Walk to Defeat ALS Brings Hope 8 days ago, almost 700 people gathered at the Detroit RiverWalk on the beautiful Detroit riverfront. As individuals, we got a step closer to finding a cure. Together, we made one giant leap to finding a cure. Thank you for the countless hours you have put in sending emails, making phone calls, and encouraging people to get involved. The dollars raised will allow us to continue fund global research, provide patient services throughout the State of Michigan, and raise awareness about the disease.
Fighting Lou Gehrig’s Disease in Michigan Inside this issue: Thank you to RiteAid! Caregivers and Employment Fall Traditions Thank you to Dyer-Ives! 2 3 Using Urgent Care Effec- tively 4 Chapter Calendar Volunteers Give Time, Build Ramps for PALS 5 Respiratory Conference Genome Research Update 6 Loan Closet Resources Advice from the Trenches 7 Walk Wrap Up Caregiver of the Year awarded to Michigan Man 8 9 Get your ALS Wristbands! 10 Volume 1, Issue 7 October 2010 The ALS Messenger Walk to Defeat ALS Brings Hope 8 days ago, almost 700 people gathered at the Detroit RiverWalk on the beautiful Detroit riverfront. As individuals, we got a step closer to finding a cure. Together, we made one giant leap to finding a cure. Thank you for the countless hours you have put in sending emails, making phone calls, and encouraging people to get involved. The dollars raised will allow us to continue fund global research, provide patient services throughout the State of Michigan, and raise awareness about the disease. We are also thankful for the exceptional leadership offered by Bill Emerson, CEO of Quicken Loans in Detroit, who took on a tremendous fundraising effort. By engaging his workforce and holding creative fundraisers like parking lot barbeques and Karaoke con- tests, Bill was a fantastic corporate chairman to our Detroit Walk. On walk day, you could see Bill proudly lead the Quicken Loans team, “Bill’s ALS Kickers” across the finish line. We are deeply grateful to Bill, Wendy, and the entire Quicken Loans family for their incredible dedication to championing the cause of PALS and their families in Michigan. Once again, thank you to all the families. You are the reason The ALS Association is here and why we are committed to stay and serve PALS and their families. Thank you. ―We are the luckiest organization on the face of this earth. We have the best families, volunteers, and sponsors. Together we are The ALS Association– Michi- gan Chapter. Everyone is part of our family.‖
Transcript
F igh t ing Lou Gehr ig ’ s Di sease i n Mi ch igan
Inside this issue:
Thank you to RiteAid!
Caregivers and Employment
Fall Traditions
Thank you to Dyer-Ives!
2
3
Using Urgent Care Effec-
tively
4
Chapter Calendar
Volunteers Give Time,
Build Ramps for PALS
5
Respiratory Conference
Genome Research Update
6
Loan Closet Resources
Advice from the Trenches
7
Walk Wrap Up
Caregiver of the Year
awarded to Michigan Man
8
9
Get your ALS Wristbands! 10
Volume 1, Issue 7 October 2010
The ALS Messenger
Walk to Defeat ALS Brings Hope
8 days ago, almost 700 people gathered at the Detroit RiverWalk on the beautiful Detroit
riverfront. As individuals, we got a step closer to finding a cure. Together, we made one
giant leap to finding a cure. Thank you for the countless hours you have put in sending
emails, making phone calls, and encouraging people to get involved. The dollars raised will
allow us to continue fund global research, provide patient services throughout the State of
Michigan, and raise awareness about the disease.
We are also thankful for the exceptional leadership offered by Bill Emerson, CEO of
Quicken Loans in Detroit, who took on a tremendous fundraising effort. By engaging his
workforce and holding creative fundraisers like parking lot barbeques and Karaoke con-
tests, Bill was a fantastic corporate chairman to our Detroit Walk. On walk day, you could
see Bill proudly lead the Quicken Loans team, “Bill’s ALS Kickers” across the finish line. We
are deeply grateful to Bill, Wendy, and the entire Quicken Loans family for their incredible
dedication to championing the cause of PALS and their families in Michigan.
