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 November 2010
Volume 1, Issue 8
Happy Veteran’s Day! Inside this issue:
Ask A Doc
Chapter Calendar
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National Family Caregiver’s Month!
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Clinic Information
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Volunteer Program to Launch this Month Get the Most Out of Your 6 Doctor’s Appointment
Advice from the Trenches
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The National ALS Regis- 8 try is Here!
Research Update!
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In honor of Veteran’s Day, The ALS Association, Michigan Chapter would like to extend our deepest thanks to our veterans with ALS who have given so selflessly to serve in the military. We want to ensure that all of our PALS who are veterans are receiving the benefits they deserve. Sadly, veterans, regardless of what branch of the military they served in or how long their time of service, are at twice the risk of developing ALS as the general population. The ALS Association is committed to serving veterans and their families who are coping with this terrible disease. Our advocacy campaigns have resulted in millions of dollars being allocated to groundbreaking research through the Department of Defense and the recognition of ALS as a service-related illness that is eligible for veteran’s benefits. If you or a loved one has served in any branch of the military and has now been diagnosed with ALS, please contact our offices so we can assist you in applying for veteran’s benefits. Veteran’s benefits can help PALS with expenses related to home care, home modifications and wheelchair accessible vehicles in addition to medical care. It is easy to apply and there are plenty of resources to help you. Please don’t delay in applying for your veteran’s benefits! You can reach Kristen, our Patient Services Coordinator, at 866-9278273 for more information and help in getting your application started.
Again, to all of our Veteran PALS, thank you for your service!
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The ALS Messenger
Ask A Doc 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. Q: My 38-year old brother was diagnosed one year ago. On his only visit to the ALS clinic so far his doctor told him that his situation was mostly ―upper neuron.‖ What does this mean? He barely walks and has no use of his hands (where the symptoms started). His speech has all but disappeared. What is the difference between upper motor neuron disease and lower motor neuron disease? What gets affected the most, and when? A: This is a very good question and is basically about classifying your brother’s disease. To understand what his doctor was trying to convey, we first need an understanding of some terminology and concepts as they apply to the organization of the brain, spinal cord, and voluntary muscle. This is about to become a bit complicated, so hang in there with me. You probably already know this, but . . . muscle weakness in ALS is caused by the degeneration, dysfunction, and death of motor neurons -- not because of a defect in the muscle itself. Neurons are nerve cells; motor neurons are nerve cells involved in producing movement. For this reason, ALS is frequently referred to as a ―Motor Neuron Disease‖ (MND). So, how do motor neurons produce movement? Any movement begins with an idea and plan formulated in the brain—walk to the bookstore, play with the cat, get a beer, etc. The motor plan eventually converges on the motor neurons in the motor cortex of the brain. These are the socalled, ―upper motor neurons‖ (UMN) or ―Cortical Motor Neurons.‖ Let’s say you are going to move your right hand. The UMNs residing in the ―hand region‖ of the motor cortex on the left side of your brain control movement of the right hand. But that is only the beginning of the story. These are huge nerve cells whose body is in the motor cortex but part of the neuron known as its ―axon‖ physically extends downward from the top of the brain, passing through the brain, crossing over to the right side, and contacting a second set of motor neurons in the cervical spinal cord in the neck area. So this single UMN is, in reality, probably 1-2 feet in length. As you probably have guessed, the spinal motor neurons are the ―lower motor neurons‖ (LMN). The LMN is similarly huge. The cell body of the LMN resides in the spinal cord but its axon leaves the spinal cord and goes out to the arm in this example and contacts the muscles in the arm that move the right hand. There are many other neurons involved in creating and smoothing movement, but the basic set up of UMN à LMN à muscle is all we need to consider in ALS. So to move the hand, the UMN electrically fires off a signal to the LMN, which fires of a second electrical signal to the muscles, which are stimulated to contract causing movement. How do we neurologists know that we have a problem involving the UMN or LMN? A physical exam typically finds different signs and symptoms depending on whether you have upper or/and lower motor neuron degeneration. Signs of UMN disease usually include spasticity of the muscles (a stiffness and resistance to movement), brisk reflexes and a Babinski sign, (a reflex that is a sign of damage to the nerve paths connecting the brain to the spinal cord). Signs of LMN damage include weakness, muscle atrophy (wasting), and fasciculations (muscle twitching). These signs can occur in any muscle group, including the arms, legs, torso, and bulbar region. In classical ALS, a person experiences both UMN and LMN signs in the same region, for example in an arm. However, there is a spectrum of involvement within a region. Sometimes people who have symptoms predominantly associated with UMN disease, so the picture is one of tremendous spasticity and slow movement. However an EMG test will give evidence of the LMN component of ALS. This is probably the situation in the case of your brother, the so-called upper motor neuron predominant ALS. A rare person may only have UMN involvement without any LMN dysfunction. In the US, we would label this condition as ―Primary Lateral Sclerosis‖ (PLS). On the other side of the MND spectrum, another person may only have LMN signs with minimal UMN findings. Whichever type of MND a person has, the anticipation is that the condition will progress. As such, all will face problems with mobility, speech and communication, swallowing dysfunction, and ventilatory insufficiency. Careful follow up is needed to manage these problems as we have discussed previously in this column. If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@alsanational.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.
