ALS Is My Next Mountain to Climb

This is a sponsored post written by Albert Uster in collaboration with MTPA

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This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for U.S. 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. Albert is an actual patient who is taking RADICAVA® ORS (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.

 

Albert, 48, is a former competitive runner, cyclist, mountain climber, SCUBA diver, and all-around athlete who was diagnosed with ALS in 2021. He’s currently focused on working and being a family man in Miami, FL, where he lives with his wife and two sons.

 

I was always an avid athlete even as a young child, playing lots of soccer. At the age of 12, I decided to become a serious runner, and in high school I was on the track and cross country teams. That continued as an adult, and before ALS impacted my life, I completed more than 200 races. I did everything from 10Ks to half marathons, marathons, ultramarathons, adventure races, extreme challenges, and everything else I could do to push my body.

 

When I was diagnosed with ALS, my doctors told me my new focus was maintaining my physical function as long as possible. That was very foreign to me because I was always pushing my own limits. It’s been two years since receiving my diagnosis, and two and a half years since the onset of symptoms. These days, I do a lot of soul searching. I’m trying to figure out what to do with this extra time. It’s led me to focus more on my family and other things I like to do. It’s been tough to transition from a life where I worked out between two and five hours a day.

 

My Difficult Road to Diagnosis

It was a long and frustrating journey to my diagnosis with ALS, with no answers for a long time. I saw a chiropractor, an ENT, a neurologist, and an ALS specialist before flying to Boston to see another neurologist and a different ALS specialist. In May of 2020 I was training hard during COVID, with nothing else to do but hit the bike or run nonstop. I started getting neck weakness and had trouble breathing when I turned my head to my right. At that time, I was still strong, still running and biking as much as I could with minor difficulty. My ENT recommended I see a neurologist, where we did some tests and discovered a slight weakness on my left side. That’s when he directed me to see an ALS specialist. Nothing on my radar led me to understand how significant this next step would be.

 

In a telehealth appointment during COVID, the ALS specialist first diagnosed me with myasthenia gravis. He prescribed me some pills and said, “I’ll see you in February.” I didn’t feel I could get an accurate diagnosis for something so big over a screen, so I wasn’t comfortable taking the pills. A friend who works at a Boston hospital suggested I see the doctors up there. I was elated! Finally, I felt like I was getting closer to the help I needed. I got an appointment in the first week of January and flew up to Boston. They did a battery of exams and I tested negative for myasthenia gravis, so I spoke with the ALS specialist there. After looking over the test results, the specialist said, “I’m sorry to tell you, but you have ALS.”

 

At that point, having been through so many paths on this winding journey, getting diagnosed felt anti-climactic. It wasn’t emotional. The day I got the ALS diagnosis, I knew the writing was on the wall. I knew it was something serious. I was told not to Google ALS because of what I might find, but I felt I had to get more information, so I didn’t listen to that advice. When I Googled it, there were sites saying that people with Bulbar-onset ALS like me often die within 2 years or less, and the rest have a terrible quality of life if they live longer than that. To say I was discouraged and frustrated is an understatement. After that, I had multiple doctors tell me research has come a long way and now there are more treatment options than ever before. But it was still hard to stay positive knowing there is no cure.

 

Drawing Strength From the Past to Move Forward

Since my diagnosis, I’ve come a long way. At the beginning it was shocking, but as I digested it, my wife and I confronted it like we do with any other problem we encounter. We said, “Okay, this is the problem. How do we deal with it? Research doctors, research treatment options, make the best of it.” I feel like I’ve gotten more focused mentally, and I’m driven to understand what I want to do with the time I have remaining. Having ALS put things into focus and has given me a different perspective.

 

These days I try to stay upbeat, motivated, and active, however I can. I’m still working every day, trying to maintain my life as it was before, until something comes up and then I have to adjust and make adaptations. For example, right now I’m wearing a neck brace to help support my head. I know I may need more support in the future and I’m mentally preparing for that all the time. You do what you can, when you can. But for the most part, you have to keep going.

