April 2010
ALS Association, Michigan Chapter
The Michigan Chapter
Patient Services News Welcome to our new E-newsletter! Find out the latest news in research Keep up on Chapter activity Mark you calendar for upcoming events Read about one caregiver’s experience with ALS
Michigan Chapter Newsletter Launched!
Volume 1, Issue 1
Spring is in the air! Come join us for upcoming events of drop in for a support group meeting!
Beginning this month, the ALS Association, Michigan Chapter will be sending out an electronic newsletter for PALS and their families with a variety of features and updates. Written by your Patient Services Coordinators, Denise & Kristen, we hope that this newsletter will be a source of helpful resources and information for you and your family. Inside you’ll find a monthly calendar of support groups and other events, lists of new resources we’ve learned about, updates on research
information and other helpful material. We’ll also include special interest pieces, including a piece written by a featured family each month. Special discussion pieces will also be a monthly feature that will deal with topics like coping with change, mobility, exercise, nutrition, stress, and other topics you may have questions about. Hoping to see something in particular in the coming months? Please call or email Denise or Kristen
and let them know. We will be happy to include whatever information will be most helpful! Check you email every month for the latest edition and most current information! Kristen Munyan, RN 248-680-6540 kristen@alsa -michigan.org Denise George, RN 616-459-1900 denise@alsa-michigan.org We welcome your feedback and hope you will take the time to tell us what you think of the new newsletter!
Research Update & 25th Anniversary Celebration
Inside this issue: Share your Story
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Looking for Support?
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Troy SG Changes Location
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Calendar
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Core Updates
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Featured Family
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Strategies for Fatigue
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Last month the ALS Association, Michigan Chapter had the pleasure of celebrating 25 years of serving PALS and their families. We honored the occasion with a Celebration and Research Update held on February 2nd at the Southfield Public Library and on February 3rd in Grand Rapids at Cascade Hills Country Club. With over 300 RSVPs, it was a great evening and we learned much from our wonderful speakers, including: Dr. Kristen Gruiss of University of Michigan, Dr. Ed Dobson, Sheri Mark, President of Michigan Citizens for Stem
Cell Research and Cures, Dr. Deborah F. Gelinas, of Mary Free Bed, Merritt K. Taylor, PhD, Grand Valley State University. The speakers dealt with topics such as stem cell research, drug trials in progress and other ongoing research being done to develop treatments for ALS. Chapter awards were given out, with Bill Emerson, CEO of Quicken Loans, being awarded the top Iron Horse Award, to recognize his outstanding commitment to raising funds to help make a difference for all those with
ALS. Our speakers were kind enough to open the floor to questions after the program as well. Thank you to all who braved the weather to celebrate with us! If you were unable to make it to the research update by are interested in knowing what information was shared, please email Kristen (kristen@alsamichigan.org or Denise (denise@alsa-michigan.org) for a summary of the evening’s outstanding presentation’s.
Patient Services News Volume 1, Issue 1
Page 2 Looking for Families who would like to share their story!
On page 6 of this month’s newsletter you can read about the Maldonados, an exceptional family who has been kind enough to share their experiences with ALS with us. Many PALS and their families find the experience of sharing their story very helpful and many others have asked to be able to talk to or read about the experiences of others in similar situations. If you would like to share your story with others who are dealing with the effects of ALS we would love to hear from you! Watch our website—soon you will be able to submit your story and photos online at www.alsa-michigan.org. Please contact Denise or Kristen to talk or email them at denise@alsamichigan.org and kristen@alsa-michigan.org.
ALSA Staff are headed to Washington!
