may 2010 newsletter
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ministration.
This has helped people with
ALS and their families to
receive timely access to
disability benefits.
This year’s attendees will
continue to work for in-
creased research funds for
ALS and continued develop-
ment funds for the ALS Reg-
istry.
For more information on
ALS Advocacy Day, check
out www.alsa.org/policy/
alsday.cfm.
From May 9th to the 11th,
members of the ALS Com-
munity, including our own
Chapter staff Stacey Orsted
(Executive Director) Kristen
Munyan, RN & Denise
George, RN (Patient Ser-
vices Coordinators), will
gather in Washington D.C.
to advocate for ALS re-
search funding and legisla-
tion. Advocacy Day is the
largest ALS Community
gathering in the United
States each year.
Past Advocacy Day events
have played a major role in
such legislative advances as
the 24-Month Medicare
Waiver, increased funding
for ALS research and the
passing of the ALS Registry
Act, which created the first
nationwide ALS patient reg-
istry at the Centers for Dis-
ease Control and Prevention
(CDC). These efforts also
saw the approval of regula-
tions that recognized ALS as
a service related disease
and established a presump-
tive disability ruling for ALS
at the Social Security Ad-
The ALS Community is Headed to Washington
Happy Mother’s Day!
The ALS Association, Michi-
gan Chapter would like to
wish all of the Mothers in
our community a very
Happy Mother’s Day. We
hope the day is filled with
love and family for you! In
this issue, to honor this spe-
cial day, we have been for-
tunate enough to have two
featured family articles,
both related to the incredi-
ble women we call
―mothers‖. Todd
Noeske, Public Policy Chair
for the ALS Association who
lost his mother to ALS, was
kind enough to share his
family’s touching story. We
were also lucky enough to
have Mary Kleiss, the dedi-
cated caregiver and mother
of 26 year old Regis Kleiss,
who is battling ALS, share
her experiences and reflec-
tions on caregiving with us.
We are so thankful for their
open and honest words and
hope they will touch you as
well. Happy Mother’s Day to
all of the mothers in our ALS
Community! We are thank-
ful for you!
Special points of interest:
ALS Advocacy Day in Washington!
Augmentative Communication Technology
Seminar in Royal Oak!
Meet the Kleiss Family
A Letter from Todd Noeske, Public Policy Chair
Patient Services News
The ALS Association, Michigan Chapter
Volu
me 1
, Is
sue 2
M
ay 2
010
Inside this issue:
Chapter Services: How can
we help you?
2
Tips for making dressing
easier
2
Items of Interest 3
A Letter from Todd Noeske 4-5
Seminar Updates 6
Calendar 7
Kleiss Family 8-9
May is Michigan’s ALS Awareness Month
At the request of our Chapter’s Public Policy Chair, Todd Noeske, Governor Granholm has
declared May to be ALS Awareness Month for the state of Michigan. Please show your support
and spread awareness this month by wearing a red ALS Awareness wrist band, passing along
this newsletter, or joining our Chapter for some of our upcoming events.
Get your band today at:
www.alsa-michigan.org
The ALS Association, Michigan
Chapter is here to serve pa-
tients and families with ALS
and to help make their jour-
ney of living with ALS easier.
The Chapter has two Patient
Services Coordinators on staff
(Denise & Kristen) who are
available to help provide infor-
mation, referrals, support and
hope to families affected by
this disease.
We encourage you to contact
Denise or Kristen if you feel
that you would benefit from
these services or would like
more information. We are
more than happy to help!
Information and Referrals:
Your Patient Services Coordi-
nator is available Monday
through Friday to answer your
questions and provide infor-
mation and referrals to appro-
priate agencies.
Equipment Loan Closet:
Durable medical equipment
available for pick-up or deliv-
ery, free of charge.
Support Groups: Monthly
meetings held throughout the
state, including two call in
support group sessions. See
our website at www.alsa-
michigan.org for more details.
Ruthanne’s Angels: Volun-
teer Program: Linking volun-
teers to patients and families
in their area. From meal
preparation to yard work, the
list is endless.
The ALS Care Connection
Program: Is a network
(circle) of caring people or-
ganized to help those living
with ALS and their caregivers.
