February 2012
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Inside this Month's Exchange eNewsletter . . .
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Ask the Doc: Q & A with Edward Kasarskis, MD, PhDEdward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center 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: We just heard on the evening news that there are new drugs for the treatment of multiple sclerosis. Could any of these medications benefit an ALS patient? Donna, Indiana A:The short answer to your question is, unfortunately, no. But to understand why, it's important to know more about the differences between multiple sclerosis (MS) and ALS. People with ALS and their families often ask me whether these diseases – which both have the word "sclerosis" in their name – are similar. They both affect the central nervous system (the brain and spinal cord) and both can cause significant paralysis, immobility and severe disability. So superficially, they might appear to be in the same family of diseases and hence, respond to the same drugs. MS is an autoimmune disease that causes damage to nerves through the body's own immune defense system turning on itself. The body's immune cells attack the myelin sheath, the protective covering that surrounds the axons of nerve cells. When this nerve covering is damaged, the electrical nerve signals that usually connect one part of the brain to another slow down, or even stop. Think of this as an electrical "short-circuit" within the central nervous system. If the electrical signal is stopped, the message never gets through, and the intended action never occurs. With ALS, the pathways from the brain to the spinal cord also show "sclerosis," but it's because the nerve cells themselves and their connecting axons have degenerated and disappeared. Both involve what can be called "hardening" or sclerosis (loss of the myelin wrapping) but by two completely different mechanisms. With MS, the symptoms can come and go, often with long periods of few or no symptoms at all. With ALS, clear progressive weakness is the norm. Most people with MS will continue to walk and function with minimal disability for 20 or more years after they develop the disease with proper treatment. Some of the symptoms of MS can mimic ALS: muscle spasms, problems moving arms or legs, difficulty walking, weakness, muscle spasms, and trouble speaking, chewing and swallowing. MS tends to affect women more frequently than men, while ALS is the opposite. MS is typically diagnosed earlier in life, between 20 and 40, while ALS most often is diagnosed in the 60's. When neurologists are deciding whether a person has MS, they can find more definitive results from testing (e.g., an MRI) to confirm the diagnosis compared to ALS. For example, a person with MS may have white blood cells, evidence of chemical breakdown of myelin, and excess antibodies in the spinal column, identified through a spinal tap. Frequently, one can actually see the loss of myelin on the MRI scan in MS. The medications used to slow the progression of MS include interferons (such as Betaseron®), Copaxone®, and sometimes methotrexate or other chemotherapy approaches. They're all used to reduce the autoimmune attack that is the cause of dysfunction in MS. The new drugs that you heard about on the evening news are unlikely to help people with ALS; they all are designed to modulate the immune system at one level or another. There have been attempts to assess the impact chemotherapeutic agents and other immune therapies have on ALS, but they were found to not be effective in stopping the progression of the disease. There is little evidence that these drugs work for people with ALS. It is still the goal of research that one day we will have similarly effective drugs for ALS as we now do for MS. If you would like to submit questions for a future Q & A, please send your questions to alsinfo@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. Advice from the Trenches
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel 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. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer and nursing leader. Q:Valentine's Day is a big reminder to me of the problems I'm having feeling like I can't be the spouse I once was. I feel that our relationship has changed so much. What can I do to maintain the love in our relationship – and to be able to keep giving back – when I am personally dealing with the day-to-day challenges of ALS? A:Love, intimacy and sexual relations are all an important part of a committed relationship and marriage. They have been found to contribute to your well-being, increase your sense of contentment and improve your overall quality of life. These are important factors when you are struggling with adapting to the progressive paralysis of ALS. So it's important to acknowledge that some things have changed, such as you may not be able to reach for your spouse's hand or initiate a hug or sex. However open communication with your spouse can convey your interest and desire to actively maintain your healthy marriage relationship and even continue physical intimacy despite your physical limitations. Continue to enjoy your common interests together. Even with physical limitations many possibilities exist. You can watch a football game on TV together. Read the same book and talk about it. Watch a movie snuggling next to each other. Go to a museum. Attend a child's school event together. It's helpful to remember the shared interests that sustained your marriage before ALS and know they are still possible, perhaps with a few adaptations. When your spouse is also your part-time or full- time caregiver, it's important to distinguish between the physical contact of giving care and the loving touch of intimacy. With Valentine's Day approaching, it's a good time to tell your spouse how much you love him or her by sending a valentine e-card or a floral arrangement, or giving a sentimental or thoughtful gift. Also send sporadic and unexpected emails, instant messages or text messages to communicate your love and affection. Can a paralyzed person be sexually active? Can a paralyzed person using respiratory assistance (i.e. Bipap or ventilator) have sex? The answer to both questions is definitely yes. In 2006, the International Ventilator Users Network (http://www.ventusers.org/) did a survey to explore sexual activity among home ventilator users. Almost a quarter of the respondents used noninvasive ventilation (Bipap) and the others used invasive ventilation (trach and ventilator). The average length of time they had been using assisted ventilation was 15 years. They all said they engaged in sexual activity. The respondents cited the importance of an able-bodied partner willing to be creative and experiment, the use of pillows for positioning, and pre-positioning of ventilator tubing. To learn more: http://www.ventusers.org/edu/valnews/VAL_20-4p4-9.pdf. If you would like to submit questions for a future Q & A, please send your questions to alsinfo@alsa-national.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. Armchair Travel: Easy, Free and Fun
While people with ALS often enjoy traveling, the challenges and costs are sometimes daunting. For those who find the idea of discovering new places and learning about other cultures exciting but don't want to hop on a plane, train or automobile, there's an easy and fun alternative: armchair travel. The concept is simple: access the experiences vicariously through websites, blogs, books, videos, virtual tours, and more. There are a plethora of opportunities available, each with a different angle and perspective. Many focus on particular aspects of travel or regions, while some follow an intrepid voyager literally around the world. Here are a wide range of opportunities and approaches:
Participate in these Educational Web CallsUPCOMING CALLS AND WEBINARS For People and Families Living with ALS February 21 (Tuesday)
"What You Should Know about FTLD and ALS", with Catherine Lomen- Hoerth, MD, neurologist and director of the ALS center at UCSF Medical Center in San Francisco, California
For information about how to join this call, please visit http://www.alsa.org/ and click on "Our Research," and then "Research Webinars."
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February 27 (Monday) at 11:00 am PT (2:00 pm ET)
"Computer Access for People with ALS", with Alisa Brownlee, ATP, ALS Association, Greater Philadelphia Chapter
Call-in toll-free number (US/Canada): 877-668-4490
Meeting Number: 827 783 675
Meeting Password: TopicCall2012
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