Volume 3, Issue 1 (Spring 2004)
One Monterra Court, Rockville, Maryland 20850 · 301-838-9555
They say the success of a business is determined within the first year. Well, we are way past that and pleased to announce that we are still here and thriving. Exciting things are planned for the year 2004. With luck and your help, we can continue to grow to be the best MS resource in the Washington Metro area!
This year, we are really putting the “FUN” into fund raising! We have already started on our restaurant hunts (thanks to our devoted volunteers!) Look for a super treat in the mail soon and enjoy! We also hope to have a delicious and interesting event in the fall. Patience everyone, you’ll know in good time.
Our newsletters can now be found on our web site along with our calendar so knowing the MMSC latest is a breeze. We’ll also try to keep you informed with flyers and emails. Watch for us – we’ll be everywhere!
Stay warm and fit this winter,
Woodstock Groupies Unite! Will Cannabis be approved to relieve spasticity, pain, depression and anxiety in MS patients? There have been a few studies done with inconsistent results. Proper clinical trial are necessary to test the claims of benefits of marijuana as well as any adverse affects.
New Board Members
The MMSC is proud to announce the addition of two new Board Members to our esteemed Board of Directors: Elizabeth Dresing and Marla Schulman. We are also sad to say goodbye to both Patricia Long and Christina Mohr. Thank you both for your efforts.
Delight Your Taste Buds
The Jewel of Bethesda
Come one, come all
on Monday, March 29th
from 5:30 pm – 9:00 pm
at 7940 Wisconsin Avenue, Bethesda
Choose from a tasty array of
Soups, Appetizers, Salads,
Beef & Ribs, Chicken and Pasta
as well as a Kid’s Menu.
25% of all dinner proceeds benefit
There is public parking behind and across
the street from the restaurant
The Montgomery Multiple Sclerosis Center
The Heuga Center
present a telephone conference on
Spasticity in MS
Please join us as
Brian Hutchinson, PT
President of The Heuga Center
President-Elect of the Consortium of MS Centers
Karen Theriot, MD, Physiatrist
Co-Director of the Spasticity Clinic
Medical Director of Spalding Rehabilitation Hospital
discuss Spasticity assessment and management from
both a medical and non-medical standpoint
including the use of Botox, Baclofen,
Zanaflex, Neorontin, and the Intrathecal Pump
Wednesday, March 24, 2004 at 7pm
Registration Required at 1-800-856-3823
sponsored by a grant from
Sex and MS
Shhhhh. This isn’t a topic most people want to discuss. That may be OK if the participants are two able bodied people, but what if one has physical or mental issues which need to be addressed? What if you are dating and need to broach the subject with a potential partner? It may not be as hard as it seems to learn how to speak with your partner and/or physician about sex.
For starters, potential partners may have basic curiosity about your disability. Dr. P. Sándor Gardos suggests “[s]peak about your disability as it naturally occurs in conversation. If you are asked directly about it, answer with details that are informative but not to the degree that you launch into a 30 minute speech about the ins and outs of your condition. If this date turns into more of a serious relationship, there will be plenty of time to discuss the specifics of your disability…Let him/her know that you will take control and be the guide until you two get the swing of things.” He also recommends that “[y]ou may need to talk about the ways that your body moves or doesn’t move, any pain that you experience in sexual positions, and any bowel or bladder issues that you may have.”
Dr. Fred Foley recommends the following tips:
“Agree [with your potential partner] on when and where to talk about sex. Do not accuse, criticize or blame partner… Be aware that sexual feelings and preferences change, especially as MS symptoms fluctuate. Use nonverbal communication assertively, ie, take his or her hand and demonstrate desired type/area of touching. Do not expect perfection. Do your best to maintain a sense of humor throughout.” (Dr. Foley’s remarks are taken from an article by Rosalee L. Blumer in the August 2003 issue of MS exchange.)
MMSC Artist Studio
Grace your home
with an original masterpiece
of MS proportions created by you!
Please join us
on Sunday, April 4th
from 10:30 – 12:30 am
at Temple Beth Ami
14330 Travilah Road, Rockville
Fun for the whole family regardless of ability or disability.
Dexterity not required!
Let’s demonstrate our creativity and skill
with the help of the most simple of technique and color.
We promise the results will be magnificent!
Reservations are required
to ensure the correct number of supplies.
Call 301-838-9555 before 3/29/04
Who Knows MS?
Where do you go to find the most knowledgeable MS professionals? Easy, The Consortium of MS Centers and the American Academy of Neurology. From research to study to help, you’ll find what you need there … or at least your MS professional will.
At last year’s AAN meeting, some interesting tidbits came up. One group of Doctors stated that oral prednisone taper after treatment with IVMP (IV Methalprednisone or Solumedral) for an MS relapse appears to have no effect on neurologic disability.* In English, they found that there is no benefit to taking Prednisone orally after having the Solumedral IV.
Another group, determined that MSers who participated in either a 6-month yoga class or exercise class showed significant decrease in fatigue. There was no improvement in cognition although there was some suggestion for improvements in mood.** Similarly, “research has demonstrated that regular aerobic exercise (riding a stationary cycle for 30 minutes, 3 times/week) is beneficial for patients with MS … Many types of exercise can be performed by individuals with MS and even a little bit of activity is better for health than being sedentary.” ***
* Christina Caon, Wendy Ching, Alexandros Tselis, Robert Lisak, Omar Khan
** Barry S. Oken, Shirley Kishiyama, Daniel Zajdel, Dennis Bourdette, Jane Carlsen, Mitchell Haas, Cinda Hugos, Dale Kraemer, Julie Lawrence, Michele Mass
*** Andrea T. White, Ph.D., from an article in the MSQR, Volume 23, Number 1, Spring 2004
Hints from the Heuga Center
A WELLNESS APPROACH FOR FAMILIES LIVING 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. Traditional medicine generally seeks to avoid or minimize signs, symptoms or disability. 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 US. A survey of 337 women, done by Stuifbergen in 2001 *, 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 forms of 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. Excellent resources include: The Heuga Center, the Montgomery Multiple Sclerosis Center, Inc., The Consortium of MS Centers and the National MS Society. Web sites for these organizations can be found on the MS Organizations page of www.montgomerymscenter.org.
