begin to
imagine where an ALS victim’s mind may
wander. As they ruminate on their condition. Their future. Their present. And
how it is affecting not only them, but their
loved ones. Have you ever been depressed? Not sad. But suffered from full
blown depression. Where you wake up
wanting to cry. And spend your day fighting to hold back the tears. You think the
pain can’t get worse. But it is a walk in
the park compared to what an ALS patient
may suffer. Psychological pain is hard to
describe. It’s even harder when you can’t
communicate. Let me give you an example. One of many. And not the most extreme. ALSGA had a patient who was at
the latter stage of ALS. He had been
locked in and helpless for years. He had a
traditional marriage. The man provides
and the woman takes care of him. But he
could no longer provide. And they were
destitute. But his wife still cared for him.
Every day. Every hour. Every minute.
For years. Until finally, she couldn’t take
it. She called 911 and left her address.
And then killed herself. And left behind
was a man who could do nothing more
than stare at the ceiling. And think. And
suffer. Now think about the same man.
Except he has no one. Just four walls and
a ceiling. In a cold institution we refer to
as a nursing home. His human contact
consists of an orderly that comes in to
change his diaper on a schedule. And do
other chores that do no more than maintain
his existence. There are hundreds of patients in similar situations. Maybe thousands. We’ll never know. They can’t
reach out. And the ALS charities and associations don’t look for them.
Einstein said everything is relative. But
ALS takes relativity to an absurd extreme.
An ALS victim with a loving family that
is willing to care for him until the end is
considered “lucky”. I hear it all the time.
And I guess he is ”lucky” relative to the
hapless soul mentioned in the previous
paragraph. But think about it. A person
is locked into a life of physical and mental anguish. At the same time his family
is locked into a life that becomes vastly
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3
different than what they could ever have
imagined. His prison becomes their
prison. His anguish becomes their anguish. And ALS devours all of their
assets, dreams, and financially security.
In the world of ALS, this is being
“lucky”.
I began this rant by saying that the human mind works in strange ways. I’ve
been a firsthand witness to the horrors of
ALS for years. But I’ve never had a
family member or close friend afflicted.
You can say it hasn’t affected me personally. I live in a beautiful house. I
have the love of a wonderful woman.
My health. Good friends. Financial
security. And a dog that can melt my
heart at the wag of her tail. By any
stretch of the imagination, I am one of
the lucky ones. But like I said, the human mind works in strange ways. And
in August of 2015 I began feeling sorry
for myself. I lost sight of what was important. ALS. The suffering. The anguish. The pain. And that through ALSGA, I was in a unique position of being
able to ease someone’s misery. But it
became about me. And the bucket challenge funds we never received. And the
donations or lack thereof. Never mind
that for some reason, God or good fortune or circumstance or whatever you
want to call it, gave me a gift. The gift
of being in a position to give without
sacrifice. Never mind all that. I’ll shut
it down. And so I did.
Sometimes a symbolic “slap” in the face
can make someone see reality more
clearly. And my symbolic “slap” in the
face came in the form of a phone call
from Becky Gasper. And my reality is
that there are people who give of themselves far more than I do. Even though
they have much less to give. And Becky
Gasper is such a person. I know that we
will never be able to adequately help all
of those who come to us for help. And
there will always be a backlog of deserving grant applications. And desperate
phone calls that need to be returned. But
from this day on, if you have been
helped by ALSGA, it is because of
Becky Gasper. And a “slap”
in the
face.
www.walkforalsguardianangels.com
APRIL
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2016
SAYING GOODBY TO A DEAR FRIEND BY Becky Gasper
We lost Mary Navarro this year in February and when I was asked to be one of
the speakers at Mary’s memorial service by her family, I was honored beyond
words. A flood of memories came to mind of the past few years that we had been
friends. We met on Facebook before we met in person and I was inspired by her
optimism and that infectious smile she always had. Then one day I was able to
meet here face to face and there was that beautiful smile again. I knew I wanted
to know this woman more.
Although I know Mary was in pain with ALS most of the time, she never complained but instead was
concerned about those around her. She had a tremendous love for Jesus and her family. She and her husband Raul raised six amazing kids, five boys and one girl who are now the most loving, giving adults I
have ever met -just like their mama. I am proud to call each one of them friends as well.
When I asked Mary if she would be our honorary ribbon cutter for our 1st Annual ALS Guardian Angels Walk, she was so excited. She said she also wanted to put a fundraising team together for our walk to
raise money for ALSGA because they had helped her when she needed it most. With the help of her family and friends, Mary did put her team together and aptly named it “Mary’s Hope”. Well “Mary’s Hope”
was the largest team we had on that first walk day and raised the most money for ALSGA. The team then
came to our walk year after year. They were always the first ones to show up, always with a crowd of support from family and friends and sharing food they had brought with whoever happened to wander by.