 

I’m a very pragmatic person. I’m on the path of life and discovery, and I see this as just another part of my path. There are times when it’s going to be tough, with some days tougher than others, but there are also going to be some fun times again. I can draw a comparison to past challenges of a 4-hour marathon, a 12-hour mountain climb, sleeping in a mountain shelter with freezing conditions. And despite the incredibly hard conditions, I felt I could endure more than I thought I ever could. You have to use your mindset to face each moment. You have moments where you think, Wow, this is incredible. It makes you realize that you’re alive. Having ALS can sometimes make me feel this same way.

 

Albert holding wine glass

 

Feeling Grateful for Moments of Connection

Living with ALS has made me focus on the important things, like my connection with my family. I remember this great conversation I recently had with my 12-year-old son. He’d been talking on the phone with a girl, because he’s at that time of life where he’s almost always on the phone with girls. And I told him, “When I was your age, I did exactly the same thing. I used to talk to girls for hours and I don’t even know what we talked about. Usually it was just random stuff, but we talked forever, and it was always so much fun.” He gave an appreciative nod and a smile. That’s when he told my wife “You know, Dad really understands me.” Thinking back to that time of connection with my son is something I draw from a lot, and it makes me feel like a million bucks.

 

Advice for the Newly Diagnosed With ALS

For those who are struggling with a new ALS diagnosis, I would say seek out information, prepare yourself by coming to terms with what you’re facing so you can get your mind right for fighting the condition as best you can. To be in denial about ALS is, I think, the scariest thing you can do to yourself. I don’t want to be blindsided when the bad things happen, like losing my voice, not being able to move my arms anymore, or not being able to pick things up. I can get through things better when I understand what’s happening and plan for how to proceed.

 

When it comes to finding support and encouragement, nothing brings me strength like having community and someone who understands what I’m going through. I find motivation from seeing this as a challenge in my life like running marathons, climbing mountains, or SCUBA diving down to the depths. I try to stay calm and focused, and I’m strongest when I’m around friends, making new connections, and looking inward.

 

Albert at table with snow mountain view

 

What RADICAVA ORS® Means to Me 

I was first told about RADICAVA® IV by my neurologist. I was intrigued when she said that it may slow the loss of physical function.

 

Four months after being diagnosed, I was still biking and running regularly and being active for as long as I could was something I focused on. Then I started taking RADICAVA® IV in May of 2021. It made me feel comforted knowing that RADICAVA® has been shown to slow the loss of physical function that comes with ALS.

 

Individual results may vary.

 

I worked with my doctor to switch to RADICAVA ORS® (edaravone) in mid-2022. I appreciate how it fits into my life’s routine and I’ve found taking RADICAVA ORS® is less intrusive. It’s a little syringe of five milliliters of liquid that I take orally and in my opinion, it doesn’t taste bad, it tastes sweet, and I don’t have to worry about hours lost doing infusions. RADICAVA ORS® is a convenient option for me, and it takes less time to administer versus the IV formulation it, which has, personally, been very positive.

 

I make sure to follow these instructions my doctor told 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®

 

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 click here for full Prescribing Information and Patient Information.

 

[12,500+] patients have been treated with RADICAVA®.a

 

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

 

How I Hope My Story Helps Others

It all goes back to having community. When real people who live with ALS every day can tell other people what it’s like to go through this condition, it can make a world of difference. It sucks being in this club, being a patient with ALS.

 

Being part of this club means you have so many peers that you have the opportunity to connect with. Suddenly you’re in the same boat, you aren’t alone, and that’s a powerful thing. That kind of strength through community inspires me every day.

 

Interested in sharing your story about ALS and RADICAVA?a Learn more about participating in the Share Your Story program.

 

aBased on RADICAVA ORS® and RADICAVA® IV prescriptions submitted in the US as of [July 2023]. Not independently verified.

 

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.

 

INDICATION
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).

 

For more information, including full Prescribing Information, please visit Radicava.com.

 

RADICAVA and RADICAVA ORS are registered trademarks of Mitsubishi Tanabe Pharma Corporation.

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