F igh t ing Lou Gehr ig ’ s Di sease i n Mi ch igan

Special points of interest:

Meet our new Intern, Marie

Tominna!

Research Updates

Tips for team-building!

Upcoming events!

Find a clinic near you

Inside this issue:

Respiratory Issues

Conference

2

Ask A Doc 3

Emergency Prepared-

ness and ALS

4

Chapter Calendar 5

Recommended Read-

ing

6

Advice from the

Trenches

7

Golf for ALS 8

Volume 1, Issue 5 August 2010

Walk to Defeat ALS Raises Funds for Patients Services, Research

The ALS Messenger

Detroit Walk to Defeat ALS Grand Rapids Walk to Defeat ALS

Saturday, September 25, 2010 Sunday, October 03, 2010

Detroit Riverfront Conservancy Ah-Nab-Awen Park

Traverse City Walk to Defeat ALS Jackson Walk to Defeat ALS

Saturday, September 11, 2010 Saturday, September 11, 2010

Civic Center Park Ella Sharp Park

Portage Walk to Defeat ALS Virtual Walk to Defeat ALS

Saturday, September 18, 2010 Anytime

Celery Flats Anywhere

Robbie Banfill • Grand Rapids, Portage, Traverse City, Virtual • rbanfill@alsa-michigan.org • 616-459-1900

Joe Kulwicki • Detroit, Jackson, Virtual • jkulwicki@alsa-michigan.org • 866-927-CURE

Marie Tominna • Detroit • DetroitWalk@alsa-michigan.org • 866-927-CURE

Patient Services brought to you by the Walk to Defeat ALS

The 2010 Walk to Defeat ALS season is about upon us and we need YOU to walk with us this year! The 2009 Michigan

Walks raised over $268,000 to benefit patients with ALS and their families RIGHT HERE in Michigan. This year, The ALS Association- Michigan Chapter will hold 5 regional Walks to help individuals and families impacted by

Lou Gehrig’s Disease in Michigan.

Visit www.WalkToDefeatALS.org to register your team TODAY!

The ALS Association’s Walk to Defeat ALS raises funds to support local patient services and programs, as well as global

research efforts.

The mission of The ALS Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to

empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and

support.

To fulfill this mission, The ALS Association conducts programs in five main areas: Advocacy, Community Services, Education

and Awareness, Patient Services and Research.

The 2010 Detroit Walk to Defeat ALS allows us to continue to provide local patient services- through the loan closet, sup-

port groups, educational seminars, community resources, and much more!!! Participating in this years walk allows us to con-

tinue to serve our patients in the State of Michigan.

Refreshments and entertainment will round out the festivities at all the walks, which are open to the public; everyone is

encouraged to participate.

If you have any questions regarding the Walk to Defeat ALS, please contact The ALS Association- Michigan Chapter Walk Team

Last year over 150 Walk to Defeat ALS™ teams participated across the State of Michigan. Please consider joining The ALS Association in 2010 as a walk team or as an individual walker.

The ALS Messenger Page 2

Meet Our Staff: Marie Tominna, Walk to Defeat ALS Intern

Respiratory Issues Conference, August 4th in Traverse City

sociation. I was not only

drawn to its mission, but I

wanted to be a part of an

organization that is com-

mitted and dedicated to

serving and helping oth-

ers. I feel that I have

found this with the ALS

Association and I am

proud to be part of the

effort towards curing Lou

Gehrig ’ s disease.

Marie Tominna recently

began working as an in-

tern in our Troy office.

She is instrumental in

helping our family teams

prepare for Walk day.

Here she shares her

thoughts on her new posi-

tion.

I recently began interning

with the ALS Association

and have already learned

so much about the history

of this organization and

its cause. I have gradu-

ated from the University

of Michigan with a B.S. in

Economics and minor in

Biochemistry. I am plan-

ning to pursue a career in

health care and medicine

and felt that I would gain

valuable experience

working for the ALS As-

Please join us for this free educational conference presented by Mark Orlikowski of Airway Oxygen and Daryle Sawyer of Philips Respironics. For those with ALS, respiratory issues are probably the most serious of medical complications. Mark and Daryle will be addressing this topic and some of the equipment that is currently available.

August 4, 2010, 6:30pm to 8:00pm at Munson Community

Medical Center, Classroom A & B, 550 Munson Ave,

Traverse City, MI 49684.

