The ALS Messenger F i gh t i ng Lo u Geh r ig ’ s Di s e as e i n Mi ch ig a n
October 2010
Volume 1, Issue 7
Walk to Defeat ALS Brings Hope Inside this issue:
Thank you to RiteAid!
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Caregivers and Employment
Fall Traditions
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
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giant leap to finding a cure. Thank you for the countless hours you have put in sending
Thank you to Dyer-Ives!
emails, making phone calls, and encouraging people to get involved. The dollars raised will
Using Urgent Care Effec- 4 tively
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
Chapter Calendar
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Volunteers Give Time, Build Ramps for PALS
workforce and holding creative fundraisers like parking lot barbeques and Karaoke contests, 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
Respiratory Conference
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Genome Research Update
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.
Loan Closet Resources
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―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– Michigan Chapter. Everyone is part of our family.‖
Advice from the Trenches
Walk Wrap Up
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Caregiver of the Year awarded to Michigan Man 9 Get your ALS Wristbands! 10
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Thank You to The Rite Aid Foundation! The ALS Association, Michigan Chapter was thrilled to learn that we have been selected by The Rite Aid Foundation to receive a $20,000 grant to help fund our Durable Medical Equipment Loan Closet Program! These funds will be used to acquire new equipment for PALS to borrow and to repair and maintain our current inventory. The Durable 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 Foundation 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? 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 noncaregivers of the same employment status. Interestingly, employment is associated 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.
Volume 1, Issue 7
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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
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!
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 recipients 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 commitment to helping PALS and their families access supportive services. We look forward to improving our virtual access program with their help!
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The ALS Messenger
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 emergencies. 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 emergency rooms. They should not be used if there is any real question in your mind whether the situation is an emergency. 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 primary 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 number, 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 communicating, 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 going to an urgent care center, call them to get an estimated waiting time. Most urgent care centers treat patients 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 system may prove valuable for future reference.
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October Chapter Calendar Sun
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Mon
Tue
Wed
Thu
Fri
Sat
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Kalamazoo Support Group 7:008:30pm
14 State Wide CallIn Support Group 2:00-3:00pm Troy Support Group 6:30—8:00pm
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28 Survivor’s Lunch
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Grand Rapids Walk to Defeat ALS 10
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Bay City Area Support Group 6:30-8:00pm
State Wide Call In Support Group 6:30-7:30pm
25 Ann Arbor Support Group
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Fenton Area Support Group 6:308:00pm
11:30-1:00pm
Grand Rapids Support Group at Gaylord Support Group 2:30-4:30pm MFB 6:00— Respiratory Issues Con7:30pm ference
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 Kensington 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 extraordinary 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 presently booked for fall builds. Builds will resume in the spring. To be placed on a waiting list, please contact Kristen.
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Respiratory Issues Conference: October 28, 2010
Respiratory Issues and Equipment presented by Airway Oxygen Inc. & Philips Respironics Mary Free Bed Rehabilitation Hospital 2nd floor conference room October 28st 6:30pm-8:00pm Please RSVP to Denise George at denise@alsa-michigan.org or 616-459-1900 by October 21, 2010.
Genome Study Identifies Chromosome 9 Link to ALS 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 location 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 studies probably because of the heterogeneity 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 homogeneous population,‖ said ALS Association Chief Scientist Dr. Lucie Bruijn, Ph.D. In the study published in Lancet Neurology, 853 DNA samples were collected from 442 people with ALS and
521 control individuals. Control samples were from a populationbased study of elderly Finnish individuals. 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 detect an association signal. Two signal peaks were identified in the population that reached significance: 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 combination of DNA sequences) recently also reported for frontotemporal dementia provides further evidence
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 National Institute on Aging and with the Johns Hopkins School of Medicine. "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 population, Taynor said. ―We will continue to pursue this chromosome 9 locus to understand how it gives rise to disease.‖ In addition to The ALS Association, funding for this project came from National Institutes of Health and National Institute on Aging, Microsoft Research, Helsinki University Central Hospital, Finnish Academy, Finnish Medical Society Duodecim, and Kuopio University.
