MOVING TOWARD A WORLD FREE OF MS Volume 5 • Issue 3
Gateway Area Chapter
Intimacy and MS Kim, diagnosed 1986
Making the Most of Your Relationships
Intimacy means different things to different people. For some, it’s a kiss on the cheek, a romantic poem, or anything that brings two people closer. For others it is a physical connection. Either way, intimacy is an important component of a healthy, fulfilled relationship. It does not have to disappear from the lives of couples when one or both partners have MS. “The hardest part for people to accept is their ability to naturally function has been taken away from them,” explains Heather Raznick, Licensed Professional Counselor. “When that happens, we feel a disconnect from society, like we have lost the sense of belonging to a baseline community.” All of a sudden, sexuality becomes something you can’t depend on and that is a harsh realization. For most people, this is not an easy transition.
Issues with intimacy from MS affect men and women in different ways. Up to 90% of men and 70% of women with MS report having some type of sexual dysfunction, says Allison Shadday, LCSW and author of “MS and Your Feelings.” Women report a lack of sensation or loss of sexual desire and men report erectile dysfunction, among other issues. These are common, consistent sexual effects that appear with a diagnosis of MS. Primary sexual effects include: g Decreased sex drive g Altered genital sensations (numbness, pain, increased sensitivity) g Difficulty or inability to maintain erection g Decreased vaginal lubrication g Decreased vaginal muscle tone Secondary sexual effects These symptoms can arise as a consequence of MS, physical changes or treatments: g Suppressed sexual desire due to fatigue can suppress sexual desire g Sexual disfunction due to bladder or bowel problems g Discomfort due to sensory changes.
INSIDE THIS ISSUE:
CONTINUED ON PG 2
Relationship Matters Page 3
In It Together Page 5
50th Birthday Challenge Page 8
Happenings Page 17
MS Connection
FROM PAGE 1
Intimacy and MS
Tertiary sexual effects These symptoms result from psychological or social issues that interfere with sexual feelings and/or response: g Depression g Performance anxiety g Changes in self-image or body image Pain, fatigue, mobility, impotency, medications – all can contribute to feelings of inadequacy. This can lead anyone to feel disappointment in his or her body, which they may not have experienced before. “I have seen patients who have inaccurate perceptions of themselves,” Raznick said. “They distort their self-image because of perceived inadequacy. We are our own worst critics.” In addition, Raznick hears from patients who don’t know how to re-define and work at their sex life, especially when they have not had to focus on that before. “As a result, they realize they have to ramp up their communication skills,” Raznick said. Raznick spends the majority of her sessions coming up with alternatives for patients struggling with intimacy and self-perception challenges. Her goal is to help them manage and navigate their way through this new obstacle. The spouse/caregiver of the person living with MS also plays a vital role. Too often, caregivers begin to see themselves in only a “caregiving role” – as a result, intimacy takes a back seat to more pressing issues of caring for their partner. The good news is people living with MS and their loved ones can have a fulfilled, healthy, intimate relationship with careful focus and trust. Couples who have successfully figured out the roles of lover vs. caregiver tend to have balance in their lives. They participate in activities that have nothing to do with MS – this reminds them they are partners and not a team defined by the disease. “Everyone needs intimacy, and intimacy is the real issue,” says Pat Kennedy, certified MS nurse practitioner. “Or put another way, when you have sex without intimacy, the whole brilliance goes.” 2
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See Page 27 for information on an upcoming teleconference on relationships.
There is no tried and true, all-in-one solution. Each case is unique, which means each case has an individual intimacy plan that can make a difference. If improving your intimacy level is important to you, be honest with your partner. Discussion is the best way to feel close to another person. When MS problems begin affecting sexual desire, then avoiding talking can easily lead to avoiding sex. Sensory changes can make things that used to bring pleasure now bring pain and discomfort. Telling a partner what feels good and what doesn’t is essential for an intimate relationship. Confiding in a partner deepens intimacy and may help resolve fears of sexual intimacy. Identify specific challenges and figure out new ways of enjoying sexual encounters. Some resources to assist you in your new journey: g Consult with your physician. There are a variety of medications that can help with emotional/psychological, impotency issues. Plus some physician offices have literature that highlights this specific topic. You can make intimacy a part of your health care visit either with your primary care physician or your MS specialist. If you have symptoms that interfere with sexual function, tell your health care team. If you are uncomfortable talking about your sexual symptoms, then write them down and give the list to your physician or nurse. g Seek counseling – this could be individual or as a couple. g Browse the web – there are disability groups that focus on sexual issues. Some helpful sites include: American Association of Sex Educators, Counselors and Therapists: www.aasect.org and Sexuality Information and Education Council of the United States: www.siecus.org. National MS Society highlights some of the challenges people face and offers helpful tips for those struggling with intimacy issues. Visit their site at: www.nationalmssociety.org/livingwith-multiple-sclerosis/relationships/intimacy/ index.aspx. g Hire a home-health aide. This can help patients preserve separate identities, reducing stress and lack of desire.
progrAMS
Relationship Matters
A Program for Couples Living with MS Relationships are hard work even in the best of times. Throwing in the added challenges of living with MS can make them even harder. The Relationship Matters program was created to help couples talk about difficult issues and to offer them the information and skills needed to deal with challenges related to MS. The heart of the Relationship Matters program consists of online and telephone-based courses. Also offered are telephone self-help groups, online chats, and downloadable teleconferences (via MP3 files). In June 2008, Relationship Matters sponsored a workshop in St. Louis. “Managing MS as a Team: Chatman Couple’s Program” led by Len Chatman, a marriage enrichment specialist and minister, and his wife Cheryl, who was diagnosed with relapsing-remitting MS in 1990. They shared their experience and advice to help couples and families explore ways to develop a team approach to living well with MS. Robin Ertel and Tom Decleene of St. Charles, MO attended the workshop. Although they had participated in other programs separately, they were excited to find a program that worked with caregivers and care receivers together. The workshop reminded them that they were not alone and that it is important to talk openly with each other when issues, even intimate ones, arise. The experience prompted Robin and Tom to register for a Relationship Matters teleconference on the topics of sex and intimacy. They listened to the recorded conference on speakerphone. “It helped start a conversation that lasted quite a while after we hung up,” Robin said. “ We talked about issues we both knew were there, but that we had just never verbalized before.” Tom agrees. “We had ignored them rather than deal with them,” he says. “I think I tended to ignore things because I did not want to upset Robin.”
Joyce and Gordon Spainhower have enjoyed their experience with the National MS Society’s Relationship Matters program.
They were relieved to learn that many problems that they had been blaming themselves for were simply related to Robin’s MS. The taped teleconference format works well for Robin and Tom because of Tom’s work schedule. They plan to listen to teleconferences together that cover anger, financial issues, and keeping fun alive. Robin and Tom recommend the Relationship Matters program to any couple living with MS, whether or not they think they have problems. “There is a whole lot to learn out there,” Robin said. Joyce and Gordon Spainhower of Columbia, MO have also taken advantage of the Relationship Matters program. “When my husband proposed to me, he gave me eight written promises,” Joyce said. “One was a special marital renewal annually.” Each year the couple does something, like read a book or take a course together, to fulfill this promise. This past year they chose to participate in the Relationship Matters program. CONTINUED ON PG 13 TOLL FREE NUMBER 1 800 344 4867
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DONOR
Leaving A Legacy of Giving
Lisa and Guan Hollins want to leave a legacy of giving for their daughters Megan and Brittany. In that spirit they have established a charitable remainder trust.
“We believe we are blessed, which is why we believe in giving back,” says Lisa Hollins. Lisa and her family, husband Guan and daughters Megan and Brittany, have always spent time together playing sports, traveling, and volunteering for a variety of organizations. Since Lisa’s MS diagnosis in 2000, however, much of the family’s volunteer efforts have been focused on the MS Society. Lisa most recently got involved as a 2008 Corporate Achiever and the whole family volunteers every year at Bike MS. They’ve also been spotted working at a variety of other rides and walks over the years. Megan currently volunteers in the Gateway Area Chapter office. In 2004, Lisa participated in Challenge Walk MS. “My legs haven’t fully cooperated since,” she says. “So my sister, Jan Meriweather, will be coming to St. Louis to take part in the next Challenge Walk MS.” Lisa appreciates the MS Society newsletters and magazines that keep her family up-to-date on everything going on at both the local and national levels. Lisa and Guan also participate in programs sponsored by the MS Society, including teleconferences and lectures. They are especially interested in learning about new technology and new medications to improve the lives of those living with MS, as well as the latest research aimed at eliminating MS altogether. “I think there’s a new urgency to find a cure,” says Lisa, “because so many children are being diagnosed.” Lisa and Guan knew they wanted to do something special to give financial support to
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the National MS Society. After exploring their options, they decided to create a charitable remainder trust. Like traditional trusts, charitable remainder trusts are comprised of money, securities, or other assets. The trust generates an income for the investor throughout his or her lifetime or for a period of up to 20 years. Other beneficiaries may also be named. At the death of the final beneficiary, the balance in the trust goes to the designated charity, in the Hollins’ case, that charity is the National MS Society. Although the concept seemed complicated, Lisa and Guan were pleasantly surprised by how fast and easy it was to create their trust. The Hollins also knew the trust was a good fit for their estate planning goals. “We were excited to do this,” says Lisa. “We believe in giving to worthy causes and we wanted to leave a legacy of giving for our girls. We believe they will continue that legacy.” If you are considering a planned gift to the National MS Society and have questions about your options, please contact the Gateway Area Chapter at 314-781-9020 or 1-800-344-4867.
