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In Memory of Helen Mangan

Mon, 07 Jan 2013 16:16:03 GMT

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.

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MSF Cruise for a Cause 2013 - ALASKA!

Thu, 27 Dec 2012 18:46:20 GMT

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.”
Tim 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!

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Six Questions with Brittany Tulaney

Thu, 13 Dec 2012 18:36:13 GMT

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?

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MSF Cruise for a Cause 2013 - Alaska!

Mon, 08 Oct 2012 16:11:10 GMT

Here we go! The MSF Cruise for a Cause® is ready to set sail to Alaska on June 14^th, 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

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Multiple Sclerosis Meets the Dragon!

Wed, 26 Sep 2012 16:05:07 GMT

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!

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Six Questions with Lois Flanigan

Fri, 20 Jul 2012 19:54:04 GMT

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.

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Six Questions with Allison Bryant

Fri, 13 Jul 2012 17:04:45 GMT

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!

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Six Questions with Kevin Kelley

Fri, 22 Jun 2012 16:01:20 GMT

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.

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Six Questions with Michelle Clos

Fri, 15 Jun 2012 18:58:47 GMT

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

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Six Questions with Jeanna Waldroup, ThD

Tue, 05 Jun 2012 14:58:44 GMT

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.

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!

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Dr. Kantor Visits the MSF!

Wed, 09 May 2012 16:35:55 GMT

Back in January, we had the pleasure of having Dr. Daniel Kantor, Medical Director of Neurologique and President of the Florida Society of Neurology visit the MSF. While he was here he was kind enough to record some videos for us discussing current treatments (Ampyra, Gilenya, and Low Dose Naltrexone) and upcoming MS treatments. Here is the first video of a three part series called “Moving Forward with MS Treatments.” All additional videos can be found on our YouTube page and on our webpage on the Search for Causes, Treatments, and a Cure page in the Coping with MS section.

You can check out Dr. Kantor’s website at Neurologique or follow him on Twitter at drdanielkantor.

Stay tuned for more videos to come. Enjoy!

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National MS Education and Awareness Month 2012

Thu, 22 Mar 2012 20:09:47 GMT

March is just around the corner, which means one thing for the MS community and the Foundation –National MS Education and Awareness Month (NMSEAM) is kicking into full gear. From fundraisers to passing out awareness kits, the key this month (and all year long) is spreading awareness throughout the community about what MS is and how it affects those that are living with it.

Each year we come up with a theme and initiative to help spread awareness by engaging the MS community. Our Awareness Committee put on our thinking caps and came up with a pretty great theme for 2012, (drumroll, please)…”At Your Best with MS.” While many ideas were in the running, we chose this one because we felt it was incredibly important to encourage people with MS to do everything they can to maintain the BEST quality of life possible with the disease. Only you know how this may apply to your own life with MS, but for many people, being “At Your Best with MS” means adhering to medication plans, eating healthy, keeping fit, finding hobbies and interests that bring pleasure, developing a support network, maintaining good emotional health, and continuing employment when possible.

With the theme decided upon, we needed to come up with an initiative that allowed you to showcase how you are “At Your Best with MS,” and how as you journey through life, you discover that you can do some things better than other things. Thus our 2012 initiative was born – “Show us Your Best.” Embracing your creativity with an essay, poem, video, etc., we want to know what you do well and how you use your best to help the MS cause. Grand prize winner will receive a cruise for two aboard the MSF’s Cruise for a Cause 2013.

We always look forward to NMSEAM because it is a time for the MS community to band together to bring awareness of MS to the forefront. So please join us this year in showing the MS community your best! For more information on how you can get involved or to request an awareness kit, contact us at 800-225-6495 or email awareness@msfocus.org.

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National MS Education and Awareness Month is Here!

Mon, 01 Mar 2010 22:40:20 GMT

And what an exhausting day it has made! I'm recovering from a cold today so I've been working from home, trying to spread the word about everything we've got going on for NMSEAM. I had so much I wanted to say about it here when I first thought about it this morning, but you all will forgive me if for now - ten hours later - you just get the bare bones (i.e. the links)!

Huh, now that I think of it, you may just be thankful for that. :-)

* A new class of MSF Ambassadors will be selected. See the application for full details.

