New Life with MS Group: When: October 21, Time: 11am 1pm. Where: Springdale Rec Center Lawnview Ave Springdale, Ohio 45246

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1 A Newsletter for Life with MS Groups October 2010 Volume 3 Issue 1 Inside this issue: Calendar Healthy Tips for Mind and Body Special points of interest: Page 5 Gilenya is approved MS STOPS PEOPLE FROM MOVING. WE EXIST TO MAKE SURE IT DOESN T. JOIN THE MOVEMENT. A Moment of Reflection Every once in awhile an event happens in your life and you take a moment to pause and reflect. Recently, I experienced an unexpected death of someone not close to me, but close to someone I care about. While attending the services, I came to realize I had missed an opportunity to take the time to meet an incredible, kind, caring person simply because I was too busy, doing, well, what everyone does living their life. In the midst of all these thoughts, I was thinking about my (only been a month & I consider you mine ) Life with MS group leaders and how amazing I think you are to take the opportunity to offer your experiences, your time, & your knowledge to people you may have known for years or to those you may have just met. So, I just want to say thank you & I m proud to be associated with such great groups. Rebekah

2 October 5 - Newly Diagnosed Contact Helen Bisdorf, October 7 Northern 1pm Contact Debbie Blake, October 9 College 10am Contact Carolyn, October 11 6pm Contact Amber, October 12 Butler 7pm Contact Judy, / Jan October 12 - Miami 7pm Contact Sam, October pm Contact Deena, October 13 South 6:30pm Contact Deneko, October 21 But You Look So 6pm ContactNancy,nancy.stewart@unisonindustries.com October 27 Care 7pm Contact Jody, October 28 7 pm Contact Rebekah, October 31 - Ross 3 pm Contact Larry, New Life with MS Group: When: October 21, 2010 Time: 11am 1pm Where: Springdale Rec Center Lawnview Ave Springdale, Ohio This group will meet every third Thursday of the month. Contact Angela Drye (513) for more information and details. Another new Life with MS Group I am in the process of starting up anew Life with MS in Portsmouth, Ohio. They are planning on meeting the 4th Thursday of the month at the Southern Ohio Medical Center. If any of you would like to speak with the new leader to offer him words of encouragement or advice let me know & I can get you in touch with him. Page 2

3 Healthy Tips for Mind and Body Maybe you have had a chance to look at the International Society of Ortho-bionomy website we told you about last month! ( Ortho-bionomy is a non-invasive and gentle self-therapy for those living with discomforts that many people living with MS experience. A local practitioner, Carole Poffinbarger, has offered to give a few specific examples of how to give yourself this type of body work. We will discuss these examples of self-delivered procedures in the next issue, so let us first explain a few major tenets of ortho-bionomy: (1) The body has the ability in many instances to self-correct, (2) The intention of this body work is to allow the body to release its injurious holding patterns and return to balance, and (3), Mindful breathing is an essential part of the positions and gentle physical manipulations that you do. Ortho-bionomy is based on the important principle that if one exaggerates a position of discomfort, the body sees this as an opportunity to self-correct. This does not mean that you purposely increase your pain. Actually, you would move out of a painful body position to one that is more comfortable and then you gently tweak that position in an exploratory fashion, moving only slightly in the direction of the position that gave you pain. Then you allow yourself to witness the ability of the body to bring you to a point of healthy alignment, i.e. a release. For example, let s say there is tension in your shoulders and you feel like your shoulders are close to your ears. You would exaggerate that pattern, bringing them even closer to your ears and breathing into it, holding for about thirty seconds and then slowly bring back, allowing the body to adjust and align itself to a more balanced sate. The release from pain or restriction does not necessarily happen right away, but comes as you repeat the movements over a period of days or weeks. Ortho-bionomy is a subtle therapy and as such, may seem a little difficult to understand. Once the concepts sink in, it might just prove to be a great enhancement to one s well-being. Blessings, Brenda C. Kayne Page 3

4 Random items of interest Ideas for recruiting new members: Place notices in key posting areas: churches, schools, organizations, clubs, shops, hospitals, nursing homes, community bulletin boards, libraries, post offices, etc. Print and distribute a flyer describing your group. Speak to clergy, doctors, administrators, agency directors, social workers, media personnel and nurses (i.e., anyone who might be willing to spread the word). Contact your local hospital social services department, community health education department, neurologists and other doctors who treat people with MS. Talk to people who have started Society self-help groups and ask what methods they used to recruit group members. Talk to public relations staff at local industries/businesses about getting ads in their periodicals or newsletters. Determine which agency/ organizations print community or social service directories, contact them and request your group be included. Write a brief notice and ask that it be placed in the church bulletin/newsletter. Consider other newsletters (e.g., YMCA). Write a letter to the editor of your local newspaper explaining the group s purpose (it is likely to be printed if you comment in response to a current article or editorial). Page 4 Write a brief radio spot and send it to local radio stations requesting they air it as a public service announcement. Advertise the group on local/cable TV. Create your own group facebook account. If you have any other ideas/suggestions let me know: Rebekah.schraer@ohg.nmss.org Couples Weekend Retreat To give you & your groups a heads up during 2011 we will be hosting 2 weekend couples retreats, one in the Greater Cincinnati area & the other in the Piqua area. If you have any suggestions as to accessible locations, please send them my way & I will gladly look into them. MS Cafe We will also be hosting MS Café s during MS Café is an opportunity for people to enjoy dinner compliments of the Ohio Valley Chapter, where those attending are able to learn about the Society & I am able to hear area s of interest.

5 Gilenya is approved The era of oral drugs begins On September 22, the U.S. Food and Drug Administration approved fingolimod capsules for reducing the frequency of MS attacks and delaying the accumulation of physical disabilities in people with relapsing forms of MS. This is a milestone in MS therapy. The new medication, under the brand name Gilenya (pronounced Jil-EN-ee-ah), will be available as a first line treatment, meaning there are no recommendations for people to try other MS therapies before trying Gilenya. Novartis, the manufacturer, says the drug will be available for prescription in coming weeks. Gilenya is a new approach to controlling MS. It blocks receptors on some of the same T and B immune cells that have been implicated in causing MS damage. The drug causes some of these cells to remain in lymph nodes, inhibiting them from migrating into the brain or spinal cord. A second oral MS med is under review Last July, the FDA agreed to give priority review status to EMD Serono s cladribine tablets with the hope of an approval decision this December. Cladribine is a chemotherapy drug that is used to kill T and B cells in the immune system and thus slow down the attack on myelin. The arrival of therapies that do not require regular injections greatly increases options especially for people who are not doing well on their current drug or who have deep aversion to needles. An informed choice While oral drugs have long been a goal for researchers, the choice will not be quite as simple as putting down a needle and popping a pill. Gilenya is a powerful drug with potential side effects and risks as well as possibilities. The label carries warnings about these, including decreased heart rate after the first dose. The drug also increases risks of certain infections. In the clinical trials, two deaths from herpes infections occurred in people who took Gilenya at a higher dose than the level that has been approved. A number of pretreatment tests will be required and people will be monitored for potential lowered heart rate for six hours following their first dose. On the up side, clinical trial data suggest that Gilenya has a stronger impact on reducing relapse rates than a standard drug, Avonex, and also delays accumulation of physical disability. For more details, including Frequently Asked Questions, and references to the clinical trials, please visit nationalmssociety.org or call us for a printed copy of the September 22 News Bulletin. Page 5