ALS Is Only Part of My Life Story

Ed and his wife Karen were shocked to hear his ALS diagnosis, but with the help of the VA and others in their community, they discovered they were far from alone.

This content is sponsored by Tanabe Pharma America, Inc. (TPA) and is intended for US audiences only. Any other present or future content posted by the contributor, not expressly designated as “Tanabe Pharma America, Inc. – sponsored content” is not associated with TPA.

Patient stories reflect the real-life experiences of persons diagnosed with ALS who have been prescribed RADICAVA ORS^® (edaravone). However, individual experiences may vary. Patient stories are not necessarily representative of what another person using RADICAVA ORS^® may experience.

These experiences are shared by patients and/or caregivers of patients on treatment at the time this content was created.

This is a real-life experience shared by an actual patient who is taking RADICAVA ORS^®.

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 healthcare provider with any questions regarding a medical condition.

Individual results may vary. Please see Important Safety Information below, full Prescribing Information, and Patient Information.

The Day Everything Changed

I’ve always been active. In the past, I was into hunting, fishing, refereeing football, and staying involved in my community. But in 2018, my life took a turn I never expected. My left hand wasn’t working properly. I figured it was just another ache or pain, or maybe it was part of getting older, or something from my days in the Army.

My doctor ran some tests, then sent me to a spine specialist who recommended neck surgery. However, the surgery didn’t fix the problem. I ended up at the Mayo Clinic. My wife, Karen, was with me when I got the news. After three days of testing, the neurologist said, “I can tell you without a doubt, you have ALS.” I didn’t even know what ALS was.

The neurologist told us most people who are diagnosed with ALS will survive for only three to five more years. Karen and I looked at each other in disbelief. We were shocked. When we got home, we started getting ready for what we thought would be a short road ahead. I started making changes like preparing for handicap access. I tried to wrap my head around what was coming. We got rid of things I wouldn’t need when I wasn’t here anymore.

Adjusting to Life With ALS

I’d seen people with ALS in wheelchairs and heard the name Lou Gehrig, but I didn’t really understand what it meant to have the disease. The hardest part for me was not knowing what to expect. I joined a few online ALS support groups. However, I felt like there was too much emphasis on what I couldn’t do. I wanted to focus on living and what I could do. After telling my friends and the VA about my diagnosis, they helped me focus on what’s important to me. I deeply appreciate all the support I’ve received.

One thing I have been able to do that I enjoy is staying active in the veteran community. I’ve also competed in the National Veterans Wheelchair Games, winning medals in bocce ball, shuffleboard, and pool. I’m planning to compete again next year in Tampa, Florida. Traveling with a disability can be a challenge, but I’ve found that using a travel agent who understands my needs makes a big difference.

Going on disability helped give me and Karen the time and resources we needed to adjust our routines as my ALS progressed. When I got to the point where I couldn’t turn the steering wheel anymore, I had to stop driving. Friends started picking me up for coffee or lunch, and we started working with a caregiver who helps me with showering. That helped give Karen a break.

Karen is my rock. She’s my primary caregiver, partner, and best friend. We’ve been married since 1977, and we’ve always worked as a team. I don’t know how I’d move forward without her love and support. Also, our dog Katie, a Cavapoo, is a constant source of joy for both of us. We can always rely on our fuzzy four-legged partner to add some comic relief.

Contributing to our community also helps me focus on moving forward. I help by raising money for the YMCA and volunteering at my church. I’ve even won a few awards along the way. Staying active and connected with other people has helped me keep my spirits up, even on the tough days.

Working With My Doctor to Start
RADICAVA ORS^® (edaravone)

It wasn’t until around 2022 that I started on RADICAVA ORS^® (edaravone). I didn’t know much about treatment options at first, and it took a while to get connected with the people who could help me. The Cheyenne VA referred me to the Denver VA. There, I met a neurologist and a team of specialists like occupational therapists, physical therapists, speech therapists, and a clinical psychologist. They talked with me about RADICAVA ORS^® and got me started on treatment. I’m so grateful for the VA’s help in getting me access to RADICAVA ORS^® and the equipment and resources I need.

The Denver VA team is now my main point of contact for resources and support. My coordinator there helps schedule appointments and keeps everything running smoothly. We do a lot of online visits, especially in the winter when the roads between Cheyenne and Denver get dicey.

