and let them know. We will

be happy to include

whatever information will

be most helpful! Check you

email every month for the

latest edition and most

current information!

Kristen Munyan, RN

248-680-6540 kristen@alsa

-michigan.org

Denise George, RN

616-459-1900

denise@alsa-michigan.org

We welcome your feedback

and hope you will take the

time to tell us what you

think of the new

newsletter!

Beginning this month, the

ALS Association, Michigan

Chapter will be sending out

an electronic newsletter for

PALS and their families with

a variety of features and

updates. Written by your

Patient Services

Coordinators, Denise &

Kristen, we hope that this

newsletter will be a source

of helpful resources and

information for you and

your family. Inside you’ll

find a monthly calendar of

support groups and other

events, lists of new

resources we’ve learned

about, updates on research

information and other

helpful material.

We’ll also include special

interest pieces, including a

piece written by a featured

family each month. Special

discussion pieces will also

be a monthly feature that

will deal with topics like

coping with change,

mobility, exercise,

nutrition, stress, and other

topics you may have

questions about.

Hoping to see something

in particular in the coming

months? Please call or

email Denise or Kristen

Michigan Chapter Newsletter Launched!

Research Update & 25th Anniversary Celebration

Last month the ALS

Association, Michigan Chapter

had the pleasure of celebrating

25 years of serving PALS and

their families. We honored the

occasion with a Celebration and

Research Update held on

February 2nd at the Southfield

Public Library and on February

3rd in Grand Rapids at Cascade

Hills Country Club. With over

300 RSVPs, it was a great

evening and we learned much

from our wonderful speakers,

including: Dr. Kristen Gruiss of

University of Michigan, Dr. Ed

Dobson, Sheri Mark, President

of Michigan Citizens for Stem

Cell Research and Cures, Dr.

Deborah F. Gelinas, of Mary

Free Bed, Merritt K. Taylor,

PhD, Grand Valley State

University. The speakers dealt

with topics such as stem cell

research, drug trials in progress

and other ongoing research

being done to develop

treatments for ALS.

Chapter awards were given

out, with Bill Emerson, CEO

of Quicken Loans, being

awarded the top Iron Horse

Award, to recognize his

outstanding commitment to

raising funds to help make a

difference for all those with

ALS. Our speakers were kind

enough to open the floor to

questions after the program

as well. Thank you to all who

braved the weather to

celebrate with us!

If you were unable to

make it to the research

update by are interested in

knowing what information

was shared, please email

Kristen (kristen@alsa-

michigan.org or Denise

(denise@alsa-michigan.org)

for a summary of the

evening’s outstanding

presentation’s.

Welcome to our new E-newsletter!

Find out the latest news in research

Keep up on Chapter activity

Mark you calendar for upcoming events

Read about one caregiver’s experience

with ALS

Patient Services News

Spring is in the air! Come join us for

upcoming events of drop in for a

support group meeting!

ALS Association, Michigan Chapter

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Inside this issue:

Share your Story 2

Looking for Support? 3

Troy SG Changes Location 4

Calendar 4

Core Updates 5

Featured Family 6

Strategies for Fatigue 7

The Michigan Chapter

On page 6 of this month’s newsletter you can read about the

Maldonados, an exceptional family who has been kind enough to share

their experiences with ALS with us. Many PALS and their families find

the experience of sharing their story very helpful and many others have

asked to be able to talk to or read about the experiences of others in

similar situations. If you would like to share your story with others who

are dealing with the effects of ALS we would love to hear from you!

Watch our website—soon you will be able to submit your story and

photos online at www.alsa-michigan.org.

Please contact Denise or Kristen to talk or email them at denise@alsa-

michigan.org and kristen@alsa-michigan.org.

Denise George, Patient

Services Coordinator, has

been with the ALS

Association, Michigan

Chapter since October

2006. Denise is a registered

nurse and worked many

years in management in

several Intensive Care Units

in both Michigan and

Tennessee. She also enjoyed

a very successful career in

medical sales as a top

performer for such

Advocacy Day. While there,

attendees will have the

opportunity to receive updates on

the latest clinical trials, legislation

and political happenings that

affect the ALS community. At the

end of their stay in the capital,

attendees will have the chance to

meet with members of Congress

to actively advocate for ALS

patients and families. As part of

their activities there, attendees will

participate in a Candlelight Vigil

for those who have lost their

battles with ALS. All are welcome

to join us for this exciting trip.

