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07 January 2013 @ 11:08 am
We are deeply sorry to announce the loss of a passionate advocate for the MS community. Helen Mangan, MSF’s Associate Director of Support Groups and Outreach has passed away. Since 1995, Helen had worked tirelessly to provide support for people with MS and their families.

Helen wholeheartedly believed in the power of support groups to give people the strength to battle multiple sclerosis. Over 17 years with the MSF, she nurtured the growth of the MSF’s Support Group Program from a dozen scattered groups in 1996 to a nationwide network of nearly 150 thriving groups today. Helen’s vision of a support group as a positive, enriching part of life for people with MS helped nourish a movement away from support groups as ‘pity parties’ and toward groups that serve to provide a sense of community and camaraderie.

Over the years, thousands of people with MS and caregivers came to know Helen and to count her as a friend. Her energy, determination, and compassion were an inspiration. Her passing is a loss to the entire MS community.

Helen’s first priority was serving the needs of the groups she assisted, so the MSF will continue to be there for the support group leaders, co-leaders and members who meant so much to her. MSF’s Lead Caseworker Crystal Milligan will be stepping in to keep Helen’s legacy thriving.

Those who would like to share their memories and positive recollections about Helen can email them to editor@msfocus.org or post them on https://www.facebook.com/MultipleSclerosisFoundation. Some of these will be included in articles in tribute to Helen in the MSF’s publications. All these happy memories will be collected and presented to Helen’s family with the love and sympathy of the MS community.




 
 
 
msf_staff
27 December 2012 @ 01:14 pm
See Alaska by sea this June 2013! The Multiple Sclerosis Foundation is once again offering an incredible opportunity to visit one of the most exciting and scenic areas in North America aboard Celebrity Cruise’s finest ship, Solstice. So much to do and see! Come with us as we navigate the Tracy Arm Fjord and see the splendor and beauty from your vantage point aboard the ship. You can see the Alaskan wildlife as we visit Juneau, gaze out the window at the scenic views in Skagway as you take the accessible White Pass and Yukon Route Railway, or stroll through Ketchikan, Alaska’s first city and the “Salmon Capital” of the world. And that’s just to name a few of the exciting activities on this voyage.


 

 

 

 

 
 





In addition to the amazing sites and scenery, don’t forget about our variety of motivating, educating, and empowering programs presented by MS experts. These include:
  • Deborah Backus, Ph.D. – “Avast ye, Matey – Rehabilitation in MS: What Works?”
  • Emily Cade – “Navigating the Treacherous Waters of Health and Disability Insurance” and “Life Care Planning or Walk the Gang Plank!”
  • Gerald Bilsky, M.D. – “Coordinating Patient Care for Smooth Sailing” and “The Rough Seas of Spasticity.”
  • Time West, M.D. – “What’s in the Pipeline (Not the Alaskan Pipeline)?”
  • Ben Thrower, M.D. – “Relapses: Watch Out for the Iceberg!”
  • Daniel Kantor, M.D. – “Depression: Riding Out the Tsunami.”
  • Gail G. Gibson, Ph.D., PG, CPG, REP – “The Changing Face of Alaska.”
The MSF Cruise for a Cause 2013 departs from Seattle, WA on June 14th and returns June 21st, 2013. Along the way we will be visiting: Ketchikan, Alaska; Tracy Arm Fjord, Alaska; Juneau, Alaska; Skagway, Alaska; Alaska Inside Passage and Victoria, British Columbia. For more information contact the Multiple Sclerosis Foundation at 800-225-6495 or visit http://www.msfocus.org/Cruise-for-a-Cause.aspx. To obtain pricing information or to book your trip, please call Gabriela Aragon at Aragon Travel at 800-659-0081 or email gabriela@aragontravel.com.

MSF Cruise for a Cause 2013 is an experience of a lifetime where you can visit with old friends and make new ones. We look forward to sailing with you!
 
 
 
msf_staff
13 December 2012 @ 01:24 pm
Happy Holidays! We're back with MSF Ambassador Brittany Tulaney. Brittany was diagnosed with relapsing-remitting MS in the winter of 2005. She is a New York Yankees fan who loves spending time with her husband and her two dogs.