Joe Salacki Programs Volunteer I always considered myself an optimistic and resilient person, but I must admit that losing my job and receiving a primary progressive MS diagnosis nearly seven years ago was a challenge even for me. As for many of us, the diagnosis was somewhat of a welcome end to years of frustration. But that end was really the beginning of a different life for Becky and me. I first made contact with the MS Society in the spring of 2002. My first volunteer assignment was at registration for the 2002 Clayton Walk. It was also Becky’s first walk and fundraising effort. We met a lot of nice people who were dedicated to the cause and we knew immediately that we wanted to do more. I signed up for an MS Aquatics class a few months later. The class was great and I had a chance to get to know others with MS for the first time.
Becky Salacki Challenge Walk MS, Walk MS Participant
When my husband Joe was diagnosed with Primary Progressive MS in 2002, the world around us changed our life forever but at least we knew it was something that we could deal with together! My philosophy on life is that everything happens for a reason. This disease struck Joe for a reason that neither of us may ever know “why” except to maybe make us both stronger in some way. The first year was the roughest… the shock, the fear, the anger, the denial, and the biggest question “why me?” As a carepartner watching my husband struggle each day with this disease made me want to get involved and help raise monies that would help fund research to find out what causes this terrible disease so a cure can be found.
“Our work with the MS Society is an Starting right away in 2002, I important part of our life together. decided to form a team called We enjoyed working together at the the Hardee’s Burger Bunch where same company for many years and we participated in the Spring Becky and I attended a few other now our volunteer work with the MS Walk MS in Clayton. Each year, MS Society events over the course Society brings us together in much thereafter, my fundraising efforts of the year. Then, in the spring of the same way.” 2003, I decided to try out a self-help have continued to grow. In 2006 – Joe and Becky Salacki group meeting at the Gateway I decided to challenge myself and Area Chapter office. I expressed my participate in Challenge Walk MS, a interest in volunteering and before I knew it they 50-mile walk over three days. After all, I celebrated put me to work! The people at the office were great my 50th birthday so why not walk a mile for each and I really enjoyed my time as a helpline volunteer. of these years. Walking 50 miles was not only I also had an opportunity to rejuvenate my public challenging but very rewarding. I was touched by speaking skills with several opportunities to speak those with MS who were determined to walk every about MS. I was working again but it was on my mile, each step a struggle. I have a new admiration terms as a volunteer and I absolutely loved it. I was for those with the disease. Trey Salacki, my steptruly honored to be named the 2004 Individual of the son who lives and goes to school in North Carolina, Year for my efforts. has now participated with me and members of Team Possible for the past two years. He, too, is I began leading the Men’s Chat teleconference selfdetermined to help make a difference. help group about five years ago. The group actually began as a men’s counseling program facilitated by Each year, Joe and I continue to work together on CONTINUED ON PAGE 13
CONTINUED ON PAGE 13 TOLL FREE NUMBER 1 800 344 4867
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VOLUNTEER
Through The Eyes of Volunteers:
research
The “Yuck” Factor John Fleming, MD, calls it the “yuck factor.” But people with MS might happily drink parasitic worm eggs if it meant a reduction in disease activity. In a study run by Dr. Fleming, five people with MS will ingest the eggs of the whipworm, or Trichuris suis, a virtually harmless organism, to see if they will divert the immune system from attacking myelin. If the experiment shows promise, Dr. Fleming hopes to enroll 15 more people with MS and follow them for a year. The study is based on the “hygiene hypothesis,” which theorizes the low incidence in MS in developing countries may be due to early exposure to infectious agents. “Modern sanitation is of course an important O & P Designs, bugshirts.com advance for public health,” explained Dr. Fleming, a professor of neurology Research in Argentina found that helminthat University of Wisconsin, Madison, “but it infected people with MS showed evidence of is possible that autoimmune diseases may anti-inflammatory immune activity, compared be an unanticipated to uninfected people consequence of with MS and those Researchers need you! extremely hygienic with a different Scientists are testing new medicaenvironments.” infection. The A recently published study involving a small number of people with MS underscores the potential of the worm egg approach: Investigators from the Raúl Carrea Institute for Neurological
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tions for MS in clinical trials across the country. Some will result in groundbreaking new treatments for the disease. Clinical trials depend on volunteers—people like you--who want to participate. For information on clinical trials taking place in your area, visit nationalmssociety.org/ clinicaltrials.
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investigators also found that immune cells isolated from the helminth-infected individuals produced nerve growth factors, which may translate into beneficial nerve protection.
Patient Question:
I’ve been having a terrible time with fatigue, doctor. I can barely get through my workday, much less find the energy to maintain the house, get the kids through their homework and prepare for the next day. My husband feels neglected, since I spend so little time on his needs. Our sex life is just about nil. Yet I am taking my MS medication and I don’t think I’ve even had a relapse over the last year. Why do I feel this way? Is there anything I can take to give me energy?
Response:
One of the more upsetting symptoms of MS is fatigue. MS can cause a unique form of lassitude that is overwhelming and does not specifically come from an acute relapse of the disease. Individuals with MS often require more sleep than the average person; if you are not getting that at night, then an hour of rest during the day or when you first come home from work may be essential. Fatigue can also be worsened by other medications; we need to be sure that your fatigue is not being worsened by your blood pressure and antidepressant medications. Adjustment of your situation at work might also be useful. Could you possibly work one day a week at home? Could you receive other accommodation at work that might be energy sparing? I would also ask that you look at your home responsibilities. Are your husband and children
If you have a question or concern you would like an MS expert to address in this column please email it to movement@gatewaymssociety.org.
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Dr. Barbara Green MS Center Director/ Neurologist St. John’s Mercy Medical Center
helping out where they can? Could you afford to get some assistance with cleaning and household chores to free you up? Obviously you need to find a way to spend time with your husband alone. Sexual activity also does not have to be just at night when you are most tired. You two need to talk together to figure out what the obstacles are. In answer to your original question, there are a number of medications that we can try to enhance your energy level. Amantadine is a medicine that increases dopamine in the brain and can increase mental arousal and energy. Provigil is a newer anti-narcolepsy drug which also decreases fatigue for some MS patients. Even Ritalin and some of the other medicines used for ADD in kids can be helpful to energize people with MS. I would certainly prescribe one of these medicines if things don’t improve with some lifestyle changes.
Call to Action Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their healthcare professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National MS Society is committed to ensuring that people with MS have the information and quality care they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at www.nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. TOLL FREE NUMBER 1 800 344 4867
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MS CONNECTION
Ask The Professional
Events
50th Birthday Bash – A Challenge of Body and Mind for MS Staffer Many people celebrate their 50th birthday with a big celebration as friends and family poke jabs with black balloons or “Over The Hill” paraphernalia. But Randy Adler has a different plan – to walk 50 miles in a single day. Randy has just about done it all with the MS Society. He participated in the first Challenge Walk and completed five, he has volunteered on logistic committees and he has worked for the Gateway Area Chapter as the Volunteer Development Coordinator, and now is a Development Senior Coordinator in charge of logistics. He completed his first Challenge Walk after his father George was diagnosed with MS on his 65th birthday. While George may serve as an inspiration to Randy, he didn’t get involved in Challenge Walk MS and the MS Society for his father. His father wouldn’t let him. Randy explains, “When I started getting involved in the MS Society, my dad said ‘Don’t do this for me. I’m old, I’ve lived my life. Do it for the young people, the new mothers and fathers who have their whole career and lives ahead of them. We’re never going to find a cure in my lifetime.’” “Unfortunately that was the case and we didn’t find a cure in his lifetime,” Randy said. “My dad was stubborn but he had a great attitude and that’s not unlike most of the people I’ve met who have MS. They have such a positive attitude.”
birthday for a long time,” Randy said. “Challenge Walk MS is always 50 miles so it made sense to walk 50 miles on my 50th.” Randy saw first hand the challenges that MS presents. Growing up Randy watched his father work 10-12 hours a day as a machinist and still have the energy to come home and work a couple of hours in his garden. But the primary-progressive MS slowed George down as he went from walking without assistance to using a cane to a wheelchair to a scooter very quickly. “I’ll never forget seeing him for the first time in a wheelchair,” Randy said. “ He was always so active and it was painful to see him in a wheelchair.” But George continued to remain busy even with the MS. “It made him a better person,” Randy said. “He got more involved in volunteering. He got involved in an organization called Concerned Citizens of the Disabled and he advocated for handicap accessible housing, transportation and making sure that new developments conformed to ADA regulations. He always attended city council meetings talking about sidewalks and accessibility. In a scooter he became a volunteer guide at the Missouri Botanical garden. He loved taking school kids on group tours – that was his favorite thing to do.” Randy hopes to become a Mission Possible member this year and raise $5,700 – one dollar for every person with MS in the Gateway Area. Go to 50onmy50th.com to learn more.