Educational Conferences:
Featuring speakers on various
aspects of ALS. Held every
other month throughout the
state. Open to all. No cost.
Hospice Education: Program
that trains Michigan hospice
organization in the care of
ALS patients.
Lending Library: Books,
videos, CDs and DVDs about
ALS available for loan free of
charge.
In addition to these services,
our Patient Services Staff is
available to meet with you
and your family either in our
offices or at your home should
you like. Our staff is also pre-
sent at the ALS Clinics
throughout the state. Denise
visits the Mary Free Bed Clinic
in Grand Rapids and Kristen
visits the Henry Ford Clinic in
Detroit and the University of
Michigan Clinic in Ann Arbor.
They will be happy to meet
with you during your appoint-
ment as well.
We are happy to be able to
provide these services to our
PALS and their families and
welcome your suggestions for
additional services as we are
continuously evaluating our
programs. Please contact Kris-
ten or Denise with sugges-
tions or ideas.
- Large buttons and Velcro
clasps are easier to manipulate
than small buttons or clasps.
- Loss of body fat and muscle
can cause people with ALS to
feel cold often. Wearing several
layers of light clothing can make
for a more comfortable day.
- Dress in a position that is
comfortable for you. Some peo-
ple find that dressing lying down
is easiest, others find that sit-
ting on the edge of their chair
makes it easiest for them.
- If you have breathing prob-
Getting dressed in the morn-
ing is an important part of the
day. Getting out of pajamas and
into regular clothes can be im-
portant to a person’s self-
esteem, even if they are not
leaving their house. With ALS,
this process can become tiring
and challenging. Consider these
tips for making dressing easier
and less tiring.
- Try to find clothing with roomy
arm and leg holes, that will
make slipping limbs into sleeves
and legs easier.
lems, consider wearing a top
with a wider neck line to keep
fabric away from your face.
Avoid hairy fabrics like mohair
that have loose filaments that
can be inhaled.
- To make putting shoes on
easier, try replacing standard
laces with elastic ones or choos-
ing a shoe with Velcro rather
than laces.
Just remember: The goal should
be to dress comfortably, safely
and without exhausting your-
self!
Chapter Services: What Can We Do For You?
Getting Dressed: Tips to Make Dressing Easier
Page 2 Pati
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Volu
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“The ALS Association,
Michigan Chapter is
here to serve patients
and families with ALS
and to help make their
journey of living with
ALS easier.”
Let us know how we
can assist you. We
are more than happy
to help!
During the month of May, we will be updating our facebook and blog daily to
share the stories of families in Michigan who have been affected by ALS. Find
us on facebook at:
Michigan Chapter
to see our updates for ALS Awareness Month!
You can find out blog at
www.alsamichiganchapter.blogspot.com.
Please be sure to subscribe to follow our blog so you can get updates when we
post new information!
http://www.accesstr.com/AMAZING/index.asp - Access to Recreation,
Inc. specializes in products to help people with disabilities enjoy recreational activities
they felt they may no longer be able to. Some of the products include a beach wheel-
chair, fishing aids, crocheting aids and wheelchair accessories. This helpful website is
easy to navigate and has many products available to make recreational activities
more accessible.
Suggested Reading: Check out the ALS Association’s suggested reading list for
some great books like the ―Easy to Swallow, Easy to Chew Cookbook‖ or ―The Care-
giver Survival Series‖. Information on these helpful publications can be found at the
link: http://www.alsa.org/resources/reading.cfm?
CFID=5854248&CFTOKEN=5ad7e4fb09b98363-FD585863-188B-2E62-80E8C8A5A7A5FB9A
Going on a Summer Vacation? Check out ―Barrier Free Travel: A Nuts and
Bolts Guide for Wheelers and Slow Walkers‖, an interesting and informative publica-
tion about accessible travel while using assistive technology like walkers and wheel-
chairs.
Watch Facebook for Updates during Advocacy!
Items of Interest
Page 3
“I get up. I walk.
I fall down.
Meanwhile, I
keep dancing.” -
Rabbi Hillel
You can find out blog at:
www.alsamichiganchapter.blogspot.com
Share Your Story!
