Develop, Develop, Develop!

Develop, Develop, Develop!

MSF Ambassador Nick Marchesani was diagnosed with MS in 2000 and is the Support Group Leader of the Multiple Strengths Sussex County MS Support Group. He recently completed his Zumba Certification and was awarded the Social Responsibility Award by the Sussex County YMCA.  Nick recently shared a few words with us that we wanted to share with you. Visit the Multiple Strengths website at http://www.multiplestrengths.cjb.net/

 

The Rule for Today: "Develop, Develop, Develop!"

- Always reinvent yourself. Never go stale and always go for the challenge.

I always put myself in situations that I am the student. Why? There's so much to learn from others. Personally, my achievements are always for myself. If and when I can help out others, I'll drop what I am doing and get my hands dirty and focus on to 'Develop, Develop, Develop!"

- Never, ever, ever, feel 'stupid' while learning.

Learn to enjoy it and smile. There are plenty of people who care and will take a couple of minutes to critique what you plan on doing. I personally LOVE the feedback. Make sure to listen to the feedback. Always remember feedback is 'tough love.' The truth may hurt, but the truth will help you to "Develop, Develop, Develop!"

- Goals are never impossible.

I remember back in 2005, I started developing stiffness in my legs which led to my inability to run. And in 2009, I was seriously looking at using a cane for the rest of my life. I lost muscle and gained weight. It seemed as if I was spiraling down to the point of no return. Everything I once did was out of reach. In 2010 while speaking to a crowd of over 1,000 people at Liberty State Park in Jersey City, NJ as the 2010 NMSS Walk Ambassador, I vowed that I would run a 5 mile race once again. Today, I am set toward that personal goal.

A person with MS for 13 years becoming a Zumba Instructor? It happened. I did it. That certificate alone holds gold in my heart. And if I never ever run my own class...oh, well! It's that goal I achieved. It's all about self-pride. I did it. Nothing is impossible.

- What you think will happen, if you let it.

I'm not talking about missing a payment on your credit card or misplacing your car keys. I'm talking about what you love to do. There are ways of making those dreams reality. It's all about looking deep inside yourself and connecting with positivity. There's more than one way to achieve a goal. And I love it when I accomplish something. Everything that I think about doing, I focus on how I can maintain that goal. I constantly review how it gets done. It’s like a never ending movie in my mind. I look at each way - how I can fail, how I can succeed, what if I run into a jam, and how can I get out of it. This goes on over and over and over again in my mind. I'll then try a little, stop, and then try again. There will be times that I'll try until I cannot move anymore. That's when I'll learn my limits and how I can adjust to succeed. It's all in us, at different degrees. All of which are the correct way to "Develop, Develop, Develop!"

- Developing does not end at any age, inability, or disability.

Keep doing what you love. Do not listen to skepticism. It's usually backed by the fear of the unknown. Whenever I speak to doctors and neurologists about my abilities, I always hear to keep doing what I am doing. Believe me when I tell you that even people with college degrees, BAs, etc., do not have answers to the questions I ask. I always hear the blanket statement, ‘Keep doing what you are doing.’ So, I'll keep writing and rewriting 'the book.' In my case it's, 'The Book on Multiple Sclerosis.' No one knows the ending of their personal book. But when we all continue each day writing pages and chapters in our lives, make sure it's interesting, fun, and the way you want it to end.

God Bless!

-Nick Marchesani

In Memory of Helen Mangan

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 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