Space is still available. Please RSVP to Denise George as soon as possible if you are able to join us at 616-459-1900 or

denise@alsa-michigan.org. There is no cost to attend.

“There are times

when the emotional

or physical burden of

ALS can demand all

of a family’s focus,

and we understand. “

Walk When You are Ready, Seek Resources Now

you and your family would

like to find out more informa-

tion about the Walk to De-

feat ALS, we invite you to

call or email our offices. As

always, if there is anything

we can do assist you on your

journey with ALS, please

contact your Patient Services

Coordinator anytime!

This month you may notice a

lot of information about our

upcoming Walks to Defeat

ALS. While these are excit-

ing, wonderful days that can

bring families together for

the cause and inspire hope,

we understand that not eve-

ryone is ready to walk with

us this year. There are times

when the emotional or physi-

cal burden of ALS can de-

mand all of a family’s focus,

and we understand. We

want you to know that while

we hope you’ll walk with us,

participating in the Walk is

in no way required to re-

ceive assistance through our

Patient Services Program. If

Page 3 Volume 1, Issue 5

Ask the Doc

Q & A with Edward Kasarskis, M.D, Ph.D.

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multid-isciplinary Clinic in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in

Lexington KY.

Q: I hear about so many claims on the Internet for megavitamins, herbal remedies and supplements to slow ALS. They all look so promising. Do they

help?

Dr. Kasarskis: It’s not ridiculous to think that plants and natural products might have benefit in ALS. After all, many drugs used in medicine were originally de-rived from plants; For example, colchicine for gout comes from the autumn crocus (Colchicum autumnale, growing in my back yard), and digoxin comes from the foxglove plant (Digitalis lanata). But when we’re talking about using herbal reme-dies and supplements to slow the progression of ALS, we have to be careful. Vir-

tually none of these products has been tested in persons with ALS.

Here is what we do know:

Creatine has been tested in North American and Europe and no benefit was found in slowing the progression of ALS, although one study suggested it

might increase muscle strength temporarily.

Vitamin E, in very high doses, was studied in Europe, and showed a modest, but insignificant, benefit in slowing the progression of ALS. There may be, however, negative effects from such doses. An analysis of a wide range of Vitamin E treatment trials for a variety of conditions showed an increase in

the risk of bleeding and stroke, raising safety questions.

Co-enzyme Q10, at 2700 mg a day, was studied to see if it would slow ALS by 20% (using the ALS Functioning Rating Scale or ALSFRS). That high degree of impact was not found, but a smaller benefit may have gone undetected since the study was designed only to determine if there was a very large benefit. Importantly, no adverse consequences were discovered. Although

there may be some value in taking Co-enzyme Q10, it is expensive.

I know all of this is frustrating for ALS patients, their families, and their well-

intentioned friends who want to be pro-active in managing the disease. This is

very understandable. I just did a Google search on ―ALS‖ which returned 6.8

million hits! The only way we will make real progress in this disease is through

well-designed, controlled clinical trials. I strongly encourage your participation at

an ALS Center near you —for yourself and for the future.

(as printed in Patient Services, News You Can Use, July 2010)

“I know all of

this is

frustrating for

ALS patients,

their families,

and their well-

intentioned

friends who

want to be pro-

active in

managing the

disease.”

Dr. Edward Kasarskis

The ALS Messenger Page 4

Emergency Preparedness and ALS If you are unable to walk, or

may be upstairs at the time of an emergency, consider getting an Evacu-Aid stretcher. It’s the size of a small backpack, made of tarp-like material and be-comes a portable stretcher, with the help of one or two adults. For more information, visit: http://www.safetykitstore.com/

stretcher.html

The most important aspect of emer-gency preparedness is to start system-atically thinking about what you would do in every conceivable emer-gency situation. While it’s natural to have an aversion to think through the problems that could occur, being pre-

pared will greatly reduce your poten-tial stress and the anxiety of those who

love and care for you.

If you have any questions, please

email Alisa Brownlee at abrown-

lee@alsa-national.org.

