Volume 5, Issue 1 (Winter 2006)
One Monterra Court, Rockville, Maryland 20850 · 301-838-9555
I can’t begin to express the feeling of satisfaction I get each time I receive a thank you note from one of the people with MS who we have helped in some way. The same goes every time someone acknowledges how far the MMSC has come and grown and what it does for people. That is why I started the Montgomery MS Center, isn’t it? We have come a long way and provided a great variety of services.
True, we have been forced to make many adjustments in programming and we are still far from the ultimate Center I dreamt of when we started. But we are still here and we plan to stay! It is time, however, for me to delegate and ask for help. I can’t keep doing it all alone.
The time has come to reach out to those with the knowledge and connections and ask, ‘will you join our Board?’; ‘can you help with fund raising?’; or ‘will you take on some program planning?’ In order for the MMSC to keep growing we need your assistance. There is so much more we can accomplish if we can simply get your help!
Do you want examples? No problem. Our patient education programs have been overwhelmingly received but we need to host more. Are there specific teleconferences our participants want? In addition, I get calls all of the time from MS patients who are no longer able to live alone but are not sick or senile. They feel jailed and don’t belong in nursing homes but would benefit from a group home.
We offer weekly yoga, feldenkrais and tai chi classes but what about a dedicated facility with a full time PT and the equipment to work with people of all abilities? What about fun get togethers? Do we need more support groups? What else can we provide and most importantly, WHERE DO WE GET THE MONEY TO PAY FOR ALL OF THIS?
The time to act is now. Please think about how you can help and either call (301) 838-9555 or email firstname.lastname@example.org.
PharmaFrontiers, a US company is set to begin a trial of a vaccine which it claims halts the progress of multiple sclerosis. MS experts have welcomed the research but urged caution because other vaccines have not been successful.
The vaccine being studied contains inactive myelin-specific T cells – found in the immune system. To make it, a blood sample is taken from the patient and the cells are extracted. They are then multiplied in a lab, and treated with radiation before being re-injected into the patient. The body’s immune system then recognizes these modified T cells as being damaged and attacks them, priming the body’s defense system in the same way a conventionally designed vaccine would.
Earlier trials have shown that, in some cases, all these cells are wiped out when they are re-injected. But the immune system also targets undamaged cells of the same kind – even though they are not damaged – because they have the same markers on their surfaces. In one trial of 15 patients, the vaccine reduced the rate of flare-ups by 92%. The new study will compare the progress of 100 vaccinated people who have the relapsing-remitting form of the disease with 50 who are untreated… The company claims the vaccine would only have to be given four times a year.
But MS experts say much more evidence is needed before there could be confidence in this vaccine, compared to others which have been worked on. (The Multiple Sclerosis Resource Centre, Wednesday, July 26, 2006) It is important to note that this vaccine is in the very early stages of research. It has a long way to go and many trials to conduct before it will even be considered as an approved treatment in the U.S.
A MUST READ FOR EVERYONE!
Richard M. Cohen, renowned journalist and husband of Meredith Vieira, future NBC Today Show Anchor, writes about his 30+ year battle with Multiple Sclerosis in Blindsided : Lifting a Life Above Illness : A Reluctant Memoir. Cohen describes his diagnosis in college, his productive journalistic career, his marriage and subsequent fatherhood. He discusses his denial and later realization that he can’t keep his illness a secret. Most importantly he stresses the impact on the entire family that MS brings. Light, heavy and true to life this book is essential for both those with MS, their families and those who just want to understand. It is available in regular and large print as well as audio tape recording. Don’t leave home without it!
Have you experienced swelling in your fingers or toes? Have you noticed that they occasionally take on a dark or purple tint? How about a feeling of being cold down to the bone? If so, you may have Reynauds Syndrome. This is a vascular complication not uncommon to those with MS. If you’ve experienced any of these symptoms, don’t panic. Solutions are simple. Talk to your Neurologist and/or see a Vascular specialist.
Tysabri’s risk management plan, is designed to inform physicians and patients of the benefits and risks of TYSABRI treatment and minimize potential risk of progressive multifocal leukoencephalopathy (PML).
The TOUCH program is intended to:
- Promote informed benefit risk decisions between prescribers and patients regarding the use of TYSABRI in relapsing MS;
- Minimize morbidity and mortality due to PML through early detectionwith clinical vigilance;
- Minimize the risk of PML by treating patients who are not immunocompromised;
- Warn against concurrent use with antineoplastics, immunosuppressants or immunomodulators;
- Determine the incidence and risk factors for PML and other serious opportunistic infections in patients treated with TYSABRI, as well as the overall safety of TYSABRI in the clinical practice setting.