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.
*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 Volume 12, Number 1, February 2001. pages 9-21.
Coltun Family Foundation
Dr. and Mrs. Daniel Deutsch
Tom & Katie Clark
Bibhuti Mishra, M.D.
Mongolian Barbecue Restaurant
Mr. and Mrs. John Asher
Mr. and Mrs. Rodney Hader
Roger & Susie Liddle
The Honorable and Dr. DeLawrence Beard
Paul & Nancy Dickson
Terri and Adam Fagan
Richard and Judy Freeman
John & Veronica Gilbert
Doreen Halpern and Elmer Shuty
Lenore and James Jasman
Harry & Letitia Pfanz
Scott & Maxine Silverman
Volunteers and In-Kind Contributors
Marion and James Ake
Sarah K. Anderson
Howard and Dorothy Arendt
Ms. Michele Arnold
Robert and Marjorie Bedingfield
Doris A. Criswell
Edward and Elizabeth Dent
Linda and John Derrick
Jane M. Ditzler
Stephen & Margaret Earll
Mr. and Mrs. Robert Ewing
Ewing, Hines & Associates Ins.
Ms. Marguerite T. Feld
James W. Freeman
Mr. and Mrs. William Karppi
John B. Klimkiewicz
Ms. Ruth A. Larsen
Mr. and Mrs. Harry Leland
Mildred Bland Miller
Robert & Sharon Nesmith
Helene R. Perkins
Harry and Letitia Pfanz
Mrs. Frank H. Price
Philip and Carol Rohr
Pearle and John Russell
E. Joseph and Elizabeth Verlie
Patricia and Donald Waggener
(Sara’s 90th Birthday and Sara and Max’s 70th Anniversary)
Fredda and Jerry Kray
Mr. and Mrs. Mel Mevorah
Rita & Bob Modell
Dianne Modell/Robert Hoffman
Dita and Michael Borofsky
Lorraine and Sanford Durst
Mr. and Mrs. Leonard Schnitzer
Family of Leanor L. Wexler
William and Carolyn Wexler
Beverly, Lindsay & Jessa Paulvin
We are pleased to announce that web shoppers now have a world of stores at their fingertips. We are now affiliated with Buy for Charity and Amazon.com as well as Greater Good. The best way to access these malls and make sure that the MMSC gets credit is to enter them from our web site at: www.montgomerymscenter.org. The first time you enter, you will need to register and may need to select the MMSC as your designated charity but from then on you are all set up.
Please, shop – shop – shop to your heart’s content.
A small reminder that we have the following items for sale.
Purchases can be made by calling 301-838-9555.
Silk Eye Pillows:
Zoom Balls (arm exercise)
General Wellness Cassette
General Wellness CD
Healthful Sleep Cassette
Healthful Sleep CD
Multiple Sclerosis Cassette
Music I for Meditation Cassette
Energy and Me
FREE Stair Lift Anyone?
Once again we have a wonderful citizen out there who has a stair lift and chair he would like to donate to someone who really needs it. The unit is a Bruno CRE 2100 electra ride 3 Stairway Elevator. It runs 6 stairs to a landing, makes a 90 degree right hand turn and continues 9 stairs to the top. The stair lift requires no separate electrical breaker. It has a battery charger which plugs into a wall plug when not in use. The donor is willing to deliver it to Montgomery or Fairfax County or the Washington D.C. area. If you are interested, please call 301-838-9555.
We Are Guests
To all those who come to Temple Beth Ami for our exercise classes and/or Support Groups, please remember that we are the guests of the Temple. They have graciously opened their arms to provide us the space we so badly need in order to provide our services. It is essential that you take extra special care of the rooms, furniture and doorways. Please do not use things that are not ours nor bang into things when you move around. The staff at the Temple is wonderful and belongs to the Temple, not us. Please treat them with the utmost of respect and gratitude.
To the Temple staff, again we say, Todah Rabah!
Conquer Ski Liberty!
Get out there and show them who’s boss! Ski Liberty has a fantastic adaptive program with great volunteer instructors who just want to have fun. They have equipment for all types of disabilities … bi-skis for those of us who want to sit down on the slopes with someone holding on and directing us … mono skis for the pros … outrigger poles for those who want to ski standing but want a bit of help and much more.
We hope to plan a trip for winter 2005. Anyone interested, please drop us a line at email@example.com.
Our long wait has not been in vain! On February 17th, Biogen Idec and Elan Corporations announced that they expect to submit to the U.S. Food and Drug Administration (FDA) an application for approval of ANTEGREN® (natalizumab) as a treatment for Multiple Sclerosis (MS). The companies expect to submit the filing mid-year 2004.
No affiliation w/NMSS
Please be aware that we are an independent non-profit organization in no way affiliated with any other including the National MS Society. All monies donated to us go to us for our programs. Money donated to the Society benefits their programs. We are the Montgomery Multiple Sclerosis Center, Inc. and can be found on the web at www.montgomerymscenter.org.