Ever wonder what people with ALS and their families should do to pre-pare for an emergency? We asked Alisa Brownlee, ATP, assistive technology consultant to the national office of The ALS Association for advice about what people should do to help ensure they’re

ready. Here are her tips:

Get prepared. Many people think an emergency won’t happen to them, but it can. It can be any-thing from a fire, tornado, storm, power outage or earth-quake to a gas leak next door or an airplane crash. The first step is to believe that something that requires an immediate re-sponse or/and evacuation

could really happen to YOU.

Create a “quick getaway” pack that includes everything you would need if you had to leave your house for two days. Remember your medica-tions (and a list of all your medications, in case you need refills), cans for tube feedings if necessary, granola bars for your caretaker, a spare pair of glasses or contact lenses. You might include a quick summary about ―What is ALS‖ in case emergency response people don’t understand the disease and what you’re dealing with. Be sure to include emergency contact information. a blank

check and some cash.

Go through a list of “what if’s?” that apply to your situation. If you use BiPap, do you have a battery? What if you needed to get out and were alone? What if you had to go to a shelter due to a flood? Talking with your family, caregiver and friends, think through the possi-

bilities.

Consider getting a lifeline or emer-gency call system that you can easily activate. This can be use-ful if you have a medical prob-lem, but it can also be valuable if there is some other kind of emer-gency, or even a potential break-in to your home. You can also get a dedicated phone that will call particular numbers – neighbors, friends, family – in the order you choose, in case of emergency, and those phones do not have a monthly fee as do

most lifeline systems.

Let you local fire department and ambulance service know that you are a person with ALS with particular physical limitations, so they know if they get a call to your house how best to manage whatever issues may arise. Make sure they know if you have any speaking difficulties, so the com-puter system will tell a dispatcher that they may have trouble un-derstanding the caller. Other-wise, the dispatcher might think

it’s a crank call.

If you rely on electricity for breath-ing support or to charge equip-ment you need, let the electric company know. They can often put you at the front of the line to get electricity as they resolve a power outage. You may also want to get a marine generator (which can be used in cars and is portable) or a larger generator

for your home or apartment.

Be sure you have provisions of whatever you might need for a

few days at home.

Ask you local fire department to do a walk through of your home to identify any issues and give you

advice how to prepare.

Be sure to talk with your doctor about the equipment you are using and how you can prepare for an

emergency.

Inverters are available for many respiratory devices that allow you to power your device through your car in case of an emergency. Just re-

member to keep a full tank of gas!

The ALS Messenger Page 5

Call-in Support Groups Offer Options 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 Coordina-

tors, 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 re-

quired. 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 opportunity to share your feelings in a safe environment, exchange

tips and advice and discuss the latest news in the ALS community. Please consider joining us for

one of the August 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.

Check out our website at www.alsa-

michigan.org to get the call in information!

August Chapter Calendar

The ALS Messenger Page 6

Recommended Reading: Ambushed by Grace: Help & Hope on the Caregiving Journey

humor to handle the delicacy

that surrounds topics that

come with caregiving for a

loved one as they age. De-

signed to serve as a compan-

ion to the caregiver, this book

comes highly recommended

by caregivers and healthcare

professionals alike.

Ambushed by Grace: Help

and Hope on the Caregiving

Journey is presently available

at Amazon.com for $9.98.

Check a book store near year

for availability.

Caring for a loved one is

tremendous job that alters

not only a relationship, but a

life. Caregivers experience

their loved one’s illnesses in

a way that only a caregiver

can understand. In her touch-

ing book, Ambushed by

Grace: Help and Hope on the

Caregiving Journey Shelly

Beach offers insight and

advice that can only come

from an experienced care-

giver.

Ambushed by Grace: Help &

Hope on the Caregiving Jour-

ney is full of practical advice

for caregivers, spiritual in-

sight, and commentary by

experts in the fields of geri-

atrics and family counseling.

Shelly offers her own ex-

perience and knowledge,

delivering her message in a

knowing and understanding

way.

Ambushed by Grace dis-

cusses the spiritual compo-

nent of caregiving, and has

been hailed as a must-read

for caregivers seeking a

Christian perspective to their

experience. Beach also aptly

employs her keen sense of

“The ALS Association

provided funding for

the development of

ISIS-SOD1RX.”

New Drug Trial for SOD1 type ALS

ISISSOD1RX in patients

with familial ALS that is

caused by mutations within

the SOD1 gene.