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November Chapter Calendar Sun
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Kalamazoo Support Group
Statewide Call-in Troy Support Group
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NO Grand Rapids Support Group
Survivor’s Luncheon
Bay City Support Statewide Call-In Group
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Fenton Support Group
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Mark Your Calendar for Some Holiday Shopping! Holiday Gift Wrapping Day!! December 17th, 2010 Hosted by
Borders Books of Birmingham 34300 Woodward Ave Birmingham, MI 48009 Get some holiday shopping done and we can wrap your gifts on site. Donations will be accepted all day! Interested in wrapping? - contact Marie @248-680-6540
The ALS Messenger
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National Family Caregivers Month: Facts on Caregiving Compiled by the National Family Caregivers Association More than one quarter (26.6%) of the adult population has provided care for a chronically ill, disabled or aged family member or friend during the past year. Based on current census data, that translates into more than 50 million people.
Source: National Family Caregivers Association (NFCA) Random Sample Survey of 1000 Adults, Funded by CareThere.com, Summer, 2000. Caregiving is no longer predominantly a women's issue. Men now make up 44% of the caregiving population.
Source: National Family Caregivers Association (NFCA) Random Sample Survey of 1000 Adults, Funded by CareThere.com, Summer, 2000. The value of the services family caregivers provide for "free" is estimated to be $306 billion a year. Source: Peter S.
Arno, "Economic Value of Informal Caregiving," presented at the American Association of Geriatric Psychiatry, January 2006. Family caregivers who provide significant time and effort in caring for a loved one, especially spousal caregivers, do not get consistent help from other family members. One study has shown that as many as three fourths of these caregivers are "going it alone." Source: Caregiving Across the Life Cycle - as above. Approximately 80% of home care services are provided by family caregivers. Source: US General Accounting Office (GAO/HEHS 95-26, "Long-Term Care: Diverse, Growing Population Includes Millions of Americans of All Ages") 1994. A recent study calculated that American businesses lose can lose as much at $34 billion each year due to employees' need to care for loved ones 50 years of age and older. Source: National Alliance for Caregiving/Met Life (Met Life Study of Employer Costs for Working Caregivers). Fifty nine percent of the adult population either is or expects to be a family caregiver. Source: Metlife Mature Market
Institute and National Alliance for Caregiving, MetLife Caregiving Cost Study: Productivity Losses to U.S. Business,
The ALS Association, Michigan Chapter wishes to extend our deepest thanks to all those who so selflessly give of themselves and their time to care for others in their life. Your time and energy is so very much appreciated. We hope to support you in your efforts in any way possible and encourage you to contact us for information, resources and support. Happy National Family Caregiver’s Month!
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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 SM your Patient Services Co- ALS Association Certified Centers are medical facilities that have been certified by The Association as disordinator . tinguished regional institutions recognized as the best in Michigan is home to the the field with regard to knowledge of and experience with following certified centers: ALS
New Volunteer Program to Launch This Month
We are pleased to announce the launch of our new Volunteer Services Program!
As part of our continued commitment to supporting ALS patients and their families, we are pleased to announce the launch of our new Volunteer Services program! This program was designed with the intent of helping caregivers and families with non-medical needs that can sometimes become neglected due to the challenges that ALS presents. Beginning November 15th, caregivers and families will be able to email or call our offices with a request for a volunteer placement for help with tasks like yard work, grocery shopping, household chores, companionship, etc. Volunteers can not be recruited for help with medical or personal care needs such as
bathing, transferring or toileting. Our Volunteer Coordinator, Marie Tominna, will go through an extensive recruiting, screening and training program to find a good volunteer match. (This process can take one to four weeks). Once the volunteer has had a background check and training, information can be shared so the family and the volunteer can arrange for a mutually acceptable volunteer schedule. Volunteers will be asked to commit to a minimum of six weeks of service. Families may request as many volun-
teers as they like and there is no charge to use this service. Volunteers will be recruited wherever there is a need throughout the state. If you have questions regarding this program, please contact Marie Tominna, Volunteer Coordinator, at 248-680-6540 or at mtominna@alsamichigan.org. We welcome your input and feedback as we begin this exciting program and look forward to the opportunity to help our PALS and their families further.