Attendees will have the chance to meet with members of Congress to actively advocate for ALS patients and families
On May 9th, Stacey Orsted, Executive Director, Denise George and Kristen Munyan (Patient Services Coordinators), will pack their bags for Washington DC. They will join Todd Noeske, the Chapter’s Public Policy Chair who has helped to organize this trip, (advocacay@alsa-michigan.org) and thousands of other patients, families, and ALS Association members for National ALS
Advocacy Day. While there, attendees will have the opportunity to receive updates on the latest clinical trials, legislation and political happenings that affect the ALS community. At the end of their stay in the capital, attendees will have the chance to meet with members of Congress to actively advocate for ALS patients and families. As part of their activities there, attendees will participate in a Candlelight Vigil
for those who have lost their battles with ALS. All are welcome to join us for this exciting trip. The deadline for registration is April 9th. For more information see: http://ww.alsa.org/files/pdf/ advocacy/ 2010_ADV_Brochure.pdf or email Todd Noeske. .
Meet Our Staff: Denise George, RN: Patient Services Coordinator
Denise George, RN Patient Services Coordinator
Denise George, Patient Services Coordinator, has been with the ALS Association, Michigan Chapter since October 2006. Denise is a registered nurse and worked many years in management in several Intensive Care Units in both Michigan and Tennessee. She also enjoyed a very successful career in medical sales as a top performer for such
prestigious companies as HillRom and Becton Dickinson, recognized by every industry standard, as the best in each of their respective categories. Denise displays great passion when working with the multidisciplinary team weekly at the MDA/ALS Center at Mary Free Bed Rehabilitation Hospital. The team is inspired by the patients and committed to doing all they can to make their lives better and she is
committed to helping her PALS and family members by providing resources and assisting with the management of the disease to ensure living with dignity, and the highest possible quality of daily life. Denise enjoys golf, cooking, gardening, going to the beach, travel and antiquing. She’s looking forward to her son Cameron graduating this year and helping him transition to college life.
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Useful Sites
www.alsa-michigan.org - take a look at our website for helpful information for patients and families, see our upcoming events and contact our staff. www.alsa-org - Our national website can be a great source of information on the latest happenings in ALS research and advocacy. www.patientslikeme.com - A free social networking site where you can meet and chat with other patients with similar experiences. Contact Kristen or Denise for resources in your area!
www.lotsahelpinghands.com - A web-based community that can help families organize friends and extended family to help. www.carepages.com - A free tool to use to keep in touch with family and friends and to update them on how you’re doing and how they can help. For questions regarding specific information or referrals for services or resources in your area, contact Denise or Kristen.
Looking for Support? If you’re looking for an opportunity to connect with others going through the experience of having ALS or caring for someone with ALS, perhaps one of our many support groups could be helpful for you. With groups meeting throughout the state, you can meet with others with similar experiences. Run by our
Patient Services staff or excellent and experienced volunteers, support groups are open to everyone. We understand that ALS can make traveling to groups difficult. If you are unable to make it to the group in your area, consider participating in one of our call-in support groups that are held on the 2nd
Thursday of the month from 2pm-3pm and the 3rd Tuesday of the month from 6:30-7:30pm. All are welcome. Find details on our website, www.alsamichigan.org. If you have an idea for a support group topic or suggestion for a new support group location please contact Kristen or Denise.
ALS can make traveling to support group locations difficult. If you are unable to join us at a group in your area, consider calling in to one of our state-wide phone-in groups!
Meet Our Staff, Kristen Munyan, RN : Patient Services Coordinator
Kristen Munyan, RN Patient Services Coordinator
Kristen is the newest member of The ALS Association, Michigan Chapter Team. She joined us in January of this year after working in an intensive care unit. She comes to our chapter with a personal connection to ALS, having a friend who is battling the disease. “Being able to help people and families with ALS
makes me feel a little less helpless” she says. Kristen is a Registered Nurse and is presently a student at Oakland University in the Masters of Nursing Education program. “Part of why I love working with ALSA is the dedication to research. This is something so important to me in my graduate work”. She grew up in the
metro-Detroit area and lives here with her husband Matt and three dogs, Ruby, Shelby & Radar. She and her husband love the outdoors and going Up North whenever they have the chance. Kristen will be visiting the Henry Ford and University of Michigan Clinics. She looks forward to getting to know you all!
