winter 2013 ARIZONA Chapter
MS Connection Newsletter
MS service day page 6
INSIDE 04 THIS ISSUE
ramping-up a home
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upcoming local events
treating 2013 walk incontinence wrap-up
15 research update
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MS connection: winter 2013
notE FROM the chapter president
ALK
NMSS
WALK
BIKE
NMSS
take your involvement to the next level. Join in as an event participant, volunteer or donor! NMSS
BIKE
giving & thanks CHALLENGE
It’s the season of giving and thanks, and we’re thankful for the BIKE CHALLENGE ways you’ve helped us support people affected by MS. Over the past year, the Arizona Chapter provided support to over 105 families in need through our direct financial assistance program. There’s plenty of time to get involved with the chapter this year and more ways to give: • Consider joining our MS Rockstar running program. • Start planning for taxes with a year-end donation to the chapter. • Be a part of Bike MS by registering to start a team, volunteer, or ride as an individual. If you register and raise $100 before the new year, you’ll earn a pair of Bike MS-edition riding gloves.
CHALLENGE
Connect with us online at: arizonaMS.org facebook.com/arizonaMS twitter.com/AZMSSociety instagram/arizonaMS On the cover: Volunteers washing windows @ MS Service day. Read about it on page 6.
• Give of your time as a volunteer. We have many ways to get involved using your unique talents and skills. We hope you enjoy a special holiday season with loved ones and we look forward to another great year working together to create a world free of multiple sclerosis. Take care, Jim Elfline Chapter President
nationalmssociety.org | 1-800-344-4867
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tucson:
A call to action We are recruiting volunteers to join our Tucson Programs Committee. The committee will work to expand the reach of our current programs while also seeking new opportunities to meet the needs of people with MS and their family members in Tucson. The committee is seeking new and creative voices to serve in this volunteer leadership role. The competencies we are looking for include: community-based programing, event planning, strategic planning, marketing and public relations, volunteer cultivation, and health & wellness expertise. If you are interested, please call (520) 325-0755 or email crystal.blickfeldt@nmss.org. Looking forward to meeting, listening, and working with you!
National Multiple Sclerosis Society Arizona Chapter 5025 E. Washington St., Ste. 102 Phoenix, AZ  85034 1-800-344-4867 Chairman: Marion Kelly Chapter President: Jim Elfline Editor & Design: April Nielsen Š 2013 National Multiple Sclerosis Society, Arizona Chapter
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
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MS connection: winter 2013
financial assistance
ramping up a home The Financial Assistance Program was developed to improve the quality of life for people living with Multiple Sclerosis by intervening in a situation to provide temporary financial assistance. This program is offered to people living with MS in Arizona who have a need that cannot be met through their own resources or other community resources. Program participants may receive a maximum total amount of $500 per fiscal year in financial assistance in any combination of areas of assistance; these areas include durable medical equipment, rent/mortgage, short-term respite, or utility assistance. The impact this program has on clients in far reaching; like in the case of Karen Wiskerchen of Sedona. Karen applied for assistance this year so she could have a ramp built to accommodate a newly acquired scooter.
“In May of this year, my mother unexpectedly passed away. While in town attending her services, I found out that she gifted me a beautiful electric scooter. What a blessing it was to receive this brand new scooter. I knew I needed to store the scooter in my shed to protect it from the summers and winters in Sedona. The shed sits up off the ground about two feet, so a ramp would be needed to go in and out of the shed with the scooter. I contacted the NMSS to ask if they had any assistance programs. They did and I qualified for help. The ramp was built and the scooter was delivered last week. It now sits in its new home here in Sedona and I thank my Mom every day for the incredible gift! Thank you NMSS for helping me protect this treasure for years to come. – Karen Wiskerchen”
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nationalmssociety.org | 1-800-344-4867
bike ms
why i ride: by Kristen Larson In April of 2012, I was in the midst of training for my very first Ironman triathlon (a 2.4-mile swim, 112-mile bike, and 26.2-mile run, all in under 17 hours) when I began experiencing some numbness in my face. I figured it was just one of those weird things the body does when it’s being pushed to the limits, and wasn’t too concerned. Nonetheless, I went to the doctor to get it checked out. On June 24th, 2012, I crossed the finish line at Ironman Coeur d’Alene. It was the best day of my life so far. Five days later, on June 29th, I was diagnosed with multiple sclerosis; devastation doesn’t even begin to describe it. After some serious self-pity, and, let’s be real here, a little bit of anger, I decided I could control two things: my attitude and my activism. So I emailed my unusually large group of endurance athlete friends (most of whom I met through the Team in Training triathlon, cycle, and marathon programs), and the plan to fundraise through Bike MS took shape. The credit for my personal fundraising success at Bike MS 2013 goes to my amazing family and friends. I sent out emails and Facebook requests;
they did the rest. People just exploded with support. And my teammates--that completely fantastic group of people who made up the inaugural Team K-Lar--totally outdid themselves. They attended training rides, bought jerseys, raised more than $14,000, and made the trek up to Cottonwood for a phenomenal weekend. Everyone had such a great experience. From the gorgeous scenery to the Saturday evening celebration, it was truly a weekend to remember. We can’t wait to be back, bigger and better, in 2014!