* Two national teleconferences will take place. Here are the details about the Maximizing Mobility teleconference, and here are the details for the conference on Staying Open to Change.

* Eight regional educational programs are scheduled. See this announcement to find out if there's one near you.

* Free MS Awareness Kits are available. Order yours here or click this link for a photo of what's inside. (See also the Get Involved page to learn about this year's initiative and how you can win a free t-shirt and/or be featured in MSFocus.)

* On the Facebook NMSEAM fan page and on our Twitter page we'll be sharing a fact about MS every day of the month, and asking people to pass that fact on to their networks. If you're on FB or Twitter, please think about following us there.

* Over the course of the month, as the inspiration strikes me, I'll be having a few quick (one day at most) t-shirt contests. So keep an eye out here (on LJ & DW), or on the aforementioned FB and Twitter pages.

That's all I can think of for the moment, all though I'm sure I'm missing a number of things. Please let me know what you think of these ideas, and if you have any suggestions for MSF, now or for the future of NMSEAM.

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Random news and links

Thu, 28 Jan 2010 18:29:42 GMT

It's been an exciting week in MS and it's only Thursday! Ampyra was approved by the FDA for MS-related mobility impairment, and human trials began on a drug that is hoped to promote nerve regeneration in people with MS.

The MSF is today's featured charity on YourCause for Human Services. YourCause is an interesting site because it allows you to really connect with others who support the causes you're interested in.

In upcoming news, the MSF's Cooling Program begins its annual cycle on Feb. 1. If you're in need of a vest or other cooling items for next spring and summer, apply early! The applications will be available on msfocus.org once the program cycle officially begins.

National MS Education and Awareness Month is coming up quickly too. More about that soon!

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Is the Flu Shot Safe for People with MS?

Tue, 20 Oct 2009 14:05:45 GMT

I know this is an issue on everyone's minds right now, so I thought I'd re-print this from the news section of our website.

Is the Flu Shot Safe for People with MS?
10/19/2009

Editor’s note: In this news brief, MSF Medical Advisor Ben Thrower, M.D., addresses the topic of flu shots and the flu, including H1N1, for people with MS.

It seems like everywhere you turn, there is news about the flu. What does all this mean for a person with MS? We need to clarify that there are two types of flu bugs being discussed. There is the common seasonal flu and there is the H1N1 or swine flu strain. Vaccines for these two forms of the flu come in both a nasal spray and injectable form. So, here are some general guidelines:

1) No person with MS should receive the nasal spray form of the vaccination. This form is a live attenuated (weakened) virus and is not recommended for people with MS.

2) People with MS who are on one of the beta interferons (Avonex, Betaseron, Rebif or Extavia) or Copaxone are not considered to be immunocompromised. The same is true for people with MS on no therapy. The risks and benefits of getting vaccinated for seasonal flu or H1N1 has to be looked at individually for these people. The risk of getting the flu is not higher in this group, but if they do get the flu, there is a good chance that MS symptoms will increase due to the infection.

3) Some people with MS may be considered to have lowered immune function. This would include people on immunosuppressive drugs like Tysabri, Novatrone, methotrexate, Cellcept, Imuran, Cytoxan and chronic steroids. These people should strongly consider getting vaccinated as they may be at higher risk for getting the flu.

4) The safety of the seasonal flu injectable vaccine has been established by the CDC for people with MS. We expect the safety of the H1N1 vaccine to be similar, although in fairness the vaccine will not have been specifically tested in people with MS.

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Mental Illness Awareness Week

Thu, 08 Oct 2009 18:25:14 GMT

This week (October 4-10) is Mental Illness Awareness Week in the U.S. Coincidentally, we are just putting to bed the latest issue of MSFocus (due in mailboxes later this month), the theme of which is on mental health for people with MS. Why is this an issue?

First of all, because having MS does not exclude you from having any other illness, including mental illness. According to the National Institute of Mental Health, an estimated 26.2 percent of Americans ages 18 and older — about one in four adults — suffer from a diagnosable mental disorder in any given year. They estimate that only 6 percent of those are "serious" mental illnesses, but if you are the one experiencing it, it's "serious." to you.

