Keeping My Body Moving and My Attitude Positive While Living with ALS
Posted: February 28, 2023 | Word Count: 1,605
This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for U.S. audiences only. Ned Patterson is an actual patient who is taking RADICAVA® (edaravone).
The information provided here is general in nature and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are strongly encouraged to seek the advice of your doctor or other qualified health care provider with any questions regarding a medical condition.
Individual results may vary. Please see Important Safety Information below, full Prescribing Information and Patient Information on Radicava.com.
I’ve always been just a skinny old boy from Blacksburg, Virginia, full of mischief and charm. Attitude—it’s kind of my life story. I’ve always felt it was a choice, and one that I was trained into by my mother, God rest her soul. It’s our choice to look at life with the idea that the glass is two-thirds full. To heck with the half full! My family and I are going to grab it and keep appreciating life together.
The road to diagnosis
My journey with ALS started when I noticed it was getting harder to mow the lawn. I had to take breaks to catch my breath and get my strength back, even though our yard isn’t very large. It was a deterioration of things, like when my strength started to slide. That was when my bride and I first started to get suspicious. Things were just not right.
Moving forward from the diagnosis
When we got the ALS diagnosis—swallowing that kind of news—it took me and my wife a while to recover. The panic set in first, with us saying “What do we do? How do we fix this? What’s available?” Frankly, my family and friends were crushed. It was very depressing—a very sad time. Everyone around me was incredibly supportive, though. And the company I work for and my colleagues in the industry have also been really incredible. I’m fortunate to say I’ve been overwhelmed with kindness.
Living in this fear of “What’s next? How am I doing? When is the end going to be?” has been the biggest challenge. I choose to fall back on my faith. I consider my illness and my challenge part of my faith journey.
Learning to focus on what’s important
I came to the point where if I look at my diagnosis in a panic, I’d never get anything done. I needed to treat every day I’m given as a blessing and work with a mindset that we’re all mortal and we need to move forward. That helped me immensely with the realization that whatever life and ALS throws at me, I’ve got today.
When I get up in the morning, the first thing I do after getting out of bed is make it and get ready for the day. As long as I can physically continue to make my bed, that’s what I’ll do. By my example, I want people to see that life may throw you some curveballs, but you can still enjoy life and be a positive example.
Taking control of my life
Since my diagnosis, I have tried to maintain as much of the lifestyle that I enjoyed before by continuing to work full time. I work from home remotely rather than onsite at the office. ALS, however, has not been without challenges as far as the erosion of day-to-day activities, and I try and keep my body moving and my attitude positive so that I can enjoy life to the fullest.
Talking to my doctor about RADICAVA® (edaravone)
I asked my neurologist early on, after my diagnosis, about RADICAVA® having been referred by an acquaintance who was diagnosed and was taking it himself. I learned from my neurologist that it may help slow the loss of physical function caused by ALS. We also talked about the side effects. At the end of our discussion, we decided it was the best choice for me to start RADICAVA®. If someone living with ALS asked me whether I thought they should try RADICAVA®, I would encourage them to talk with their doctor about it.
Want to learn more about RADICAVA®? Watch the How RADICAVA® May Help video at HowRadicavaMayHelp.com.
Individual results may vary. RADICAVA® is shown to slow the loss of physical function as measured by the ALS Functional Rating Scale-Revised (ALSFRS-R). Talk to your doctor about all the benefits and risks associated with treatment.
RADICAVA IV and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Do not receive RADICAVA (edaravone) IV or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA IV and RADICAVA ORS.
Please see Important Safety Information below and full Prescribing Information and Patient Information on Radicava.com.
Switching from RADICAVA® (edaravone) IV to RADICAVA ORS® (edaravone)
I have been taking RADICAVA® IV since 2018. When I found out RADICAVA ORS® oral treatment was available, I was on the horn to my neurologist immediately. I meet with my neurologist quarterly at his regional clinic. After we talked more about RADICAVA ORS®, we decided it was the right move for me. Now that I’ve been taking RADICAVA ORS®, I can say it really fits into my life’s routines.
Want to learn more about how RADICAVA ORS® was designed with ALS patients in mind? Visit TakingRadicavaORS.com.
Controlled portions of clinical trials have not extended beyond 12 months. Individual results may vary. Please see full Instructions For Use at RadicavaInstructionsForUse.com
My advice for others
The main thing I wished I had realized when I was diagnosed with ALS was that my life wasn’t over yet. ALS has actually proven to be a life-giving sentence to me. It has taught me to live each day to the fullest, and to consider each day as a blessing. I wish I had this reality going into it, and before, so that I could have lived my life a little differently. I’ll encourage any of my fellow PALS (people living with ALS) in this world to view each day as a blessing and to live it in the fullest that you possibly can.
If you want to hear more from me, you can watch my video at NedALSStory.com.
Sharing my story
Sharing my ALS story has inspired me to continue living my life to the fullest, but my story is just one of many. I encourage others living with the disease to share their story because people in our community have a lot to share. Questions and fears, as well as stories of courage and hope. Whether someone living with ALS is searching for more answers about the disease, or for new ways to live each day with purpose, hearing from others with similar experiences may make a world of difference. The Share Your Story program allows real people living with ALS and/or their caregivers to share their own experiences of living with ALS and why treatment with RADICAVA® or RADICAVA ORS® matters to them.
Interested in sharing your story about ALS and RADICAVA®? Learn more about participating in the Share Your Story program at ShareYourALSStory.com.
IMPORTANT SAFETY INFORMATION
Do not receive RADICAVA (edaravone) or RADICAVA ORS (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS.
Before you take RADICAVA or RADICAVA ORS, tell your healthcare provider about all of your medical conditions, including if you:
- have asthma.
- are allergic to other medicines.
- are pregnant or plan to become pregnant. It is not known if RADICAVA or RADICAVA ORS will harm your unborn baby.
- are breastfeeding or plan to breastfeed. It is not known if RADICAVA or RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive RADICAVA or RADICAVA ORS or breastfeed.
Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.
What are the possible side effects of RADICAVA and RADICAVA ORS?
RADICAVA and RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.
- Hypersensitivity reactions have happened in people receiving RADICAVA or taking RADICAVA ORS and can happen after your medicine has been given.
- RADICAVA and RADICAVA ORS contain sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
- Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects and allergic reactions.
The most common side effects include bruising (contusion), problems walking (gait disturbance), and headache.
These are not all the possible side effects of RADICAVA or RADICAVA ORS. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to www.fda.gov/medwatch or Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058.
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
For more information, including full Prescribing Information, please visit www.RADICAVA.com.