Volume 3, Issue 2 (Summer 2004)
One Monterra Court, Rockville, Maryland 20850 · 301-838-9555
Welcome Cicadas! May you be fruitful and multiply but leave our plants alone! Yup, it’s that time again … summer … heat … and time to get out and smell the roses. How many things do you have planned for this summer? Let’s all celebrate and get out in the world.
I’m starting my summer off with a trip to Toronto for the 2004 annual conference of the Consortium of MS Centers. I’m hoping to gather lots of tidbits from the newest in MS research to the handiest assistive devices. I’m even taking my scooter on the plane so I won’t get too tired as I enjoy all the conference has to offer. Stay tuned for all I learn.
The rest of the summer will continue to be busy. We have so much happening with the Center … another teleconference … a fun day at Dave and Buster’s and all the rest we continue to do. Our web site is constantly changing and now includes our newsletters.
Have a great summer and stay cool!
Antegren Submitted to FDA
On May 25th, Biogen Idec and Elan Corporation announced that they have submitted Antegren to the US FDA for the treatment of MS. 2100 patients are currently enrolled in the AFFIRM or SENTINEL 2 year trials to test the efficacy and safety of Antegren. Although only one year has passed, the results thus far have been very promising. Antegren’s purpose is to slow the progression of disability in MS and reduce the rate of clinical relapses. Our hats off to both Biogen and Elan and we wish you a speedy approval.
Thanks to all who came out to share a great meal in support of the MMSC and thanks to the folks at the Saphire Café for hosting us. The food was awesome and every contribution helps!
No more excuses! Go out with your family and see all D.C. has to offer. They can bike and you can scoot. Of if you are confined to a chair, use that and simply take advantage of the tour guides. How? A great new company has sprung up – BIKE THE SITES! Now affiliated with Scootaround, they provide a complete service for touring any and all of the DC sites, from monuments to museums to special activities on the mall. You can use your own equipment or rent from them. You can tour by yourselves or take one of their guides with you. There is no better way to enjoy all that our Capital has to offer. Simply go to www.bikethesites.com or call them 202-842-BIKE. Live your lives to the fullest and see what you’ve been missing!
Like the OPTIMS Study, Berlex is conducting the ABOVE study to explore the effect that dosing frequency has on the prevention of multiple sclerosis (MS) relapses. Specifically, the effectiveness of two well-known, FDA-approved MS treatments, Betaseron® (Interferon beta-1b) and Avonex® (Interferon beta-1a) will be compared. The study will measure each drug’s ability to: Prevent multiple sclerosis relapses; halt disease progression, and reduce MRI activity.
Do you need a new wheelchair, scooter, shower chair or ramp? We have the place for you. They are helpful, shipping is usually free and their prices are discounted. The easiest way to see all they offer is to visit our web site (www.montgomerymscenter.org), click on Buy For Charity, click on 1-800-WHEELCHAIR and shop away. By doing this, you get a great deal and the MMSC gets a donation. If you have questions, you can call them at 1-800-320-7140. Help is just a website away!
Many MS medications and lack of mobility can weaken bone strength and density. Osteoporosis is easily detected through a simple bone density scan. To combat any loss of bone strength, many physicians prescribe Fosamax. Taken in varying frequencies, this medication can keep you healthy in an area you don’t need to be concerned about. Business Week reported on March 17, 2004 that Fosamax works to protect bones five years after treatment halted. A simple solution to a potentially serious problem!
Thanks to all who listened in on our Spasticity Teleconference. The speakers were great and the topic was of particular interest to many MSers. If you missed the Teleconference it will soon be available on our web site (www.montgomerymscenter.org). Click on the Lectures link and on the Spasticity in MS teleconference link. Happy listening!
Multiple Sclerosis and the Family
By Nina Wasserman
Multiple sclerosis (MS) is a chronic disease that places a great psychological toll on a person’s life … “Unfortunately, MS often affects people between the ages of 20 and 40, who are just beginning to establish themselves professionally and start families,” says Cindy Richman, Director of Client Services at the Multiple Sclerosis Association of America. “Suddenly, the person with MS has to change all of his or her life plans and future expectations.”
Reinventing one’s life in regards to family, social, and working relationships can cause many hardships, especially when a person is forced to confront issues such as disease progression and loss of autonomy. Many with MS simply find the endeavor overwhelming and experience social withdrawal, self depreciation, and loss of purpose and self esteem. This is where the dynamics of strong family relationships [and support groups] become more important than ever.