If I could give advice to someone just starting this journey, it would be to find a team that understands ALS and knows the resources available. There’s a lot to figure out and having the right support makes all the difference.

My Experience With RADICAVA ORS^®

I’ve been taking RADICAVA ORS^® for about three years now. For me, RADICAVA ORS® has fit right into my routine. I take it in the morning, 10 days on and then 14 days off. Karen helps me keep track of the schedule. I also take riluzole, another medication for ALS. One thing I learned early on—order the next dose of RADICAVA ORS^® as soon as I start the current one. The VA mails it to me, and by the time I finish a cycle, the next one is ready to go. It took a little practice, but now it’s just part of our routine.

Other people’s experience may be different. Overall, my experience with RADICAVA ORS^® has been smooth sailing. I’m grateful that the VA and ALS Association have provided support. However, it’s good to know there are other resources out there, like the JourneyMate Support Program™, if I need them.

RADICAVA ORS^® (edaravone) is indicated for the treatment of amyotrophic lateral sclerosis (ALS).

Do not receive RADICAVA ORS^® (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA ORS. RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions. Common side effects reported include bruising (contusion), problems walking (gait disturbance), headache and fatigue. Please see additional Important Safety Information below.

I make sure to follow the instructions my neurologist gave me:

• Take RADICAVA ORS^® first thing every morning after fasting overnight
• Wait at least 1 hour after taking it before eating or drinking anything except water
• RADICAVA ORS^® should be stored upright at room temperature between 68°F-77°F and protected from light
• Read the Instructions for Use for details on how to prepare and administer RADICAVA ORS^®

How I Hope My Story Will Help Others

When I got my diagnosis, I thought maybe I could help others by sharing what it’s really like to live with ALS. I admire Lou Gehrig and his “Luckiest Man Alive” speech. He inspired others with his courage and gratitude and spread the word about ALS. If sharing my story helps even one person feel less alone, it’s worth it.

ALS is different for everyone. My progression has been slow, and I’m grateful for every day I get. The hardest part for me is worrying about the impact on Karen, especially how much she does as my caregiver. We talk about it a lot, and we try to keep our relationship strong, even as things change.

If you’re living with ALS, or caring for someone who is, know that you’re not alone. There are resources, support, and people like me who understand what you’re going through. I hope my story gives you hope, a little levity, and the strength to move forward knowing there’s a life to be lived with ALS.

The JourneyMate Support Program™ offers educational support and resources for patients who are considering or have already been prescribed a Tanabe Pharma America, Inc. (TPA) product. The program does not provide medical advice and does not take the place of a patient’s doctor. All questions about a condition, diagnosis, or treatment should be referred to the patient’s doctor. If a patient has a medical emergency, they should call 911. Adverse events or product complaints should be reported by calling 1-888-292-0058.

Learn more about ALS and how RADICAVA ORS^® may help you.

Learn more about participating in the Share Your Story program at ShareYourALSStory.com.

Read Philip’s story as he shares his experience with ALS and RADICAVA ORS^®.

IMPORTANT SAFETY INFORMATION

Do not receive RADICAVA ORS^® (edaravone) if you are allergic to edaravone or any of the ingredients in RADICAVA ORS.

Before you take 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 ORS will harm your unborn baby.
• are breastfeeding or plan to breastfeed. It is not known if RADICAVA ORS passes into your breastmilk. You and your healthcare provider should decide if you will receive 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 ORS?
RADICAVA ORS may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.

• Hypersensitivity reactions have happened in people taking RADICAVA ORS and can happen after your medicine has been taken.
• RADICAVA ORS contains 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.

Common side effects reported include bruising (contusion), problems walking (gait disturbance), headache and fatigue. These are not all the possible side effects of 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 Tanabe Pharma America, Inc. at 1-888-292-0058.

INDICATION

RADICAVA ORS^® (edaravone) is indicated for the treatment of amyotrophic lateral sclerosis (ALS).

Please see the full Prescribing Information and Patient Information, also available at www.radicavaors.com.

RADICAVA ORS is a registered trademark of K.K. BCJ-94. JourneyMate Support Program is a trademark of Tanabe Pharma America, Inc. All other trademarks are the property of their respective owners.

Intended for US Residents Only.

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