Moreover, some researchers believe there may be a connection between MS and bipolar disorder, as it appears that bipolar disorder is unusually common among those with MS. This connection isn't proven, but the increased prevalence has been noted.

Then, of course, there's the issue of depression. Depression is an illness that's intimately married with MS. Whether it's pre-existing before a diagnosis of MS, an MS symptom caused by the disease process itself, a side effect of MS medications, or an emotional and physiological response to the stress of dealing with a chronic illness, the fact is that the majority of people with MS will experience depression at some point. It needs to be taken seriously, and it needs to be treated.

This is an area where we cannot afford stigma. Depression can create or aggravate pain, fatigue, cognitive impairment, and a host of other MS-related symptoms. In that light, while it may not be advancing the disease process, you could certainly say that depression makes MS "worse."

Don't allow that to happen to you or someone you know with MS. Treat depression as what it is: a common part of MS that has to be faced. Address it head-on and get treatment. There's help available, if only you make the choice to seek it!

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A Cognitive Conundrum

Wed, 23 Sep 2009 12:36:02 GMT

In a teleconference she did for us way back when, our resident expert on managing cognition problems said that when technological or physical reminders fail you, you have to depend on "human reminder services," i.e. someone who will tell you when you've forgotten something important. Since I often forget to charge my pda or read notes that I leave myself, I rely on human reminder services quite a bit. In fact, most people on our staff know they have blanket permission to nag if they think I'm forgetting something.

This morning, however, my human reminder service was a police officer.

I was returning home after driving my youngest son to school (in my pajamas, of course, because that's when something like this is bound to happen), and a police officer instructed me to pull over. The conversation went like this:

Officer: Good morning, ma'am.
Me: Good morning. What seems to be the trouble, sir?
Officer: Are you aware you're driving on an expired tag?
Me: What?!? No I'm not!
Officer: Yes, ma'am. According to the computer you are.
Me: That's not right. I went down to the tag office myself a few weeks ago.
Officer: Can I see your new registration then, please?
Me: Sure, it's right here in the.... Oh. Oh, no!

You see, I remembered clearly visiting the tag office. I remembered clearly removing the sticker from the new registration and affixing it to the tag. What I did not remember was that the tag I affixed it to was attached to my husband's vehicle, not mine. I was recalling having renewed his tags in July, not mine in August as I thought.

I explained to the officer what had happened (without mentioning that I have mild cognitive dysfunction) and he said, "These kind of oversights happen." But was it an oversight? Or was it a function of my fibro-fog? (That's what we fibromyalgia people call our cognitive symptoms.) There's the conundrum. We never really know, do we? That's what makes it so irritating when 'normal' people say, "Oh, I forget things like that all the time!"

Frustrating as it is, I have to accept that I will never have an answer to that question. So I simply have to adapt. Cognitive symptom or oversight, I just need to make sure it doesn't happen again.

So I really don't mind the $10 ticket. If I hadn't been stopped, I never would've known my memory was playing tricks on me. And it gave me a reason to think about the way my husband and I divide these sorts of responsibilities and that perhaps it's time for me to turn over the more time-sensitive tasks to him. If I have a choice between my husband or a police officer for a human reminder service, I'll choose husband, thanks!

The MSF has some terrific info on coping with cognitive symptoms -- our own booklet, and several books in our free Lending Library. Check out our website to learn more. And our partners at the MS Technology Collaborative have launched cognition-building games at http://www.mymsmyway.com.

Meanwhile, you can make me feel better! Care to share a crazy cognition story of your own? (Remember, you can comment anonymously if you want or use openID to sign in from your own blog if you're not a member here.) Please, let me hear 'em!

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New Treatment Videos Posted

Tue, 11 Aug 2009 18:13:47 GMT

A few months ago, I had the opportunity to meet with Dr. Andrew Brown, a Miami-based neurologist specializing in MS, to update the treatment information videos on our website. A whole new series has been posted as of today. You can find them on the Newly Diagnosed page in the Coping with MS section.

While I had Dr. Brown in front of the camera, I decided to ask him a few questions for our readers here. His responses really show his commitment to the MS community.

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Wow. Has it really been that long?