Register today at www.bikemsarizona.org Registration Fee: $35, now through January 10. January – May 2014: $55. Minimum fundraising: $250
6 LIVING WELL WITH MS
MS Service day
What a Difference a Day Makes: MS Service Day is a way that volunteers, businesses, civic organizations, and family and friends can make a change in the lives of people with multiple sclerosis by completing projects for them. Volunteers will be assigned a specific project location, where together with staff member(s) will complete the wish list of someone living with MS. We need your help to make this happen! If you are a person living with MS, who is in need of household tasks or improvements (yard work, painting, organizing, cleaning, etc.), please contact the chapter to receive an MS Service Day application. We are also looking for volunteers who are interested in participating in MS Service Days around the state!
MS connection: winter 2013
9th Annual
WAMS luncheon National Multiple Sclerosis Society Arizona Chapter 5025 E. Washing ton, Ste. 102 Phoenix, AZ 8503 4
The Women Against MS Luncheon is scheduled for Tuesday, April 29, 2014 and will be held at the Arizona Biltmore Resort & Spa. Guests will share the joys of a fine lunch while watching an inspirational program emceed by Tara Hitchcock formerly of “Good Morning Arizona” and currently the host of Tara’s Reel Travels. Our keynote speaker will be Bobbi Doorenbos. Bobbi is the first women F-16 Fighter Pilot in the US, flying over Afghanistan and Iraq. She was diagnosed with MS while serving and was grounded by the Air Force and then assigned to serve as the Air Force Liaison to President George W. Bush. She is currently the Commander of the 214th Reconnaissance Group National Multiple Sclerosis Society Arizona Chapter at Davis-Monthan Air Force Base5025inE.Tucson, AZ. Washington 4
9th Annual event: April 29, 2014
If you are interested in attending or supporting the WAMS Luncheon please call or email Brandee Wessel at (480) 455-3958 or Brandee.Wessel@nmss.org.
Stories of
Erika Edholm, Program & Advocacy Coordinator at (480) 455-3959 or erika.edholm@nmss.org.
Discover Multip le
Presented by:
For more information to get involved, please contact:
, Ste. 102
Phoenix, AZ 8503
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nationalmssociety.org | 1-800-344-4867
Mark your calendars
local events 20s/30s Night Out - Tucson
No Boys Allowed Phoenix
Wednesday, January 8, 2014 7 PM Maloney’s on 4th Ave. Cost: None, except for drinks Come meet and hang out with others in this age-group with MS.
Wednesday, February 19 6 PM – 8 PM Disability Empowerment Center 5025 E. Washington St., Phoenix Cost: $5.00 Please register by Tuesday, February 17.
MS Moving Forward: A Newly Diagnosed Seminar
Aqua Exercise
Saturday, January 11 9 AM – 11:30 AM Disability Empowerment Center 5025 E. Washington St., Ste. 102, Phoenix Also available statewide via teleconference Please register by Friday, January 10.
Boys Night Out
Tuesday, January 14 6 PM – 8 PM Disability Empowerment Center 5025 E. Washington St., Phoenix Cost: $5.00 Please register by Monday, January 6.
Free From Falls
Thursdays, February 6 – March 27 10 AM – 12 PM HealthSouth Valley of the Sun 13460 N. 67th Ave., Glendale Cost: $60.00 for the 8-week course Applications must be returned by Thursday, January 30.