Once again, thank you to all the families. You are the reason The ALS Association is
here and why we are committed to stay and serve PALS and their families. Thank you.
―We are the luckiest organization on the face of this earth. We have the best
families, volunteers, and sponsors. Together we are The ALS Association– Michi-
gan Chapter. Everyone is part of our family.‖
The ALS Messenger Page 2
Thank You to The Rite Aid Foundation!
How does Employment Affect Caregivers?
The ALS Association, Michigan Chapter was thrilled to learn that we have been
selected by The Rite Aid Foundation to re-ceive a $20,000 grant to help fund our Durable Medical Equipment Loan Closet Program! These funds will be used to ac-quire new equipment for PALS to borrow
and to repair and maintain our current inventory. The Dura-ble Medical Loan Closet helps PALS receive free equipment loans of items like wheelchairs, transfer boards, lift chairs, shower benches and even power wheelchairs and scooters. We extend our deepest gratitude to The Rite Aid Founda-tion for this incredible gift and admire their commitment to helping people with Lou Gehrig’s disease and their families
access the equipment they need.
How does employment affect caregivers? A study published in the May,
2010 issue of Health Management, ―Estimating the Impact of Caregiving and
Employment on Well-Being,‖ by Joseph Coughlin, PhD, takes a close look at
that question.
The research involved surveying 243,997 Americans and the effort showed
that caregivers typically have lower levels of well-being compared with non-
caregivers of the same employment status. Interestingly, employment is associ-
ated with greater well-being, even among caregivers. The researchers say the
findings show that there are benefits of employment, such as financial security
and social support that can ease the burden of the caregiving role. For more
information, visit http://tinyurl.com/2dup767.
Page 3 Volume 1, Issue 7
PALS & Families Share their Favorite Fall Traditions
“One of my favorite fall traditions is gathering small pumpkins, peeling them and blanching them. I then place them in the freezer. There is nothing that is better than a pumpkin pie or pumpkin roll made with one of the pumpkins
that came from your garden. Get the apple cider and jump in the car!! Look
for the changing of the leaves. Ahh, Fall. One of my favorites!!” - Donna Mund
“We all get together and take the kids trick and treating and of course a trip to the cider mill is expected. That leads up to Thanksgiving which is a big holiday for family. Eating and
football and Planes Trains and Automobiles are tradition.” - Suzanne Siples
Thank You to The Dyer-Ives Foundation!
The ALS Association, Michigan Chapter was thrilled to be invited to a board
meeting for The Dyer-Ives Foundation in Grand Rapids in mid-September. We
were even more thrilled to be notified later that day that we would be the recipi-
ents of a $6,100 grant for new technology. We hope to implement programs to
improve patient access to programs like support groups and consultations with out
Patient Services Coordinators with these funds. We’d like to extend a heartfelt
thank you to The Dyer-Ives Foundation for their generosity and for their commit-
ment to helping PALS and their families access supportive services. We look for-
ward to improving our virtual access program with their help!
Are you a veteran who has been diagnosed with ALS?
ALS is now classified as a service related condition by the Veteran’s Administration. Veterans with ALS
are eligible for special benefits. Contact Kristen or Denise today for more information!
The ALS Messenger Page 4
Using Urgent Care Effectively
Increasingly, in many communities, urgent care centers are popping up, providing opportunities for health problems that require attention after 5 pm or on weekends, but don’t seem like true medical emergen-cies. They’re also useful when it’s hard – or impossible – to get an appointment right away with a primary care physician or neurologist. For people with ALS, it’s important to know how to use these resources most effectively
and what information you need to bring with you.
Urgent Care facilities are designed to help fill the gap between primary care physicians and emer-gency rooms. They should not be used if there is any real question in your mind whether the situation is an emer-
gency. If you’re not sure, it is best to go straight to the emergency room for evaluation or call 911.