Randy has always enjoyed a good challenge – whether it be a big conference or sectional race when he was Randy Adler (right) a cross country runner at Alton High School or trying will walk 50 miles on to manage the thousands of logistics for Bike MS, Challenge his 50th birthday to raise Walk MS and Walk MS. Now he money and awareness is preparing to take on a new challenge to celebrate his 50th for MS. Randy is pictured birthday. On March 14, Randy with his dad George who will walk 50 miles on his 50th birthday to raise money and had MS and wife Darlena awareness for MS. “I’ve thought about how I could celebrate my 50th
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after one of Randy’s five
Challenge Walk MS events.
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Randy Adler, a veteran of Challenge Walk MS as both a participant and staff member in charge of logistics, has created his own personal Challenge Walk to celebrate his 50th birthday and 17th wedding anniversary. On Saturday, March 14, 2009 he will walk 50 miles on his 50th birthday to raise money and awareness for MS. About two years ago Adler, who oversees the logistics for Challenge Walk MS, Bike MS and Walk MS for the Gateway Area Chapter, decided to walk 50 on his 50th. When the Chapter moved the Challenge Walk MS site because of the I-64 construction, Adler felt he should not participate in the Challenge Walk so he could put all of his focus on the logistics. “I didn’t think it was fair to the rest of the participants that I didn’t give 100 percent of my attention during the weekend to the Challenge Walk,” Adler said. “So I thought I wouldn’t do the Challenge Walk in ’08 and ’09 and would do the 50-mile walk in one day and raise money for the Challenge Walk.” Adler’s journey will begin as the sun comes up in Edwardsville, where his dad, who had MS, lived. From there he’ll venture to Alton, where he was an all-American cross country runner at Alton High School. He’ll cross the Clark Bridge, part of the original Challenge Walk MS route, and then travel into Florissant where he’ll stop at his home for a quick change of clothes and a bite to eat. Then he’ll walk into Clayton and out Lindell to downtown St. Louis where he’ll finish up under the Arch as the sun goes down. He won’t have much with him during his 12-hour journey – a cell phone, his route and his thoughts. “I can pick up water at convenience stores so there’s not a whole lot of support I need,” Adler said. “Other people have said they’d come out and walk with me, but I’d like to do it by myself. It’s a challenge and it gives me a lot of time to be with my own thoughts, clear my head and make me think about why I’m doing this.” Adler will train for six months and estimates he’ll walk 1,000 miles in training. The physical aspect is just part of Adler’s challenge. He is also looking to raise $5,700 to become a Mission Possible Club member – raising $1
for every person in the Gateway Area living with MS. “Whatever my goal has been in previous Challenge Walks my wife and I always donate 10 percent, so we’ll start it with a $500 check to get it rolling,” Adler said. He will also be selling T-shirt sponsorships, wearing the sponsor’s T-shirt for 10 miles during his walk. He will also simply ask all the contacts he’s made over the years to contribute. “I think I’ve touched enough lives at the MS Society that I really think this will be the year I get Mission Possible,” Adler said. To check on Adler’s progress or to make a donation go to 50onmy50th.com.
Mark Your Calendar for our 2009 Events!
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Walk MS Carbondale, IL Eureka, MO Arnold, MO Clayton, MO Edwardsville, IL St. Peters, MO Cape Girardeau Columbia, MO Millstadt, IL River Bend, IL Troy, MO
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Saturday, April 4 Saturday, April 18 Saturday, April 18 Sunday, April 19 Sunday, April 19 Sunday, April 19 Sunday, April 19 Saturday, April 25 Saturday, April 25 Saturday, May 2 Saturday, May 2
Steppin’ Out for MS Night Walk Thursday, April 23 Go to gatewaywalkms.org Challenge Walk MS May 29-31 Go to gatewaymschallenge.org Bike MS September 12-13 TOLL FREE NUMBER 1 800 344 4867
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events
Birthday Journey Covers Metro East, North County, Clayton, Downtown St. Louis
Programs & Services
Doing What It Takes to Live Independently Living with MS means learning to live with change. Changes in what activities you can do and how you do them. For some, the biggest change is a change in attitude. Even the most independent must sometimes learn to ask for and accept help. When Bridget McFerren was diagnosed in 2003, the change brought confusion. “I didn’t know much about MS, other than the myths,” Bridget said. It didn’t take long, though, for Bridget to arm herself with information. She requested reading materials from her doctors, scoured the Internet and turned to the MS Society. “I knew that knowledge was power and that the best source of knowledge would be the MS Society,” she said. Though described by many as fiercely independent, Bridget still struggled to accept her MS diagnosis and subsequent job loss. When she contacted the Chapter in 2005, she was assigned a care manager to help her secure the disability insurance for which she qualified. She was also
Looking For A Way To Become Involved? Do You Like Visiting With People? Do You Have Some Spare Time? Become a volunteer friend to someone living with MS residing at “The Heights” at NHC Town and Country. Contact Elke Hansen at elke.hansen@gatewaymssociety.org to find out more or to volunteer
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provided counseling sessions to help her come to grips with her MS. The sessions helped Bridget set some realistic personal goals. One that was important to Bridget was to continue living in her apartment on her own. This year has been a tough one, raising new challenges to her independence. Bridget is no longer driving, though she hopes to be able to soon. Even though she can’t drive, she still gets around by using a power chair and investigating other ways of transportation like Call-A-Ride. With help from the Chapter, she secured services from Call-A-Ride Plus in order to attend school one night a week. Her care manager also worked with Bridget’s apartment complex owner to have sidewalk cuts installed, allowing access to her driveway and the complex’s laundry facilities. “I’m the type of person who thinks about possible scenarios ahead of time,” says Bridget. In addition to turning to the MS Society for advice on issues like insurance and utilities assistance, she is grateful to have received equipment like bath rails and cooling vests that help keep her moving. Bridget has created a special circle of friends who also live with MS and she enjoys the role of cheerleader, sharing her story with honesty and a positive attitude. Her favorite saying is, ‘I have MS, but MS does not have me.’” “If you say this and own it as your personal motto,” says Bridget, “it will help you get through the hard times and not fear the future.” Bridget encourages anyone diagnosed with MS to call the Chapter. “If anyone understands what you are going through, it’s the MS Society,” she said.
You May Be Eligible for Missouri’s Home Access Tax Credit for 2008 The Chapter is excited to share the news that this is the first year Missourians with MS may be eligible for a tax credit if they incurred expenses modifying their homes for accessibility. To be eligible for the credit on your 2008 taxes, the home modifying expenses must be incurred by December 31st. There is currently only $100,000 available statewide, so it is likely that only the first 40-45 qualified applicants will receive the credit.
early as possible. The Chapter is interested to hear from you if you benefited from this credit or were not able to leverage the credit.
How do you know if you qualify? The following are the requirements you need to meet: g Must be a Missouri resident g Must have a family income of less than $60,000 g Must have incurred eligible home modification expenses
The Gateway Area and Mid America Chapters were instrumental in the establishment of this tax credit.
What, specifically, is the tax credit you are eligible for if you meet the above requirements and incur eligible expenses? g Families that earn an annual income of $30,000 gross or below, can get a credit equal to 100% of the cost of the home modifications, up to a maximum of $2,500. (See list of modifications below) g Families that earn an annual income of $30,000 - $60,000 gross, can get a credit equal to 50% of the cost of the home modifications, up to a maximum of $2,500. Eligible home modifications include: g Constructing entrance or exit ramps g Widening exterior or interior doorways g Widening hallways g Installing handrails or grab bars g Moving electrical outlets and switches g Installing stairway lifts g Installing or modifying fire alarms, smoke detectors, and other alerting systems g Modifying hardware of doors g Modifying bathrooms
“Securing this tax credit was an exciting success for the National Multiple Sclerosis Society and we are hoping many people can take advantage of it,” says Janet Gillow, Senior Manager for Missouri Public Policy.