1. How has MS changed your life?


Having multiple sclerosis can really put a damper on things, but the way I see it is, it can only impact your life as much as you let it. I was first diagnosed with MS even before I could walk into a bar and I have really only gotten upset about having the disease once. I went from being a top female employee for the northeast region of a well-known company to being put on long-term disability at the ripe age of 25. When I met my husband, I was only 22, but I was honest about having the disease and he doesn't hold it against me, and he never will. He thinks I am the strongest person he has ever met. That really gives me something to stand up to and I am very proud to hold that status.
I might not be able to work or drive, but I am a wife and a proud mom of two adorable puppies. Some people don't consider dogs children, but they are all that and more to me since having a child is too risky for me. If I didn't have my "kids" to keep me focused on a daily basis and to keep me smiling, I don't know where I would be. They can lick tears away and my yorkie even makes exercise on the treadmill fun.

2. What is the most important thing you’ve learned since your diagnosis?


People can be small-minded and think that having MS is the end of the world, but I have learned to only surround myself with the right people (and doctors) that want to see me succeed. Not only in life, but with the disease. I feel that it is very important to have supportive people in my life, not just behind me, but beside me as well. Also, I have learned that being honest with your MS doctor is the best thing to be. I don't want someone telling me what they think I want to hear. I want to be told what I need to hear, good or bad.

3. How have you found support?

I maintain good relationships with my doctors. On top of that, being on Tysabri has really introduced me to a lot of people. I don't get my infusion near my home town, so every month I have to be taken two hours away for it. Every time I am getting treatment, I get to meet someone new. Someone who has gone through what I have, someone who wants to know what they may experience, someone who is fearful of the disease, someone who needs me, or someone whom I need. I met my "MS Sister" out at our treatment site. I literally have only met her twice, but we talk every day!

4. What is the best coping tip you’ve picked up?


Keep a positive attitude!

5. What is your favorite MS- or health-related website?


www.WebMD.com

6. This is the bonus question! What question would you like to ask our readers?

Does always seeing and hearing about breast cancer anger you?
Your answer? I was told years ago that a cure for MS isn't advertised as well as breast cancer because 'MS isn't known as a deadly disease.' What people don't know is that a lot of people with MS feel dead on the inside. Why don't we have MS charm bracelets? Why don't local TV stations hold benefit events? Why isn't there ever a commercial on TV for raising money towards a cure?
 
 
 
msf_staff
08 October 2012 @ 12:09 pm

Here we go! The MSF Cruise for a Cause® is ready to set sail to Alaska on June 14th, 2013 and we are very excited to introduce the speakers who will be joining us on our educational journey back to “The Last Frontier.”

Ben W. Thrower, M.D., is the Medical Director of the Andrew C. Carlos MS Institute at Shepherd in Atlanta, Ga. Dr. Thrower is a clinical instructor of neurology at Emory University and participates actively in clinical research. He serves on the board of directors of the Georgia Chapter of the National MS Society, has served on the board for the Consortium of Multiple Sclerosis Centers, and is the Senior Medical advisor to the Multiple Sclerosis Foundation. In 2005, he was the first physician inductee into the Georgia Chapter of the National MS Society Volunteer Hall of Fame

Timothy West, M.D., is the Director of the Multiple Sclerosis Program at Cleveland Clinic Lou Ruvo Center for Brain Health, in Las Vegas, Nev. Dr. West is very involved in clinical research and has experience running clinical trials within an MS Center. Dr. West has taught within the medical school at UC San Francisco for the past three years. He frequently participates in patient education programs and is very committed to providing comprehensive care for patients with MS. Part of his clinical fellowship included special training in neuro-urology, spasticity management, and neurodiagnostics.

Deborah Backus, Ph.D., is Director of MS Research for the Andrew C. Carlos MS Institute at Shepherd Center in Atlanta, Ga. Dr. Backus is responsible for developing and leading a research program that includes cutting-edge therapies and treatments to improve clinical outcomes and the quality of life for people with MS. Previously the Associate Director of Spinal Cord Research, she is an experienced physical therapist clinician, educator, and researcher.

Emily Cade, M.S., CRC, CCM, CLCP is a Certified Case Manager, Certified Rehabilitation Counselor, and Certified Life Care Planner, at the MS Institute at Shepherd Center. Emily was chosen as the 2008 Medical Provider Volunteer of the Year by the National MS Society, GA Chapter. This award honors volunteers for their years of dedication and success in helping to raise awareness for MS, raise funds for MS, and provide direct services and resources to clients living with MS

Gerald Bilsky, M.D., is a staff physiatrist for Shepherd Center's Acquired Brain Injury and Spinal Cord Injury Programs. Dr. Bilsky is co-chair of Shepherd Center's Ethics Committee. He is recognized as a leader in the field of physical medication and rehabilitation and has served on numerous committees and organizational boards of directors. Dr. Bilsky has been published in regional and national medical journals and frequently gives presentations in relevant areas of the specialty of rehabilitation medicine.