Most urgent care centers will provide treatment for eye and ear infections, colds and flu, minor burns,
cuts and scrapes, and minor sprains. They also provide x-rays, vaccinations, and other services.
It’s wise to scope out your community’s urgent care centers before you need one. You can ask your pri-mary care physician if there is a facility he or she would recommend. You can also visit them, or ask a friend or family member to do so, to find out whether the center seems to run efficiently, the names and credentials of the physicians and staff, what insurance coverage they accept, and what hours they are open. Visit the center’s website to learn more about them. Once you find a place that meets your needs, keep the facility’s phone num-
ber, address and hours handy.
One of the downsides of getting care from someone who doesn’t know you is that the physician and staff will be unfamiliar with the drugs and treatments you are taking. While that is true for all of us, it can pose particular challenges for the person with ALS. It’s a good idea to have a folder or even a large, zipped plastic bag – anything that’s easy to bring with you – that includes a brief medical history, the prescription drugs you are taking, a description of any respiratory assistance you use at night or during the day, and the names and phone numbers of key family or friends to contact if necessary. You should also include a brief summary of ALS, since some healthcare staff may not fully understand the disease and its impact. If you have difficulty communi-
cating, such information can be especially important.
It’s also smart to check with your insurance carrier to see if the urgent care center is part of your network
and what your co-pay responsibility would be, if any.
When an issue arises and you’re thinking of go-ing to an urgent care center, call them to get an esti-mated waiting time. Most urgent care centers treat pa-tients on a first-come, first-served basis. However, you may be able to schedule an appointment online, from home, or could, depending on your health issue, decide
to come later and avoid a long wait.
If you do visit an urgent care center, ask for any laboratory reports or other documentation from your visit, and make copies for your primary care physician, your neurologist and for you. Your physicians may find it useful to know more about your visit and have a record of it for your file. And you, too, will find that keeping documentation from encounters with the healthcare sys-
tem may prove valuable for future reference.
The ALS Messenger Page 5
Local Volunteer Group Builds Ramps for PALS
When Barb Rostine first found out about ALS, she was reading a book about a surgeon suffering from the disease. The book so
moved her that she began volunteering with the Florida Chapter of The ALS Association. When work brought her to Michigan,
she connected with our Chapter and has been an incredible volunteer ever since! Barb and her team of volunteers from Ken-
sington Church will be building two ramps for PALS this fall. The PALS and families will supply the lumber, and Barb and her
team take care of the rest.
With so few community resources available to help with needs like wheelchair ramp, we thank Barb for her extraordi-
nary efforts. We also thank the dedicated volunteers of Kensington Church for their willingness to help PALS in need. If you are
interested in having Barb and her team help your family build a wheelchair ramp, please contact Kristen at 248-680-6540.
Interested families must supply all lumber and building supplies for the project and ensure that they are in compliance with any
municipal codes that apply. Builds will take place primarily in Oakland and Macomb Counties. The volunteer groups is pres-
ently booked for fall builds. Builds will resume in the spring. To be placed on a waiting list, please contact Kristen.
Sun Mon Tue Wed Thu Fri Sat
1 2
3
Grand Rapids
Walk to Defeat
ALS
4 5 6 7 8 9
10 11 12 13
Kalamazoo Sup-
port Group 7:00-
8:30pm
14 State Wide Call-
In Support Group
2:00-3:00pm Troy
Support Group
6:30—8:00pm
15 16
17 18
Bay City Area
Support Group
6:30-8:00pm
19
State Wide Call
In Support Group
6:30-7:30pm
20 21 22 23
24 25 Ann Arbor
Support Group
Fenton Area Sup-
port Group 6:30-
8:00pm
26 27
Grand Rapids
Support Group at
MFB 6:00—
7:30pm
28 Survivor’s Lunch
11:30-1:00pm
Gaylord Support
Group 2:30-4:30pm
Respiratory Issues Con-
ference
29 30
October Chapter Calendar
The ALS Messenger Page 6
Respiratory Issues Conference: October 28, 2010
Respiratory Issues and Equipment
presented by Airway Oxygen Inc. & Philips Respironics
of a shared genetic cause for these two neurodegenerative diseases. Although the investigators are currently unable to identify the specific genetic variation underlying this locus, it will be feasible to identify patients with chromosome 9p21-linked ALS by sequencing for this
risk haplotype.