“The goal of our advocacy program is to raise lawmakers’ awareness of the disease and advocate for resources to help people affected by the disease,” Gillow explains. The Chapter is committed to obtaining funding for more credits, so that all who meet the qualifications can benefit. The abundance of expenses for those diagnosed with MS can sometimes be an overwhelming and frustrating burden. Receiving this tax credit is one step to alleviating some of the financial strain for the person living with MS and their loved ones. For further information on this credit, please contact The Missouri Department of Revenue. INCOME – TAX CREDIT TABLE INCOME LESS THEN $30,000 GROSS BETWEEN $30,000 $60,000 GROSS
TAX CREDIT 100% (not to exceed $2,500) 50% (not to exceed $2,500)
If you have eligible expenses, file your return as TOLL FREE NUMBER 1 800 344 4867 11
Advocacy
Made Any Home Modifications This Year?
Events
Corporate Achievers Learn Lessons While Giving Back Alex Vournas has learned several things since becoming involved in the MS Corporate Achievers Campaign. “Although you may only be one person, you can still make an impact,” Alex said. “Just talking with people at our fundraising event you realize how many people have a brother, sister, mother, father, cousin, aunt or uncle with MS and how grateful they are that you are helping to find a cure for MS.” Alex, who works for Anheuser-Busch, teams up with Kristen Gulley of AHM Financial group and Tim Kaufmann of Otis & Clark Properties by playing host to an annual beer and wine tasting and auction in Clayton, MO. Both Kristen and Alex were driven to join the movement by their experiences with MS. Kristen joined the campaign because her father has MS and saw it as an opportunity to make a difference and do her part in moving towards a world free of MS. She says it is important for her to get involved because she has been blessed to have the opportunity to excel in her career and sees Corporate Achievers as a way to give back to the community. Alex got involved with the MS Society when his sister was diagnosed with MS in 1996. He started by participating in Walk MS, but when he heard about the Corporate Achievers program in 2002, he couldn’t pass up the opportunity to help. “I was happy to see there were other programs within the MS Society to help raise money for MS,” Alex said. The three achievers set out to raise as much
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Tim Kaufmann, Kristen Gulley and Alex Vournas host an annual beer and wine tasting party as part of their Corporate Achievers Campaign.
money as possible. Four years ago they started their beer and wine tasting and auction and each year it has grown larger, from 50 guests in the first year to 200 this past year. The event is held in February and raises about $15,000 each year. While participation in MS Corporate Achievers has many benefits, including recognition in business journals and Commerce Magazine, Kristen and Alex are motivated by greater rewards. Kristen participates because she has seen the impact that can be made by just a little involvement. She enjoys the support she receives from the Chapter and the relationships she has built over the years. Both Kristen and Alex are gearing up for the next beer and wine tasting and are looking forward to raising more money and making a bigger impact in helping create a world free of MS. Their involvement stretches beyond Corporate Achievers, as both participate in Walk MS and are eager to gear up for Bike MS next year. One of their goals is to raise $100,000 by 2010, and from their past success it looks like they are on track to reach, and hopefully exceed, that goal. Learn more about MS Corporate Achievers at gatewaymscorporateachievers.org
The program reminded the Spainhowers how important it is to plan fun time together. “As my MS complications worsen, my husband picks up more of the household duties in addition to his busy job,” Joyce said. “We were reminded that we have to make time for togetherness.” Joyce was also reminded that it is her obligation to rest so she can enjoy their special time. Joyce and Gordon encourage couples to fully participate in the Relationship Matters courses. “Don’t just listen; actually write out and do the ‘homework,’” Joyce suggests. “And speak up when the lines (during teleconferences) are open.” With the help of a trained MS Society staff member, couples can customize the Relationship Matters curriculum to fit their own needs. To sign up or to learn more about Relationship Matters, visit www.nationalmssociety.org and search “Relationship Matters.” The National Multiple Sclerosis Society offers this program free of charge. Funding for Relationship Matters is provided by the United States Department of Health and Human Services, Administration for Children and Families.
Save The Date! The Gateway Area Chapter of the National Multiple Sclerosis Society will host it’s A Night Of A Thousand Stars on Thursday, January 15, 2009 at the Sheraton at Westport Plaza - Lakeside Chalet. We will celebrate our volunteer family and their accomplishments, present our Annual Achievement Awards and conduct the annual business meeting, including nominations to our Board of Trustees.
FROM PAGE 5 Joe Salacki
the MS Society. That program lasted a month or two and then the group evolved into a self-help group. Men’s Chat is really a group of guys with MS that gets together once a month by telephone to talk about a wide variety of topics. It might be sports, movies or MS... whatever is hot that night. For me, the most important elements of our group are camaraderie and an optimistic viewpoint. We don’t spend time talking about things we can’t do or our aches and pains. Instead, we talk about how we can make the most of our life with MS. I also involved my home-based business, PowerChair Productions, this summer. I produced a DVD slideshow from the photos taken over the course of the 2008 Challenge Walk MS. The show recognizes the contributions of everyone involved in the three-day event. I burned 250 DVDs so all of the walkers and volunteers received their own personal copy as recognition of their commitment and accomplishment.
g
My work with the MS Society has been very rewarding for me. I can’t meet the demands of a job like the one I left years ago but I have put my skills and talents to use in supporting the cause and helping others affected by this disease.
FROM PAGE 5 Becky Salacki my fundraising efforts. He helps me by printing my letters and address labels for the hundreds of letters I send out. This year we spent many enjoyable hours together as we burned and labeled DVDs for each participant. Working together on things like this is very rewarding!
I hope there will be no Walk MS, no Challenge Walk MS, no Bike MS in the years ahead as a CURE for MS is right around the corner! It is through our fundraising efforts that a cure will be found. HOPE is why I continue to support those living with the disease now and those not yet diagnosed. TOLL FREE NUMBER 1 800 344 4867 13
EVENTS
FROM PAGE 3
A
diagnosis of MS brings with it a mountain of information, many decisions to make—and many questions to ask. How to sort through it all? A new Society program called My Life, My MS, My Decisions takes you step-by-step through the process of making decisions about your medical care.
or e-mail programsonline@nmss.org. My Life, My MS, My Decisions is partially funded by an unrestricted educational grant from Biogen Idec, Bayer HealthCare Pharmaceuticals, Genentech, EMD Serono/Pfizer Inc., and Novartis Pharmaceuticals Corporation. Ask your self help group leader about the My Life, My MS, My Decisions program. See Pages 19-21 for more information about self help groups.
The program features a DVD and four online courses that cover the following topics: ∫ Teaming Up with Your Health-care Providers ∫ Navigating the Medication Maze ∫ Considering Clinical Trials ∫ Achieving Optimal Wellness
The courses can be accessed online wherever there is Internet access, whether at home, a community center, public library, or chapter. The DVD is also available separately if Internet access is unavailable.
Registering for better health
Three of the courses are now available and the fourth (“Achieving Optimal Wellness”) will be available this winter. The DVD includes three separate segments, each featuring a different person journeying through medical decisionmaking: ∫ Annie is a recently diagnosed 20-something who is a bit reluctant to begin taking diseasemodifying medication. ∫ Diagnosed 10 years ago, James, who is in his 30s, finds that his MS is affecting his walking and his physical relationship with his partner. ∫ Joann is in her 40s and uses a wheelchair to get around. She feels her MS is getting worse and would like to change doctors. The DVD follows Annie, James and Joann through the decisions they make and how they arrive at them, including researching medications, communicating with their doctors, and exploring clinical trials.
For more information, visit nationalMSsociety. org/mydecisions. To register, call 1-800-344-4867,
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JOIN THE MOVEMENT: gatewayMSsociety.org
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A Letter From the President, Phyllis Robsham In this issue of the MS Connection, we share a lot of information on relationships. We know that relationships come in all shapes and sizes. Most important to us are the relationships that we have the privilege of building each and every day with you – our clients, our volunteers, our participants, our donors. From those relationships comes the drive and inspiration that we need to continue to work towards a world free of MS each and every day. It is through each other that we can draw the strength and energy to continue to work on our relationships, in our personal and professional lives. I encourage each and every one of you to explore new ways to build upon your relationship with our Chapter. Join a yoga class and find others who are looking for the same physical reward as you. We are always looking for more volunteers - help out in our office and meet some new faces. Our event season is just around the corner – form a team with your friends, family or coworkers. The ways to build relationships with us are endless. And we want to make sure that we are making the most of those relationships. That is why we have engaged the expertise of The Lindberg Group to help us find out what is most important to you when it comes to our programs and services. So if you receive a phone call, a postcard or other communication from them, please help us by responding and sharing your thoughts and suggestions. It is an important step in the growth of our Chapter and the quality service that we provide. For information on everything that we have to offer, visit our newly redesigned website at www. gatewaymssociety.org. We want to hear from you! Let us know your thoughts on the new site by emailing us at movement@gatewaymssociety.org. While you are at it, if you want to help us in our effort to “Go Green” and would like to receive this newsletter via email, send us a note at gogreen@gatewaymssociety. org I look forward to building my relationship with you – old and new.