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Loan Closet Resources Available As part of our Patient Services Program, The ALS Association, Michigan Chapter maintains a loan closet full of equipment 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, Wheelchair 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 equipment that you or your family is no longer using. Our current wish list includes: Transport Chairs, Communication Equipment, Seat Lifts, Portable Ramps
Advice from the Trenches: Be Prepared
“Use of a BiPap or ventilator requires a mandatory emergency plan for power outages.”
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 author of ―The Butcher’s Daughter: The Story of an Army Nurse with ALS,‖ in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer, nursing leader and mother of a teenage son.
opener. Blankets, bedding and toiletries. Baby formula, diapers, bottles and wet wipes, if needed. First-aid kit and enough prescription medicines. Flashlight with fresh batteries. Battery-operated radio. Hand sanitizer.
Q: I live in an area with frequent power outages. I was just diagnosed with ALS. How should I prepare 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 everyone. A typical kit includes: Bottled water (one gallon per person per day). Nonperishable food and can
Paper plates and plastic utensils. Extra cash. Emergency contact information. (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.
Use of a BiPap or ventilator requires a mandatory emergency plan for power outages. You absolutely must have long-running batteries or a generator. In addition, you should identify in advance 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 electricity to those who use life support. For example, Dominion Power in Virginia provides this service, which requires completion of their Electrically Operated Medical Equipment form with your physician’s signature every year. A little preparation now can make a power outage simply a nuisance rather than a frightening life-threatening situation.
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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: Jackson
Traverse
Portage
Detroit
City
Grand Rapids
# Registered*
71
61
259
872
669
Total $ raised
$1,385.00
$6,399.99
$23,325.00
$180,149.84
$54,149.01
And still counting!
And still counting!
And still counting!
And still counting!
And still counting!
*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 fundraising 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.
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For Sale
POLL: What Kind of Support Group would Help the Most?
616-262-811 sslangerak@comcast.net
What kind of support group would you be most likely to attend? A. Online B. Call-In C. Face to Face Please email kristen@alsa-michigan.org to respond to our poll. Your answers will help us improve our programs and better serve families and patients in
2004 Ford Freestar (mini-van) Rear loading with manual ramp 78000 miles Asking $15,500 Power Chair/Storm Series-Torque 3 Chair is 1 year old with power elevation ROHO seat Asking $3000
Michigan Caregiver wins Caregiver of the Year “He sacrificed so much…...And he never complained” Denise George, Patient Services Coordinator
When Denise George, Patient Services Coordinator for our Grand Rapids office, learned that Homewatch Caregivers was promoting a search for the 2010 Caregiver of the Year, her thoughts were drawn to Steve Langerack. Denise nominated Steve for his extraordinary commitment to caring for his wife, Sally, who had suffered with ALS. Denise had visited with the Langeracks frequently 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 notified that we would be honored as Homewatch’s 2010 Michigan Caregiver of the Year. He would receive a cash prize, and advance in the national search. In a recent television interview, Steve credited The ALS Association, Hospice, the Mary
Free Bed Rehabilitation 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 Association, Michigan Chapter wishes to congratulate Steve Langerack on his award and thank him and all ALS caregivers for the extraordinary work they do for our PALS.
The A L S A s so c i a t i o n, M i ch i g a n Cha p t e r 675 E. Big Beaver, Suite 207 Troy MI, 48083
678 Front Street, Suite 159 Grand Rapids, MI 49504
Phone: 248-680-6540 Fax: 248-680-6543 Email: kristen@alsa-michigan.org
616-459-1900 616-459-4522 denise@alsa-michigan.org
FIGHTING LOU GEHRIG’S DISEASE
Create Awareness with an ALS Wristband!
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 information on getting your wristband! Troy—248-680-6540 Grand Rapids—616-459-1900
People with ALS and their families come first in everything we do. Our vision is a world without ALS!