November 2010 Newsletter

F igh t ing Lou Gehr ig ’ s Di sease i n Mi ch igan

Inside this issue:

Ask A Doc

Chapter Calendar

2

3

National Family Care-

giver’s Month!

4

Clinic Information

Volunteer Program to

Launch this Month

5

Get the Most Out of Your

Doctor’s Appointment

6

Advice from the

Trenches

7

The National ALS Regis-

try is Here!

8

Research Update! 9

Volume 1, Issue 8 November 2010

The ALS Messenger

Happy Veteran’s Day!

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 de-

veloping ALS as the general popu-

lation. The ALS Association is com-

mitted to serving veterans and

their families who are coping with

this terrible disease. Our advocacy campaigns have resulted in millions of dol-

lars 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 ex-

penses 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 866-927-

8273 for more information and help in getting your application started.

Again, to all of our Veteran PALS, thank you for your service!

The ALS Messenger Page 2

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 so-called, ―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 dif-ferent 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 Babin-ski sign, (a reflex that is a sign of damage to the nerve paths connecting the brain to the spinal cord). Signs of LMN dam-age 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 [email protected]. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals

personally.

The ALS Messenger Page 3

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! Inter-

ested in wrapping? - contact Marie @248-680-6540

Sun Mon Tue Wed Thu Fri Sat

1 2 3 4 5 6

7 8 9 10

Kalamazoo Sup-

port Group

11

Statewide Call-in

Troy Support Group

12 13

14 15

Bay City Support

Group

16

Statewide Call-In

17 18 19 20

21 22

Fenton Support

Group

23 24

NO Grand Rap-

ids Support

Group

25

Survivor’s Luncheon

26 27

28 29 30

November Chapter Calendar

The ALS Messenger Page 4

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 Care-

There.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 Care-

There.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 caregiv-

ers 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 employ-

ees' 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!

The ALS Messenger Page 5

Michigan Offers Extraordinary ALS Care

The following clinic is also

recognized by The ALS Asso-

ciation:

The MSU at Mary Free Bed Rehabilitation Hospital 360 Lafayette Suite 308 Grand Rapids, MI 49503

616-493-9727

ALS Patients living in Michigan have the ability to choose between sev-eral excellent ALS cen-ters to visit for their multi-disciplinary clinical care. With two certified centers of excellence and another clinic going through the process, there are many venues for treatment in Michigan. For more infor-mation on the clinic near-est to you, please contact your Patient Services Co-ordinator .

Michigan is home to the following certified centers:

Henry J. Hoenselaar Clinic Henry Ford Hospital Neurology K-11 2799 West Grand Blvd Detroit, MI 48202 313-916-2835 The University of Michigan Health System 1914/0316 Taubman Center

1500 E. Medical Center Dr Ann Arbor, MI 48109 734-936-9020

We are pleased to

announce the

launch of our new

Volunteer Services

Program!

New Volunteer Program to Launch This Month

teers as they like and there is no charge to use this service. Volun-teers will be recruited wherever there is a need throughout the

state.

If you have questions regarding this pro-gram, please contact Marie Tominna, Volun-teer Coordinator, at 248-680-6540 or at mtominna@alsa-

michigan.org.

We welcome your input and feedback as we begin this exciting program and look for-ward to the opportu-nity to help our PALS and their families fur-

ther.

As part of our continued commitment to supporting ALS patients and their fami-lies, we are pleased to an-nounce the launch of our new Volunteer Services pro-gram! 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 pre-

sents.

Beginning November 15th, caregivers and fami-lies will be able to email or call our offices with a re-quest for a volunteer place-ment for help with tasks like yard work, grocery shop-ping, household chores, companionship, etc. Volun-teers can not be recruited for help with medical or personal care needs such as

bathing, transferring or

toileting.

Our Volunteer Coordi-nator, Marie Tominna, will go through an ex-tensive 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, in-formation can be shared so the family and the volunteer can arrange for a mutually acceptable volunteer schedule. Volunteers will be asked to com-mit to a minimum of six

weeks of service.

Families may re-quest as many volun-

ALS Association Certified CentersSM

are medical facili-ties that have been certified by The Association as dis-tinguished regional institutions recognized as the best in the field with regard to knowledge of and experience with ALS

The ALS Messenger Page 6

Get the Most Out of Your Doctor’s Appointment

Don’t assume the

physician will

mention something

if it’s important….

physical and mental health. Finan-cial concerns, a death in the fam-ily, relationship issues all can af-fect 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 appoint-ment? 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.

by

If you’ve ever left a doctor’s of-fice and been completely frus-trated 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 discourage-ment. People with ALS may be reluctant to report symptoms they think could be a sign that the dis-ease 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 ques-tions 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 lit-

tle time left to deal with them.

Don’t assume the physician will mention something if it’s im-portant, 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 ques-tions. Studies show that physi-cians 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 ques-

tions, 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 occur-ring; it may help him or her un-derstand what stresses you’re under and better interpret your

The ALS Messenger Page 7

Advice from the Trenches

Having a helper

in your home

can relieve

tension and

improves your

quality of life.

preparing meals, driving children to activities, walking the dog, helping you with anything you can no longer do, assist-ing you with bathing, toi-leting, 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 your-self? If the candidate is a CNA (certified nursing aide), ask to see their certificate. Also ask for two references. And fi-nally, after each inter-view, jot down your notes and impressions. Fourth, make your choice. After reviewing your notes and contacting ref-erences, choose the ideal candidate. This person may not necessarily be a CNA, simply a caring in-dividual may be the per-fect choice. Having a helper in your home can relieve tension and improves your qual-ity of life. And often this person becomes like a member of the family.

Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colo-nel 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. Al-though she is completely paralyzed and uses a ventilator, she lives an ac-tive life as a writer, nurs-ing 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 man-aging your home and ac-tivities. To get started takes a little planning and budg-eting. 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) ap-proach 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 care-fully. Also decide before-hand 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 eco-nomic 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 in-terviews. 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 en-tails and it identifies those with reading problems. Your list may include such things as running errands,

The ALS Messenger Page 8

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 add-

ing 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 en-act 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 advo-cacy, 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 Reg-istry! 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 con-tact us.

Thank you!

The ALS Messenger Page 9

RESEARCH UPDATE: From The ALS Association, National Office

October 15, 2010

Recently, BrainStorm Cell Therapeutics, a company based in Israel, announced that they re-ceived 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 pa-

tient’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 tech-niques. 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 col-laboration with Life Technologies, are exploiting human embryonic stem cell technologies to re-place 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 infor-

mation.

Create Awareness with an ALS Wristband!

675 E. Big Beaver, Suite 207 678 Front Street, Suite 159

Troy MI, 48083 Grand Rapids, MI 49504

The ALS As soc ia t io n , M i ch igan Cha pte r

People with ALS and their families come first in everything we do. Our vision is a world without ALS!

FIGHTING LOU GEHRIG’S DISEASE

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 informa-

tion on getting your wristband!

Troy—248-680-6540

Grand Rapids—616-459-1900

Phone: 248-680-6540 616-459-1900

Fax: 248-680-6543 616-459-4522

Email: [email protected] [email protected]