From a Devastating Diagnosis to “Embracing My Now” with ALS
Sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA)
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. Juan Reyes is an actual patient and is being compensated by MTPA.
I’m often asked by family, friends and acquaintances; “what was your state-of-mind when you were diagnosed with ALS?”
I can start by sharing that the day we found out was a beautiful, breezy and sunny Texas day. Even though I had been dealing with symptoms for over a year, my only discernible symptom to others was a slight limp. Waiting in the exam room, my wife and I carried on typical conversation, hiding from one another the fear and anticipation, waiting. Shortly the Doctor came in, questions, document review with a brief exam. All of which I have experienced previously. The Dr. excused himself for a few minutes, once he returned he was very forthright.
To be honest, it all seems a blur after the Dr. uttered those words, you have ALS. I do recall looking at my wife and seeing that look on her face. The look that screams, NO NOT THIS, ANYTHING BUT THIS!
Afterward, my wife and I received the compulsory packet of information prior to leaving the clinic. Along with a few new prescriptions and the contact information for the necessary agencies to engage; which are now a constant in our lives. The rest of the day was consumed with conversations that ran the gamut from telling our children to whispering “I love you”, countless times. I’m sure my wife cried in private, more times that day than I’m aware of, as did I.
Photo caption: Me with my beautiful family “Embracing Our Now”
Once we dealt with the initial release of emotions and shared the news with our family, we decided to face it head on. We chose to live in the moment and create unforgettable memories together. We soon discovered many other families doing the same. We began our ALS journey by arming ourselves with knowledge, coupled with nuggets of wisdom from those on the same adventure.
Let me be completely honest, it was far from easy. Shortly after our diagnosis, we were invited to attend an ALS support group and other local events. I’m not ashamed to say, I was simply too scared. I was not ready to see myself in others, not ready to witness my future, I was scared so I didn’t attend.
As I began to meet others living with ALS, I quickly decided, fear will not paralyze me, not before ALS does. We decided as a family that we would embrace every opportunity availed to me. Heck – six months after diagnosis I went Skydiving. A little tip if you decide to do the same; they can’t hear you say “I changed my mind” in the air, even if you are screaming it. Yes every adventure requires more prep, planning and forethought, ALS hasn’t stopped us.
Photo caption: Skydiving over Texas, 6 months after diagnosis; my 50th birthday!
Neither has it taken my optimism for life in general. Since diagnosis, our family has “Embraced Our Now” by embracing life, making memories at every opportunity. Big or small, every moment is precious when living with ALS. We have traveled, met other incredible pALS and cALS doing the same. I often share, I see it as a divine invitation to LIVE your life, embrace it with your heart and soul, with your whole being.
Photo caption: A power chair is essential to staying active and being able to keep up with my wife and kids, always on the move.
As we moved forward, we also discussed ways ahead with my doctor, keenly monitoring developments in ALS. When the prescription drug RADICAVA® (edaravone) came up, we discussed possibly pursuing this course. My doctor and I reviewed all pertinent data, and while RADICAVA is not a cure, it has been shown to help slow the decline of physical function in a medical study. When the time came to make this decision, I felt comfortable moving forward. I would highly encourage anyone diagnosed with ALS to actively work closely with your doctor, to create a personal course of action.
Interested in sharing your RADICAVA® experience with others? MTPA offers the Share Your Story program to allow real people to share real stories. Call a JourneyMateTM Resource Specialist toll-free 1-855-457-6968 or visit www.ShareYourALSStory.com to sign-up for a chance to share your story.
RADICAVA® and RADICAVA ORS® are contraindicated in patients with a history of hypersensitivity to edaravone or any of the inactive ingredients in this product. Hypersensitivity reactions and anaphylactic reactions have occurred. See Important Safety Information on RADICAVA.com and below.
If you find yourself overwhelmed, not uncommon, take a breath, discuss what is paramount for “your” family to move forward. Plot a course through the sea of information and choose the resources needed to help navigate your way ahead. Remember this: you and your family are not alone, it may feel that you are, but we are a community, here for each other.
Whether you’ve been recently diagnosed or have been living with ALS for some time, these 10 ideas may help you and your caregiver navigate and prepare to move forward through your ALS journey: https://www.radicava.com/patient/manage/guidance-and-tips.
This information is intended for U.S. audiences only 18 years of age and older. RADICAVA® is available by prescription only. Talk to your doctor.
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).