For more information contact Gabriela Aragon at Aragon Travel. Phone: (954) 322-1030 or gabriela@aragontravel.com.  Or contact MSF Educational Programs Coordinator Alisa Farber atcruise@msfocus.org or at extension 1-800-225-6495 x148.

http://www.msfocus.org/Cruise-for-a-Cause.aspx 

 

 
 
 
msf_staff
26 September 2012 @ 12:00 pm
Betty Gibson is a part of the new class of 2012 MSF Ambassadors. She is a veteran of our MSF Cruise for a Cause and she engages in many activities to help the MS community. She recently took part in riding on a Dragon Boat and it sounded like such a cool experience that we asked if she could write a little bit about it.

Multiple Sclerosis Meets the Dragon!

Hi! I am Betty Gibson, and have had multiple sclerosis for over 30 years. My main problem is that, ‘no I can’t do that’ just doesn’t fit my vocabulary. When one of our neighbors in The Villages, Florida – our part-time home – invited me to ride on a Dragon Boat, of course I said yes. Did I know what I was going to do? No!

A Dragon Boat holds 20 paddlers who, with the steerer and cadence counter, work very hard to keep the narrow, canoe-like boat level and smooth in the water. At the same time, racing speed is the norm. The regular teams exercise strenuously and practice often. Push ups? They do that. Sit ups? Easy…for them! Needless to say, this was not something for me. However, I did it! (No, not the exercises!)

The team I joined for a morning workout just returned from competition in Hong Kong. Yes, they are that good. I did paddle, most of the time. However, the racing power-starts unseated me. Hold on, or you will be sitting on the lap of the person behind you!

Would I do it again? Of course! Multiple sclerosis may be a part of my body, but it is not and will not be a ruling factor in my mind. Go, Dragon Boat!
 

 
 
 
msf_staff
20 July 2012 @ 03:41 pm
Ladies and Gentlemen, please let us introduce Lois Flanigan. Lois  was diagnosed with MS in 1992 and she became a MSF Ambassador in 2011. She is an animal lover who lives with her husband in Aberdeen, S.D. Together they began a self-help group called, Striving Against Multiple Sclerosis (SAMS), to help those in the community experience positive reinforcement as they live with MS.



How has MS changed your life?


I get to stay home now – something that most people wish they could do. However, the old adage of 'be careful what you wish for' certainly does apply. I was a type-A personality, working 10 hours a day, taking care of the home, and volunteering in the evenings. I now have to budget my hours for what I need to do and what I want to accomplish during the day. Otherwise I will be spending more time in bed than I want.

What is the most important thing you’ve learned since your diagnosis?

Do what you can with what you have, while you can. I am by no means invincible, but I am still needed and have a job. A small kitten in the bathroom forced me to get out of bed and feed him some 6 years ago, so I am definitely needed. I can still do some of the things I used to, just not the same way. I have 'modified' my hobbies and chores so they take less energy and effort to get completed.

How have you found support?

My biggest support lives with me - my wonderful husband who at times understands my MS more than I, and my four-legged family of cats and dogs who love having me home. However, for answers to my questions and help with MS, I follow a saying from my childhood, “Knowing the answer is not genius, knowing where to find the answers is.” So, I research libraries and the internet, and question doctors and nurses – anyone who may be able to assist, or know where I can get help. And, I started my own support group, Striving Against Multiple Sclerosis (SAMS), to help others, and keep attitudes flowing in a positive direction.

What is the best coping tip you’ve picked up?

To deal with one thing at a time. MS can be, and is, an overwhelming journey in a life. I say journey because I look at it as a roadblock in my road of life. Now, I can choose to try and crawl over the roadblock, go around it, or sit and hope someone else will remove it for me. The latter is a very unlikely situation. I need to be proactive, positive, and forward thinking. Each day I can still cook a meal, or do a load of laundry is now a good day.