Please consider sharing your story with us for ALS Advocacy Day!
PLEASE SHARE YOUR STORY: Please consider taking a moment to write a few paragraphs about how Lou Gehrig's disease has affected your life or the life of someone you love. You can send to us via facebook or email. Please include the name, city and a photo if available. These will help us convey our urgent need for a cure when in Washington DC for Advocacy Day! Help us put a face to ALS so our legislators can see the need for research and a cure!
In February of 2003 my
mother began having
problems with balance and
moving her legs. She could
not walk down a wheel-
chair ramp. The doctors
began doing tests. As they
did more and more tests
(too numerous to recount)
they were painstakingly
working their way toward
a diagnosis. A diagnosis
that can be made only by
ruling out every other pos-
sible diagnosis. She was
diagnosed with ALS in the
spring of 2003 which was
then confirmed after she
spent a week at the Mayo
Clinic undergoing the same
tests and more in August
of that year. Our family
was introduced to a new
world of possibilities for
the future.
Where we had spent the
previous fall looking at 5th
wheel campers and talking
about retirement plans
with my parents, now we
were trying to figure out
where to put a wheelchair
ramp and how to get in
and out of the brand new
Ford F-150 they had just
bought to pull that 5th
wheel in a few years. Deci-
sions for the future be-
came a frequent topic of
conversations. Decisions
like never being placed on
a ventilator or not per-
forming CPR if a life
threatening emergency
happened. My wife and I
also had to make some
decisions, what kind of
impact could we have on
the lives of my parents
over the next few years.
My wife had just started
nursing school, we had
been married for a year
and a half and my son was
turning 5 years old, start-
ing school himself. We
chose to do whatever it
took to be a part of their
lives as often as possible
and support them with any
decisions that had to be
made. We also made a
very important decision
that has shaped the rest of
our lives as we learned the
life expectancy for some-
one with ALS is 2-5 years,
time for more children so
they can have some time
with their Nana. We did
not have our other chil-
dren because my mom
was sick, we had them so
she could be as much a
part of their lives as possi-
ble. We hoped and prayed
that time would be long
and they would have
memories of her but we
also knew that it might be
short.
We never found the magic
wand that made the ex-
perience easier, it's not
there. We struggled to re-
spect the wishes of my
mom and that was to re-
main at home. My dad
continued to work full
time. After a hospitaliza-
tion for blood clots in the
lungs that lasted from be-
fore Thanksgiving until the
New Year, my mom was
not the same. She could
no longer pull herself to a
standing position and walk
to the bathroom. My dad
would come home on
breaks and at lunch to
help her to the bathroom.
We hired a caregiver for
over a year to help allevi-
ate that strain during the
day. Where one strain was
alleviated, another was
born. A caregiver was a
blessing, paying her was a
curse. Of course we did
not have handicapped ac-
cessible anything in the
home, so remodeling a
porch into a bathroom was
the next step. Then when
she could no longer sleep
in her bed, a hospital bed
was moved into the living
room. My dad slept on a
bed pushed right up to the
side of that bed and they
always made sure to share
the covers. A ramp into
the yard made going out-
side easy during those
beautiful summer months.
We were lucky to have
assistance from the ALS
Association who seemed to
know so much more about
ALS than we did...They
gave us a mechanical lift,
helped with appropriate
wheelchairs and so much
more support. We still
needed to care for my
mom at home though, that
is where she wanted to
stay.
Over the first year of
Josh's life, my mom con-
tinued to live with the dis-
ease and we spent more
time than I can remember
on that route from Kala-
mazoo to Jenison, Josh
probably could have driven
it.
Featured Family: The Noeskes
Page 4 Pati
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“Our family was
introduced to a
new world of
possibilities for the
future.”
As she continued to fight
and my wife moved
through her second year of
nursing school, we decided
that it was time for that
third child. We wanted to
give her that dark-haired
granddaughter she had
always wanted. We wanted
her to be able to hold an-
other grandbaby and have
pictures of her with that
one too if possible. We
also wanted to be able to
share her name with that
child. She would not make
it to that third grandchild's
birth but at least she was
able to laugh with us that
God had it in for my wife
and it would be another
boy coming along. She
named that angel before
he was born and his mem-
ory of his Nana is that she
named him and their ini-
tials are the same.