Wednesdays 12 PM – 1 PM NAU Wall Aquatic Center 705 S. San Francisco St., Flagstaff Cost: $2 per week & $3 per week for parking To register or further questions please contact Sherry Oberhardt S_Oberhardt@hotmail.com or at (928) 853-5379.
Stretch and Laugh Chair Yoga
Wednesdays 10:45 AM - 11:45 AM Thorpe Park Community Center 245 N. Thorpe Rd., Flagstaff $2 per class To register contact Melinda at (928) 527-8604
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If you would like more information about support groups in your area, call 1-800-344-4867, and press ‘1’ or contact a Listed leader.
SUPPORT GROUPS CENTRAL PHOENIX (DAY)
Chuck: (602) 956-8129 2nd Monday of the month, 10 AM First United Methodist Church 5510 N. Central Ave.
EAST VALLEY
Deb: (480) 890-1488 3rd Thursday of the month, 10 AM Grace United Methodist Church 2024 E. University Dr., #502
FLAGSTAFF
Kathy: (928) 774-2375 Please call for meeting time & location.
GILBERT - Active with MS
Mark: (480) 518-5971 Last Wednesday of the month, 5 PM Banner Neuro Wellness 207 N. Gilbert Rd., Ste. 205 This group is open to all levels of activity and geared towards those aspiring to become more active or who are currently involved in sports.
GLENDALE
Deborah: (623) 974-6944 1st Tuesday of the month, 12 PM First Southern Baptist Church 10250 N. 59th Ave.
KINGMAN
Pati: (928) 692-0979 3rd Saturday of the month, 10:30 AM Kingman Regional Medical Center Ocotillo Room 3269 Stockton Hill Rd.
NORTH SCOTTSDALE
Lisa: (480) 860-2367 2nd Tuesday of the month, 4:30 PM Scottsdale Senior Center 10440 E. Via Linda, Room 8
PRESCOTT VALLEY/PRESCOTT
Alan: (928) 710-1257 Larry: (928) 775-7334 2nd Thursday of the month, 10 AM Wyndam Garden Inn 4499 Hwy. 69, Prescott
Sierra Vista
Judie: (520) 378-4400 4th Wednesday of the month, 11 AM Country House Cafe 4373 Arizona 92
SIGNIFICANT OTHERS
Lois: (602) 672-9234 Please call for meeting time & location.
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nationalmssociety.org | 1-800-344-4867
SUN CITY
Judy: (623) 972-3941 Karen: (623) 584-8575 1st Thursday of the Month, 10:30 AM First Presbyterian Church 12225 N. 103rd. Ave.
TUCSON NORTHWEST GROUP
Cindy: (520) 887-8905 Carol: (520) 797-0405 2nd Wednesday of the month, 10:00 AM Casas Adobes Congregational Church 6801 N. Oracle Rd.
TUCSON CENTRAL GROUP
Crystal: (520) 325-0755 Please call for meeting time & location.
YUMA Educational empowerment group Crystal: (520) 325-0755 1st Thursday of the month, 6:30 PM Yuma Regional MC Business Center 399 E. 32nd St.
YUMA Psychological empowerment group Crystal: (520) 325-0755 3rd Saturday of the month, 9:30 AM Yuma Rehabilitation Hospital 901 W. 24th St.
DON’t SEE A support group IN YOUR AREA? Join us for a statewide skype group! Eldene: (480) 860-9359 1st Tuesday of the month, 3 PM This group uses the free internet service Skype to meet from any location in Arizona. Call Eldene for more details on how to participate from the comfort of your home.
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MS connection: winTER 2013
non-surgical treatment of urinary
incontinence
by earl A. surwit, m.d. It is estimated that 30-50% of all women will have urinary incontinence at some point in their lives. They frequently do not report the problem due to: 1. Embarrassment, 2. Availability of absorbent products, 3. Thinking that it is considered a normal part of aging, which it is not, 4. Poor knowledge of the treatment options, and 5. Low expectations for treatment. Urinary incontinence is caused predominately by obstetrical injuries, but there also is a hereditary component along with neurological injuries and diseases such as Parkinson’s, multiple sclerosis (MS) and central nervous system (CNS) diseases. There are three different types of urinary incontinence. The first is urge incontinence where the patient has to go to the bathroom but does not make it. The second is stress incontinence, meaning with coughing, laughing, sneezing or exercises a leak is caused. The third is insensible incontinence where the patient leaks and is unaware of it until she notices she is wet. The basic premise of our treatment is that virtually all incontinence is a function of a weak pelvic floor. In addition, an overactive bladder plays a role in many patients, especially with urge incontinence. Therefore, we have developed methodologies to quiet the bladder and strengthen the pelvic floor.