The deadline for registration is

April 9th. For more information

see: http://ww.alsa.org/files/pdf/

advocacy/

2010_ADV_Brochure.pdf or

email Todd Noeske. .

On May 9th, Stacey Orsted,

Executive Director, Denise

George and Kristen Munyan

(Patient Services Coordinators),

will pack their bags for

Washington DC. They will join

Todd Noeske, the Chapter’s

Public Policy Chair who has

helped to organize this trip,

(advocacay@alsa-michigan.org)

and thousands of other patients,

families, and ALS Association

members for National ALS

ALSA Staff are headed to Washington!

Looking for Families who would like to share their story!

Meet Our Staff: Denise George, RN: Patient Services Coordinator

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Attendees will

have the chance to

meet with

members of

Congress to

actively advocate

for ALS patients

and families

prestigious companies as Hill-

Rom and Becton Dickinson,

recognized by every industry

standard, as the best in each of

their respective categories.

Denise displays great passion

when working with the

multidisciplinary team weekly at

the MDA/ALS Center at Mary

Free Bed Rehabilitation

Hospital. The team is inspired

by the patients and committed

to doing all they can to make

their lives better and she is

Denise George, RN

Patient Services Coordinator

committed to helping her PALS

and family members by

providing resources and

assisting with the management

of the disease to ensure living

with dignity, and the highest

possible quality of daily life.

Denise enjoys golf, cooking,

gardening, going to the beach,

travel and antiquing. She’s

looking forward to her son

Cameron graduating this year

and helping him transition to

college life.

www.alsa-michigan.org - take a look at our website for helpful information for

patients and families, see our upcoming events and contact our staff.

www.alsa-org - Our national website can be a great source of information on the latest

happenings in ALS research and advocacy.

www.patientslikeme.com - A free social networking site where you can meet and chat

with other patients with similar experiences.

www.lotsahelpinghands.com - A web-based community that can help families organize

friends and extended family to help.

www.carepages.com - A free tool to use to keep in touch with family and friends and to

update them on how you’re doing and how they can help.

For questions regarding specific information or referrals for services or resources in your

area, contact Denise or Kristen.

makes me feel a little less

helpless” she says. Kristen is a

Registered Nurse and is

presently a student at Oakland

University in the Masters of

Nursing Education program.

“Part of why I love working

with ALSA is the dedication to

research. This is something so

important to me in my graduate

work”. She grew up in the

Kristen is the newest member

of The ALS Association,

Michigan Chapter Team. She

joined us in January of this year

after working in an intensive

care unit. She comes to our

chapter with a personal

connection to ALS, having a

friend who is battling the

disease. “Being able to help

people and families with ALS

metro-Detroit area and lives

here with her husband Matt

and three dogs, Ruby, Shelby &

Radar. She and her husband

love the outdoors and going Up

North whenever they have the

chance. Kristen will be visiting

the Henry Ford and University

of Michigan Clinics. She looks

forward to getting to know you

all!

Patient Services staff or

excellent and experienced

volunteers, support groups

are open to everyone. We

understand that ALS can

make traveling to groups

difficult. If you are unable

to make it to the group in

your area, consider

participating in one of our

call-in support groups that

are held on the 2nd

Thursday of the month

from 2pm-3pm and the 3rd

Tuesday of the month from

6:30-7:30pm. All are

welcome. Find details on

our website, www.alsa-

michigan.org. If you have

an idea for a support group

topic or suggestion for a

new support group location

please contact Kristen or

Denise.

If you’re looking for an

opportunity to connect with

others going through the

experience of having ALS

or caring for someone with

ALS, perhaps one of our

many support groups could

be helpful for you. With

groups meeting throughout

the state, you can meet with

others with similar

experiences. Run by our

Useful Sites

Meet Our Staff, Kristen Munyan, RN : Patient Services Coordinator

Looking for Support?