As the summer of 2005
approached, my mom was
no longer able to talk with
us, but it was amazing
how she could still tell us
exactly what she needed
with her eyes or her lips.
We would spend 30-40
minutes at night position-
ing her hands, her legs,
her neck...everything.
There were pillows specifi-
cally for her right arm and
ones specifically for her
left. There were blankets
for behind her head and a
hand towel for just a little
extra height behind her
neck. She went to bed af-
ter 9pm on Tuesdays but
had to be in bed and com-
fortable by 8pm on
Wednesdays because we
could not miss American
Idol. Our family has a spe-
cial place in our hearts for
Carrie Underwood from
that year, we have never
been able to watch it since
then.
My mom passed away
from ALS at home with my
dad at her side on June
7th, 2005. My son had his
first birthday 3 days ear-
lier. Could we have done
things better or different
during that time? Maybe,
but we had no idea what
we were supposed to do,
we just did what we could
do. Do we wish everyday
that my mom was still
here to enjoy these won-
derful children and be their
Nana? Absolutely. As much
as my wife and I have
tried to figure out a way to
change the past, we can-
not. So, we accept our re-
ality of having lost a very
special and strong woman
to a disease way too early
in life.
Now we hope to help oth-
ers affected by ALS by pro-
moting awareness of the
disease and pushing for
legislation to allow the ex-
tent of research necessary
not only to cure this dis-
ease but to understand it.
When people hear the
name ALS, we want them
to have hope for the future
by being able to offer them
a cure. Right now ALS can
be pretty hopeless for peo-
ple. I still cringe when I
hear of more people af-
fected because I know the
suffering, fear and hope-
lessness. I also know that
with a continued rise in
awareness and a push for
support that we can bring
hope to so many, it has
happened with other dis-
eases thought impossible
and it will happen with
ALS.
We had been through a
tremendous loss and even
two and a half years to
prepare for it is not
enough. The most impor-
tant part of surviving the
loss of my mom to ALS is
the strength of my family
throughout. Family mem-
bers have to remain to-
gether and strong, they
need one another during
that time. The burden of
caring for someone with
ALS is too great for any
one person, allow family
members and friends in to
help. Family members and
friends, never hesitate to
insist on helping and tak-
ing away some of the re-
sponsibility of the care. My
dad would never have
stopped caring for my
mom, but by insisting on
being there the rest of the
family was able to spend
time with that very special
woman as often as possi-
ble.
Todd Noeske presently serves
on the Board of Directors for
the ALS Association, Michigan
Chapter and promotes aware-
ness of ALS as Public Policy
Chair. We are so thankful for
his efforts and for Todd &
Keri’s willingness to share
their family’s story.
Continued...
Page 5
“When people
hear the name
ALS, we want
them to have
hope for the
future by being
able to offer
them a cure.”
As ALS progresses, it often becomes difficult to leave the house for outings like support groups. Frequently, the physical
demands of traveling to a support group location can be exhausting and prevent families from participating. Getting the
support you need and feeling a sense of community is important though.
The ALS Association, Michigan Chapter offers an alternative to the traditional physical support group in our State-wide Call
-In Support Group sessions. Led by our Patient Services Coordinators, Denise & Kristen, these sessions allow families the
options of attending a support group even when travel is impossible. All are welcome at these groups and no pre-
registration is required. You can call in to talk with other patients and caregivers, ask questions of other families and our
Patient Services Staff and share your experience. The Call-In Support Groups, offered twice a month, are a great opportu-
nity to share your feelings in a safe environment, exchange tips and advice and discuss the latest news in the ALS commu-
nity. Please consider joining us for one of the May sessions. They are held on the second Thursday of each month from 2-
3pm and the third Tuesday from 6:30 to 7:30pm.
Dial our toll free conference number at 1-877–643-6951 and enter passcode 31723015# to join. All are welcome.