The study consists of four

cohorts with eight patients

each. In this study, ISIS-

SOD1RX will be adminis-

tered intrathecally (in the

spinal canal) using an ex-

ternal pump to deliver the

drug directly into the spinal

fluid during a single, 12-

hour infusion. The study

will be conducted at multi-

ple centers within the

United States.

This story was originally

published in Vision, The

ALS Association’s national

news publication.

In March, Isis Pharma-

ceuticals, Inc., initiated a

Phase 1 study of ISIS-

SOD1RX in patients with an

inherited, aggressive form

of Lou Gehrig’s Disease.

ISIS-SOD1RX is an an-

tisense drug designed to

inhibit the production of

SOD1. Antisense tech-

niques are used to deacti-

vate disease-causing or

undesirable genes so they

cannot produce harmful or

unwanted proteins.

The ALS Association pro-

vided funding for the devel-

opment of ISIS-SOD1RX.

“This therapy will be the

first ALS treatment that is

specifically aimed at the

target, SOD1, known to

cause ALS. The develop-

ment of new treatments for

ALS is an extremely chal-

lenging and costly process.

The ALS Association has

been pleased to co-fund

this study and partner with

Isis on this extremely prom-

ising treatment approach.

It is only through the sup-

port of our generous do-

nors that this type of ad-

vancement is made possi-

ble,” commented Lucie

Bruijn, Ph.D., Chief Scien-

tist, The ALS Association.

The study is a placebo-

controlled, dose-escalation

study designed to assess

the safety, tolerability and

pharmacokinetic profile of

The ALS Messenger Page 7

Michigan Offers Extraordinary ALS Care

The following clinic is also

recognized by The ALS Asso-

ciation:

The MSU at Mary Free Bed Rehabilitation Hospital 360 Lafayette Suite 308 Grand Rapids, MI 49503

616-493-9727

ALS Patients living in Michigan have the ability to choose between sev-eral excellent ALS cen-ters to visit for their multi-disciplinary clinical care. With two certified centers of excellence and another clinic going through the process, there are many venues for treatment in Michigan. For more infor-mation on the clinic near-est to you, please contact your Patient Services Co-ordinator .

Michigan is home to the following certified centers:

Henry J. Hoenselaar Clinic Henry Ford Hospital Neurology K-11 2799 West Grand Blvd Detroit, MI 48202 313-916-2835 The University of Michigan Health System 1914/0316 Taubman Center

1500 E. Medical Center Dr Ann Arbor, MI 48109 734-936-9020

“Taking a shower is

one of those things

we frequently take

for granted until we

are faced with the

prospect of doing

without it.”

Advice from the Trenches

must. Since you can no longer move about in the shower, the water must move to you. It can provide a comforting constant stream or target special areas such as your hair or your bottom. Showering with a tracheot-omy and ventilator isn’t much different. The ventilator stays outside the shower curtain and since the circuit (tube) is

a closed system, water on it isn’t harmful. For added pro-tection around the tracheot-omy, I use a plastic garbage bag folded in a four-inch strip with a small hole cut out for the tracheotomy, then tied around my neck. I, too, have always enjoyed

long hot showers. I still do.

Advice from the Trenches is published monthly by The ALS Association as part of their national Patient Services

Newsletter.

Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She’s the au-thor of ―The Butcher’s Daughter: The Story of an Army Nurse with ALS,‖ in which she describes her journey openly and honestly. Al-though she is completely para-lyzed and uses a ventilator, she lives an active life as a writer, nursing leader and mother of a

teenage son.

Q: I have always enjoyed long hot showers with scented soaps. Will I have to give up my showers when ALS advances? What if I eventu-ally need a tracheotomy and ven-tilator? A: Taking a shower is one of those things we frequently take for granted until we are faced with the prospect of doing without it. Taking a shower is absolutely pos-sible through all stages of paraly-sis including when using a ventila-tor. But it requires anticipating your needs, planning ahead then making the necessary changes. Once everything is in place and

the barriers addressed, showering can easily remain part of your routine. Here are some tips to make that

happen.

If you have a bathtub shower, there is a shower chair available with a sliding seat that moves you from outside the bathtub to inside on its metal frame. This elimi-

nates the treachery of mov-

ing into a slippery bathtub.