Page 3

ALS can make

traveling to support

group locations

difficult. If you are

unable to join us at a

group in your area,

consider calling in to

one of our state-wide

phone-in groups!

Contact Kristen or Denise for

resources in your area!

Kristen Munyan, RN

Patient Services Coordinator

and the families we

serve! This change in

location will not affect

our meeting day or time.

We will continue to

meet on the second

Thursday of each month

from 6:30 to 8:00pm.

We will be able to meet

in the Big Beaver United

Methodist Church

Community Center in

the Library. The Big

Beaver United

Methodist Church

Beginning with our May

meeting (May 13, 2010)

the Troy Support Group

will be changing

locations - In the

interest of having a bit

more room to

accommodate our

growing group, we will

be moving to Big Beaver

United Methodist

Church. This wonderful

community has

graciously opened its

doors to our Chapter

community is located on

at 3753 John R Road in

Troy MI 48083. It is

located on John R Road

just south of Wattles on

the west side of the

street.

No registration is ever

required to attend

support groups. All

patients, Caregivers,

Friends, and Family

members who have

been affected by ALS

are always welcome.

Page 4

Troy Support Group Changing Locations - May 2010

Sun Mon Tue Wed Thu Fri Sat

1 2 3

4 5 6 7 8 Call In 2-3

Troy SG 6:30-8pm

9 Deadline to

register for

Advocacy Day

10

11

Grand Rapids

SG 2-4pm

12 13 14

Kalamazoo SG

7-8:30pm

15 16 17

18 19

Bay City SG 6:30

-8pm

20 Call-In 6:30-

7:30

21 22 Survivors Lunch

Gaylord SG 2:30-

4pm

23 24

25 26 Ann Arbor,

Flint SG 6:30-

8pm

27 28 29 30

April 2010

Big Beaver United Methodist Church

(Excerpt from ALSA

release) Isis

Pharmaceuticals, Inc has

initiated a Phase 1 study of

ISIS-SOD1 in patients with

an inherited form of Lou

Gehrig’s disease also known

as familial ALS. About 20

percent of all familial ALS

cases are caused by a mutant

form of superoxide

dismutase, or SOD1. The

ALS Association and the

MDA are providing funding

for the development of ISIS

-SOD1. ISIS-SOD1 is an

antisense drug that is

designed to inhibit the

production of SOD1.

Antisense techniques are

used to deactivate disease-

causing or undesirable genes

so that they cannot produce

harmful or unwanted

proteins.

This drug will be the first of

its kind to enter clinic trials

to treat a neurodegenerative

disease. It is delivered

directly to the nervous

system though a 12 hour

long spinal infusion. Studies

will be done in multiple

centers across the United

States.

To see the full article on

ISIS-SODI go to www.alsa-

michigan.org and look at

the spotlight section.

people with ALS to

communicate with their

loved ones. She will

demonstrate the latest

technology for augmentative

communication devices and

answer questions about the

devices. The seminar will last

Join us on Thursday, May

20th at the Royal Oak Public

Library for an educational

seminar on Augmentative

Communication Technology

featuring Kelly Petri of

Dynavox. Kelly will be

discussing devices to help

from 6:30 to 8:30pm with

time for questions. No

registration is required and

there is no cost to attend

this informational session,

but please RSVP to Kristen

to let us know how many

people will be coming.

This funding is the direct

result of the efforts of The

ALS Association and

advocates across the

country who last year

successful urged Congress

to increase funding for the

ALSRP. The ALS

Association is currently

working with Congress to

double funding for the

ALSRP to $15 million in

2011. Please go to

www.alsa.org and take a

look at our Advocacy page

for more updates and

information on how you

can contribute to The ALS

Association’s advocacy

efforts.

The Department of

Defense is expected to

announce that it will be

accepting applications for

research proposals to be

funded through the DOD’s

ALS Research Program

(ALSRP) in March. A total

of $7.5 million will be

available this year, which is

a 50% increase over 2009.