As the characteristic disability of MS progresses, duties and roles may have to be shifted from the person with MS to the spouse, partner, or children. This may involve the reprioritizing of schedules and time commitments, as well as monetary and transportation resources, which can strain the existing family structure …
In Sickness and in Health
According to Dr. Marco Rizzo, Associate Director of the Yale Multiple Sclerosis Treatment and Research Center in New Haven, Connecticut, “The most difficult adjustment persons with MS have to make is usually with their spouse or partner.” The grind of everyday living, where the spouse or partner finds him or herself doing the brunt of the cooking, cleaning, garbage disposal, and other household chores, can cause a sense of resentment and frustration …
…A partner will most likely not understand MS fatigue. He or she may assume that the person with MS is just not trying hard enough… According to Dr. Rizzo, “The individual with MS may wake up feeling great, but only has an eighth of a tank of gas. At 10:30 AM, the person feels as if he or she has hit a brick wall and may have to lie down for several hours.”
Many people with MS also report one spouse or partner typically accepting the diagnosis more readily than the other, which can heighten tension in the relationship. An argument over whether or not to do a specific activity may be a mask for the strong emotions each person has about the illness. Moreover, decision making for the future becomes stressful because of the unpredictability of relapses and disease progression …
Communication is the most important component in maintaining a healthy relationship between parent and child. A child’s sense of trust and a parent’s approachability about the topic are the foundation for making MS a positive family challenge…
Young children especially require a lot of energy that a person with MS may not have … Though there may be many activities that a parent with MS cannot do, this does not mean that quality time together must be forfeited. Alternative activities can be enjoyable for both parent and child. For instance, it may not be feasible for the parent and child to play basketball, but reading a book together after school may be another activity that both can share …
It is also important to keep in mind that teenage children will not always act in an ideal fashion. They are embroiled in the trials and tribulations involved in the transition to adulthood, and may not easily adjust to the reality of MS. In fact, it is not uncommon that teenagers are embarrassed by a parent’s disability …. Responding to these issues in a positive way can be the foundation of stronger, healthier relationships ….
[So often, we hear from parents with MS that their children are perfectly fine and unaffected. NOT SO! Many children are hesitant to voice their feelings and their parents thus assume their kids are not affected by the changes MS brings. It is for these reasons that the MMSC offers four different support groups for children from Kindergarten through 12th grade where they can feel safe asking questions and venting frustrations.
Additionally, Care Givers need an outlet as well (although they are frequently hesitant to admit this.) The solution? Our monthly Care Giver support group. Similarly, our Family Recreational Programs do wonders for families who want to share time together participating in something all family members can do. The activities are fun and the family interactions are essential.]
The temperature is rising and MSers need to stay cool. Here’s a reminder on some tips to ward off the heat while enjoying the beautiful sunshine:
- Spray yourself frequently with water;
- Keep a fan aimed at your face (some spray bottles have fans);
- Put an ice block from your cooler on the back of your neck;
- Rest your feet in a tub of cool water while you lounge;
- If you are in a swim suit, wet the towel you are lying on with cool water; and remember to
Drink, Drink, Drink!
Nutrition and MS
A proper diet can make a huge difference in how an MSer looks, and feels and may even play a role in the disease’s progression. Individuals with MS have a tendency to neglect their diet due to fatigue, difficulty in preparing food and even swallowing. These habits can actually add to MS difficulties (is preparing food too tiring or can a lack of food bring on fatigue?)
Fortunately, a healthy diet is an easy one. Low fats (particularly saturated fats), oily fish or supplements, fresh fruit and vegetables and Vitamin D can make all the difference. Listen in on our June 24th Teleconference for the hints that will make you feel and look great!
Would you go to a chiropractor for a runny nose? How about a settlement attorney for a car accident? Do you want a car salesman fixing your brake trouble? With luck, you’ve answered no.
The same holds true for neurologists. They all know about the nervous system and how the brain and spinal chord work. Some focus their practices on Parkinsons Disease; some on Lymes Disease; Lupus or Spinal Chord Injuries. And yes, some focus on the nuances of MS.
Because MS is such an unknown and there is no cure, it is essential that your Doctor know the most up to date information available. Research is being conducted on so many aspects of the illness. New symptomatic drugs are constantly being discovered. Different medications and dosages can make all the difference in how you feel and the progression of your illness.
If you have been diagnosed with MS but have a mild case with few flares, a general neurologist can usually keep your MS in check. However, if you are suffering or progressing, it is helpful and comforting to know you are being treated by someone who really knows the ins and outs of MS.
How do you know if you are seeing the right Doctor? Do you like him/her? Are your questions answered? Is your condition stable or progressing? Do you have to request certain medications or treatment or are you directed to follow a plan? Is your Neurologist aggressive enough for you or are you sitting and watching yourself deteriorate? Answer these questions and you will know if you are being treated by the right Doctor.
Hints from Heuga
Choosing a Rehabilitation Therapist
(The author refers to rehabilitation therapists to include physical therapists, occupational therapist and speech language therapists.)
