Volume 4, Issue 1 (Spring 2005)
One Monterra Court, Rockville, Maryland 20850 · 301-838-9555
Happy Spring to All! The earth is coming alive with color and our enthusiasm for life is overflowing! So much is planned I don’t know where to begin.
This year is ripe with activities which involve families and friends. Please take advantage of them. Watch yourself and the MMSC burst with growth and a zest for life.
Come and enjoy the Bark in the Park where we hope to raise funds and awareness. If you have wheels or feet this outing is a treat! Motor through our golf tournament and munch through our dessert silent auction to the tunes of the Ron Kearns’ Jazz Quintet. You can do this!
The annual Consortium of MS Centers conference is in Orlando and ‘I’m going to Disney World!’ I’ll keep you informed on the newest happenings in the world of MS so you can enjoy life without always being ‘tuned in.’
Where to Go? What to Do?
Remember MSers … the MMSC is YOUR center! We schedule teleconferences on the topics you request and family recreational activities at places you want to visit. We want to plan what you want, but we can’t if you don’t tell us. Please tell us what you want by leaving a message at 301-838-9555, mailing us at One Monterra Court, Rockville, Maryland 20850 or sending us an email. We need to know what you want so we can plan accordingly.
In your response, please indicate what topics you would like to hear for future teleconferences; what places you and your family would like to visit within the DC metro area including Baltimore and in what activities you and your family would like to participate? Field trip suggestions are greatly appreciated.
What’s that word on the tip of my tongue?
What was I just saying?
Why did I come in this room?
If you think you have some cognitive issues
related to your MS
please join in on a teleconference with
Ms. Patricia Bednarik, SLP
University of Pittsburgh MS Center
on Wednesday, April 27th
at 7pm Eastern Time
Ms. Bednarik will review cognition and the areas most affected. She’ll explain why these difficulties arise and give a background on how cognitive deficiences differ with each person. She’ll discuss the difference between cognitive ability and cognitive function and will offer strategies and expectations to combat problems.
Please join us by registering
on the eve of the teleconference
at least 10 minutes before the conference begins
by calling 1-800-257-7087.
What a smashing success! We are thrilled to have had such wonderful success with our first Heuga JumpStart program. 100 people attended (we had a wait list for more) and the evaluation sheets came back with glowing remarks. The speakers were all excellent and full of helpful information. We hope to be able to host another Jumpstart with different topics in the future. Stay tuned …
Biogen Warns on Avonex
[Biogen Idec] “and the Food and Drug Administration advised doctors of the possibility of liver damage in patients taking the multiple sclerosis drug Avonex … The FDA released a company written letter to health professionals describing the potential risks that will be added to the drug’s label. The new label notes that severe liver injury and cases of liver failure have been reported, albeit ‘rarely,’ in patients taking the drug, sometimes in combination with other substances known to harm the liver.”
It should be noted that each interferon medication is known to cause potential liver damage. Everyone on one of the interferon injectables should have their liver enzymes checked periodically through a routine blood test to establish their enzyme level.
(taken from TheStreet.com, By Robert Steyer, 3/16/2005)
Maryland Works to Back Stem Cell Research
California may not be the only state to approve financing for stem cell research. “Maryland is one of more than a dozen states considering funding embryonic stem cell research, after President Bush’s decision in 2001 to restrict federal support. Advocates on both sides of the legislation are lobbying lawmakers heavily.”
(Taken from an article in Washpost.com, By John Wagner, March 22, 2005.)
Another Good Samaritan
Our heartfelt gratitude goes out to Donna Alexander and the Estate of Dorothy Berger for donating both a Lazy Boy Electric Lift chair and a hospital bed with a therapeutic mattress. These items were badly needed by the new recipient and were a great help. Thanks for thinking of us.
Backyard Garden Gala
Watch your mail boxes for the upcoming Backyard Garden Gala. We hope it will be a huge success and thank you in advance for your support.
Our greatest thanks to those who made donations to keep the Center alive and thriving in 2004:
Michael Malchow Charitable Gift Fund
MS Foundation $1,800
Coltun Family Foundation
Artery Group, LLC
Judi & Danny Deutsch
Beth Dressing & Craig Goodman
Mr. & Mrs. John Asher
Dr. & Mrs. Norton Bonnett
Dita & Michael Borofsky
Lottie & Ronald Hader
Rene Halpern & Elmer Shuty
Dr. & Mrs. Steven Janowitz
Roger & Susie Liddle
Kathleen McIntyre & John Ferguson
Robert & Rita Modell
Susan Rivkind & Richard Zucker
Schreiber Translation, Inc.