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April 2010 Sun
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Mon
Tue
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Grand Rapids SG 2-4pm 18
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Thu
Fri
Sat
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8 Call In 2-3
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Troy SG 6:30-8pm
9 Deadline to register for Advocacy Day
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22 Survivors Lunch
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Kalamazoo SG 7-8:30pm 19 Bay City SG 6:30 -8pm
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Wed
26 Ann Arbor, Flint SG 6:308pm
20 Call-In 6:307:30
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Gaylord SG 2:304pm 29
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Troy Support Group Changing Locations - May 2010
Beginning with our May meeting (May 13, 2010) the Troy Support Group will be changing locations - In the interest of having a bit more room to accommodate our growing group, we will be moving to Big Beaver United Methodist Church. This wonderful community has graciously opened its doors to our Chapter
and the families we serve! This change in location will not affect our meeting day or time. We will continue to meet on the second Thursday of each month from 6:30 to 8:00pm. We will be able to meet in the Big Beaver United Methodist Church Community Center in the Library. The Big Beaver United Methodist Church
community is located on at 3753 John R Road in Troy MI 48083. It is located on John R Road just south of Wattles on the west side of the street. No registration is ever required to attend support groups. All patients, Caregivers, Friends, and Family members who have been affected by ALS are always welcome.
Big Beaver United Methodist Church
(Excerpt from ALSA release) Isis Pharmaceuticals, Inc has initiated a Phase 1 study of ISIS-SOD1 in patients with an inherited form of Lou Gehrig’s disease also known as familial ALS. About 20 percent of all familial ALS cases are caused by a mutant form of superoxide dismutase, or SOD1. The ALS Association and the
MDA are providing funding for the development of ISIS -SOD1. ISIS-SOD1 is an antisense drug that is designed to inhibit the production of SOD1. Antisense techniques are used to deactivate diseasecausing or undesirable genes so that they cannot produce harmful or unwanted proteins. This drug will be the first of
its kind to enter clinic trials to treat a neurodegenerative disease. It is delivered directly to the nervous system though a 12 hour long spinal infusion. Studies will be done in multiple centers across the United States. To see the full article on ISIS-SODI go to www.alsamichigan.org and look at the spotlight section.
Patient Services News
Research Update: First ALS Patient Receive Antisense Treatment
Volume 1, Issue 1
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Advocacy Update: DOD Research Funding
The ALS Association is currently working with Congress to double funding to $15million in 2011.
The Department of Defense is expected to announce that it will be accepting applications for research proposals to be funded through the DOD’s ALS Research Program (ALSRP) in March. A total of $7.5 million will be available this year, which is a 50% increase over 2009.
This funding is the direct result of the efforts of The ALS Association and advocates across the country who last year successful urged Congress to increase funding for the ALSRP. The ALS Association is currently working with Congress to double funding for the
ALSRP to $15 million in 2011. Please go to www.alsa.org and take a look at our Advocacy page for more updates and information on how you can contribute to The ALS Association’s advocacy efforts.
Augmentative Communication Technology Seminar
Join us on Thursday, May 20th at the Royal Oak Public Library for an educational seminar on Augmentative Communication Technology featuring Kelly Petri of Dynavox. Kelly will be discussing devices to help
people with ALS to communicate with their loved ones. She will demonstrate the latest technology for augmentative communication devices and answer questions about the devices. The seminar will last
from 6:30 to 8:30pm with time for questions. No registration is required and there is no cost to attend this informational session, but please RSVP to Kristen to let us know how many people will be coming.
