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
August 2010
Volume 1, Issue 5
Walk to Defeat ALS Raises Funds for Patients Services, Research Inside this issue: Patient Services brought to you by the Walk to Defeat ALS
Respiratory Issues Conference
2
Ask A Doc
3
Emergency Prepared- 4 ness and ALS Chapter Calendar
5
Recommended Read- 6 ing Advice from the Trenches
7
Golf for ALS
8
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.
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 Saturday, September 11, 2010 Civic Center Park
Jackson Walk to Defeat ALS Saturday, September 11, 2010 Ella Sharp Park
Portage Walk to Defeat ALS Saturday, September 18, 2010 Celery Flats
Virtual Walk to Defeat ALS Anytime Anywhere
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.
Special points of interest: Meet our new Intern, Marie Tominna! Research Updates Tips for team-building! Upcoming events! Find a clinic near you
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, support groups, educational seminars, community resources, and much more!!! Participating in this years walk allows us to continue 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 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 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 Marie Tominna recently
so much about the history
sociation. I was not only
began working as an in-
of this organization and
drawn to its mission, but I
tern in our Troy office.
its cause. I have gradu-
wanted to be a part of an
She is instrumental in
ated from the University
organization that is com-
helping our family teams
of Michigan with a B.S. in
mitted and dedicated to
prepare for Walk day.
Economics and minor in
serving and helping oth-
Here
her
Biochemistry. I am plan-
ers. I feel that I have
thoughts on her new posi-
ning to pursue a career in
found this with the ALS
tion.
health care and medicine
Association
and felt that I would gain
proud to be part of the
valuable
effort towards curing Lou
she
shares
I recently began interning with the ALS Association and have already learned
“There are times when the emotional or physical burden of ALS can demand all of a family’s focus, and we understand. “
experience
working for the ALS As-
and
I
am
Gehrig ’ s disease.
Walk When You are Ready, Seek Resources Now This month you may notice a lot of information about our upcoming Walks to Defeat ALS. While these are exciting, wonderful days that can bring families together for the cause and inspire hope, we understand that not everyone is ready to walk with us this year. There are times
when the emotional or physical burden of ALS can demand 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 receive assistance through our Patient Services Program. If
you and your family would like to find out more information about the Walk to Defeat 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!
Respiratory Issues Conference, August 4th in Traverse City 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.
Volume 1, Issue 5
Page 3
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 Multidisciplinary 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. Dr. Edward Kasarskis
“I know all of this is frustrating for ALS patients, their families, and their wellintentioned friends who want to be proactive in managing the disease.”
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 derived 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 remedies and supplements to slow the progression of ALS, we have to be careful. Virtually 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 wellintentioned 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)
The ALS Messenger
Page 4
Emergency Preparedness and ALS Ever wonder what people with ALS and their families should do to prepare 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 anything from a fire, tornado, storm, power outage or earthquake to a gas leak next door or an airplane crash. The first step is to believe that something that requires an immediate response 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 medications (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 possibilities.
Consider getting a lifeline or emerIf you are unable to walk, or gency call system that you can may be upstairs at the time easily activate. This can be useof an emergency, consider ful if you have a medical probgetting an Evacu-Aid lem, but it can also be valuable if stretcher. It’s the size of a there is some other kind of emersmall backpack, made of gency, or even a potential break tarp-like material and be-in to your home. You can also comes a portable stretcher, get a dedicated phone that will with the help of one or two call particular numbers – adults. For more information, neighbors, friends, family – in the visit: http:// order you choose, in case of www.safetykitstore.com/ emergency, and those phones do stretcher.html not have a monthly fee as do The most important aspect of emermost lifeline systems. gency preparedness is to start systemLet you local fire department and atically thinking about what you ambulance service know that would do in every conceivable emeryou are a person with ALS with gency situation. While it’s natural to particular physical limitations, have an aversion to think through the so they know if they get a call to problems that could occur, being preyour house how best to manage pared will greatly reduce your potenwhatever issues may arise. Make tial stress and the anxiety of those who love and care for you. sure they know if you have any speaking difficulties, so the computer system will tell a dispatcher If you have any questions, please email Alisa Brownlee at abrownthat they may have trouble understanding the caller. Otherlee@alsa-national.org. wise, the dispatcher might think it’s a crank call. If you rely on electricity for breathing support or to charge equipment 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.
Be sure to talk with your doctor about the equipment you are using and how you can prepare for an emergency.
Ask you local fire department to do a walk through of your home to Inverters are available for many identify any issues and give you respiratory devices that allow you to power your device through your car advice how to prepare. in case of an emergency. Just remember to keep a full tank of gas!