John & Elizabeth Spencer
Judy & Len White
$1,501 – 9,999
$500 – 1,500
$101 – 499
Farjat Ahmed & Kerry Kircher
The Honorable Delawrence Beard & Dr. Lillian Beard
Len Blackman & Joan Kahn
Stephen & Carolyn Bou
Dan & Jolie Brown
Ellen & Klaus Buchegger
Verna Marie Chiarello & Holger Mueller
Joanne & Norb Cohen
Dr. & Mrs. George Dougherty
Bob and Sarah Dresing
Lorraine & Sanford Durst
Gaye & Bob Earll
Terri & Adam Fagan
Nikki Gettinger & Scott Lathan
Dr. Leonard Goldman & Dr. Lisa DeMarco
Sue Gurland & Mark Wasserman
Lisa & Ken Handelman
Mark & Janice Hansan
Nina & Bob Helwig
Terry & Diane Hiebert
Israela & Amir Holtzman
Perry & Susan Hookman
Lenore & James Jasmin
Dr. David M. Katz
Nancy & Michael Kay
Joe & Dana Kromash
Grace & Irwin Lebow
Jack & Laura Levengard
Seth Maiman & Marissa Brown
Jen & David Model
Ed Modell & Merle Rockwell
Fred & Mary Morris
Rebecca Nitkin & Paul Saltzman
Dora Pachajoa & Jose Lopez
Beverly, Jessa & Lindsay Paulvin
Lane Potkin & Jodie Jacobs
Laura & Ed Rich
Jim & Ellen Robinson
Wendy Rothman & Jeff Zyontz
Gene & Gail Rubinson
Billy & Rose Sahm
Marilyn and Barry Scheiner
Laurie Schniebold & John Weisenstein
Barbara & Len Schnitzer
Glenn & Jill Schwartz
Dan & Esther Steinhauer
Norman & Jeannette Sturman
Judy Vreeland & Bill Eaton
Lawrence & Judith Winkler
Arnold & Isabel Winters
Susan Wittan & Ernie Crow
Mary Ann Zamula
Todah Rabah TBA
As we have entered into our fourth year of providing services to MSers and their families, we offer our thanks, once again, to Temple Beth Ami. Our programs have been held at the Temple since the MMSC’s inception and we would not be here today without the space provided to us. Thanks again to the staff who is always so helpful and has granted us the privilege of utilizing such a beautiful building.
Welcome Ike and Ben
As the MMSC is constantly seeking new ideas and contacts, we are proud to welcome The Honorable Isiah Leggett to our Board of Directors and Dr. Ben Thrower to our Advisory Board. May you both help us to thrive and become the MS Center we aim to be.
Are You Ready for the Heat?
Summer is just around the corner and Washington gets hot and humid. What are some tips for making it through a metro summer?
- Drink, drink, drink! Keep your body well hydrated;
- Stay in an air conditioned environment as much as possible;
- If you are sitting outside, keep your feet soaking in a tub of cool water;
- When at the pool, stay in the water to keep cool or wet your towel and sit on it (you’ll be surprised how it’s cool temperature will keep yours down!);
- Hold an ice block on the back of your neck;
- Direct a fan on you or get a squeeze bottle with a fan attached so you can cool mist yourself; and
- Invest in a cooling vest to really keep out the heat!
Medicare Reconsiders Claims Criteria for Wheelchairs
“For people with disabilities, motorized wheelchairs can be a great way to improve mobility, especially if the government will pick up most of the tab for the pricey machines, as Medicare does. But reports of fraud in 2003 led to a crackdown by the Centers for Medicare and Medicaid Services that has some manufacturers, suppliers and beneficiaries complaining the changes went too far.”
Unfortunately, many users and assistive device companies were abusing the system leaving those who really needed the chairs at a loss. The CMM was at a loss to fix the problem and has come up with a few feasible changes.
“It anticipates changing to a ‘functional’ definition to determine who gets a chair in other words, can a person do daily activities without one? It also proposes requiring physicians to have face to face contact with patients before a prescription for a chair is written ….” (Taken from an article by Cindy Skrzycki, Washpost.com, January 18, 2005.)
Maybe these criterion will help get the devices to those who need them.
Hints from Heuga
A Wellness Approach for Families with MS.
Wellness is a term that has gained increasing popularity in recent years. Wellness generally focuses on physical, psychological and spiritual aspects of one’s life. Wellness is a term described by Ardell in 1977 as “a conscious and deliberate approach an advanced state of physical and psychological/spiritual health.” The key points in this definition include the facts that it is ‘conscious and deliberate’ and that it is an ‘advanced state.’ Traditional medicine generally seeks to avoid or minimize signs, symptoms or disability. This is an important approach, particularly when dealing with a chronic condition such as MS. It is important to treat symptoms such as spasticity, fatigue, and bladder dysfunction through medications and non-medication interventions. In addition, it is important to take advantage of disease modifying agents which reduce or slow disability. However, it is only part of the approach that is necessary.