Contact Us at National MS Society Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 314-781-9020 or 1-800-344-4867 www.gatewaymssociety.org MS Connection © 2008 A quarterly newsletter published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President Phyllis Robsham Newsletter Editor Joe Cavato Writers Joe Cavato Dr. Barbara Green Amy Lutes Beth Norviel Becky Salacki Joe Salacki Dan Sanchez Lisa Shea NOTICE: The Gateway Area Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. The National Multiple Sclerosis Society does not endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable as information. The National Multiple Sclerosis Society assumes no liability whatsoever for the contents or use of any product or service mentioned. Proud member of
Phyllis Robsham Color for this newsletter made possible by Swift Print Communications.
TOLL FREE NUMBER 1 800 344 4867 15
EVENTS The Bike MS: Express Scripts Gateway Getaway Ride 2008 in Columbia, MO JOIN THE MOVEMENT: gatewayMSsociety.org 6-7 drew nearly 2,800 cyclists, 800 volunteers and raised 2.4 million dollars. 16 September
Gateway Area Chapter
happenings
No text yet
making the most of life and the least of MS
National Multiple Sclerosis Society
Carole, diagnosed 2005
Carepartners – Moving Forward Together
In this issue Self Help Groups . . . . . . . . . . . . . . . 20-21 Spring Rendezvous. . . . . . . . . . . . . 24-25 Upcoming Teleconferences. . . . . . . . . . 27 Therapeutic Recreation. . . . . . . . . . 30-31
Reliable. Dependable. Caring. Giving. Unselfish. All of these words describe carepartners. Carepartners enjoy helping their loved ones and don’t think twice about it. Many times carepartners may put their own desires and wishes on the backburner, but they need to be mindful and be sure to take care of themselves as well. Think of the oxygen masks on an airplane, you have to secure yours before you can put it on another. It’s important to keep in mind that it takes a lot of time and energy to care for a person living with MS, and if one is not mentally or physically prepared
for that, it could be a very stressful situation. Pam Weiss, a licensed Professional Counselor, heads up the Chapter’s Carepartner Support Group. “Carepartners are exhausted,” Weiss said. “They have their hands full caring for their loved one and in the process don’t take care of themselves.” A carepartner can mean many things and can come in many forms - spouse, friend, relative, neighbor or another person with MS. A carepartner’s responsibilities may include: keeping track of doctor’s appointments and medication schedules, becoming educated about MS symptoms and treatments, and day-toStory continued on page 18
Your Source for Knowledge, Wellness, and Support
Winter 2008-2009
TOLL FREE NUMBER 1 800 344 4867 17
Gateway Area Chapter
HAPPENINGS
Story continued from page 19
day chores like helping with feeding, bathing, administering medications and caring for other family members.
since she gives Kim her weekly shots. As Kim’s symptoms would come and go, her parents would step in more often to assist her and her family.
Part of what makes caring for a loved one with MS difficult is that symptoms can sometimes be dormant and at other times all-consuming. A person with MS can go from being self-sufficient to dependent in a short period of time. Carepartners are there to adjust and accommodate as new challenges arise.
“They help out with the children, take them to doctor’s appointments or to and from school when I’m unable to drive,” Kim says. “My parents have made the ultimate sacrifice for me and my family.”
One particular Carepartner knows very well what it takes to effectively care for a loved one with MS. Her spouse was diagnosed in the early 1980s. She received training for a nurse’s certification so she would know how to better care for him. Her husband is completely bedridden and has loss of muscle capacity in one arm. Her daily chores have included caring for their three children, preparing food for easier digestion and giving breathing treatments three times a day. Most days she tries to get everything done, but sometimes she doesn’t and she doesn’t let that get her down. They just try the next day to complete their tasks on their list. “It’s hard, but you learn to take the days as they come,” she says. “You just take one day at a time.” The family also assists with their neighbor who has MS by taking her to MS programs and meetings they attend. Many times people find themselves thrust into the role of carepartner at surprising times. Fritz and Karen Franz became carepartners in their retirement years. When their daughter Kim was diagnosed with MS three years ago, Fritz and Karen moved from Michigan to help Kim care for her five children. “Since Kim’s husband is in the military and travels, we wanted to be closer to help her out in any way we could,” Karen says. Coincidentally, Karen is a retired nurse, which helps, 18
Her parents are simply happy to help. “We’re glad we’re here to check up on her,” Karen said. The following tips offer some guidance on how to maintain and improve caregiving relationships: g Take time for yourself. Make sure that you have time to relax — if necessary enlist the help of other family members or even hire someone to share the workload. g Create a caregiver’s list of needs – this empowers caregivers to articulate clearly what they need. g The NFCA (National Family Caregivers Association) reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well being. Visit www.nfcacares.org g “A Family Caregiver Speaks Up” by Suzanne Geffen Mintz shines a light on caregiver’s needs. Available online and at local bookstores. g Learn as much as possible about your loved one’s disease so you will know how you can help and you’ll also understand what changes to expect in your loved one’s behavior or symptoms. Support groups are a therapeutic way for carepartners to discuss their situation, offer tips that work for them and learn new ideas on ways to better care for their partners and themselves. The Chapter carepartner support group meets on the third Wednesday of every month from 6:30-8 p.m. Please contact Pam Weiss for more information. If there is enough interest, a phone support group could be created.
1.800.344.4867
happenings
Talk MS Open House
Staff members from the Chapter will be attending to let you know about the programs and services offered by the Gateway Area Chapter. Belleville/O’Fallon, IL Sunday, January 11, 2009 — 2:30 p.m. First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269 West Plains Wednesday, January 21, 2009 — 5 p.m. Ozark Medical Center Shaw Medical Building, 2nd Floor 909 Kentucky St., West Plains, MO 65775 Jefferson City Monday, February 16, 2009 — 6 p.m. St. Mary’s Health Center Assembly Room 100 St. Mary’s Medical Plaza, Jefferson City, MO 65101 The Gateway Area Chapter currently has self help groups that meet in Central Missouri, Metro St. Louis, Southeast Missouri, Metro Illinois, and Southern Illinois. Self-help groups bring together people who share a common life experience for support, education, and mutual aid. Self-help groups can help their members feel more empowered and self-confident, learn new strategies for confronting problems, and provide an opportunity to be helpful to others. See complete self help group listings on pages 20 and 21.
Please mark the sessions in which you would like to participate:
[ ]
Belleville/O’Fallon, IL Sunday, January 11 Time: 2:30pm First United Methodist Church
[ ]
West Plains, MO Wednesday, January 21 Time: 5pm Ozark Medical Center
[ ]
Jefferson City, MO Monday, March 16 Time: 6pm St. Mary’s Health Center
HAPPENINGS
Your local self help group is hosting an open house and you are invited! If you are a current member, or have been interested in learning more about self help groups, this is an exciting opportunity to see first hand how our self help groups are moving forward.
Talk MS Open House Registration
Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ Date of Diagnosis______________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440
www.gatewaymssociety.org
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Gateway Area Chapter
TALK MS SELF HELP GROUPS
HAPPENINGS
MISSOURI
2nd Tuesday, 6pm 2nd Monday, 7 pm 2nd Sunday, 2 pm 3rd Sunday, 3pm
St. Francis Health & Wellness Center Conference Room 150 S. Mt. Auburn, Cape Girardeau, MO 63703 University of Missouri-Columbia Quarterdeck Bldg., Rm. 118 2401 Lemone Ind. Dr., Columbia, MO 65201 Disability Resource Assn. 420B S. Truman Bl., Crystal City, MO 63019 Callaway Community Hospital 10 South Hospital Drive, Fulton, MO 65251 St. Mary’s Health Center, Assembly Room 100 St. Mary’s Medical Plaza, off of West Dunklin Jefferson City, MO 65101 Randolph Area YMCA 1000 Kwix Rd., Moberly, MO 65270 Ralls County Health Department 405 West, New London, MO 63459 First Christian Church 1601 North Main, Poplar Bluff, MO 63091 Hardees Restaurant at Mid Rivers Mall Dr. and Mexico Rd.
West Plains
3rd Wednesday, 5 pm
Ozark Medical Ctr. Shaw Medical Bldg. 2nd Fl. Charline (417) 469-1068 909 Kentucky St., West Plains, MO 65775 Sally (417) 469-4842
Rolla
TBA
This group is currently looking for a facilitator. TBA Please call Allison at 1-800-344-4867.