For someone living with MS, choosing a rehabilitation therapist requires some research. Individuals with MS have many unique needs in terms of symptom management and rehabilitation techniques. Therefore, it requires a therapist interested in working as a member of a team and understanding some of the unique aspects of living with MS.
A good example of the uniqueness of MS symptoms is that of fatigue. Many people with MS experience fatigue as a primary symptom of MS. Treating MS fatigue, through rehabilitation, is often very different than fatigue in other individuals. In addition, there is often underlying fatigue, not related to MS, which needs to be addressed. Therefore, appropriate assessment and treatment is necessary in order to effectively manage fatigue. Add in the effects of heat sensitivity, spasticity and weakness on fatigue and it can be pretty complicated. Therefore, a rehabilitation therapist with experience in managing the complexities of neurologic conditions becomes a high priority.
The primary factor you should consider when choosing a rehabilitation therapist is YOUR interaction and communication with the therapist. You want to find someone who has an interest in treating people with MS, listens to you and your concerns and work with you toward YOUR goals. The therapist should work with you in establishing your ultimate goals. This may require discussion about whether the goals are realistic and attainable. It will also require discussion about the steps and process to achieve the goals. For example, if a goal is to improve walking endurance then you will work closely with the therapist in defining the steps toward that goal. It may mean setting short-term goals of increasing overall endurance, strength and/or flexibility. It may also include the use of ambulatory aids or energy conservation techniques. The therapist will use their knowledge and expertise in devising the short-term goals necessary to reach your long term goals.
Many times the therapists (and other healthcare providers) are dictated by insurance coverage. In these cases, it is sometimes possible to get exemptions to visit a therapist with expertise in MS (such as those at an MS center). It often requires phone calls and letters from you and your physician to demonstrate the need for a specialist evaluation, but it is possible.
Working with a rehabilitation therapist needs to be a partnership which requires open communication from both parties. It is important for each to learn from the other. In a chronic disease, such as MS, this partnership is often much longer than with acute conditions. The therapist is someone the person with MS can rely upon for advice as symptoms change.
Attitude is Everything
Are you a Boo-whooer? Are you convinced that your life ended with a diagnosis of MS? Do you sit around instead of going out and embracing life?
The whole purpose of the MMSC is to teach MSers and their families to LIVE THEIR LIVES TO THE FULLEST within the limitation of their illness. We strive to keep you informed on the best devices to aid you in your daily lives and getting around. We offer classes to help you keep fit, flexible and social. Our support groups are available to help you get through the tough times.
We tell you about accessible trips and places to go because we want you to get out there and experience all life has to offer. Take advantage of our services. Hold your head up high.
Remember, you have MS but it DOES NOT have you!
My Story: A Photographic Essay on Life with Multiple Sclerosis
by Amelia Davis
Managing the Symptoms of Multiple Sclerosis, Fourth Edition
by Randall T. Schapiro, M.D.
Multiple Sclerosis: A Guide For the Newly Diagnosed
by Nancy J. Holland, R.N., Ed.D., Jock Murray, M.D., Stephen C. Reingold, Ph.D.
Early in 2004, Berlex introduced a pre-filled diluent system for mixing the medication. In order to keep the diluent ph neutral (non-stinging upon injection) some mixing is still required. Berlex took great pains to simplify the process as each injection comes in a sealed container with everything needed to prepare the shot. New autojects were designed to fit the new syringes and a special handle was included for those who find it difficult to hold small objects. The entire package is to be kept at room temperature eliminating the cold feeling upon injection and making travel easier.
This month, Berlex sent out a special tool (the BETA buddy) to all who use Betaseron. The buddy aids in removing the powdered medication cap (for those who have difficulty with fine motor skills) and a hole for the needle cap to eliminate accidental needle pricks. Thanks to those at Berlex who have made this system painless and simple.
OK, we all know that MS is a chronic progressive illness that is different in every person. The likelihood is pretty good that the disease will progress over the course of a lifetime. It’s the degree of progression which remains the unknown. Scientists and Neurologists are constantly coming up with new tests to help determine what will happen and how to halt deterioration.
To hear the latest, join us at Dave & Buster’s on July 17th. See the flyer for information on how to register.
Biogen Idec Warns of MS Drug Shortage
By Ross Kerber, Boston Globe, May 7, 2004
Cambridge drug maker Biogen Idec Inc. yesterday warned of possible shortages of its Avonex drug for multiple sclerosis because of manufacturing problems with some prefilled syringes … Biogen Idec said that it can continue to supply patients currently on Avonex with the drug but that it is asking doctors to prescribe a less-convenient powdered form to new patients until it resolves the issues
Move, See, LIVE!
