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.

Six Questions with Allison Bryant

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?

http://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!

Six Questions with Kevin Kelley

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. 

 

Six Questions with Michelle Clos

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

Six Questions with Jeanna Waldroup, ThD

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 us 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 us introduce Jeanna Waldroup, ThD from North Carolina.

  

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!