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Get the Most Out of Your Doctor’s Appointment If you’ve ever left a doctor’s office and been completely frustrated to realize you forgot to ask the one question you thought was most important, you’re not alone. Even when you feel you have plenty of time with your physician -- and that sometimes seems to be increasingly rare – it’s easy to find yourself talking about symptoms and problems that may not have been your highest priority. Some people would rather avoid issues and problems, hesitant to trigger a string of new tests or examinations. Others find it’s not the physician who is rushing; they themselves want to get out of the office as soon as possible. And many people are embarrassed to ask questions they deem highly personal, especially if they’re related to topics like elimination, sex, depression or discouragement. People with ALS may be reluctant to report symptoms they think could be a sign that the disease is progressing because they’re afraid of what issue or intervention may be just around the corner. No one wants to invite potentially bad news. But there are some things you can do before the doctor’s visit to help ensure you get your questions answered and your needs met: Think about your questions and write them down. Put your
highest priority issues first. Often people save their ―toughest‖ questions for last, thinking it would be easier to move through the quick-and-easy ones first. But that approach could mean the appointment ends too soon to get to those issues, or there’s little time left to deal with them. Don’t assume the physician will mention something if it’s important, and if he or she doesn’t bring it up, it probably isn’t an issue. Physicians rely on patients to report their symptoms and questions. Don’t wait for a physician to ask you if you have any questions. Studies show that physicians do not ask for questions in 50% of office visits. If the visit is winding down and you haven’t had a chance to ask your questions, just jump in and do so. You might want to give your physician your written list of questions at the beginning of your visit; that way he or she can get a quick overview of your concerns. Don’t worry about looking or sounding stupid in front of your physician. Doctors don’t assume you know a lot of medicine and health. Be sure to tell your physician about life events that are occurring; it may help him or her understand what stresses you’re under and better interpret your
physical and mental health. Financial concerns, a death in the family, relationship issues all can affect your health and wellbeing and are not inappropriate topics to bring up with a physician. As your appointment comes to a close, be sure to ask about the action plan. Given what has been examined and discussed, what should you expect? When will you get the test results? Who will call for a physical therapist appointment? When should you come back for a follow-up visit? Do you need a prescription for the drug he or she said you should try? If you’d like a copy of test results, ask for it, look it over when you get home and file it. y
Don’t assume the physician will mention something if it’s important….
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Advice from the Trenches
Having a helper in your home can relieve tension and improves your quality of life.
Sandra Lesher Stuban is an RN who was a 38year 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. Q: I think I may need to hire someone to help me. I have never done anything like this before and I’m nervous. Can you offer advice so I don’t make any mistakes? A: An assistant in your home can definitely be a tremendous asset. It not only lessens the burden on your loved ones but also puts you back in control of managing your home and activities. To get started takes a little planning and budgeting. First, decide where you will place your help wanted ad. A local newspaper is a
good place to start, or Craig’s List (online) can be an effective (and free) approach to advertising the position. Other options may be your church bulletin board or your homeowner’s association or community newsletter. Consider the wording of your ad carefully. Also decide beforehand how many hours a day you need help and how much you will pay this individual that fits your budget. Second, anticipate many calls. In the current economic environment, you may receive hundreds of responses, so be prepared. I find it helpful to take notes on each candidate from the initial telephone conversation. Then schedule an interview for each one. This is very time consuming but also very necessary. Third, prepare for the interviews. I like to type up a list of my expectations and job responsibilities and ask the candidate to read it out loud to me. This serves two purposes – there is no question what the job entails and it identifies those with reading problems. Your list may include such things as running errands,
preparing meals, driving children to activities, walking the dog, helping you with anything you can no longer do, assisting you with bathing, toileting, dressing, walking, and eating, taking you out, and much more. Have your questions prepared as well, such as – What is your job experience? Have you ever had a job like this before? Why should I choose you? How would you describe yourself? If the candidate is a CNA (certified nursing aide), ask to see their certificate. Also ask for two references. And finally, after each interview, jot down your notes and impressions. Fourth, make your choice. After reviewing your notes and contacting references, choose the ideal candidate. This person may not necessarily be a CNA, simply a caring individual may be the perfect choice. Having a helper in your home can relieve tension and improves your quality of life. And often this person becomes like a member of the family.