The research team was led by Bryan Taynor, a neurogeneticist with the Na-tional Institute on Aging and with the Johns Hopkins School of Medi-cine. "We are very excited about this result because for the first time, we have been able to explain a large proportion of ALS cases in a popula-tion, Taynor said. ―We will continue to pursue this chromosome 9 locus to un-
derstand how it gives rise to disease.‖
In addition to The ALS Association, funding for this project came from Na-tional Institutes of Health and National Institute on Aging, Microsoft Research, Helsinki University Central Hospital, Finnish Academy, Finnish Medical Soci-
ety Duodecim, and Kuopio University.
In an ALS Association-funded study conducted in Finland, researchers found that a major cause of familial ALS was located on chromosome 9p21. Finland is a well suited loca-tion for a genome-wide association (GWA) study of ALS because the incidence of the ALS is one of the highest in the world, and the genetic background of the Finnish population is relatively homogenous. Previous GWA studies have failed to identify a single location that is significant and can be replicated in other stud-ies probably because of the hetero-
geneity of the disease.
―Although GWA study has been a disappointing approach to find new genes linked to sporadic ALS, it is encouraging to see the approach used successfully in a more homoge-neous population,‖ said ALS Associa-tion Chief Scientist Dr. Lucie Bruijn,
Ph.D.
In the study published in Lancet Neu-rology, 853 DNA samples were col-lected from 442 people with ALS and
521 control individuals. Control samples were from a population-based study of elderly Finnish indi-viduals. People known to carry the SOD1 gene were included in the final analysis as positive controls to assess whether this genome-wide association study was able to de-
tect an association signal.
Two signal peaks were identified in the population that reached signifi-cance: one peak corresponding to the known autosomal recessive D90A mutation of the SOD1 gene and the second corresponding to chromosome 9p21.2 a location previously linked to autosomal dominant ALS, where the gene is
passed from just one parent.
The study therefore describes a major cause of familial ALS in the Finland located on chromosome 9p21. Furthermore, the overlap with the risk haplotype (a combina-tion of DNA sequences) recently also reported for frontotemporal dementia provides further evidence
The ALS Messenger Page 7
Loan Closet Resources Available
As part of our Patient Services Program, The ALS Association, Michigan Chapter maintains a loan closet full of equip-ment for PALS and families to borrow from at no cost. We presently have the following items availablie”
Walkers, Wheelchairs, Hospital Beds, Power Wheelchairs, Bedside Commodes, Pivot Disks, Transfer Boards, Wheel-chair Cushions, Transport Chairs, Shower Benches, Communication Equipment, Toilet Seat Elevators, Portable Ramps, Bedside Tables and many more items to choose from.
Our inventory changes daily as people donate and check out items. Please contact your Patient Services Coordinator if you are interested in obtaining an item from our loan closet.
Our loan closet depends on the generous donation of equipment. Please remember us when you have gently used equip-ment that you or your family is no longer using. Our current wish list includes:
Transport Chairs, Communication Equipment, Seat Lifts, Portable Ramps
“Use of a BiPap or
ventilator requires a
mandatory
emergency plan for
power outages.”