What is your favorite MS- or health-related website?

www.lumosity.com is a website to help with brain 'training', if you will. I love the games on this site. I also interact with others who have MS on Facebook and play the games on the site. All of these help keep my mind active. For MS information I have found the most user friendly website is www.msfocus.org. It provides me with information that is invaluable to me and my family.

This is the bonus question! What question would you like to ask our readers? Your answer?

What have you done to accept your MS?

Your answer? I started a support group to interact with others who have MS. Together we work for answers, ideas, and help each other Striving Against MS.



 
 
 
msf_staff
13 July 2012 @ 12:50 pm
Hope everyone is having a good week and staying cool with all of this HOT weather! We love highlighting our ambassadors, so this week's "Six Questions" introduces you to Allison Bryant. Allison Bryant is an MSF Ambassador from Huntington, NY. She is a competitive ballroom dancer who teaches at her own nonprofit dance studio on Long Island. She gives free dance classes to needy children, and also offers special classes for children and adults with MS. Her goal is to travel the country and teach dance and movement workshops to people with MS.



1. How has MS changed your life

Having MS has opened my eyes to a whole new world. It has taught me that it's okay to ask for help and not only are there people in my life who are willing to help, but I have discovered the kindness of strangers. It has humbled me. It hasn't changed in a completely 100% positive sunny way, but I have embraced the difficulties after six and a half years of living with this disease.

2. What is the most important thing you’ve learned since your diagnosis?

I've learned that I'm not superwoman and it's OK!

3. How have you found support?

I've reached out to the medical community and have found support from doctors, nurses, PTs, OTs, therapists, and even receptionists at the office. When I go to the doctor, hospital, or even get blood drawn and I'm not having a good day, they know how to make me feel better and I know there is always someone to talk to or sit with me.

4. What is the best coping tip you’ve picked up?

It's okay to have ice cream for dinner, as long as you don't do it every day :)

5. What is your favorite MS- or health-related website?

www.drweil.com

6. What question would you like to ask our readers?

Have you ever said "I can't do that" because of the MS?

Your answer

I thought I wouldn't be able to dance again, but now I'm a competitive ballroom dancer. There's nothing I can't do, I just not may able to do it the same way as people with no limitations or diseases!



 
 
 
msf_staff
22 June 2012 @ 11:42 am
Happy Friday to you all! This week's "Six Questions" highlights Kevin Kelley. Kevin is a MSF Ambassador and facilitates the Central Brevard MS Self-Help Group, which has over 200 members and counting! He attends health fairs and presentations on MS letting people know help is available. Kevin lives in Florida with his wife Roxan and his son Scott. He is a great guy and we appreciate all the work he does for the MS community!




1. How has MS changed your life?
In some ways, MS has changed my life for the better. I have gotten so many opportunities to help those living with MS. Our group, the Central Brevard MS Self-Help Group has allowed me to better understand what my life’s goals are – helping those living with this disease. I’ve heard others say, “why me” when it comes to their MS, and I say “why not me?,” am I any different from anyone else? We are all given 24 hours a day; it’s up to you to determine what you are going to do with those hours. I say that we should all strive to make our lives better by helping others.

2. What is the most important thing you’ve learned since your diagnosis?
That I cannot let MS be my whole life. Yes, there will be days when it feels like MS is my whole life, but when it’s not, get out there and live!

3. How have you found support?
Support for me comes from many places – my wife Roxan, my son Scott, and the members of our self-help group have been a blessing. My doctors act as a team to keep me going. The MSF and other MS agencies have provided support and education.

4. What is the best coping tip you’ve picked up?
The best coping tool I have found is to be educated about MS. Understanding what it is, what treatments are available, and just the knowledge of what others have shared with me has to be one of the greatest assets. Everyone should be in a support group. The knowledge that you gain from others who have had longer experiences with MS is really important.

5. What is your favorite MS- or health-related website?
There are so many different websites for MS and each has its merits.

6. This is the bonus question! What question would you like to ask our readers?
My bonus question to the readers is: Are they willing to take a “DARE?”

Your Answer?
Each day is an educational experience. I’ve asked my members to take that “DARE.” Each letter represents something. “D” stands for Dream, think up a realistic goal. “A” for Action, put that realistic goal into action. “R” stands for Results, see what happens when you put that goal into action. Finally, “E” for Education, you learn for those results – whether bad or good, you learn. Mistakes are just as important a learning tool as success. So I ask each of you to take that “DARE” tomorrow, the next day, and all the days you have. Each day has something to give. It will only give you what you put into it.

