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

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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

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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

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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

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“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.