The secret to our success with this nonsurgical approach is combining different treatment modalities. The treatment consists of biofeedback to teach the patient proper pelvic floor exercises (Kegel exercises). In addition, electrical stimulation is utilized to strengthen the pelvic floor and quiet the bladder. Posterior tibial nerve stimulation is used to calm the bladder, increase bladder capacity, strengthen the urethral sphincter and strengthen the pelvic floor muscles as well. We also utilize diet to avoid bladder irritants, which are spicy foods, caffeine being the worse stimulant of the bladder. In patients with Multiple Sclerosis (MS), the most effective treatment has been the Posterior Tibial Nerve Stimulation (PTNS). Pelvic floor rehabilitation requires that the patient contract the pelvic floor muscles. This can be very difficult for some of the MS patients. In contrast, PTNS does not require patient participation. We have accumulated data in over 400 patients and the cure rate for this treatment approach for urinary incontinence is 80-90%. In urge incontinence by itself, it is 93%. It is important to emphasize that these treatments have had no complications and are extraordinarily effective as noted above. Medicare and other insurance carriers cover the treatment.
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nationalmssociety.org | 1-800-344-4867
2013 walk ms wrap-up
closer to a world free of MS!
We kicked off Walk MS season with the 6th Annual Prescott Walk MS on Saturday, October 5th; then, our 2nd Annual West Valley Walk MS on Saturday, October 12th. Next up was our 26th Annual Phoenix Walk MS and our 1st Kingman Walk MS on Saturday, November 2nd. We wrapped it up with our 1st East Valley Walk MS on Saturday, November 9th. To date, we have raised more than $350,000.00 with over 3,300 participants and 275 teams! Speaking of teams, we couldn’t have such a successful walk without their support and incredible fundraising efforts. Our top team, so far this year, MS Magic led by Team Captain, Doug Mykol, has raised more than $37,000! MS Magic is certainly not alone in these off-the-chart fundraising numbers. They are joined by top fundraising teams: Red Hot Chili Steppers, NO Blarney!, Quad City MS Support Group- Lions, Smilin Phil Will Kill MS and Mixed Nutz. These teams have all raised more fundraising dollars this year than in 2012. Collectively, these teams raised $63,500 last year, and this year together, they raised more than $104,000.00! WOW– way to join the movement, Teams!
Don’t forget that you can still donate to the East Valley, West Valley, Phoenix, Prescott and Kingman Walk MS events through December 31, 2013; what a luc ky way to end the year! Check out our website and donate today at: www.walkmsarizona.org.
Now–take a quick breather… and then get ready to Walk in Tucson on March 8, 2014! Join us for our 21st Annual Tucson Walk MS at Reid Park! If interested in participating or have questions, please contact Crystal Blickfeldt, Community Development Manager, at (520) 325-0755 or email at crystal.blickfeldt@nmss.org. Get registered and donate today at www.walkmsarizona.org.
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MS connection: winter 2013
support the mission:
be an ms rockstar
It’s not to late to be a part of the rip-roaring group that is the MS Rockstars! If you’re ready to go big, you can train for a half marathon, or if you’d like to just dip your feet in the water, consider the mini marathon (5.2 miles). You can even recruit a friend and do a relay together! No matter which option you choose, you’ll have an amazing time and feel good, both by getting healthier. and by raising money and awareness for multiple sclerosis.
What are you waiting for?
Join the shenanigans today and kick start your new year’s resolution! Learn more or register today by visiting MSrockstars.com or by calling (800) 486-6762.
t’is the
season of giving Workplace giving programs provide an easy way to join the movement for a world free of MS. Simply sign up for your employer’s workplace giving campaign and use automatic payroll deduction to make your donation to the National MS Society’s Arizona Chapter. If your employer partners with Community Health Charities (CHC), look for the National MS Society listing under CHC. In Arizona, individuals may support the National MS Society through the United Way. If your employer offers a United Way program, ask your
administration how you can designate your gift to the National MS Society. If your employer offers an independent campaign, ask your program administrator how to designate your gift to the National MS Society. For more information on how to make your work place giving contribution to the Arizona Chapter, contact Chapter President Jim Elfline at (480) 455-3961 or jim.elfline@nmss.org.