This spring the ALS Association, Michigan Chapter will kick off a series of educational seminars, offering a different
session each month throughout the state. These events will be designed to address a specific topic related to life
with ALS and offer information and an opportunity to meet with speakers and ask questions. These sessions will in-
clude a variety of knowledgeable speakers.
June 24th - Stem Cell Research (Pending Confirmation), Featuring Dr. Merritt K. Taylor, Assistant Professor
in Biomedical Sciences and Cell and Molecular Biology at Grand Valley State University. 6:30 - 8:00pm,
Mary Free Bed Rehabilitation Hospital
July 15th - Hospice Services in ALS, Featuring In-House Hospice, 6:30 - 8:00pm,
Brighton Lion’s Club
August 4th - Respiratory Issues, Featuring Mark Orlikowski, LRT Branch Manager Airway Hospital, 6:30-8:00pm, Munson Community Health Center Meeting Room
All sessions are free to attend. Please contact Denise or Kristen to RSVP.
Communication Technology
Seminars in Grand Rapids
and Royal Oak . The seminar
will feature Kelly Petri & Joel
Alchin from Dynavox. They
will be demonstrating the
latest in augmentative com-
munication technology during
her presentation. The Royal
Oak presentation will also
feature Artie Knack, SLP,
from Henry Ford. Please con-
sider joining us for these in-
formational sessions. There is
no charge to attend and all
are welcome. Please let Kris-
ten (248-680-6540, kris-
ten@alsa-michigan.org) know
if you are able to join us. In
Royal Oak on May 20th, the
session will be held at the
Public Library and the Grand
Rapids Session, on May 19th,
will meet at the Mary Free
Bed Rehabilitation Hospital
Second Floor Conference
Room.
As ALS progresses, one of the
problems that patients and
families may encounter is the
ability to communicate easily
with one another. For some
patients, augmentative com-
munication technology can
help make this communica-
tion easier.
On May 19th & 20th, the ALS
Association, Michigan Chap-
ter will host Augmentative
Augmentative Communication Technology Seminars This Month
Educational Sessions Planned Throughout the Summer
Page 6 Pati
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“For some people
with ALS,
augmentative
communication
technology can
make
communication
easier”
Call-In Group Offers Support from a Distance
or diseases.
- The testimonials provided
all come from people who
supposedly used the treat-
ment and got results rather
than from research study
findings reported in a repu-
table medical journal.
- The treatment claims to
be able to cure an illness or
disease completely and
quickly.
- The website asks for fi-
nancial or medical insurance
information.
Some things to look for:
- The purpose of the web-
site should be clearly
The Internet can be a great
tool for patients and fami-
lies seeking information
about ALS and the changes
that it brings. However,
caution must be exercised
when reading information
on the Web. Information
generated in medical fo-
rums can be based on noth-
ing more than personal
opinion, or worse, created
just to sell a product. So
how do you tell the good
information from the bad?
Look for these warning
signs:
- The website makes huge
claims of success, such as
being able to cure illnesses
stated.
- The material presented
includes the author’s name
and credentials.
- The owner of the website/
organization associated with
it should be clearly identi-
fied and include contact
information.
- Beware of websites trying
to sell something.
Hopefully these tips will
help you in evaluating the
information you read on
line. For questions regard-
ing research or other infor-
mation you read online,
please call your Patient
Services Coordinator.
Page 7
Navigating the Web: What is Good Information?
Sun Mon Tue Wed Thu Fri Sat
1
2 3 4 5 6 7 8
9
Grand Rapids
Support Group
2-4pm
10
11 12
Kalamazoo Support
Group
7-8:30pm
13 Call In Support
Group 2-3pm
Troy Support Group
BBUMC 6:30-8pm
14 15
16 17
Bay City Support
Group 6:30-8pm
18
State-wide Call-In
Support Group
6:30-7:30pm
19 Augmentative
Communication
Seminar—Mary
Free Bed Clinic
6:30
20 Augmentative
Communication
Seminar—Royal Oak
Public Library 6:30
21 22
23 24 Ann Arbor and
Fenton Support
Groups 6:30—8pm
25 26 27 Gaylord Support
Group 2:30-4pm
Survivor’s Luncheon
11:30-1pm
28 29
30 31
May 2010
Don’t forget! The Troy Support Group will be meeting at it’s new location this month: The Big Beaver United
Methodist Church in their Community Center Library. This move will allow our growing group more room!