Advocacy Update: DOD Research Funding

Research Update: First ALS Patient Receive Antisense Treatment

Augmentative Communication Technology Seminar

Page 5

The Royal Oak Public Library

is located at 222 E. Eleven

Mile Road, Royal Oak, MI

48067

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The ALS

Association is

currently working

with Congress to

double funding to

$15million in

2011.

Finally I knew what I had but this doesn’t sound good. I was told it I had a slow progressing form of the disease. You ever feel good

and yet scared at the same time?

At that time I felt some disbelief, fear, anxiety, anger,

sadness, stress, etc. Later I thought, so these are the emotions of someone with a fatal disease and you really don’t understand until you’ve

been there. I read a lot of information regarding the disease. I coped thinking, ”Hey, I’m still in pretty good shape, I’m not going to let this change

me and burden my family. I have my faith, my family and

my friends.”

Five years later in life’s

journey, I’m using a cane and 4-wheeled walker to get around. I am laid off from my work and currently on temporary disability. I still drive but

getting in and out of the car is the difficult. I fatigue easily, experience nausea, soreness/cramping in my muscles, take several medications, can’t sleep

well, or sleep a lot. I have realized the change in my health and the probable decline I face which will or could become a burden to my

family. Some days, I’m tired of feeling bad. Yes, there have been changes. Thankfully I was

wrong about my thinking!

The Effect of Changes

I have ALS.

-What I did not realize is my wife has ALS. No, she doesn’t have the disease but she has me. If I’m struggling with my

health she feels even more helpless. She is with me everyday and needs support

as much as I do. We’re both committed to learning to adjust together. I have learned to

appreciate all she has always

done, even more. Really!

- My family and friends know this and want to help. I would refuse help still trying to do

what I felt able. My mistake! I need their help and they need me to let them. To have friends or family visit, call or send cards is so encouraging! At first I

thought it was “nice”(and it is). That said I don’t know of too many people who don’t have “busy” lives and yet, many have taken time to do these and other

things for me. I am so thankful

for them!

- Where would I be without all the healthcare professionals (at U of M) who are there to help

as only they can? They have become an important part of my life and I am thankful for them. The ALS Association. What a wonderful resource. The

Michigan Chapter in Troy has been a great support for my wife and I. Meeting and sharing with people who are going thru similar experiences is

encouraging for all.

- The Lord knows this. God has been and is my (and my wife) strength! The Lords’ Church (the people) have shown me how to

encourage and bless others by their wonderful example. I believe He has given me an opportunity to bless others. I have come to appreciate the

simple experiences of my life. I never thought I took for granted any one I hold dear. Wrong (again)! I have come to a greater appreciation of all my

family, friends, and others who face illness or injury. Instead of drowning in sorrow for myself, I

remember my family and friends have their own daily

struggles too.

I have a 3 year old granddaughter, Adreanna. She knows I’m not able to do what I have in the past- chase her in the yard, carry her when she is

tired, and take long walks. Yet, she still enjoys the things we can do together like read books, push her on a swing at the park, play games on the floor. If I get

up without my cane, she runs to get it for me. She offers to do more than she is physically able yet understands she has limitations too. Her focus is on

what I can do, not papa is sick. She does this with a wonderful smile and attitude. She is a wonderful example for me. She

is my Joy!

Admittedly, I do not understand all the difficulties more typical ALS patients and caregivers courageously face each day. I’m simply saying I feel able to

relate a little better with the emotions of any person who is struggling with an incurable fatal disease. I’m still learning from meeting others with severe

illness. I have sometimes thought of how close to death I have often been just driving a motor vehicle. God has given me time to bless and encourage others in

ways I am able, by listening,

sharing, and/or just being there.

In closing, I recently “dug up” a wedding anniversary card I received from my wife a couple

years ago. The cover read:

“Love is not counting the years, love is making the years

count”

I tried using the word “life” in

place of the word “love”. They

both sound good to me!

Featured Family: The Maldonados

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“Love is not counting the years,

love is making the years count”

I have been diagnosed with ALS. My name is Gil, I’m 54 years old and

married to my beautiful wife for 25 years. We have two sons, 24, and 22 years old. Our youngest son is married

and they have a daughter. I woke up yesterday morning/noon thinking what am I going to do today? Oh boy, my

legs are really hurting and feel like they are lead weights. Yep, got to get up to take my meds. I sure need them right now.