When an individual seeks ‘wellness’ they are attempting to improve overall health and quality of life. Why is this important for people with MS? One of the primary reasons is that MS is not fatal. Therefore people with MS need to practice good health behaviors in order to decrease secondary conditions such as heart disease, cancer and stroke, the top three killers in the U.S. A survey of 337 women, done by Stuifbergen in 2001 (1), showed:
- Less than 50% of the women routinely perform exercise/physical activity behaviors
- 1 in 5 women engaged in some type of leisure time activity
- Less than half of the women reported adequate calcium intake
The lack of health promotion behaviors, identified in this study, places an individual at greater risk for secondary complications such as heart disease or osteoporosis. In addition, the study showed decreases in reported incapacity for those who practiced health promotion behaviors. Therefore, those who participated in physical activity, stress management and good nutritional habits didn’t feel as disabled as those who did not practice these behaviors.
There are many programs available for people with MS to address wellness for people with MS. The Heuga Center (www.heuga.org) has been providing health promotion/wellness programs for people with MS and their family members for the past 20 years…The Montgomery Multiple Sclerosis Center’s (www.montgomerymscenter.org) programs also emphasize a wellness approach.
More research is being done to determine the benefits of wellness programs and components of wellness for people with MS. The results have demonstrated improvements in physical and psychological health measures.
Good health promoting behaviors require commitment and realistic goal setting. In addition, support from family and friends has been shown to improve adherence to these behaviors. Therefore, seek the advice which will help you with goal setting and look into programs which provide feedback from colleagues, professionals and help you make the commitment to better health.
(1) Stuifbergen AK, Becker H.,Health Promotion Practices in Women with Multiple Sclerosis: Increasing Quality and Years of Healthy Life. Physical Medicine and Rehabilitation Clinics of North America, Vol. 12, Num. 1, Feb. 2001, pgs 9 – 21.
No this isn’t a good bye letter to an old boyfriend. It is a well deserved and heartfelt thanks to a gentleman who spends his spare time and energy tinkering with our web site to make it look so great. Although he may not know it, we get praise from initial visitors as well as return viewers. If you want to see why, please visit www.montgomerymscenter.org.
Thanks, John, for all you do!
How many of you are guilty of buying on the internet without using our charity mall? The stores are the same. The merchandise is the same. The buying process is the same.
Just one more step … enter through our web site and make sure you are registered to send all donations to the MMSC.
It couldn’t be eaier!
Shop at all of your favorites from Dell to 1-800-FLOWERS … from Amazon.com to Barnes and Noble … from Office Depot to Mrs. Field’s. We offer 3 malls to choose from and receive the most benefit from the Greater Good. Please help us by spending smart. We thank you in advance for your support.
Blood Tests and MRIs
Why bother with these tests and how often should you get them? If you are on any or a combination of medications, routine blood tests are essential to monitor organ enzymes. “The two major reasons for ordering an MRI of the brain are (1) to make a diagnosis of MS and (2) to evaluate possible progression of the disease.” (By Jack Burks, MD, MSAA, The Motivator, Winter 2005, page 38.)
800 Pounds of Chocolate???
If you love the stuff the way Karen does, you would have done it too. What better way to raise money for the MMSC than by selling your favorite delectable chocolate to friends? If you want to feast on these morsels or help to sell them, call 301-838-9555. Each bar (2.25 oz.) is $1.00 and there are 24 in a case.
Why are Stem Cells Important?
The nature of MS is that damage is caused to both the brain and the spinal cord. The mature brain and spinal cord have a limited ability for self-repair. Stem cell therapies offer replacement strategies for damaged cells. (Taken from an article written by Rosalee L. Blumer, MS Exchange, Volume 9, Number 1.)
Care Giver Depression
When a person is diagnosed with MS their entire family suffers. Researchers in Rome, Italy, sought to clarify the relationship between depression in care givers and the health of the MS patients they care for.
“The study included 133 patients with MS and their care givers… The results were striking. Neurological impairment, disability level, emotional state, and patient well being were significantly correlated with depression in care givers. In addition, change in a patient’s disability was associated with a corresponding worsening or improvement in the care giver’s depression.” Put simply, the more depressed the care giver, the worse the MS progressed and vice versa.
“It … … health professionals identify those care givers in need of psychological support and then develop appropriate interventions to treat them. Identifying and treating care givers suffering from depression may help patients avoid institutionalization and reduce the use of high cost support services…” (Taken from Dec. 2004 MS Scan)
Please remember to drop us a line with your new street and/or email address. We can’t contact you if we can’t find you.