Make sure to carefully evaluate
medical information you find online.
Try websites like www.alsa-
michigan.org, which is the official
website of the ALS Association,
Michigan Chapter, for links to other
Mary Kleiss, mother of Re-gis Kleiss (26), cares for her son with ALS and has of-fered to answer some ques-tions and share her experi-ence.
What has helped you and your family get through the process of diagnosis and all of the changes that have come since?
One thing that has helped us has been the tremen-dous support from our fam-ily and friends. It seems that everyone wants to help us in one way or another. That is truly a Blessing. We have also gotten huge support from ALS of Mi and the ALS Association. They have been there to talk to and also have been very helpful in getting us things we need for Regis' use. Another thing that has helped us also has been going through the health problems with my Mom. It has helped by knowing the Medicare/Medicaid process and also helped in trying to be as prepared as possible before right we need things. For example, getting the van and fitting it with a lift before Regis needs it rather than waiting and then being forced into decision making in a hurry because we need something now. We have the van that need to be fit-ted with a lift, a boy scout wants to do a ramp on our house for an Eagle project and we have a friend who is a plumber who has said he will help with bathroom modifications. We try to think of getting things done before we need them done. Dr Lewis and his staff espe-cially Stacy at the Hiller Clinic at the DMC have been very helpful also with
learning about the disease and helping us get braces for Reg and helping us with any questions we have. Regis has also been doing OT at a RIM rehab facility and they have also been fantastic at helping us with anything we need for Regis.
How have you adapted to being a caregiver for your son?
I have been a caregiver for my Mom for the last 20 years so when Reg got sick we just kind of flowed into taking care of him also. It is really hard sometimes when we want to go somewhere and we need to be home at a certain time but Reg didn't ask for this disease and it's much harder I think on him than it is on us. He is the one really loosing his free-dom. Thankfully also things progress fairly slow so we were able to kind of ease into things with him and adjust to care giving for him.
What has been the greatest challenge to caregiving for Regis?
Actually I think for us the greatest challenge has been the balancing act be-tween care giving for Reg and for my 93 year old Mom. She has been in a nursing home now for a little over two years ever since she had a stroke in 2007. Prior to the nursing home she had been living here with us so we had been care giving long be-fore Reg got sick. I ended up putting my job on hold this year and thankfully I can do that without getting
fired. I work in the Royal Oak Schools as a substitute Para-pro working in the special ed classes. In a way care giving again! I put my job on hold this year be-cause between taking care of Reg and trying to main-tain the house I also go see my Mom almost every day and I am usually with her anywhere between 2 to 4 hours. I try to go at meal time because she is now in hospice and she is getting to the point of not wanting to eat anymore and some-times she will eat better for me. I also do her laundry rather than having the nurs-ing home do it. We have been very Blessed to have found a fantastic nursing home that takes very good care of my Mom. I still feel it is important to go everyday though just to make sure Mom is OK and to let her know we are still there for her and haven't just aban-doned her. I think one other challenge is not being able to go away for vacation with care giving for everyone. It's not that we can't go away it's that we can't afford to. We always camped be-cause we couldn't afford a motel room and camping is so much cheaper. There is no way Reg can camp any-more it would be way too hard and with Re and I not working we really cannot afford a motel room. We've just learned to adjust and do day trips instead. They aren't as good as actually getting away but again we are Blessed and at least we can get away for the day. There are many people who can't even do that so we are grateful for what we have and what we can do.
Featured Caregiver: Mary Kleiss
Page 8
The Kleiss Family: (from
left) Dennis, Mary,
Regis , Cathy and (front)
Elizabeth
Pati
ent
Serv
ices N
ew
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Volu
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, Is
sue 2
“We try to think of
getting things
done before we
need them done.”
Therapy Dog Brewster accom-
panies Mary to visits at nursing
homes.
What kind of advice can you offer to other caregivers who find themselves strug-gling?