Tue, 21 Jul 2009 22:15:33 GMT

I was shocked to login and find that it's been nearly two months since I added anything to this blog. But now that I think about it, that sounds about right. Eight weeks to plan, implement, test and deploy our new website = eight weeks of radio silence from me. Still, I apologize to anyone reading! Very shortly we'll have new editions of Six Questions With, a video interview with MS specialist Dr. Andrew Brown, and more of my general philosophizing. Expect a flurry of posts in the next few days. :-)

For now, I'll just give you the quick lowdown.

1. The new MSF website is live and fully functional. There are a lot of new features that I'm really proud of, but perhaps I'll go into more detail about that later. For now, just check it out: http://www.msfocus.org

2. The MSF forums are FINALLY working again. If you were a former forum member, you'll need to change your password. There's an announcement at the top of each forum with instructions. The doctors are already back to work answering questions on the Ask the Doctor forum, so go hit 'em up with your questions before the deluge comes in. You can get to it through the Online Community section of the website, or at http://www.msfocusforum.com

3. The Brighter Tomorrow Grant and Computer Grant Progams are ON! Make a wish and see if it comes true. :-) The grant applications are available on the website under the Programs and Activities section. I'll post in more detail about these programs and their requirements soon.

Well, that's it for me right now. Anything on your minds?

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Study Recruitment Info - and it pays!

Thu, 28 May 2009 19:29:28 GMT

Readers, I just received this information, and I thought you might appreciate it. Our communications staff verified that it's legitimate, but other than that, I can't tell you any more than this, so email them if you're interested:

Harper Global, a pharmaceutical market research company, is searching for people who want to participate in an online market research study about living with MS. This research study will involve several brief, daily discussions on the topic of MS which will take place online from June 9 to12. To qualify you must be between 18 and 70 years old, diagnosed with MS for at least six months, and must not use a wheelchair. You must have access to a computer several times a day to answer the online questions. Identities, opinions and perceptions will remain anonymous. About 35 people will be selected to participate. Participants will be compensated $100 for their time and participation, provided they complete the entire survey. If interested in participating, email Recruiting1@harperglobal.com for more information.

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World MS Day: What Does it Mean?

Wed, 27 May 2009 18:21:41 GMT

Today is World MS Day. Much like any holiday or observance, I'm guessing it means different things to different people. To some of us, maybe it's a day to think about our own circumstances - how MS has affected our lives, and what we can do to improve or change that. To others, like those of us who work with MS in an organizational setting, maybe it's a day to think about the global impact of the disease. But one thing I'm sure of is that to most people on the globe, it's just another day.

There's the rub. Those are the people we need to reach.

Recently, I polled my friends and family and gave them a multiple choice question: "Kasey works for..." About half of them chose muscular dystrophy rather than multiple sclerosis. (Have I mentioned that I've worked for the MSF for more than fifteen years?) It's certainly not that I don't talk about my work - believe me, I do. It's that the terms "MS" and "multiple sclerosis" don't form a clear picture in their minds.

When I say "diabetes" what comes to mind? Do you think about blood sugar, insulin, needles? If I say "high blood pressure" perhaps you think about diet, exercise, or salt intake. You understand what those illnesses are and how they're treated. The average person cannot say the same about MS. MS is just another disease acronym, just more alphabet soup.

That's why today is important. It's up to us to teach people what those letters mean. So today, while I hope you will think about the global impact of MS or how MS has affected you personally, I also hope you'll tell others about MS -- people who aren't affected by it, people who've perhaps never heard of it. Let them know what those two letters mean to the hundreds of thousands of people observing World MS Day today.

P.S. Don't forget about tonight's MS Town Hall. Please join in and tell us what you think are the unmet needs in the MS community!

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Six Questions with Tim Carr

Tue, 26 May 2009 21:30:29 GMT

Six Questions with...
Six Questions with Tim Carr, retired TV reporter

1. How has MS changed your life?

MS has made me a more compassionate and self aware person, one who is concerned about others particularly those who may be enduring a life altering illness.

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

I’ve learned that doctors and other medical experts don’t know everything and are quite often proven wrong when it is time to deal with a sickness. I’ve also learned that while not everybody that lives with MS has the same experiences, you can’t let that cause anxiety and worries in your life.