We Put the ‘FUN’ into Fund Raising
We are a non profit organization. All money supporting every program is donated. We don’t want to come out and ask for donations so we use our creativity. At the same time, our MSERS can get out and have some fun. Stay tuned for more restaurants, a golf tournament (you can get a cart and watch if you can’t play), Bark in the Park and our 5th Anniversary Jazz Dessert Silent Auction.
Stem Cells May Heal Multiple Sclerosis Damage
“Stem cells might be able to reverse damage caused by multiple sclerosis (MS), say Italian researchers. The technique is a long way off from human use, but early tests on mice were encouraging… The new study used stem cells to offset the ravages of multiple sclerosis. The stem cells weren’t the controversial kind taken from embryos. Instead, they were taken from adult nerve tissue called neural stem cells… Neural stem cells can start a chain reaction that leads to myelin production…
Lots of work remains to be done on the technique, including trying it with human stem cells…”
(Taken from an article in WebMD Medical News, by Miranda Hitti, reviewed By Brunilda Nazario, MD on Wednesday, December 1, 2004)
Tysabri – Where is It?
In November 2004, the long awaited FDA approval of Tysabri (then known as Antegren) was given while its Phase III trials were still in progress. The drug was initially dispensed early in 2005. On February 28th, Biogen Idec and Elan announced that 2 of the people in a Tysabri trial had been diagnosed with Progressive Multifocal Leukoencephalopathy (PML), a rare and frequently fatal, demyelinating disease of the central nervous system. One of those patients had died while another was hospitalized. The news caused the company to voluntarily pull the new and extremely promising drug off the market. On March 30th, after going back over all of the trial participants, they found that an individual who participated in the Tysabri trial for Krohn’s Disease and who died in 2003, was mis-diagnosed as to the reason of death and did, in fact, also have PML. All three patients were also on immuno suppressant medications.
Biogen Idec and Elan have suspended dispensing Tysabri for all trials and treatment. Until the research on all previously treated patients is complete, the drug will continue to be unavailable. It is still unknown if Tysabri will return as an MS medication.
GlaxoSmithKline (GSK), another pharmaceutical company, was in the process of conducting trials on an oral medication with a very similar makeup to Tysabri. Due to the occurrences of PML, the FDA suspended the GSK trials as well.
If you participated in a Tysabri trial or had begun your treatment, please call your physician for more information.
Medicare Rules on Drugs
On January 21st, the “Bush administration … unveiled rules for the new Medicare drug benefit that guarantee[s] patients access to a wide variety of medicines while giving insurance companies potent tools to control costs.” “The rules say that every prescription drug plan must provide ‘adequate coverage of the types of drugs most commonly needed’ by Medicare beneficiaries.” They also “say that a plan can establish a list of preferred drugs and can refuse to pay for other medicines.” In response to insurance company concerns, the plan “allows the use of formularies and says insurers must cover only one drug in a therapeutic category or class if only two drugs are available and one is clearly superior… But if a doctor certifies that a particular drug is medically necessary for a patient, the drug plan must cover it, regardless of whether it is on the list of preferred medicines.” (Taken from an article by Robert Pear, Washpost.com, January 22, 2005)
Where does this leave MSers? It seems the best bet would be to get your physician to certify which drug you are to be on as medically necessary.
Thanks so much to those who contributed to us in the 2004 CFC campaign. We really appreciate your support! We have applied again for the 2005 campaign and will keep you posted.
Thyroid Hormone May Treat Multiple Sclerosis
“Supplementing the body’s own thyroid hormone during a critical phase of multiple sclerosis may help repair the damage caused by the disease, according to new research. [A recent] study showed that treating rats with a multiple sclerosis like disease with thyroid hormone[s] helped protect them from further nerve damage and sped up the repair of already damaged nerve fibers…
In the new study, published in the Nov. 16 issue of the Proceedings of the National Academy of Sciences, researchers tested the effects of thyroid hormone treatment in rats with a multiple sclerosis like disease … The study showed that in the rats with multiple sclerosis like disease, treatment with thyroid hormone[s] during a phase of early nerve damage resulted in protection of the myelin sheath in nerves. In addition, treatment with thyroid hormone[s] accelerated the development of precursor cells into cells which can form new myelin sheaths in already damaged nerve fibers.
Researchers say the treatment appears to work by stimulating the development of cells known as OPCs. In multiple sclerosis, these cells fail to further develop into myelin making cells. But the study showed that when rats were treated with thyroid hormone[s] at a point when a large number of these precursor cells were available, the treatment triggered these cells into action…”
Further studies are required. (Taken from an article in WebMD Medical News, By Jennifer Warner, Reviewed By Brunilda Nazario, MD on Wednesday, November 10, 2004.)