I think keeping a sense of humor is very important. I know it's hard to find humor sometimes but I feel it is important in trying to keep your balance. A good belly laugh can really change the way you are feeling. Also trying to find something you really enjoy doing. My outlet is birding and gardening. If I get stressed out it's amaz-ing how just working in the garden for even 15 minutes can change the way I'm feeling. I love birding also and my hubby and I try to get out birding when we get the chance. The nice thing about birding is we can even do it at home in our back yard. We are a habitat thru the National Wildlife Association and I love sit-ting out on my deck watch-ing the birds that come to my feeders. The gardening and birding are nice be-cause it is a release for me and I don't even need to leave my house! If at all possible keep an open line of communication with a few really close friends. Some people sadly will not communicate with you be-cause I think some people can't accept the disease and what it is doing to the patient and they don't know what to say to the caregiver. Thankfully we have some really close friends so we can call on them is need be. Some are friends with our son Regis and others are Denny and my friends. Our daughter Cathy has also been very helpful with eve-
rything that is going on.
I always try to keep in mind also that things could al-ways be worse. I know that is hard to comprehend when you are faced with a horrible illness like this but for me I think about the par-ents who have lost their children suddenly to an ac-cident or something like that. I am Blessed because I still have my son to talk to and care for and possible see a cure for. Nothing is done and finished until the Creator says it's done. Who knows in his lifetime maybe there will be a break through cure. In the mean time I still have him with me unlike some parents whose children are no longer with them. We have to be thank-ful for all the things we have in life.
Any other thoughts?
If you are reading this and you are not care giving for someone please try to reach out to someone who is struggling as a caregiver. Offer to give a caregiver a break for an evening. It will give the caregiver a break and it will give the patient a new person to talk to. A true win-win situation! Chances are the caregiver and the patient will really appreciate someone caring enough for them to be will-ing to take their time to help. My sister, husband, son and daughter are the only ones who go to see my Mom in the nursing home. Everyone needs to know they are still thought about so even visiting a nursing home is a great thing to do. I know in Mom's nursing
home there are allot of folks ho never have visitors. If you have a dog consider getting a therapy dog certifi-cation on them so they can also make visits. We have two dogs and both are certi-fied therapy dogs. They visit my Mom now but when she passes I will continue taking the dogs in to see the folks there. They have turned into family for me and I plan on continuing visiting after my Mom passes. It brings joy into my life knowing I can bring joy into someone else's day. I find also for myself that I always take a book or my needlepoint with me to visit my Mom that way I don't feel like I'm just sitting there wasting time. When my Mom is sleeping which is most of the time I read. When she wakes up I put my book down and talk and the start reading again when she goes back to sleep. Again a win-win situation. I don't have the time to read while I am at home so going to see my Mom is also a welcome re-laxing time for me. I also always take a book or something else to do when we go to Dr's appointments etc with Reg. It's great for passing the time! The big-gest thing is please don't turn your backs to anyone with an illness. Even if they can't communicate like my Mom right now they need to know that you are there supporting them. Thanks so much for reading this and thanks for allowing me to share a little of our lives with you.
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“I am Blessed
because I still
have my son to
talk to and care for
and possibly see a
cure for. “
Regis’s Basset Hound pup, Riley,
also a Therapy Dog, brings
laughs to nursing home resi-
dents and to the Kleiss Family.
To relax, Mary gardens and enjoys
birding in her backyard, a National
Wildlife Association Habitat.
(Brewster peeking thru the fence)
ALS Association, Michigan Chapter
678 Front Street, Suite 159
Grand Rapids, MI 48504
675 E. Big Beaver, Suite 207
Troy, MI 48083
Phone: 1-800-387-7121 (Grand Rapids)
Phone: 1-866- 927-2873 (Troy)
E-mail: denise@alsa-michigan.org
kristen@alsa-michigan.org
The ALS Association, Michigan Chapter
www.alsa-michigan.org
Fig
hti
ng L
ou G
ehrig
's D
isease o
n E
very F
ront.
Our Mission
To lead the fight to cure and treat
ALS through global, cutting-edge re-
search and to empower people with
Lou Gehrig’s disease and their fami-
lies to live fuller lives by providing
them compassionate care and sup-
port.
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