2nd Sunday, 2:30pm
First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269
Cape Girardeau
3rd Saturday, 10 am
Columbia
Call for Dates
Crystal City/Festus Fulton Jefferson City Moberly New London Poplar Bluff St. Charles
2nd Tuesday, 1 pm 1st Sunday, 2:30 pm 3rd Monday, 6 pm
Sharon (573) 332-8148 Deanna (573) 882-6767 Marlene (636) 464-2533 Sharon webradleys@yahoo.com Diana (573) 642-9234 Chris (573) 645-0130 clepper@mobankers.com Lynne (660) 263-1868 Debby (573) 267-3365 mlrdsr@rallstech.com Tamra (573) 568-3912 cawalker@sbcglobal.net Jim (636) 940-1521
ILLINOIS Belleville/ O’Fallon 20
1.800.344.4867
Amy (618) 235-4226
happenings ILLINOIS cont’d Granite City Litchfield
Mt. Vernon NEW GROUP! Southern Illinois
Gateway Regional Medical Ctr, Pascal Hall 2100 Madison Ave, Granite City, IL 62040
4th Tuesday, 6:30 pm
Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056
12/ 16/08, 7pm 2/25/09, 7 pm 2nd Thursday, 6 pm
LINC, Inc. 120 East A Street, Belleville, IL 62220 Faith Lutheran Church 1104 N. 42nd St. Mt. Vernon, IL 62864 Heartland Regional-Medical Center Classroom #2 3333 West DeYoung, Marion, IL 62959
2nd Tuesday, 5pm
Beth (618) 447-5456 Susan (217) 324-7106 susie57@consolidated.net Ruth (217) 999-8924 tuba66@frontier.net Diane (618) 235-8823 Earhart500@aol.com
HAPPENINGS
Metro East
2nd Tuesday, 7 pm
Terri (618) 242-8448 Robert (618) 983-0321
ST. LOUIS METRO Affton Maryland Heights West County Perspectives on MS Networking Group (mid-30’s & under) SPECIALIZED GROUPS Men’s Chat MS Fun, Friends & Food Veterans with MS
1st Thursday, 7pm Weber Road Library Linda (314) 544-5623 Except for 1/8/09 4444 Weber Rd, St. Louis, MO 63123 DePaul Health Ctr, May Ctr- Conf. Rm C Call for Dates Kevin (314) 841-3755 12303 DePaul Dr., St. Louis, MO 63044 2nd Tuesday, Living Word United Methodist Church Walt (636) 256-9171 7 pm 17315 Manchester Rd., Wildwood, MO 63038 Mary (314) 542-9303 1st Saturday, NMSS Office Gateway Area Chapter Kidsho4@swbell.net 10 am 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Michelle (636) 447-5407 Last Tuesday of the Telephone group month, 7 pm David C. Pratt Cancer Center January 6, St. John’s Mercy Medical Center 6pm 607 S. New Ballas Rd., St. Louis, MO 63147 2nd Wednesday, Veterans Admin. Medical Center 1 Jefferson 10 am Barracks Dr., St. Louis, MO 63125
Joe S. jsalacki@sbcglobal.net Michelle (314) 251-6400 Debbie (636) 579-0264 debrafriends@hotmail.com Penny or Patti (314) 652-4100 ext. 4523 patricia.noonan2@med.va.gov
CarePartner and Family Group
3rd Wednesday, 6:30 pm
NMSS Office Gateway Area Chapter Allison (800) 344-4867 1867 Lackland Hill Parkway, St. Louis, MO 63146 allison.harper@gatewaymssociety.org
Children’s Group
Call for Dates
NMSS Office, Gateway Area Chapter Joel (314) 963-9056 evenings 1867 Lackland Hill Pkwy, St. Louis, MO 63146
www.gatewaymssociety.org
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Gateway Area Chapter
HAPPENINGS
Get Motivated, MS Fitness Days Get Moving. FREE PROGRAMS! Join an MS Fitness Club People with the common interest of staying healthy Exercise is important to everyone, but with the effects that sometimes come with multiple sclerosis, it can be hard to get moving. The National MS Society wants to help keep people living with MS moving and the newly created “fitness clubs” can help.
and active have a chance to get together every month to exercise and recreate. This program is similar to a selfhelp group, with a focus on recreation.
socialization, health and wellness among people with MS. Exercise and recreation is more fun when you have others to do it with. For more information and to find out how to join or start a fitness club in your area please contact Kerry Adkins at the Chapter at (314) 781-9020.
Start your day with a hearty, American Breakfast Buffet in the Fizz Factory cafe, on the 2nd level of the Main Building, followed by a visit to an OMNIMAX film. The breakfast buffet consists of fluffy scrambled eggs, roasted red potatoes, fresh fruit salad, assorted Danish, muffins, sausage, crisp bacon, assorted juices, Starbucks coffee and tea.
It will always be an adventure as the group along with a designated leader decides the location and what activities the group will be doing. It could be a walk in a The idea came from a client living with MS, who said local park along accessible trails, attending a yoga class he would like a “self help group” with a wellness theme. or going swimming. The original concept was to have many clubs that met Now that the St. Louis, MO and Columbia, MO Fitness monthly to exercise and or recreate together. Clubs have one year under their belt we are going to help Each “club” establishes their own goals. Kerry Adkins, of them celebrate their one-year anniversary with a special the Gateway Area Chapter, who helped start the fitness outing. Take this chance to come out and meet your local clubs says, “I would like to see each group get together Fitness Club members and see what it is all about! at least one to two times a month and participate in a St. Louis, MO variety of activities. I think it’s very important for each Mind Spirit Fitness Club group to try new activities, something they’ve never March 14th 9:30 a.m. - Noon attempted before.” Registration deadline: March 6 The overall goal of the “fitness clubs” is to encourage Breakfast and a Movie at the St. Louis Science Center
Fitness Club Leaders St. Louis, MO
Heidi Sherman (daytime activities leader) 314-835-0203 Heidi.Sherman@charter.net Sabrina Happel (nighttime activities leader) 636-233-7854 Subrinu2007@hotmail.com
Columbia MO
Gail Cameron 573-999-0471 cameron1298@yahoo.com 22
Columbia, MO
March 28th 10:30 a.m. – 1 p.m. Registration deadline: March 20 Yoga class at Elm Street Yoga and lunch following class For more information please call Kerry at 1-800-344-4867.
1.800.344.4867
happenings Fitness MS Shape up with the new physical therapy program
St. John’s Mercy Sports and Therapy at Timberlake 1461 N. Outer 40, Chesterfield, MO 63017
Brand new program includes: g individual screening appointments with a physical therapist g strength assessment
You Can Work It Out… with an MS Exercise Class at St. John’s Mercy Sports & Therapy
The MS Exercise Class at St. John’s Mercy Sports and Therapy was developed by Elissa Bradford, Physical Therapist with St. John’s Sports and Therapy, in conjunction with the West County MS Center. The class features Elissa Bradford and Nancy Dollenmeyer, physical therapists who have experience working specifically with people living with MS.
g balance assessment g mobility device assessment g range of motion tests g opportunity to ask questions specific to them g a continental breakfast g chances to learn about more of the Chapter’s wellness programs and community wellness resources.
Class size is limited to six participants in order to ensure individualized attention. Classes covered by some insurance policies. For fee waiver information call 1-800-344-4867(option 2). To enroll, call Christina Moore at (314) 881-4200. This class consists of: g General education in appropriate forms of exercise g Strengthening and flexibility exercises g Balance and endurance training
www.gatewaymssociety.org
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HAPPENINGS
February 21, 2009 9 a.m. – 3 p.m. Cost:$10 Registration deadline: February 13
HAPPENINGS
HAPPENINGS
Gateway Area Chapter
Couples Connect at Spring Rendezvous Weekend
than others. The stronger ones help others think things through, give them a shoulder or hand and someone who will listen.”
Imagine setting aside two days with your carepartner to commune with new friends and old at the historical Pere Marquette Lodge in Grafton, Illinois. Each year about 25 couples do just that at the annual Spring Rendezvous. Plenty of activities are planned for the all-adult weekend and guests can participate in as many or as few as they like. Opportunities for free time are always built into the schedule, so even couples who take full advantage of the structured activities have the chance to relax and enjoy private time together. The weekend isn’t just about discussing how MS affects your life and dealing with issues about the disease. It’s about relaxing with people who share similar experiences. “The weekend isn’t about MS,” said Bud Straumann who attends with his wife Cindi who has MS. “It’s fun, strengthening and inspirational.” The Straumanns registered for their first Spring Rendezvous hoping to relax and meet people. They were not disappointed. “Meeting other couples who struggle with many of the same obstacles we do helps us keep things in perspective, reminds us that we’re not the only ones that have challenges,” Bud said. The Straumanns acknowledge that people sometimes shy away from an event like the Spring Rendezvous, fearing it may be a depressing reminder of the negative side of MS. Bud assures them that his own experiences have been the opposite. “I feel like we pick each other up,” Bud said. “Some weekends, some people are stronger 24
1.800.344.4867
happenings Mark Your Calendar for Spring Rendezvous! Take one weekend to relax and have fun with other couples living with MS.
