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 • [email protected] • 616-459-1900
Joe Kulwicki • Detroit, Jackson, Virtual • [email protected] • 866-927-CURE
Marie Tominna • Detroit • [email protected] • 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
[email protected]. 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-
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