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The National ALS Registry is Here! All People with ALS Can Enroll in the Registry TODAY
The ALS Association is thrilled to announce that the National ALS Registry is now fully operational! Every single person with ALS across the country can begin enrolling in the Registry today! Just go to www.cdc.gov/als, sign up and join tens of thousands of people with ALS nationwide in adding your name to the fight for a treatment and cure. Full implementation of the Registry is the culmination of more than six years of advocacy by The ALS Association and advocates across the country who worked with Congress to introduce and enact The ALS Registry Act and secure the funding necessary to move this critical research project forward. Because of your advocacy, every person with ALS will be counted in the fight against Lou Gehrig’s Disease. Because of your advocacy, the federal government is launching what may become the single largest ALS research project ever created. And because of your advocacy, we are beginning a new era in which the Registry will capture an unprecedented amount of information about the disease that could lead us to discover the cause, treatment and cure for ALS! However, we need every person with ALS in the United States to enroll in the Registry! Therefore, if you are living with ALS, go to www.cdc.gov/als and enroll today. We also encourage you to share news about the Registry with your support group, friends, email list and everyone else you know with ALS or who may know someone with ALS. Spread the word! Learn More The ALS Association has created a special section of our website dedicated specifically to the National ALS Registry. The site includes instructions on how to enroll, answers to frequently asked questions, brochures and flyers that you can print and share, and much more. People with ALS also can access the Registry directly from the site. The ALS Association would like to thank every person with ALS and every advocate across the country for helping to make the Registry possible! You truly are making a difference in the fight for a treatment and cure. If you have any questions about the ALS Registry or would like assistance enrolling, please contact us. Thank you!
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The ALS Messenger
RESEARCH UPDATE: From The ALS Association, National Office October 15, 2010 Recently, BrainStorm Cell Therapeutics, a company based in Israel, announced that they received approval from Israel’s ministry of Health to run a Phase I/II clinical trial of mesenchymal stem cells in ALS patients. Mesenchymal stem cells are adult stem cells derived from the patient’s own bone marrow. The trials will be conducted at Hadassah Medical Center in Jerusalem and will primarily be a safety study, but the investigators will also look for indications that the approach may have beneficial effects. Similar efforts are ongoing in a small Phase I safety trial at Louisiana-based TCA Cellular Therapy. Unlike those being tested at TCA Cellular Therapy, the mesenchymal stem cells generated by BrainStorm have been modified to produce neurotrophic factors, factors that enhance motor neuron survival. For information about the Brainstorm trial, visit http:// www.clinicaltrials.gov/ct2/show/NCT01051882?term=brainstorm+ALS&rank=1, and for the TCA Cellular Therapy trial, visit http://www.clinicaltrials.gov/ct2/show/NCT01082653? term=TCA+and+ALS&rank=1. On September 12, the first U.S. embryonic stem cells trial in humans was announced. Geron, based in San Francisco, received FDA approval for treatment of patients who have sustained spinal cord injury. This is a very important development as it will pave the way for additional studies using human embryonic stem cells. However, the first stem cell trial in the U.S. to test the safety of human fetal stem cells is already underway. This trial involves injecting treated stem cell into the spinal cord of ALS patients. While in the early stages, these trials will provide important information about injection techniques. In addition, several research groups including ALS Association-funded researchers in Dr. Clive Svendsen’s laboratory are making progress in generating the data to lead to new stem cell treatments for people with ALS. San Diego investigators, led by Dr. Larry Goldstein in collaboration with Life Technologies, are exploiting human embryonic stem cell technologies to replace astrocytes, the cells that surround motor neurons and are also affected in ALS. His team received an $11.5 million grant from the California Institute for Regenerative Medicine (CIRM) to generate the necessary data required to take this into clinical trials within four years. Scientists continue to exploit the opportunities that induced pluripotent stem (iPS) cells offer. As part of a consortium effort, the National Institute of Neurological Disorders and Stroke recently announced that the first iPS cell lines for ALS have been deposited in a central repository so that investigators world wide will have access to this resource. Visit http://ccr.coriell.org/ Sections/Search/Advanced_Search.aspx?PgId=175&ct=C&result=y&coll=ND for more information.
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!