If you have a shower stall you may want to consider converting it to a roll-in shower. This is the most con-venient and comfortable option if you have a choice. Next, you will need a shower chair. Since you will be in the market already for a toilet chair that fits over your ex-isting toilet, I suggest getting one that also serves as a shower chair. Other impor-tant features are a high back and sturdy arm sup-ports. A hand-held showerhead is a

ALS Association Certified CentersSM

are medical facilities that have been certified by The Association as distin-guished regional institutions recognized as the best in the field with regard to knowledge of and experience with ALS

The ALS Messenger Page 8

I’m a REGISTERED Walker , Now What???

Personalize your personal page at www.WalkToDefeatALS.org.

Share your story, add a photo– let people know why you are walk-

ing or who you are walking for. Check out the video on the walk

site under “Walker Tools” to learn how to customize your page.

Research has shown walkers who customize their walk page can

raise upwards of 40% more dollars for the cause!!!

1

Post the following on your favorite social media site-

“In September, I am walking to Defeat ALS. Please join my fight

against Lou Gehrig’s Disease by donating to my walk. Please visit my

walk page at www.WalkToDefeatALS.org today” 2

Letter Writing Campaign

Use your personal walk page to send emails to your friends and families

asking them to get involved with this years walk by joining your team,

donating to the cause, and helping spread the word. The walk page has

email templates for your to customize to your liking. Don’t forget about

using snail mail to let people know about this years walk.

3

Give us a call to introduce your self and let us

know how we can help you.

Grand Rapids, Portage, Traverse City 616-459-1900 Detroit, Jackson, Virtual 866-927-CURE

4

Walking to Defeat ALS

Tips for Caregivers

Ask for Help Caregivers may not ask for the help they need to provide care for their loved one and to take care of

themselves. Have a "wish list" available when people ask what they can do to help you. Most people want to help, but do

not know what to do. Accept help when it is offered. Recognize the limits of your own endurance and strength and help

your loved one accept care from others. A good resource for building a circle of help and care is http://

www.sharethecare.org/.

Be Aware of Depression Depression can strike anyone and caregivers are especially vulnerable - it is the most

common healthcare condition reported by family caregivers. Be aware of the early signs of depression and see your

healthcare professional if you think you are becoming depressed. You do not have to live with depression.

Value Yourself Caregivers do amazing work in caring for their loved ones. Recognize the important and good job

you are doing and realize how valuable you are. Caregiving is a never-ending job and perfection is an unrealistic goal.

Do not allow the normal feelings of guilt and anger keep you from seeing the value of your daily caregiving.

The ALS Messenger Page 9

Golf for a Cure!

Save the Date!

New This Year!!

Join us on August 15th for the Party on the Green featuring a live concert by Brian VanderArk of Verve Pipe.

Longest Drive and Beat Dan Pohl Contests. Food and Drinks available.

Buy your ticket online now and pay only $20. $30 at the door. Space is limited.

It is just around the corner, August 16th

Join us for a great day of golf at Thousand Oaks Golf Club followed by a Dinner Gala and Auction in the beautiful Grand Oaks .

If you don't golf you can still join us for the Gala Dinner and Auction.

Enjoy a live band, celebrity auctioneer Tony Gates and

special guest speaker Dr. Ed Dobson.

Registration begins at 11:00 am for golfers with a clinic hosted by Dan Pohl at 12:00 and shotgun start at 1:00 pm. The cocktail hour begins at 5:45 pm to enjoy only the Gala Dinner and Auction portion of the day.

Check our website for more details. alsa-michigan.org

Create Awareness with an ALS Wristband!

675 E. Big Beaver, Suite 207 678 Front Street, Suite 159

Troy MI, 48083 Grand Rapids, MI 49504

The ALS As soc ia t io n , M i ch igan Cha pte r

People with ALS and their families come first in everything we do. Our vision is a world without ALS!

FIGHTING LOU GEHRIG’S DISEASE

Fighting Lou Gehrig’s Disease red wristbands are

available through our offices. These red silicone bands

make a unique statement and create awareness. They

are available at a recommended donation of $2 per

band. Please call your local office for more informa-

tion on getting your wristband!

Troy—248-680-6540

Grand Rapids—616-459-1900

Phone: 248-680-6540 616-459-1900

Fax: 248-680-6543 616-459-4522

Email: kristen@alsa-michigan.org denise@alsa-michigan.org