Even While Living With ALS, I Choose Joy
This is a sponsored post written by Linda Rimer in collaboration with MTPA
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. Linda 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.
Linda, 73, was diagnosed with bulbar onset ALS in 2017. She lives in San Antonio, TX, with her family, who she calls “the A Team”: her daughter Amanda, son-in-law Adam, and her four grandkids Avery, Aiden, Asher, and Ainsley—plus her dogs, Atlas and Astro.
I was diagnosed with ALS on June 13, 2017, but I started noticing symptoms around May 2015, so that’s really when my two-year journey to a diagnosis began. I have bulbar onset ALS, so my voice was affected first. One morning in 2015 while out for a jog, suddenly, I forgot how to run, and my legs wouldn’t move! I thought this was incredibly strange, so I went to the doctor and was told that at my age, I should be walking and not running. Back then, I was athletic, and being active was important to me, so I wasn’t really satisfied with this advice. I continued searching for answers with other doctors trying to see why my legs weren’t remembering how to run, and it took two years to figure it out.
The day I finally got my diagnosis was a very strange day. I went in for a colonoscopy and my voice was shaky and weak—similar to how it is today. As the doctor was putting me to sleep, I said, “While I’m under, what do you think of scoping my throat to see why I’m having difficulty talking?” He agreed, which was a surprise. He added the throat scope and when I woke up, he asked to speak with me and my daughter. My doctor had a list of about 15 symptoms of ALS, and as he read them off, it struck me that I had every single one of them. He said, “I think you have ALS and I want you to go to a neurologist straight from here to get diagnosed right away.” I called my family doctor who saw me quickly and then got me into a neurologist that same day, where my diagnosis was confirmed.
Moving Beyond the ALS Diagnosis
This diagnosis was devastating, of course, and my sister came to stay with me for a week. During that time, we grieved together and cried a lot. After that week passed, I said to myself, “Your days may be shorter, but how do you want to live them? Do you want to live them sad and discouraged, or do you want to choose joy for each and every day you have?” Because each day is a gift, and I choose joy every day.
After coming to terms with my diagnosis, my immediate concern was to take action—to prepare my will and get my house in order. I had just lost my mother, so I didn’t want to leave my kids with sorting through all my junk. I immediately tore apart my house and got rid of everything I didn’t need, sorted out pictures, and then finally I sold my house.
My daughter asked me to move in with her family. They sold their house, and we moved into a bigger house that could hold 7 people. We were very blessed to be able to live together. Getting all my finances in order and simplifying my life really helped me find peace. It comforted me knowing that my family wouldn’t have to make decisions for me, because I had already made those decisions for them.
Asking My Doctor About RADICAVA®
The first doctor I went to for my diagnosis told me I was no longer eligible for RADICAVA® (edaravone) because it had taken 2 years for diagnosis, and he said he did not recommend putting any patient on RADICAVA® after 2 years. Well, I did not take “no” for an answer and found a new doctor who worked with me to see if RADICAVA® was right for me. It was and this gave me hope.
In the clinical study, RADICAVA® 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). The most common side effects of RADICAVA include bruising (contusion), problems walking (gait disturbance), and headache. Fatigue was also reported in 7.6% of patients taking RADICAVA ORS®. Talk to your doctor about all the benefits and risks associated with treatment. This is Linda’s experience and does not necessarily represent the experience of others.
RADICAVA IV (edaravone) and RADICAVA ORS (edaravone) are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
Do not receive RADICAVA IV or RADICAVA ORS if you are allergic to edaravone or any of the ingredients in RADICAVA IV and RADICAVA ORS.
My RADICAVA® Experience
I have been on RADICAVA® IV for 5 and a half years. My schedule is prioritized by my RADICAVA® appointments, and I never miss one. My appointments to get infusions are the reason I get up on those mornings, get dressed, and leave the house. I make sure that I take a good book with me or meet a friend for coffee or lunch prior to infusions. So, it’s a fun event for me. I love the people who care for me at the infusion center, so it has never felt like a burden.
[12,500+] ALS patients have been treated with RADICAVA® since approvala
Learn more about ALS and how RADICAVA ORS® may help you.
Living for Today
When it comes to support and motivation, I turn to my friends and my faith. I have friends that encourage me and treat me like myself instead of a disabled person, so that’s pretty awesome.
My faith has grown tremendously, and it’s what gives me strength and joy to live each day. None of us knows how many days we have on this Earth, so choosing to be joyful and love every day that you’re given is a great way to live.
My Advice to Others Starting Their ALS Journey
Each case of ALS is different. There are many unknowns. We don’t know how this journey will go for each individual, whether it will be slow progression or rapid. We do have to be our own advocate. Research as much as we can, ask questions, get connected to different groups so you have someone to walk with you on this journey.
I also encourage people living with ALS to share their stories. One of my life goals has been to encourage others who go through tough times. Remember that we never know how what we say will affect other people. Our obligation as human beings is to try to help others along the way. So sharing your story could have benefits you’ll never be aware of, but could be very real to someone else.
ALS has helped me get my priorities in line and save my energy for the things that are important to me. One thing I try to do is encourage others who are diagnosed with this disease to rely on their faith. My faith gives me strength and joy. And be sure to connect to others. Reach out and know there are ways to live with this disease that are purposeful.
Interested in sharing your story about ALS and RADICAVA®? 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.
RADICAVA and RADICAVA ORS are indicated for the treatment of amyotrophic lateral sclerosis (ALS).
RADICAVA and RADICAVA ORS are registered trademarks of Mitsubishi Tanabe Pharma Corporation.
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