Once Tysabri is recommended, Biogen Idec requires:
- Only prescribers, infusion centers and pharmacies registered in the TOUCH program can prescribe and distribute the drug;
- Only patients who are enrolled in the program may receive the drug;
- MRI scans of patients wanting to enter the program must be obtained before they are enrolled so that future PML symptoms can be distinguished from future MS symptoms;
- Enrolled patients must be evaluated 3 and 6 months after treatment begins, and then every 6 months thereafter;
Each patient’s status must be reported to Biogen Idec.
(Many approved physicians are now hesitant to put their patients on this regimen due to the strict requirements and the liability.)
Do you need a tax deduction? We are an IRS 501(c)(3) tax deductible organization and WE NEED YOUR DONATION! Please send your contribution to: MMSC, One Monterra Court, Rockville, Maryland 20850. Thanks for supporting us!
Movement for Living
Last fall, the MMSC presented a multi speaker educational event to discuss spasticity, the importance of exercise in combating it, the best way to fall with the least injury, techniques for getting back up and the benefits of yoga in stretching and relaxing. The speakers included Dr. Susan Pierson, Director of Spasticity and Mobility Programs and Staff Neurology at Drake Center; Pat Provance, a physical therapist with the Kernan Rehabilitation Hospital; Janice Sallitt, Clinical Director of JVS Rehabilitation in Columbia, MD; and our own Cathryn Gunnerson, adaptive yoga instructor. The event was well attended. You can view two of the Power Point presentations presented by visiting the Lecture page of our web site: www.montgomerymscenter.org.
Thank you to our Host
This fall we will begin our sixth year of providing services to the MS community in the Washington Metropolitan Area. It is a landmark we are proud and thrilled to have reached. There is so much more we want to do and growth we have yet to achieve. Most importantly though is that we would never have been able to get started or reach where we are today without the generosity of Temple Beth Ami who houses our exercise classes, support groups and other activities. To the staff and all who assist us there, we owe our most heartfelt gratitude. Todah Rabah.
HINTS FROM HUEGA
Fatigue is something we have all felt and is a normal consequence of physical or mental exertion and emotional stress. Typically, energy is restored with rest and sleep. However, Multiple Sclerosis is uniquely associated with fatigue that can interfere with all aspects of life. This type of fatigue is not as easily resolved as ‘normal’ fatigue and is the most common symptom/complaint of MS, with 75-95% of people with MS experiencing fatigue. “MS fatigue’ occurs daily, worsens as the day progresses and may worsen with heat. It often interferes with physical activity and therefore results in changes in strength, mobility and function. The biologic basis of MS fatigue is uncertain but is generally experienced as a constant underlying lassitude.
If it is determined that MS fatigue is the primary reason for fatigue, an interdisciplinary approach (an approach utilizing more than one healthcare professional in a coordinated fashion) is crucial to determining a proper treatment plan. An initial management of MS fatigue usually includes education and counseling in areas of lifestyle modifications as well as medications. The lifestyle modifications may include adjusting activity levels, time management strategies, adjusting diet and starting a prudent exercise program. Medications are also used and should be discussed with your physician to determine what will work best for you.
Physical and occupation therapists with expertise is exercise and energy conservation strategies will assess the individual and make recommendations to manage fatigue. Assessments will include evaluation of current activities, level of fitness, available equipment and environmental factors.
An activity diary is recommended in order to analyze current activities. This analysis can help the therapist and patient understand what may be making the fatigue worse and what helps in managing the fatigue. The patient and therapist work together to set realistic goals and priorities which help conserve energy.
Adaptive equipment and modifying work and home environments can be beneficial as fatigue management strategies. These energy conservation techniques may include use of mobility or self-care equipment to decrease effort with movement, improve body position with activities and provide effective compensation for activities of daily living. Finally a prudent aerobic exercise program is helpful to improve the detrimental effects of deconditioning. Consultation with a rehabilitation professional will provide the appropriate exercise recommendations to minimize deconditioning.
It has been established that fatigue is a very common symptom of MS and often difficult to manage. Medications alone are not enough. An interdisciplinary approach that includes a careful history to differentiate primary MS fatigue from secondary MS causes, education in fatigue management strategies and a guided program of regular physical activity is most successful.
By Brian Hutchinson, President
The Heuga Center
Once again we have been blessed with donations from people who could no longer make use of them. In order to maintain their privacy, the list below details what was donated leaving out the name of the donor, but to the donors … you know who you are and we can’t thank you enough!