The Pere Marquette Lodge is located in the 8,000acre Pere Marquette State Park, overlooking the Illinois River. Built in the 1930s and continually maintained, the lodge combines rustic charm with modern amenities, all just 45 minutes from St. Louis. Guests may choose to enjoy a variety of activities including: g Games g Swimming g Arts & Crafts g Massage g Guest Speakers A limited number of fee waivers are available for program and/or accessible transportation. For fee waiver details, please call Allison at 314-446-4184. For more information, questions, or to RSVP, contact the Chapter’s office at 314-781-9020 or 1-800-344-4867. This program fills up quickly, so be sure to register early!
Help the MS Society G
GREEN
Would you prefer to receive our MS Connection in your inbox rather than your mailbox? Sign up today for an e-Newsletter by e-mailing the Chapter at gogreen@gatewaymssociety.org, and your name will be added to our cyber list. Thanks for helping us save printing, postage, and trees
Spring Rendezvous Registration Please mark which event
May 2-3 Cost: Early registration (by April 13) is $60 per person. Regular registration is $70 per person. Must be 21 to attend.
HAPPENINGS
Spring Rendezvous 2009 will take place May 2-3 at the Pere Marquette Lodge in Grafton, Illinois. Early registration (before April 13) is $60 per person. Regular registration is $70 per person.
Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-mail_____________________________ Do you prefer a vegetarian meal?_ ___________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover Card # _ ___________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440
www.gatewaymssociety.org
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Gateway Area Chapter
HAPPENINGS
Need Help at Work? Sometimes It’s Easiest Just to Ask Multiple sclerosis can make even the easiest daily tasks difficult. For many, the challenges are so great that their performance at work may suffer. One of the best ways to deal with this situation is to simply ask for assistance. That is exactly what Cindi Straumann did while working at AEP River Operations. Cindi has taken advantage of assistive technology and special accommodations made by her employer. She was hired about eight years ago and was up front with the company from the beginning about disclosing her diagnosis of MS. “I told them that I hoped it wouldn’t be an issue and they told me it makes no difference at all,” Cindi said.
It is important to ask for assistance at work. In Cindi’s case, her need for assistance sparked an effort on the part of her employer that went above and beyond anything that was expected of them. The accommodations that can be made are truly amazing and the impact they can have is clear. Receiving assistance in the workplace is one of the topics of an upcoming teleconference that is being hosted by the National MS Society on March 9, 2009. Emily Abel and Rebecca Anderson, OT will be speaking about staying healthy on the job and devices to keep you moving. Emily Abel, in particular, specializes in assistive technology, or the use of tools or devices that help job performance. Learn more about what can be done to help you or someone you know by registering for the Tools of the Trade teleconference.
While some employers might deem it a burden to try to accommodate the work environment for someone living with MS, AEP River Operations welcomed her into their company with open arms and a willingness to help her in any way possible. “I’ve been pretty fortunate,” Cindi says. “In my first four years I was working there I was hospitalized five times and they were so great. They came to see me, brought me flowers, told me ‘Take as much time as you need.’” They provided Cindi with a cart to help her deliver reports and even created a personalized evacuation plan to fit her needs. Her workspace is customized to her requirements and so is her health insurance. Even though Cindi is a part-time employee she has full health benefits. Finally, they sponsor a team for Cindi’s husband and her co-workers at Bike MS. 26
Cindi Straumann’s employer made accommodations to make her job easier. Her company was named the Employer of the Year last year by the National MS Society Gateway Area Chapter. Cindi poses with Mark Knoy who accepted the award at last year’s Night of A Thousand Stars.
1.800.344.4867
happenings Midwest Teleconference Series Mark your calendars for every second Monday of the month for the Midwest Teleconference Series calls. January through April’s topics are as follows:
Speaker: Elizabeth Crabtree-Hartman, MD Professor, Date: January 12, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of preventative care, overall health and health issues not related to MS. Registration deadline: January 12, 2009
Your Health When It May Not Be Your MS
Speaker: Kay Hilkey, RN, MSCNFort Wayne Neurological Center, MS Institute of Northeast Indiana Date: February 9, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of preventative care, overall health and health issues not related to MS. Registration deadline: February 9, 2009
Tools of the Trade - Staying Healthy on the Job and Devices to Keep You Moving
Speaker: Emily Abel and Rebecca Anderson, OT Date: March 9, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of techniques to utilize to stay healthy while working. Registration deadline: March 9, 2009
Stress and MS
Speaker: David C. Mohr, Ph.D., Northwestern University Date: April 13, 2009 Time: 7-8 p.m. Objectives: Increase knowledge of stress management, specifically stress related to MS. Registration deadline: April 13, 2009
Please mark the sessions in which you would like to participate:
[ ]
You, Your Partner and MS January 12, 2009, 7-8 p.m. with Elizabeth Crabtree-Hartman
[ ]
Your Health - When It May Not Be Your MS February 9, 2009, 7-8 p.m. with Kay Hilkey
[ ]
Tools of the Trade - Staying Healthy on the Job and Devices to Keep You Moving March 9, 2009, 7-8 p.m. with Emily Abel and Rebecca Anderson
[ ]
Stress and MS April 13, 2009, 7-8 p.m. with David C. Mohr
HAPPENINGS
You, Your Partner and MS
Teleconference Registration
Name_____________________________ Address____________________________ City/State/Zip________________________ Home phone_________________________ Work phone_ ________________________ E-mail_____________________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440
www.gatewaymssociety.org
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Gateway Area Chapter
Resource Center
HAPPENINGS
Physical Activity and MS Although the weather outside may keep you from enjoying a walk outdoors, don’t forget to continue exercising over the winter months. Individuals living with MS can benefit greatly from regular exercise. Health benefits include increased arm and leg strength, improved balance, reduced depression, fatigue and anger. The MS Society provides a wealth of knowledge related to physical fitness and MS. All these documents are available online from the MS Society website’s Multimedia Library and the MS Society’s Lending Library.
g Brochure: Exercise as Part of Everyday Life g Brochure: Stretching for People with MS g Brochure: Stretching with a Helper for People with MS g Momentum Magazine Healthy Living section g Webcast: Physical Fitness from Home — Part 1: Exercise Options for People with Progressed MS — Part 2: Exercise Options for People with Full Mobility g MS Learn Online: Getting There: Staying Mobile with MS
the most energy. Also try alternating more vigorous activity with less vigorous activity. For example, try 10 minutes of aerobic exercise followed by 10 minutes of a slower paced walk. g If you are feeling more fatigued than usual, use the “two minute” rule. Try moderate exercise for two minutes, if your fatigue persists, stop and rest. g Don’t forget that daily moderate exercise for 20 minutes can be as equally beneficial as more vigorous exercise. After you give you muscles a workout, don’t forget about your brain! The National MS Society has developed a new program called “CogniFitness: Keep the Mind Moving”. The program has seven modules targeting skills that individuals living with MS often have difficulty with, including attention, memory and communication. For more information contact the Chapter.
A common concern and barrier for individuals with MS participating in exercise is fatigue. Here are some helpful hints for managing your fatigue. g Exercise at the time of day when you have
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1.800.344.4867
HAPPENINGS
happenings Chapter Calendar DECEMBER ‘08
6 7
11 24
JANUARY ‘09
2 11 12 15 21
Chapter Office Reopens Talk MS Open House, O’Fallon, IL You, Your Partner and MS Teleconference Night of A Thousand Stars Volunteer Recognition Dinner, St. Louis, MO Talk MS Open House, West Plains, MO
FEBRUARY ‘09
9
16 21
Your Health – When It May Not Be Your MS Teleconference Talk MS Open House, Jefferson City, MO Fitness MS, St. Louis, MO
9
14 28
Tools of the Trade – Staying Healthy on the Job and Devices to Keep Your Moving Teleconference Fitness Club Day, St. Louis, MO Fitness Club Day, Columbia, MO
APRIL ‘09
2 4 9
13 18 19 23
25 25
New Connections Social Gathering, Arnold, MO Walk MS, Carbondale, IL Talk MS Open House, Mt. Vernon, IL Stress and MS Teleconference Walk MS, Eureka and Arnold Walk MS, Cape Girardeau, Clayton, Edwardsville, and St. Peters Steppin’ Out for MS Night Walk, St. Louis, MO Women On The Move Luncheon St. Louis, MO Research MS, Litchfield, IL Walk MS, Columbia, MO and Millstadt, IL
MAY ‘09
2
Walk MS, River Bend, IL and Troy, MO 2-3 Spring Rendezvous 11 Nutrition Teleconference 12 Talk MS Open House, Granite City, IL 16 Family Evening at Grant’s Farm 29-31 Challenge Walk MS www.gatewaymssociety.org
Women On the Move
is an empowering way for women to support other women in the movement toward a world free of MS. As a way to honor women who have faced challenges that can come with MS, The Woman of Courage award will be presented to an individual and their family at a luncheon on April 23. The award will recognize a woman who is living with MS, or is the caregiver to a family member with MS. She demonstrates dignity, grace, strength, compassion and creativity in her every day life. For more information or to nominate someone go to our web site.
