Meet the GILENYA Guides

Tim S.

Behavioral health practitioner and sports psychology professor
He completed his master's program

How did you find out you have relapsing multiple sclerosis (MS)?

I found out I had relapsing MS when the fingertips on my right hand went numb. I was playing catch with a baseball and I started to have difficulties gripping and catching the baseball.

  • Q. How did you react to your relapsing MS diagnosis?
  • A.I was shocked. The way I thought my life would play out was slowly being crumpled up, and I did not know what to do with myself. Everything was unknown.
  • Q. How has your attitude toward relapsing MS changed?
  • A.My attitude towards relapsing MS has changed over the years. Right now, I feel confident in my ability to manage the symptoms of my MS and how it affects my life each day.
  • Q. What would you tell someone who's been recently diagnosed with relapsing MS?
  • A.Relapsing MS is not fun and enjoyable. It will change the way you live your life. However, relapsing MS is something you live with—NOT something that defines you. The 'tornado' of a life will eventually slow down, and this living with MS will become 'normal.' It is important that you have strategies to move forward once things return to 'normal.'
  • Q. Why did you and your doctor choose to start GILENYA®?
  • A.My doctor and I decided that GILENYA would be an appropriate option because it was a once-a-day* pill, not an injection, and it fit my active lifestyle well.
  • Q. Was there a difference between what you anticipated for the First Day on GILENYA and what actually took place?
  • A.Yes. Honestly, I thought that the 6-hour observation meant I had to stay in a hospital bed being observed by nurses the whole time! Instead, I was in a clinic with couches and our own TV with a DVD player. I was allowed visitors, and we could walk around the clinic together.
  • Q. What was your First Day on GILENYA like? What did you do to pass the time (during the 6-hour monitoring of the first dose observation, or FDO)?
  • A.My 6-hour observation was pleasant. It inadvertently carved out 6 hours to enjoy time with my mother and girlfriend. We talked and watched movies all day.
  • Q. What does being a GILENYA Guide mean to you?
  • A.Being a GILENYA Guide is very special. I am able to share my experiences with relapsing MS and GILENYA. I am able to give back to the MS community and help others. I am able to inspire and motivate others through my story.
  • Q. In what ways, if any, has your journey with MS had a positive impact on your life?
  • A.Relapsing MS has provided so much positivity in my life. I have found a passion in working with, teaching, and coaching children and adults. It has given me the perspective to know that while I may not be able to do one thing, I can still do other things.
  • Q. Have you found new ways to stay active now that you're living with relapsing MS?
  • A.I have always been an active person, and I have tried to not let relapsing MS get in the way of my active lifestyle. I stay active by doing exercises, activities, and sports that cater to my MS and give me the ability to move at my own pace and intensity. I have also started to play volleyball and golf. These sports allow me to stay competitive but not be as physically draining.

*GILENYA can result in a slow heart rate when first taken. You will be observed by a health care professional for at least 6 hours after you take your first dose. You may need to repeat this monitoring if you miss a dose or are a child who is moving to 0.5 mg from the 0.25 mg dose.

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Speak up and share your message. Tell multiple sclerosis (MS) how you really feel by posting your message on our "HEY MS" message board.

Make sure your voice is heard. We love that you want to say "Take This!" to relapsing MS, but there are still some words even we can't use—words that might not be appropriate. They're defined in the Community Guidelines below. But have no fear; we'll give you a heads up if you use any problematic words by highlighting them after you hit submit. So, go for it, and tell relapsing MS how you really feel!

  • Do not include medical advice or any non-approved use of GILENYA

  • No profane, indecent, or inappropriate language in your message or image, please (a no-no)

  • Avoid using your full name and/or e-mail address in your message, so this personal information remains private and protected

  • Do not include spam, such as links to or URLs for other websites or social networks in your message

  • Refrain from sharing any treatment and/or dosage information, as well as names of specific medicines (brand name or generic) and product manufacturers

  • Avoid mention of side effects from GILENYA. We take drug product safety seriously. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call
    1-800-FDA-1088

Please note that in order to comply with our Community Guidelines as well as the FDA's Prescription Drug Advertising Guidelines, your statement may be subject to modification, while maintaining the spirit of your message. Your photo and statement may be used in other GILENYA marketing materials

 
 

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