The Royal Oak Public Library is located at 222 E. Eleven Mile Road, Royal Oak, MI 48067
Patient Services News Volume 1, Issue 1
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Featured Family: The Maldonados I have been diagnosed with ALS. My name is Gil, I’m 54 years old and married to my beautiful wife for 25 years. We have two sons, 24, and 22 years old. Our youngest son is married and they have a daughter. I woke up yesterday morning/noon thinking what am I going to do today? Oh boy, my legs are really hurting and feel like they are lead weights. Yep, got to get up to take my meds. I sure need them right now. My wife knocks on the bedroom door, my mother is on the phone. She calls just about every day and I’m happy she does. Six or seven years ago I remember playing basketball with my sons. I was never that good at this game but playing with/against my sons was always fun and I actually won a few games. I’m trying to play defense one day, I’m moving my body in front of him only my legs aren’t moving- I fall. As the months past I began to notice several stumbles and stiffness in my legs. After several doctors/tests, nothing definitive was found. I thought, I was just getting older (yipes!). A few months later I fell again, this time down the stairs to the basement floor, thankfully with no major injury. A couple neurologists and more tests later- I was told it was ALS.
Finally I knew what I had but this doesn’t sound good. I was told it I had a slow progressing form of the disease. You ever feel good and yet scared at the same time?
At that time I felt some disbelief, fear, anxiety, anger, sadness, stress, etc. Later I thought, so these are the emotions of someone with a fatal disease and you really don’t understand until you’ve been there. I read a lot of information regarding the disease. I coped thinking, ”Hey, I’m still in pretty good shape, I’m not going to let this change me and burden my family. I have my faith, my family and my friends.” Five years later in life’s journey, I’m using a cane and 4 -wheeled walker to get around. I am laid off from my work and currently on temporary disability. I still drive but getting in and out of the car is the difficult. I fatigue easily, experience nausea, soreness/ cramping in my muscles, take several medications, can’t sleep well, or sleep a lot. I have realized the change in my health and the probable decline I face which will or could become a burden to my family. Some days, I’m tired of feeling bad. Yes, there have been changes. Thankfully I was wrong about my thinking! The Effect of Changes I have ALS. -What I did not realize is my wife has ALS. No, she doesn’t have the disease but she has me. If I’m struggling with my health she feels even more helpless. She is with me everyday and needs support
You ever feel good and yet scared at the same time?
“Love is not counting the years, love is making the years count” as much as I do. We’re both committed to learning to adjust together. I have learned to appreciate all she has always done, even more. Really! - My family and friends know this and want to help. I would refuse help still trying to do what I felt able. My mistake! I need their help and they need me to let them. To have friends or family visit, call or send cards is so encouraging! At first I thought it was “nice”(and it is). That said I don’t know of too many people who don’t have “busy” lives and yet, many have taken time to do these and other things for me. I am so thankful for them! - Where would I be without all the healthcare professionals (at U of M) who are there to help as only they can? They have become an important part of my life and I am thankful for them. The ALS Association. What a wonderful resource. The Michigan Chapter in Troy has been a great support for my wife and I. Meeting and sharing with people who are going thru similar experiences is encouraging for all. - The Lord knows this. God has been and is my (and my wife) strength! The Lords’ Church (the people) have shown me how to encourage and bless others by their wonderful example. I believe He has given me an opportunity to bless others. I have come to appreciate the simple experiences of my life. I never thought I took for granted any one I hold dear. Wrong (again)! I have come to a greater appreciation of all my family, friends, and others who face illness or injury. Instead of drowning in sorrow for myself, I
remember my family and friends have their own daily struggles too. I have a 3 year old granddaughter, Adreanna. She knows I’m not able to do what I have in the past- chase her in the yard, carry her when she is tired, and take long walks. Yet, she still enjoys the things we can do together like read books, push her on a swing at the park, play games on the floor. If I get up without my cane, she runs to get it for me. She offers to do more than she is physically able yet understands she has limitations too. Her focus is on what I can do, not papa is sick. She does this with a wonderful smile and attitude. She is a wonderful example for me. She is my Joy! Admittedly, I do not understand all the difficulties more typical ALS patients and caregivers courageously face each day. I’m simply saying I feel able to relate a little better with the emotions of any person who is struggling with an incurable fatal disease. I’m still learning from meeting others with severe illness. I have sometimes thought of how close to death I have often been just driving a motor vehicle. God has given me time to bless and encourage others in ways I am able, by listening, sharing, and/or just being there. In closing, I recently “dug up” a wedding anniversary card I received from my wife a couple years ago. The cover read: “Love is not counting the years, love is making the years count” I tried using the word “life” in place of the word “love”. They both sound good to me!
