MSF Cruise for a Cause 2013 - ALASKA!

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 14^th and returns June 21^st, 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!

Six Questions with Brittany Tulaney

Happy Holidays to you! We're back with "Six Questions" and 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 Cruise for a Cause 2013 - Alaska!

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

Multiple Sclerosis Meets the Dragon!

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!

Six Questions with Angela Gorzelsky

Introducing you to another wonderful MSF Ambassador. Diagnosed with MS in 2003, Angela Gorzelsky is a mother, manager of a credit bureau, and an owner of a vending company from Johnstown, Penn. She enjoys walking her dog, practicing yoga and working out, listening to music, and spending time with her grandson. Her greatest joy comes from all the volunteer work she does for MS as a fundraiser and advocate. 

1. How has MS changed your life?

Having MS has changed my life in several ways. It has definitely caused me to have to slow down and do things differently in my everyday life. I can't just go and go anymore the way I used to due to the fatigue. Sometimes I need help with simple tasks like carrying a laundry basket upstairs, putting on a necklace and buttoning my shirt. I love the sun and the beach, but my heat intolerance has sure made those trips a lot different. I used to grab my beach towel and head down to the sand and lay out in the sun for hours. Now, I find the first chair with an umbrella and I have to take breaks every so often and find some air conditioning! On a more positive note, I have become more involved with volunteering and helping others that are affected by MS. I have made a lot of great new MS friends from all over the world. I also see life differently because having MS means you're never sure what the next day will bring for you, so I basically live one day at a time and do whatever I can do that day to be happy.

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

I have always been very independent, so for me the most important thing I have learned is that it is OK to ask for help when I need it. I no longer feel bad or like a burden when I have to ask for help with something.

3. How have you found support?

I have found support in local support groups and being friends with others who have MS. Also, I volunteer a lot for the MSF and my local MS Society Chapter. I am on the Government Relations Committee and attend the Public Policy Conference in Washington D.C. every year where I have met so many wonderful people with MS. I consider all of these things to be my support system.

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

To make sure you take time out for yourself to relax and rest. Don't feel bad if you can't go with friends all the time. Conserve your energy so that you can do the things that are important to you and that you enjoy!

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

I don't know if I have a favorite because there are really so many good ones out there! I like MS Forum and also www.msconnection.org.  Anywhere you can meet new MS friends and talk about your MS, MS related issues, and treatments is a great website for me!

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

Hmmm, well let's see... Okay, here's one for you... How do you react when you meet someone with MS or someone you know tells you they have been diagnosed with MS? Do you treat them differently because they have MS?

Your answer? Why would you treat them any different? People with MS are still the same people except now they have a chronic illness to deal with. MS isn't contagious, so don't treat us like it is! Most people with MS continue to lead full, productive lives. So don't shy away from us or stop asking us to go places and do things. Support us when we need it and continue to treat us with the same love and respect as before you found out we had MS!

Six Questions with Lois Flanigan

Ladies and Gentlemen, please let us introduce Lois Flanigan. Lois was diagnosed with MS in 1992 and 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.