The ALS Messenger
Page 5
August Chapter Calendar
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 Coordinators, 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 required. 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.alsamichigan.org to get the call in information!
The ALS Messenger
Page 6
Recommended Reading: Ambushed by Grace: Help & Hope on the Caregiving Journey 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 touching book, Ambushed by Grace: Help and Hope on the Caregiving Journey Shelly Beach offers insight and advice that can only come from an experienced caregiver. Ambushed by Grace: Help & Hope on the Caregiving Journey is full of practical advice
for caregivers, spiritual insight, and commentary by experts in the fields of geriatrics and family counseling. Shelly offers her own experience and knowledge, delivering her message in a knowing and understanding way.
humor to handle the delicacy that surrounds topics that come with caregiving for a loved one as they age. Designed to serve as a companion to the caregiver, this book comes highly recommended by caregivers and healthcare professionals alike.
Ambushed by Grace discusses the spiritual component 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
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.
New Drug Trial for SOD1 type ALS “The ALS Association provided funding for the development of ISIS-SOD1RX.”
In March, Isis Pharmaceuticals, Inc., initiated a Phase 1 study of ISISSOD1RX in patients with an inherited, aggressive form of Lou Gehrig’s Disease. ISIS-SOD1RX is an antisense drug designed to inhibit the production of SOD1. Antisense techniques are used to deactivate disease-causing or undesirable genes so they cannot produce harmful or unwanted proteins. The ALS Association provided funding for the development of ISIS-SOD1RX. “This therapy will be the first ALS treatment that is specifically aimed at the target, SOD1, known to
cause ALS. The development of new treatments for ALS is an extremely challenging and costly process.
ISISSOD1RX in patients with familial ALS that is caused by mutations within the SOD1 gene.
The ALS Association has been pleased to co-fund this study and partner with Isis on this extremely promising treatment approach.
The study consists of four cohorts with eight patients each. In this study, ISISSOD1RX will be administered intrathecally (in the spinal canal) using an external pump to deliver the drug directly into the spinal fluid during a single, 12hour infusion. The study will be conducted at multiple centers within the United States.
It is only through the support of our generous donors that this type of advancement is made possible,” commented Lucie Bruijn, Ph.D., Chief Scientist, The ALS Association. The study is a placebocontrolled, dose-escalation study designed to assess the safety, tolerability and pharmacokinetic profile of
This story was originally published in Vision, The ALS Association’s national news publication.
The ALS Messenger
Page 7
Michigan Offers Extraordinary ALS Care The following clinic is also ALS Patients living in Henry J. Hoenselaar Clinic Michigan have the ability Henry Ford Hospital recognized by The ALS Assoto choose between sev- Neurology K-11 ciation: eral excellent ALS cen- 2799 West Grand Blvd ters to visit for their multi- Detroit, MI 48202 The MSU at Mary Free Bed disciplinary clinical care. 313-916-2835 Rehabilitation Hospital With two certified centers 360 Lafayette Suite 308 of excellence and another The University of Michigan Grand Rapids, MI 49503 Health System clinic going through the 1914/0316 Taubman Center 616-493-9727 process, there are many 1500 E. Medical Center Dr venues for treatment in Ann Arbor, MI 48109 Michigan. For more infor- 734-936-9020 mation on the clinic nearest to you, please contact your Patient Services Co- ALS Association Certified CentersSM are medical facilities ordinator . that have been certified by The Association as distinguished regional institutions recognized as the best in the Michigan is home to the field with regard to knowledge of and experience with ALS following certified centers:
Advice from the Trenches “Taking a shower is one of those things we frequently take for granted until we are faced with the prospect of doing without it.”
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.
the barriers addressed, showering can easily remain part of your routine. Here are some tips to make that happen.
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 eventually need a tracheotomy and ventilator?
If you have a shower stall you may want to consider converting it to a roll-in shower. This is the most convenient 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 existing toilet, I suggest getting one that also serves as a shower chair. Other important features are a high back and sturdy arm supports.
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 possible through all stages of paralysis including when using a ventilator. But it requires anticipating your needs, planning ahead then making the necessary changes. Once everything is in place and
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 eliminates the treachery of moving into a slippery bathtub.
A hand-held showerhead is a
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 tracheotomy 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 protection around the tracheotomy, 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.
The ALS Messenger
Page 8
Walking to Defeat ALS
I’m a REGISTERED Walker , Now What???
1
Personalize your personal page at www.WalkToDefeatALS.org. Share your story, add a photo– let people know why you are walking 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!!! 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
3
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. 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
4
Detroit, Jackson, Virtual 866-927-CURE
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
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!