You could feel the love.
We will miss Mary and her beautiful smile this year but “Team Mary’s Hope” will carry on, walking in
her memory and I’m sure we’ll feel the love all over again.
Our 2016 Walk is dedicated to you my friend
We also said goodbye to these ALS Warriors
Angel Ayala
Sheri
Saenz
Jim
Racobs
IN MEMORY OF 2015 –2016
Jody Oliver
Laura Reinhart
Nora Perez
4
APRIL
2016
PAGE
Getting to know our PALS
Meet Renee Kimberling
My journey with ALS started
one day before my 60th birthday.
Not having had serious symptoms, the diagnosis was a complete shock. Hearing the diagnosis and then that you will live 2-5
years and die of respiratory arrest takes your breath away.
Thankfully my husband of 40+
years was with me at the time
and shared my grief. I went
through the stages of loss, as did
Larry. Denial, “How could this
be?”, anger, “I didn’t deserve
this disease, I had been a good
and productive person, hadn’t
I?” Disbelief was Larry’s favorite: “Maybe you don’t have it,
maybe they are wrong”. A second opinion was sought with a
neurologist who specializes in
neuromuscular disorders. When
she confirmed the diagnosis, I
fell into a state of depression and
anger. I felt so sorry for myself,
but tried not to show it. I was,
after all, a well-educated professional nurse practitioner and director of a college health service
and needed desperately to keep
up appearances, confiding in
very few people about what was
happening to me, all the while
bargaining with God—just let
me see my granddaughter (then 9
years old) graduate from high
school; give me enough time to
finish the big project of setting
up 3 colleges’ health services for
my district, after all my job was
“who I am”, right? How would
they ever go on without me?
Well, I did manage to finish the
project, but I felt something in
me was missing. I was still angry and I caught myself taking
my frustrations out on those
around me. My inability to
climb stairs, get up from a chair,
or open a bottle of water was
very frustrating, and I hated asking people for help.
In a conversation with my adult
daughter not long after I was
venting all my frustrations. She
said to me, “you know Mom,
only your relationship with God
can really make you happy.”
She was right, of course, but it
took me some time to get the
negativity and self-pity out of
me to realize it on my own. As
time went by, I became too exhausted to work and had to take
a leave of absence. I began to
see that work was not who I
was.
During all the “rest” I
was getting, Candy’s words
came back to me. I started talking to God, asking him to make
me whole spiritually. I had
dedicated my life and heart to
Christ some years before, but
this was the beginning of daily
conversations with Him, asking
for guidance and strength. As
always, He delivered!
I awoke one morning and said
to myself, “Well, Renee, are
you going to waste the precious
time God has given you, or are
you going to be happy, productive and enjoy the rest of your
life?” I am glad to say that I
have accepted that this is God’s
plan for me and I am, with His
help, able to face whatever
comes. I am now 68 years old
and retired. These days I focus
my energy on helping as many
people as I can by being a good
listener, a good friend and a caring family member. My family
is small but very close and I am
so grateful for their love and
support. Larry and I participate
in as many activities as we
physically can to watch our
grandchildren play water polo,
soccer, baseball, etc. The grandchildren still like to come for
“sleepovers” and we relish our
time with them. It is a gift to be
still able to participate in this
way, and I don’t miss any of it if
humanly possible!
My message to all PALS and
their caretakers is simply this:
Don’t waste your precious time
being unhappy! Find what is
good in your life and capitalize
on it!
God’s Blessings to all,
5
Page 6
Stories of the ALS Guardian Angels Foundation
THE REAL GUARDIAN ANGEL IS THE
RACOBS FAMILY
Tim Racobs was our ribbon cutter for the last ALSGA Walk. He has since passed away and his family
was thoughtful enough to donate his Tobii communication device to ALSGA. Due to their kindness,
Jim Case will be able to communicate again. The
below message should go to the Racobs' not me. On
behalf of Jim Case, thank you!!
Dear Mr. Millheiser,
I'm requesting that you please ship the Tobii speech
device to us for my husband John who has ALS and
is in need of the device. You have made our day
with this offer. You are truly our Guardian Angel.
Again, thank you for being so kind and offering this
device to us. It will be a great help to John as he is
unable to speak clearly most days. We will be forever grateful for your kindness.