My wife knocks on the bedroom door, my mother is on the phone. She calls just about every day and I’m happy she

does.

Six or seven years ago I remember playing basketball with my sons. I was never that good at

this game but playing with/against my sons was always fun and I actually won a few games. I’m trying to play defense

one day, I’m moving my body in front of him only my legs aren’t moving- I fall. As the months past I began to notice several

stumbles and stiffness in my legs. After several doctors/tests, nothing definitive was found. I thought, I was just getting

older (yipes!). A few months later I fell again, this time down the stairs to the basement floor, thankfully with no major

injury. A couple neurologists and more tests later- I was told it

was ALS.

You ever feel good and yet scared

at the same time?

Michigan offers several excellent places to receive care for ALS. Listed below are the

locations and contact information for the ALS Certified Centers and ALS Clinics in the state

of Michigan.

4. Get a handicapped parking

sticker.

5. Try to establish a regular

sleeping pattern.

6. Avoid prolonged bathing in

warm water, as it may worsen

muscle fatigue. Be cautious of

extreme temperatures outdoors.

7. Good nutrition!

8. Avoid stress as much as

possible.

Think about these anti-fatigue

strategies to keep energy up:

1. Learn methods for making

every task easier & use devices

that can help.

2. Pace yourself! Move slowly

and easily. Rest often. Plan your

activities together and get

everything you need before you

start. Utilize possible shortcuts.

3. Alternate activities and rest.

9. Report changes or increased

weakness or fatigue to your

doctor.

10. Make you living

environment accessible for you

daily activities.

To learn more about anti-

fatigue strategies see: http://

www.alsa.org/files/cms/Resources/

YI_07_Minimizing%20Fatigue.pdf

solutions for dealing with

burnout are:

- Take care of yourself! Get

good nutrition, rest and

exercise and pay attention to

your body’s signals of stress.

- Practice stress-reducing

strategies. Try breathing

exercises, yoga, message or

meditation.

- Develop a strong support

system. Surround yourself

with family and friends, join a

support group or create one.

Utilize your employers

Employee Assistance

Program. Seek counseling if

you need more extensive

mental support.

- Create a fulfilling life by

acknowledging your priorities

and actively building your life

around them.

Read more about burnout

at :http://www.alsa.org/files/

cms/Resources/

FYI_CaregiverBurnout.pdf

Being a caregiver of someone

with ALS is a very important

role. It usually involves a

number of tasks that can be

very time consuming, and can

require a great deal of effort.

If we do not learn to recognize

that certain tasks and

expectations can take their toll

on us, regardless of what role

(s) we play in life, we may

find ourselves headed down

the path of burnout. Some

ALS Center and Clinics in Michigan

Minimizing Fatigue

Strategies for Dealing with Burnout

Page 7

Take care of

yourself! Get

good nutrition,

rest and exercise

and pay

attention to your

body’s signals of

stress!

Try to get into a regular sleep

pattern and make sure to

rest!

The MSU at Mary Free Bed

Rehabilitation Hospital

ALS Clinic

360 Lafayette, Suite 308

Grand Rapids, MI 45903

Medical Director: Dr. D. Gelinas

616-493-3727

The Harry J. Hoenselaar Clinic

Henry Ford Hospital

An ALS Assoc. Certified Center

2799 West Grand Blvd

Neurology K-11

Detroit MI, 48202

Medical Director: Dr. D.Newman

313-916-2835

University of Michigan Health Center

An ALS Assoc. Certified Center

1914/0316 Taubman Center

1500 East Medical Center Drive

Ann Arbor, MI 48109

Medical Director: Dr. Kirsten Gruis

734-936-9020

"I walk slowly, but I never walk backward." - Abraham Lincoln

ALS Association, Michigan Chapter

www.alsa-michigan.org

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The ALS Association Michigan Chapter:

678 Front Street, Suite 159

Grand Rapids, MI 45903

616-459-1900

675 E. Big Beaver, Suite 207

Troy, MI 48083

248-680-6540

Find us on Facebook! Look for Michigan

Chapter, then friend our staff!