 
 
 
msf_staff
15 June 2012 @ 01:47 pm
Hey Folks - We are back again with another "Six Questions." Today we shine the spotlight on another one of our amazing MSF Ambassadors, Michelle Clos! Formally diagnosed with MS in 2001, Michelle is an Associate Credentialed Coach, a Certified Employee Assistant Professional, and a Licensed Professional Counselor from Dallas, TX. She contributes to a column in the MSFocus titled, “Advice from the Job Coach.”

1. How has MS changed your life? Learning about the unpredictability of MS, i.e., I could be walking one day and paralyzed the next was overwhelmingly frightening for a person like myself – self-motivated and highly structured, or as some people have noted a ‘control freak.’ I prefer the former description to the latter. When the initial shock of diagnosis and unpredictability wore off, I accepted the prognosis and made the decision I believed changed my life: I may not be able to control MS, but I definitely control how healthy I chose to be.  I could manage my well-being with exercise, eating healthy, and work on reducing my stress level. I became a consumer of all information related to maintain good health. The way I saw it, I may have MS, but I was going to practice all the preventive behavior there was to prevent from getting any our health problems.

 2. What is the most important thing you’ve learned since your diagnosis? I have to be my own best advocate and respect my physical and emotional needs. It’s my responsibility to remain educated about MS and the treatment for it, as well as being committed to maintaining my well-being. To do this, I read several of the current MS magazines and have learned to pay attention to the signals my body and heart were sending me.

3. How have you found support? Once I made a commitment to remain aware of my well-being and practice advocating for myself, I learned to ask for help to get my needs met. I also learned how to explain MS to others in order to educate them on how to support me, i.e., ‘Yes, I would love to go shopping with you, but let’s do it early in the morning when I am at my best.’

4. What is the best coping tip you’ve picked up?  Gratitude for what I have rather than focusing on what I have lost or may lose. 

5. What is your favorite MS- or health-related website?  The MSF Facebook page

6. This is the bonus question! What question would you like to ask our readers? What have you learned from having MS and how do you use what you’ve learned to help others?

Your answer?  I have learned by practicing self-awareness and gratitude I can increase my well-being.  I use this information when I coach others with MS, whether it is on career, health, or life goals


 
 
 
msf_staff
05 June 2012 @ 10:19 am
Hey guys! Have you heard about our MSF Ambassador Program? If you have, then you know about the awesome benefits of it. If you haven’t, let me take a brief second to explain. Every year, we chose 10 people with MS to become MSF Ambassadors. It is a volunteer-based program where we train those with MS to learn to be an advocate for themselves, the MS Community, as well as informing others about the services of the Multiple Sclerosis Foundation. MSF Ambassadors hold fundraisers, distribute information to doctor’s offices, and participate in MSF Educational Programs in their area. We seriously have an awesome group of ambassadors, so we wanted to take the time on our blog to highlight them. Recently, we asked them six questions about themselves and throughout the weeks we will be presenting them. So without further adieu, please let me introduce Jeanna Waldroup, ThD from North Carolina.

Jeanna

Six Questions with Jeanna Waldroup, ThD

Jeanne Waldroup is a MSF Ambassador who holds both a Master of Theology and a Doctorate of Theology. She lives in the beautiful mountains of Western North Carolina with her husband and two children.

1. How has MS changed your life? Multiple sclerosis has given me the opportunity to see life in a new way. In other words, don’t sweat the small stuff! I have learned to face the challenges of the disease with the support and love of my family. I have two favorite sayings: ‘Attitude is Everything’ and ‘Never Give Up.’”

2. What is the most important thing you’ve learned since your diagnosis? To hold each day as the special gift that it is.

3. How have you found support? My family and friends at church are always there to help me. They offer me encouragement, prayers, and are always concerned for how I’m feeling. They are the greatest.

4. What is the best coping tip you’ve picked up? Power naps!! If I need to rest, I do. When I wake up from a good nap I feel energized to continue on with my day and enjoy my family.

5. What is your favorite MS-or health related website? Msfocus.org, of course!

6. This is the bonus question! What question would you like to ask our readers? What is the most bothersome symptom related to your MS?

Your answer?
I actually can only narrow it down to two. They are fatigue and burning feet. I would love to have just one day where my feet wouldn’t burn like they are on fire!