Advice from the Trenches: Be Prepared
Use of a BiPap or ventilator requires a mandatory emer-gency plan for power out-ages. You absolutely must have long-running batteries or a generator. In addition, you should identify in ad-vance a location you could relocate to where power is assured. If you are unsure of such a place, contact your local Red Cross office for assistance. Also, some power
companies offer priority service for restoring electric-ity to those who use life sup-port. For example, Dominion Power in Virginia provides this service, which requires completion of their Electri-cally Operated Medical Equipment form with your physician’s signature every year. A little preparation now can make a power outage sim-ply a nuisance rather than a frightening life-threatening
situation.
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 live in an area with frequent
power outages. I was just diag-nosed with ALS. How should I pre-pare for potential loss of power as
my ALS progresses?
A: For most folks, a power
outage is simply a nuisance. In
early ALS, it’s a good idea to be prepared with a standard storm kit, which is recommended for eve-
ryone. A typical kit includes:
Bottled water (one gallon per
person per day).
Nonperishable food and can
opener.
Blankets, bedding and
toiletries.
Baby formula, diapers,
bottles and wet wipes, if
needed.
First-aid kit and enough
prescription medicines.
Flashlight with fresh bat-
teries.
Battery-operated radio.
Hand sanitizer.
Paper plates and plastic
utensils.
Extra cash.
Emergency contact infor-
mation. (taken from
PP&L website)
When ALS progresses such that you rely on electrically powered equipment such as a power wheelchair, electric recliner chair, or specialty mattress, it’s time to add a battery backup system to your preparations. Another consideration is investing in a
generator.
The ALS Messenger Page 8
We want to give a big thanks to all our sponsors, walkers, and volunteers
for helping us make this event such a success! Here are some of the statistics
of our Walks to Defeat ALS across Michigan:
*Does not reflect actual event attendance
FUNdraising is not over yet!
The online system will be available until December 1st. That means if you have not reached your fund-
raising goal, or still want to raise money that will help fund research and patient services, you still have
time! If you have been promised a donation and have not received it, it may be a good idea to follow-up.
See if your employer has a Matching Gifts program…
Some companies match gifts made by their employees to charitable events. Check with your employer
today to see if they have a matching gifts program. You can help increase the number
of contributions and donations made to the ALS Association.
Jackson Traverse
City
Portage Detroit Grand
Rapids
# Registered* 71 61 259 872 669
Total $ raised $1,385.00
And still counting!
$6,399.99
And still counting!
$23,325.00
And still counting!
$180,149.84
And still counting!
$54,149.01
And still counting!
The ALS Messenger Page 9
POLL: What Kind of Support Group would Help the Most?
What kind of support group would you be most likely to attend?
A. Online
B. Call-In
C. Face to Face
Please email [email protected] to respond to our poll. Your answers will help us improve our programs and better serve families and patients in
“He sacrificed so
much…...And he
never complained” -
Denise George,
Patient Services
Coordinator
Michigan Caregiver wins Caregiver of the Year
Free Bed Rehabilita-tion Hospital Clinic and his church family in helping to support him as he cared for
Sally.
His advice to other caregivers: ―Don’t turn away help.‖ The ALS Associa-tion, Michigan Chap-ter wishes to con-gratulate Steve Langerack on his award and thank him and all ALS caregiv-ers for the extraordi-nary work they do
for our PALS.
When Denise George, Patient Ser-vices Coordinator for our Grand Rapids office, learned that Homewatch Caregiv-ers was promoting a search for the 2010 Caregiver of the Year, her thoughts were drawn to Steve
Langerack.
Denise nominated Steve for his extraor-dinary commitment to caring for his wife, Sally, who had suf-fered with ALS. De-nise had visited with the Langeracks fre-
quently and admired
Steve’s dedication to providing his wife the best care that he could. ―When Sally could no longer eat, Steve stopped eating in front
of her‖ noted Denise.
A short time later, Mr. Langerack was noti-fied that we would be honored as Home-watch’s 2010 Michigan Caregiver of the Year. He would receive a cash prize, and ad-vance in the national
search.
In a recent television interview, Steve cred-ited The ALS Associa-tion, Hospice, the Mary