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ALS Center and Clinics in Michigan
Michigan offers several excellent places to receive care for ALS. Listed below are the locations and contact information for the ALS Certified Centers and ALS Clinics in the state of Michigan. The Harry J. Hoenselaar Clinic Henry Ford Hospital An ALS Assoc. Certified Center 2799 West Grand Blvd Neurology K-11 Detroit MI, 48202 Medical Director: Dr. D.Newman 313-916-2835
The MSU at Mary Free Bed Rehabilitation Hospital ALS Clinic 360 Lafayette, Suite 308 Grand Rapids, MI 45903 Medical Director: Dr. D. Gelinas 616-493-3727
University of Michigan Health Center An ALS Assoc. Certified Center 1914/0316 Taubman Center 1500 East Medical Center Drive Ann Arbor, MI 48109 Medical Director: Dr. Kirsten Gruis 734-936-9020
"I walk slowly, but I never walk backward." - Abraham Lincoln Strategies for Dealing with Burnout Being a caregiver of someone with ALS is a very important role. It usually involves a number of tasks that can be very time consuming, and can require a great deal of effort. If we do not learn to recognize that certain tasks and expectations can take their toll on us, regardless of what role (s) we play in life, we may find ourselves headed down the path of burnout. Some
solutions for dealing with burnout are: - Take care of yourself! Get good nutrition, rest and exercise and pay attention to your body’s signals of stress. - Practice stress-reducing strategies. Try breathing exercises, yoga, message or meditation. - Develop a strong support system. Surround yourself with family and friends, join a support group or create one.
Utilize your employers Employee Assistance Program. Seek counseling if you need more extensive mental support. - Create a fulfilling life by acknowledging your priorities and actively building your life around them.
Take care of yourself! Get good nutrition, rest and exercise and pay attention to your body’s signals of stress!
Read more about burnout at :http://www.alsa.org/files/ cms/Resources/ FYI_CaregiverBurnout.pdf
Minimizing Fatigue
Try to get into a regular sleep pattern and make sure to rest!
Think about these anti-fatigue strategies to keep energy up: 1. Learn methods for making every task easier & use devices that can help. 2. Pace yourself! Move slowly and easily. Rest often. Plan your activities together and get everything you need before you start. Utilize possible shortcuts. 3. Alternate activities and rest.
4. Get a handicapped parking sticker. 5. Try to establish a regular sleeping pattern. 6. Avoid prolonged bathing in warm water, as it may worsen muscle fatigue. Be cautious of extreme temperatures outdoors. 7. Good nutrition! 8. Avoid stress as much as possible.
9. Report changes or increased weakness or fatigue to your doctor. 10. Make you living environment accessible for you daily activities. To learn more about antifatigue strategies see: http:// www.alsa.org/files/cms/Resources/ YI_07_Minimizing%20Fatigue.pdf
Fighting Lou Gehrig’s Disease on Every Front
ALS Association, Michigan Chapter
The ALS Association Michigan Chapter: 678 Front Street, Suite 159 Grand Rapids, MI 45903 616-459-1900
www.alsa-michigan.org
675 E. Big Beaver, Suite 207 Troy, MI 48083 248-680-6540 Find us on Facebook! Look for Michigan Chapter, then friend our staff!