How many times have you forgone going somewhere (including an airplane) because you thought you would tire too easily or not be able to get from place to place? Those days are gone!
Enter, Scootaround, a wonderful company who provides scooters and wheelchairs for rent in all of the United States, Canada and many international locations. They can be found at www.scootaround.com or via telephone 888-441-7475. You tell them what you need and where you are going and they get the scooter or chair to you. Don’t let your MS keep you stuck! Get out there, travel and see the sites!
The Montgomery Multiple Sclerosis Center
presents a day of learning, food and fun at
Dave & Buster’s
White Flint Mall
Saturday, July 17, 2004, from 12 – 3 pm
Bibhuti Mishra, MD
Neurology Professor of Medicine and Surgery
The Progression of Multiple Sclerosis
followed by lunch and games
(free game cards will be distributed)
Open to all MSers and Family Members
(no young children)
Cost = FREE
Registration is Required by July 14th
by calling 301-838-9555
The 56th Annual American Academy of Neurology Meeting
Neurologists from all around the world gathered in April to talk about the latest. Lots of MS studies were discussed. The highlights from some are shown below:
OPTIMS Study – Is it beneficial and tolerable to increase Interferon doses in progressing relapsing remitting patients? Apparently, a debate continues regarding the optimal dose for each individual MS patient. Results? Side effects are actually lessened at the higher dose. No news yet on whether it worked better.
Laquinimod is a new oral medication being tested to see if it suppresses MS development. It has shown effectiveness in suppressing disease development in mice with the MS-like illness. The study showed fewer MRI lesions. It did not demonstrate fewer relapses or disability but was safe to use. Further studies are required.
Daclizumab (Zenapax®) – This new medication is being studied to determine if it can improve symptoms in patients with relapsing/remitting and secondary progressive multiple sclerosis (MS). So far, therapy with Daclizumab in MS patients is very well tolerated. Side effects are minimal. Treatment can result in sustained improvement even in patients not successful with other therapies. Using Daclizumab alone and/or with another therapy is still being explored. Further trials are being conducted.
Mobility Matters: Assisted Devices for People with MS
By Christine Haran, March 16, 2001, Healthology
Being able to move from one place to another is a capability most of us take for granted. But difficulty walking is one of the most common challenges faced by people with multiple sclerosis (MS) … that doesn’t mean people with MS have to give up their activities: Assisted devices ranging from foot orthotics to power wheelchairs can help restore independence in people with mobility limitations …
… People with poor balance, muscle weakness or stiffness, or those who have numbness in the foot … might benefit from a cane or crutch. A walker with four legs and wheels provides the next level of stability by allowing the person to hold onto something continually. Certain walkers have seats, which can be particularly helpful to people with fatigue.
Motorized scooters … have become increasing popular … that’s because scooters tend to be less cumbersome and more socially acceptable than wheelchairs … [and] people may bring out their scooter on an as needed basis …
People who don’t have the strength to hold up their upper body or to reposition themselves may require a wheelchair … While some wheelchairs are manual, others are electric and are usually steered with a joystick … it’s often important to have a tilt feature on the wheelchair seat so that people can shift their weight and avoid skin breakdown and pressure sores … One way for people to explore their options is to visit www.abledata.com …a federally funded project that offers information about assisted technology.
The Montgomery Multiple Sclerosis Center
Presents a Telephone Conference on
Improving Your Health
Through Diet & Exercise
Baldwin Sanders, RD
Heuga Center Consultant
Brian Hutchinson, PT
President of The Heuga Center &
The Consortium of MS Centers
Discuss strategies for using proper nutrition & appropriate
exercise to achieve overall physical & emotional well-being.
Thursday, June 24, 2004 at 7pm
To participate, call 800-366-0623
and request conference #7759796
Combination Therapies for Multiple Sclerosis
While one drug can be effective in treating the symptoms and progression of multiple sclerosis, a growing number of doctors feel the combination of certain drugs can be more advantageous. This approach can be especially beneficial in patients whose disease is progressing on monotherapy (just one drug.) But finding the right combination is not always easy. (Healthology, March 4, 2004). Some examples are combining the shots with Methotrexate, Solumedral, Novantrone, etc. to keep MS from progressing.
Cognitive problems are very common amongst MSers. How many times have you walked into a room to do something and stood there wondering what it was you meant to do? What about that word that keeps hiding on your tongue? Fortunately, solutions are easy!
The simplest thing to do is ask the person you are with to trigger your memory. Questions like, what was I about to do or what was I just telling you, can bring the whole thing back. The information isn’t lost – just misplaced. The best memory techniques are easy: write everything down on a calendar you look at frequently – if you can’t write, try typing (Outlook Express is a good program) – if you can’t type, keep a mini recorder on hand and use it.