3. How have you found support?

First of all, I have my wife. She is my caregiver and conscience. I also have many friends and associates who are keeping a good eye on me. I’ve also found support from the various MS agencies and my treatment providers. I get a lot of support from my MS peer support group. My church congregation is a major supporter.

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

I’ve come to realize that what ever the situation, it won’t last forever so you should not let it consume you or your life.

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

I go to MSFocus and the national and local MS Society websites.

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

What does a person with MS look like?

Your answer?

Everybody else.

Really I think that sums it up, Tim! What do you think, readers?

P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.

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Six Questions with Stuart Schlossman

Mon, 25 May 2009 23:35:19 GMT

Six Questions with...
Six Questions with Stuart Schlossman of Stu's Views and MS News (an MS advocate, blogger, source for MS information and MS peer).

1. How has MS changed your life?

Hmm, tough question!! Well, I want to think that it's made me a better person. When not having a disability, we tend to see the world differently.

I was diagnosed with multiple sclerosis in 1998. After the usual few months of "why me?" I decided I was "chosen" to acquire this illness and with the use of my "big mouth," I could help to lead others... I want to leave my mark upon the world, letting others know that there are those who fend for them.

So, in answer to the question, how has MS changed my life? It has made me a more caring and attentive person -- towards most people. MS caused me to change from being obnoxious and abrasive to now being obnoxious and abrasive and a "humanitarian.”

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

That much good often comes from bad things... There is always an equaling offset. All the good people that I may not have met, had I not been "chosen" and all the good that I have been able to give of myself, for those needing what I provide. ( Read more... )

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Six Questions with Bill Brayer

Fri, 22 May 2009 21:30:44 GMT

Six Questions with...
Six Questions with: William L. “Bill” Brayer - Founder of MS Helping Hands

1. How has MS changed your life?

From having my own business and being very active to adjusting as to what I can do and forget what I can’t. The best thing I did was to become an MS volunteer and founded MS Helping Hands-MSHH & the MSHH Donor Closet as both provide services & resources that are not provided by NMSS and other local social services agencies.

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

How serious MS really is and that there are NO two people with MS alike. The general public still doesn’t have full knowledge of the disease and what the people and families of those with MS have to go through and how their lives have and will change.

3. How have you found support?

From the Sno-King support group that I have co-facilitated for over 20 years and from the MSF. My wife, family, church and friends have been very understanding of my symptoms and what I am no longer able to do.

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

Live each day as if it were the first day of your life and enjoy it to it’s fullest. You may have MS, but MS doesn’t have you.

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

I actually cruise the Internet to learn all I can from many sites.

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

What would you do if the shoe was on the other foot?

Your answer?

I hope that I would never turn away from someone I love or care about because she or he had a disability.

Really good question, Bill! What do you think, readers?

P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.

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Six Questions with Jude M. Hubber

Thu, 21 May 2009 20:10:01 GMT

Six Questions with...
Six Questions with: Jude M. Hubber, Director of Customer Relations with the largest relay race in the world and a lover of life.

1. How has MS changed your life?

MS has changed my life in many ways. Most importantly it has taught me to reprioritize and realize I have strengths I might never have used before. I now let certain limitations open up doors I once never dreamed.

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

To be positive every day, and never let a bad moment carry to the next day.

3. How have you found support?

My family. Not everyone is as lucky as me. That is why I believe the MSF is such a great group. Being open is a great way to find support. If you have a question, just ask.

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

Laughter. Don’t take things so seriously. Nothing in life is worth not laughing about. If you can’t laugh, smile. We teach children how important smiling is, but somewhere along the line we forget to teach ourselves the same thing.

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

Msfocus.org and espn.com.

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

Do you hide that you have MS from anyone and why?

Your answer?

No! If I am afraid of being fired because I have MS, then I don’t want that job anyway. People need to be smart about making sure they are employed, but don’t lead a separate life just to feel more stable. The stability is nothing without honesty.

Jude is definitely open about his MS, as you can see in his MSF Ambassador video. It's an interesting question for our readers: Have you hidden your MS? How do you feel about it?

P.S. to people who came over from other sites: You can still join the discussion! Our blog supports openID (meaning if you have a blog on another site, you can probably use that to sign in as an openID commenter) or you can comment anonymously.

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