- Foot Pedal Wheelchair
- 4 different scooters
- a low mileage Mercury Minivan equipped with a scooter hoist
We at the MMSC are honored to be able to be the middleman to provide such incredible services to those willing to give and to those who so desperately are in need. Thanks again.
New Web Site Design
John Barbee has done it again. After (is it really six years???) of keeping up our web site, he has redesigned it and it looks GREAT! Don’ forget to stop by and take a look. It has all the same great information and links and the calendar will keep you updated on our goings on. Thanks John – you’re awesome!
Tired of commercial Halloween run of the mill chocolate? Want to tantalize your taste buds with a smooth delicacy highlighted on the Food Network’s show Unwrapped? For $24 you can help the MMSC raise money by selling Sarris chocolate bars to those who will be hooked on their first nibble! Each carrying case contains 24 $1.00 bars. Chances are you’ll sell many more than 24! Call 301-838-9555 to arrange pick-up. Your friends and neighbors will be addicted for life!
More In the Pipeline:
- Oral Fingolimod by Novartis (Phase III)
- Oral Cladribine by Serono (Phase II – FDA Fast Track)
- Oral Spray Sativex by GW Pharmaceuticals (Phase III)
- Rituxan by Genentech and Biogen Idec (Phase II)
- IV Dacluzimab by Roche and Biogen Idec (approved for non-MS usage and Phase II in MS)
- Oral Laquinimod by Teva Pharmaceutical (Phase II)
METRO ACCESS RIDERS
Did you know that you can ride the metro rail or metro buses for free? Just show your Metro Access ID card and you and a companion get a free ride. Happy traveling!
Have you heard about the five seasons of the year: Fall, Winter, Spring, Summer and Road Construction?! Construction zones can be frustrating as well as a waste of your precious time. But here’s some good news there’s never a construction zone at your MMSC shopping mall to slow you down. Everything has been done to give you and your supporters a smooth, fast and trouble free shopping experience.
What can you look forward to when you shop here?
- Free parking…in your favorite chair!
- Easy access to nearly 1000 stores…using just your mouse!
- Special Savings…Internet-Only!
- No sales tax…in most cases
There’s nothing to slow you down or stop you from shopping on our store super shopping highway. Just go to the home page at www.montgomerymscenter.org, scroll down and pick from the three charity malls. Have fun and don’t forget to shop where every purchase makes a difference!
On May 30, 2006, Biogen IDEC and Fumapharm AG announced positive results from a Phase II study designed to evaluate the efficacy and safety of BG-12, a pill, in patients with relapsing-remitting multiple sclerosis (MS). The study demonstrated that treatment with BG-12 led to a statistically significant reduction in the total number of enhancing brain lesions as measured by MRI.
The multi-center trial enrolled 257 patients at sites in 10 countries in Europe. Patients took varied amounts of BG-12 or placebo per day for six months. The patient group treated with the highest dosage of BG-12 per day had a 69% reduction in MRI enhancing lesions versus those taking placebos. BG-12 therapy also indicated a trend towards reduction in relapse rate.
More extensive trials must be conducted before this drug can be considered for any approval in the US.
The FDA has issued a warning that patients with multiple sclerosis should not be given the drug Campath, which is currently approved to treat a type of leukemia. The warning comes after three MS patients participating in a study of the drug to treat MS developed severe idiopathic thrombocytopenic purpura, a blood disorder, and one died.
The Montgomery MS Center is looking for a few good men and women to chair fund raisers, public relations and/or to join our Board of Directors.
Non-profit organizations are only as good as the people who run and support them. It takes a group of caring individuals to make a organization successful. IT DOES NOT TAKE A HUGE TIME COMMITMENT!
The MMSC is very important to those who utilize it but it can’t run on its own. Can you help us? Do you have any connections? Do you have even a small amount of time to contribute? If so, please email email@example.com or call 301-838-9555. We can’t express how much your help is appreciated!
If you are the one with MS, you need to be your own advocate. Don’t expect your Doctor to keep track of your medications or when you should get your next treatment. You know your body better than anyone else. They can only help you if you supply the information they need to make the right calls. Best recommendation? Keep lists and don’t be shy!
Our greatest thanks to those who made donations to keep the Center alive and thriving in 2005:
Judi & Danny Deutsch
Robert & Rita Modell
Lottie & Rod Hader
Dr. & Mrs. Steve Janowitz
Chiswell Langhorne, Jr.
Susie & Roger Liddle
Gladys & Bob Lipton
Potomac Rotary Charities
Lane Potkin & Jodie Jacobs
Marilyn & Barry Sheiner
Rene & Elmer Shuty
Susan Wittan & Ernie Crow
Mary Ann Zamula
$500 – 1,500