My Journey to Accept Living With ALS

It took time for Philip to discover acceptance was key to him for living with ALS. Learn about his journey from diagnosis to getting the help he needed to move ahead.

This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for US audiences only. Any other present or future content posted by the contributor, not expressly designated as “Mitsubishi Tanabe Pharma America, Inc. – sponsored content” is not associated with MTPA. Philip is an actual patient who was taking RADICAVA ORS^® (edaravone) when this article was written.

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 on Radicava.com.

Don’t Call Me Brave

My name’s Philip, and I was diagnosed with ALS in December of 2022. Since then, I’ve noticed people sometimes throw around the word “brave” when talking about people like me living with ALS. “You’re so brave,” they say. To me, being brave means you had a choice in the matter—a decision to accept the challenge, but people with ALS don’t have a choice to take on this disease. I don’t think bravery has much to do with it at all.

It’s All About Acceptance

To face a life with ALS takes something that’s bigger than being brave. It’s all about acceptance. It’s about taking it one day at a time. Having a bit of dark humor helps, too. I mean, if you can’t laugh about the things you can’t control, life’s going to be tough. The way I see it, you can’t outrun death. So, I’m running towards anything that reminds me I’m still alive.

The Day the Going Got Tough

I’ve worked in construction all my life. I was an electrician and a union brick layer. So, I was used to dealing with body pains from a hard day’s work. One day in the fall of 2021, I noticed something different. My foot would start slapping the ground after I walked a few blocks. It felt like I had a slipper on. Through the summer, it got worse, and I started tripping more often.

I went to my doctor, and she sent me for an EMG. She said I had “noisy muscles” and that I needed to get a clear diagnosis. I didn’t think the symptoms were that bad, but she said, “I don’t think you understand. I think it’s degenerative, and you need to be diagnosed before you can’t walk.” That grabbed my attention.

So, I went to a hospital in Chicago for another EMG. I was rooting for it to be MS, but I was diagnosed with ALS. ‘Devastating’ doesn’t begin to describe the feeling I had. My son Justin drove me to and from the appointment, and on the ride back home we were both quiet. It was heavy. I don’t think either of us wanted to talk about what was to come.

Making the Decision to Start RADICAVA ORS^® (edaravone)

My neurologist told me there were few treatments for ALS and they all started with the letter “R.” One of them is the oral treatment RADICAVA ORS^®. She said that it may help slow my loss of physical function, and, after discussing the possible side effects, we both agreed that it should be part of my treatment plan. I’ve been taking it for about a year and a half.

On my treatment days, I take it at 9:00 in the morning on an empty stomach. It’s not the most delicious thing I’ve ever put in my mouth, but it’s not awful. I think for me, RADICAVA ORS^® is easy enough to take. On treatment days, I just fill the 5-mL syringe that comes with the medication and down it.

In the clinical study, RADICAVA^® (edaravone) slowed the loss of physical function as measured by the ALS Functional Rating Scale-Revised (ALSFRS-R) by 33% versus placebo. At 24 weeks (about 6 months), patients who did not receive RADICAVA^® (66 patients) declined more rapidly in physical function, having lost an average of 2.49 points more than those who received RADICAVA^® (68 patients). RADICAVA ORS^® is an oral form of RADICAVA^®. 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. Talk to your doctor about all the benefits and risks associated with treatment. This is Philip’s experience and does not necessarily represent the experience of others.

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.

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 before you take RADICAVA ORS^®

Please see the Instructions for Use for details on how to prepare and administer the medication.

Please see Important Safety Information below and click here for full Prescribing Information and Patient Information.

Getting Help From the JourneyMate Support Program™

With ALS, one of the hardest things for me was having to ask for help. It takes my pride away. In fact, I’ve gotten some T-shirts made up that say, “If You Have Pride, Ask Your Doctor if ALS May Be Right for You.” There’s that dark humor I mentioned.

When I was prescribed RADICAVA ORS^®, a Clinical Educator—a member of the JourneyMate Support Program™ team—called me to help me understand how to get started. She was helpful, really nice, and easy to talk with. She reinforced the treatment plan my doctor had given me, including how to take the medication. I called her a few times with questions, but so far, taking RADICAVA ORS^® has been smooth for me. I just keep taking the medication when I’m supposed to.

This is Philip’s experience and does not necessarily represent the experience of others.

Other team members in the support program—a JourneyMate Resource Specialist and an Insurance & Access Specialist—can answer your questions and give you support. I haven’t needed to connect with them, but it’s nice to know that with RADICAVA ORS^® there’s a whole JourneyMate Support Program™ team behind you.

Doing What I Can to Make a Difference

Deciding with my doctor to start RADICAVA ORS^® helped me understand that I could still take action that may make a difference. It’s like the last time I was in Thailand. I stayed there a month, and I had just started using this little power chair. It was my birthday, and a friend there told me it’s customary to donate to someone else on your birthday.

I learned there was a nursing home for disabled people nearby. So, I went to a local store with my friend and bought a truckload of supplies—personal hygiene products, juice boxes, and other stuff the people needed. To see the look on their faces when we arrived made the whole trip worthwhile. The feeling of their gratitude stuck with me, and it helps me do what I can each day to make a difference.

Focusing on What’s on Tap Today

As for my life now, I’m traveling as much as I can, and I go to the theater and ball games if I’m up for it. If the weather’s warm, I’ll get on my chair and wheel down to the tavern to see some friends. When I’m home, I spend time on the internet, play video games, or maybe watch a Cubs game. That’s about as far in the future as I can plan since I don’t know the shape I’ll be in 90 days from now.

For me, each day with ALS is still a lesson in acceptance. I’ve learned acceptance is the key to my happiness. I’m living with ALS, and I just keep going as long as I can, as long as I feel like I’m outrunning what’s coming. I hope you can also find acceptance and some happiness in your life with ALS.

The JourneyMate Support Program™ offers educational support and resources for patients who are considering or have already been prescribed a Mitsubishi Tanabe Pharma America, Inc. (MTPA) product. An ALS Clinical Educator is an educational resource for patients who have been prescribed an MTPA product. An ALS Clinical Educator is provided by MTPA and Momentum Life Sciences and is not affiliated with or provided by a doctor. An ALS Clinical Educator does not provide medical advice. 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 Michael’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.

The most common side effects of RADICAVA^® (edaravone) and RADICAVA ORS include bruising (contusion), problems walking (gait disturbance), and headache.

These are not all the possible side effects of RADICAVA and 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.

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, RADICAVA ORS, the RADICAVA ORS logo, and the corporate symbol of Mitsubishi Tanabe Pharma America are registered trademarks of Mitsubishi Tanabe Pharma Corporation.

JourneyMate Support Program is a trademark of Mitsubishi Tanabe Pharma America, Inc.

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