Sincerely, Kathleen Case
THE GIFT OF COMFORT
Received January 11
"Alex died January 4. I never checked and had no
idea how much the two of you had corresponded
and the comfort it gave him until we went
through all his emails. Without the Tobii you
gifted him with, his life would never have been
nearly as tolerable as it was. I hope it brings as
much comfort to whoever gets it next."
*The Tobii was donated to ALSGA by Sara
Gimes. ALSGA had it reconditioned and sent to
Alex Summerlin. Alex and I had a running dialogue over the course of the past year thanks to
the Tobii Sara donated. If anyone needs to "talk"
via email, I'm always here for you.
Stu
WORD TRAVELS SLOWLY
ALSGA doesn’t get much notice in the USA, but
Stu,
in Japan it may be a different story. I recently reWant you to know that the Tobii is all set up and in
ceived some online contributions from Japan and
operation. The stand arrived yesterday and Amy
the donors cited the following story. Apparently
spent about two hours on the phone with tech supword travels slowly. The story first appeared in
port for updates to the programs. I know that this
will be a wonderful tool for John to use for commu- the USA in a Japanese language newspaper in
2011. It recently appeared in January 2016 in a
nication.
I want to express our appreciation again for allowing newsletter published in Japan and generated
about $500.00 in donations from 8 different indius to have this equipment. We are grateful for the
generosity of the person who donated it and for you viduals. Meanwhile, Hajime is
and your organization for making it available to my
still with us. I’m
husband
praying he can
If we can help with the expense of the postage to
survive for as
send this equipment, please let me know.
May God bless you for your work to make life easier long as it takes to
find a cure.
for those afflicted with this terrible disease.
Kathy Case
NEW ALSGA WAREHOUSE FACILITY
ALSGA just acquired a new warehouse facility called Stu's Garage. We will try to stock frequently
needed items (we always need eye gaze equipment!!). Hopefully, when the need arises, we'll be able to
ship something right away. You'll get it much sooner. And I won't have to go crazy looking for it.
Many of you thought I had opened up a big new facility. It's just "Stu's" garage, meaning my garage.
4th ANNUAL WALK FOR ALS GUARDIAN ANGELS—September 24, 2016—MASON PARK, IRVINE
Page 7
ALSGA NEWS - CATHERINE’S QUEST
Catherine Scott is on a mission, let me tell you! She has drafted a petition requesting that
Medicare change it’s policy about in-home care for PALS. She and her son Anthony both
have ALS and are facing this issue and she is requesting that everyone sign her petition on
the link below. Here is the latest update on her quest.
WE'RE JUST GETTING STARTED Our petition already has over 8,800 signatures...Let's
get to 10,000!!! Please continue to sign, share and
ask everyone you know to do the same. Don't forget
your mailman, psychic and snake charmer :) We will
not stop until the ALS community receives the respect, home care and support we deserve.
Also, in case you missed it, we created a guide for
ALS patients to use to secure desperately needed,
existing home health services from Medicare. While
Medicare still needs to increase home care coverage
and resolve systemic issues, THERE ARE BENEFITS AVAILABLE NOW to ALS patients to help
offset the strain families are under. If one single person is helped, it is one less person suffering.
Medicare Home Health Services - ALS Patients
PDF:
https://
drive.google.com/…/0B0yxxVCJLk5la1JOTUJNU
W5SV…/view…
My facebook post:
https://www.facebook.com/donandcatherine.scott.1/
posts/1702702709985492?
notif_t=like&notif_id=1459298789155191
Much love to you all..
Please support Catherine’s Quest by going to this
website and sign the petition.
https://www.change.org/p/tell-als-associationimprove-home-care-for-als-patients
COMING EVENTS
The Famous Johnny Martinez is the Grand
Marshall of the ALS Guardian Angel
"Racing for a Cure" Car Show. He is bringing his AWARD WINNING
GRAND NATIONAL WINNER 2016
“Wicked In Suede" 1929 Ford Truck!
SAVE THE DATE TO ATTEND THE ALSGA
CAR SHOW ON SATURDAY, NOVEMBER 5,
2016 AT TRI-CITY PARK,IN PLACENTIA
Page 8
Compassion Team
As some of you know, we have formed a Compassion Team to come along side the ALS patient and be a comfort through visits, tangible help, perhaps an outing (if there is easy transport) or just to be there to answer questions, hold a hand or be a listening ear. Sadly, we have
also found there are many PALS that have no family and are all alone in their ALS journey. If
you know of anyone we can help or would like a visit yourself, please contact the team at:
walk4alsga@gmail.com
Just a few visits with our PALS
BYE FOR NOW—SEE YOU IN SEPTEMBER!