Market Place Ad Rascal Power Chair
In good condition, blue. Asking $800. Call Larry in Salem, IL, at (618) 548-5987.
Pride Lift Chair
In excellent condition, brown upholstery. Asking $250. Call Joyce in St. Charles, MO, at (636) 288-2057.
Cheney Stair Lift
Climbs 15 stairs, and is in working condition (currently disassembled). All hardware is included. Buyer must load and pick-up. $500. Call Randy in Fenton at (636) 343-7670.
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HAPPENINGS
8
Tai Chi Fitness Day, Cape Giradreau, MO Tai Chi Fitness Day, Edwardsville, IL Managing Fatigue Through Medicine Teleconference New Connections Social Gathering, Cape Girardeau, MO Chapter Office Closes
MARCH ‘09
Gateway Area Chapter
HAPPENINGS
MS Aquatics
METRO AREA
Bridgeton Community Center Contact: Cole (314) 739-5599
Wellbridge Athletic Club – (Town & Country) Contact: Susan (636) 207-3000
Carondelet YMCA Contact: Diane E. (314) 353-4960
MID MISSOURI
Center of Clayton Contact: Diane (314) 290-8520 Chesterfield JCC Contact: Fanchon (314) 432-5700 x3157
DIVE IN!
Everyone can participate in an aquatics class. You don’t need to know how to swim – you just need the desire to improve yourself, have fun, and make friends.
Why aquatics?
g. The buoyancy of the water reduces your body weight, meaning less stress on joints! g. Better cardiovascular fitness is gained using the resistance of the water! g. Water keeps you cool and guards against fatigue, so you can exercise longer! Limited fee waivers for MS Aquatics programs are available. Please call 1-800-344-4867 for more information.
Therapeutic recreation programs brought to you in part by unrestricted educational grants from the Christopher and Dana Reeve Foundation and EMD Serono. 30
Columbia Activity & Recreation Center Contact: Laurie (573) 874-7460 Jefferson City YMCA Contact: Pat G. (573) 761-9021
Emerson Family YMCA (North County) Contact: Georgia/Chris (314) 521-1822
Mexico Family YMCA Contact: Consuelo (573) 581-1540
Hazelwood Community Center Contact: Jill A. (314) 731-0980
Longbranch YMCA (Classes taught at the Comfort Inn pool) Contact: Martha M. (660) 385-1818
Jefferson College (Hillsboro) Contact: (636) 942-3000 x382 Mid-County YMCA (Brentwood) Contact: Sandi (314) 962-9450 Show Me Aquatics Contact: Eileen O. (636) 896-0999 South City Family YMCA Contact: Rich (314) 644-3100 St. Charles County YMCA Contact: Kay W. (636) 928-1928 The Pointe at Ballwin Commons Contact: Susie (636) 227-8950 Washington Four Rivers Family YMCA Contact: Ann (636) 239-5704 Wellbridge Athletic Club –( Clayton) Contact: Susan (314) 746-1500 1.800.344.4867
SOUTHERN AND METRO ILLINOIS
John A. Logan College Contact: Chris G. (618) 985-3741 ext. 8504 Jerseyville Wellness Center Contact: Jennifer R. (618) 498-3500 O’Fallon Community YMCA Contact: (618) 628-7701
SOUTHEAST MISSOURI
Black River Coliseum Contact: Mandi E. (573) 686-8009 Cape Girardeau Municipal Pool Contact: Pat Grebe (573) 335-4040
happenings
Yoga Sites St. Louis:
Yoga St. Louis Iyengar Yoga Class 3305 Jamieson Ave. St. Louis MO 63139 Call: Kerry 1-800-344-4867 St. John’s Mercy Medical Building (South County near I-270 & Tesson Ferry Rd.) 12348 Old Tesson Rd. , St. Louis MO Instructor: Linda Whitney (314) 729-0181 Tuesdays Jan. 6 – Feb. 24 ($72 for 8 weeks) March 3 – April 28 ($72 for 8 weeks) 5:30 – 6:30 p.m. (Beginner Class) 7 – 8 p.m. (Gentle Yoga Class) Thursdays March 5 – April 30 ($72 for 8 weeks) 9:30 a.m. (Beginner Class) Saturdays Jan. 10 – Feb. 28 ($72 for 8 weeks) March 7 – May 2 ($72 for 8 weeks) 9:00 a.m. (Intermediate Class) *No classes on March 17, 19 and 21.
Elm Street Yoga 904 Elm St, Suite 210, Columbia, MO 65201 www.elmstreetyoga.com Tuesdays, 1:15 - 2:15 p.m. Thursdays, 4:30 - 5:30 p.m. Instructor: Linda Lutz Cost: $35 for 5 classes Class size limited to six people Contact: Linda (573) 441-8566 or lindalutz@mac.com
Metro & Southern Illinois NEW LOCATION! Sukha Yoga Center 18 South High St., Belleville, IL Instructor: Sarah Fraser Cost: call for class times/fees Contact: Sarah (618) 236-9642 Web site: www.sukhayogacenter.com One-O-One Yoga 101 South Graham Carbondale, IL Contact: Sarah Miller, 618-457-8186 Cost: Call for class times/fees Web site: www.center101yoga.com
Southeast Missouri PARC Fitness Center 2620 N. Westwood Blvd Poplar Bluff, MO 63901 Phone: 573-686-5985 Mondays, 7 - 7:45 p.m. Wednesdays, 6 - 7:30 p.m. (slower paced class) Walk-ins welcome! Instructor: Mindy Matthews
www.gatewaymssociety.org
Your Yoga for Your MS
Yoga is an ancient practice that combines posture, breathing, and meditation to connect body, mind and spirit. For people with MS it can provide the following benefits: Chronic pain relief Diminishes fatigue Relieves depression and anxiety Improves spasticity Helps overcome stiffness Increases oxygen in the blood Promotes relaxation and sound sleeping g. Encourages living in the moment g. Provides a fun way to exercise and meet new friends g. g. g. g. g. g. g.
Adapting Yoga to All Ability Levels MS yoga instructors have additional knowledge of MS and its symptoms. Instructors modify postures to your ability level using different props such as blankets, chairs, straps or blocks which helps eliminate stress on the joints and make postures more comfortable and safe. 31
HAPPENINGS
MS Society Office 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Cost: $10/ class Call: (314) 781-9020 or 1-800-344-4867 Mondays 10 - 11:30 a.m. (Iyengar Yoga Class) Instructor: Tiki Misra Wednesdays 10 - 11:30 a.m. (Iyengar Yoga Class) Instructor: Kathy Simon
Mid Missouri
Join the Movement—without leaving your office
Designate the National MS Society in your employee giving campaign
from each paycheck. Every year, over 1.5 Combined Federal Campaign (CFC) Donations can also million employees If you work in the public sector or you be made as a onesupport important are in the military, contributions can be time contribution by non-profit organizamade through the CFC by selecting the writing a personal tions nationwide designation number 11409. If you work check. When you through employee in the private sector, look for us listed choose the National giving campaigns. under Community Health Charities or MS Society your If you are a federal ask your campaign coordinator about donation comes government employee designating a gift to the Society. directly to our chapter. or your private employer offers a Your company doesn’t offer an employee charitable giving campaign, you can help giving program? Talk to your benefits move us closer to a world free of MS by administrator about starting one. And call designating a contribution to the National us. We can give you the resources you need. MS Society. Participating in a charitable giving program Most charitable giving programs offer is an easy way to help provide vital services, employees the opportunity to make an spark public policy advocacy, and fund annual pledge, which means a portion of cutting-edge research. their donation is automatically deducted NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO
Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146
Mailing Label Changes
Please check the appropriate box below, correct the label and then return to National MS Society, Gateway Area Chapter
q Name change or misspelled q Address change q Remove from mailing list q Received more than one copy q Please send me my MS Connection via e-mail. My e-mail address is: _____________________________