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nationalmssociety.org | 1-800-344-4867
MS day at the capitol
legislative conference Each year The National MS Society Arizona Chapter invites activists from around the State to participate in the MS Day at the Capitol: Activists Spark Change Legislative Conference. It is an opportunity for those living with multiple sclerosis to learn more about the legislative process, and to also participate in it. Over the last six years, those impacted by MS have brought their passion and, most importantly, their stories to the Arizona Capitol Complex to educate those in power about life with MS. Past years’ topics have included: access to care, lifespan respite, and cost of disease modifying therapies. This year, MS activists, will be talking with their legislators about the Multiple Sclerosis Education & Awareness Initiative. The purpose of this initiative is to develop strategies that would identify and address the needs of people affected by MS in Arizona, provide persons with MS greater access to various treatments and other possible therapeutic options, and to more effectively utilize existing resources of state agencies and community organizations. We hope to utilize these strategies in order to enhance the quality of life of people affected by MS in Arizona, maximize their productivity and independence, and address emotional, social, and vocational challenges.
For more information to register for this program, please call 1-800-FIGHT-MS, register online by using our Chapter Calendar at arizonams.org, or contact Erika Edholm at 480-455-3959 or erika.edholm@nmss.org.
2014 Activist Spark Change Legislative Conference February 24 – 25, 2014
MS Activist Prep Workshop
Monday, February 24 3 PM – 7 PM Disability Empowerment Center 5025 E. Washington St., Phoenix
MS Day at the Capitol,
Tuesday, February 25 9 AM – 3 PM Arizona Capitol Complex 1700 W. Washington St., Phoenix Cost: $25 Dinner will be provided Monday evening and lunch will be provided Tuesday afternoon.
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nationalmssociety.org | 1-800-344-4867
research advances on
pediatric Ms An increasing number of medical centers across the United States are collaborating on research on how and why multiple sclerosis happens in young people. Their work is already yielding valuable information on early MS-triggers.
a collaborative approach
The Network of Pediatric MS Centers was initiated in 2006 through a grant from the National MS Society. Thanks to its multidisciplinary approach, researchers at participating institutions are gathering important data on the disease. “We have been able to unravel key features, such as distinct characteristics of the disease on the MRI and in the spinal fluid of patients younger than 11,” says Emmanuelle Waubant, PhD, Professor of Neurology and Pediatrics at the University of California, San Francisco (UCSF), which is currently running a large study aimed at unraveling the triggers of pediatric MS. (See sidebar, “What Triggers MS?”) Thus far, the network has learned that MRIs of patients under the age of 11 show larger and more poorly-defined MS scars compared to adults, and that MS scars in young patients often go away within a few months, which is very rare in adults.
They also observed that the spinal fluid of young patients can show more inflammations than in adults. These findings have helped make the way forward clearer. “Now that these distinct features in younger patients have been identified, accurate diagnosis in children with MS is made easier, and early treatment can better prevent disability onset,” says Dr. Waubant. To learn more about pediatric MS and research in the field, visit www.nationalMSsociety.org/ pediactricMS.
What triggers Ms? The Network of Pediactric MS Centers is currently recruiting 640 children with relapsing-remitting MS, or clinically isolated syndrome (a single episode of MS-like symptoms) and 1,280 children without MS for a multiyear study to determine risk factors for developing MS. “We expect the study will provide precious pieces of information on risk factors for MS in general, and maybe help develop new treatments or prevedntative strategies,” says leasd investigator Emmanuealle Waubant, PhD. For more information about participating and the 13 participating locations, contact janace.hart@ucsf.edu or call (415) 514-2476. Originally published in the Gateway Chapter’s MS Connections newsletter.
Arizona Chapter 5025 E. Washington St. Ste. 102 Phoenix, AZ 85034
mark your
calendars January 17: Walk MS Kick-off: Tucson 19: MS Rockstars March 8: Walk MS: Tucson 15: Walk MS: Bullhead City pril A 29: WAMS Annual Luncheon: Phoenix May 17 - 18: Bike MS: Ride the Vortex
See more events and programs at http://calendar.arizonaMS.org.