How this Veteran turned grief into purpose
After experiencing muscle weakness and twitching in his hand and arm, Michael was diagnosed with amyotrophic lateral sclerosis (ALS) in 2022, almost a year after his symptoms started. At the time, he didn't know much about the condition — whether it could be treated or not, or even that veterans like himself are at an increased risk for developing the disease.
ALS is a progressive neurodegenerative disease that currently has no cure. Commonly known as Lou Gehrig's disease, ALS affects nerve cells in the brain and spinal cord, causing weakness and loss of movement.
Within three months of his ALS diagnosis, his wife of 33 years passed away unexpectedly. Devastated by the loss, Michael turned his focus to what his children, now in their mid-20s, needed most: the emotional support of their father.
Changing priorities
'I knew I needed to be there for them,' Michael said. 'To help them work through this great loss.' It put his desire to learn more about ALS into a new light. 'It became very important to extend my functionality as long as possible so that I can spend more time with my family.'
Michael sought out an ALS clinic in his area to explore treatment options that might help him. His neurologist recommended RADICAVA ORS® (edaravone) and explained the benefits and risks of the treatment. In a clinical study, RADICAVA® (edaravone) helped to slow the loss of physical function as measured by the Revised ALS Functional Rating Scale (ALSFRS-R) by 33% compared to a placebo, and RADICAVA ORS® offers the same drug in an oral formulation.
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®.
RADICAVA ORS® is indicated for the treatment of amyotrophic lateral sclerosis (ALS). Do not take RADICAVA ORS® if you are allergic to edaravone or any of the ingredients in RADICAVA ORS®. Please see Important Safety Information below and click here for full Prescribing Information and Patient Information.
Following his diagnosis, Michael spent the next year visiting as many state parks in North Carolina as he could with his loved ones. His trips reminded him of the 22 years he spent in the Air Force and Air National Guard traveling across the U.S. and around the world.
As his symptoms progressed, Michael needed to slow down, but he's never given up. 'You are more adaptable than you think you are, but you do have to reinvent yourself. You're not going to be a physically active person anymore, but there are other things you can do,' he said.
A veteran reinvents himself
Today, Michael actively advocates for other veterans by spreading awareness of ALS and encourages those who are recently diagnosed to visit a clinic. His work is important because those who have served in the military are twice as likely to develop ALS than those who haven't served.
He also remains focused on family, one of his most cherished activities is preparing food with his daughter. 'While I can't physically help her, I can share what I know — how to grill, how to pan-sear meat and some of our favorite family recipes,' he said. They bond over the activity and talk about how to adjust the meal the next time they make it.
Learning from each other
Recently Michael has discovered that sharing his story and learning about other people's experiences with ALS help him to cope. 'I learned how important it is to stay in the present. Dwelling on what the future may hold can create an unbearable fear.'
Through Mitsubishi Tanabe Pharma America's Share Your Story program, people living with ALS and their caregivers can share their own experiences of living with the disease and why treatment with RADICAVA ORS® matters to them.
'Everybody's story might be a little different. You may not relate to someone at all or maybe someone's disease is more progressed than yours — and you may not be ready for that — that's OK, you don't have to read every story, but keep looking, keep reaching out because you'll find somebody that's similar to you and they're adapting in ways that you may not have thought of yet,' he said.
Interested in sharing your experience with others? Call a JourneyMateTM Resource Specialist toll-free at 1-855-457-6968 or visit ShareYourALSStory.com/Michael to sign up for the opportunity to share your own story.
INDICATION
RADICAVA ORS® (edaravone) is indicated for the treatment of amyotrophic lateral sclerosis (ALS).
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 overthe-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.
Please see the full Prescribing Information and Patient Information, also available at www.radicavaors.com.
Members of the editorial and news staff of USA TODAY Network were not involved in the creation of this content.
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Atropos Evidence Network membership benefits include the ability to leverage the network to deliver AI models to clinicians. Atropos Health is collaborating with Arcadia to help leading healthcare organizations deliver the latest care protocols and advanced precision medicine at scale. The partnership enables healthcare providers to accelerate clinical decision-making with actionable, AI-powered insights at the point of care using the combination of real-world evidence (RWE) and longitudinal patient records to improve outcomes and drive high-value, low-cost care. Healthcare organizations are also engaged with Atropos Health on leveraging AI for precision medicine, and building MOTOR, CLMBR and Foundation models on the Atropos Evidence Network. About Atropos Health Atropos Health is the developer of GENEVA OS™, the operating system for rapid healthcare evidence across a robust network of real-world data. Healthcare and life science organizations work with Atropos Health to close evidence gaps from bench to bedside, improving individual patient outcomes with data-driven care, expediting research that advances the field of medicine, and more. We aim to transform healthcare with timely, relevant real-world evidence. To learn more about Atropos Health, visit or connect through LinkedIn or follow on X (Twitter) @AtroposHealth. _________________________ 1 Bektas M, Copley-Merriman C, Khan S, Sarda SP, Shammo JM. Paroxysmal nocturnal hemoglobinuria: patient journey and burden of disease. J Manag Care Spec Pharm. 2020 Dec;26(12-b Suppl):S8-S14. doi: 10.18553/jmcp.2020.26.12-b.s8. PMID: 33356781; PMCID: PMC10408416 2 Mancuso S, Sucato G, Carlisi M, Santoro M, Tarantino G, Iannitto E, Napolitano M, Siragusa S. Paroxysmal nocturnal hemoglobinuria: When delay in diagnosis and long therapy occurs. Hematol Rep. 2018 Mar 29;10(1):7523. doi: 10.4081/hr.2018.7523. PMID: 29721255; PMCID: PMC5907647. 3 Cançado RD, Araújo ADS, Sandes AF, et al. Consensus statement for diagnosis and treatment of paroxysmal nocturnal haemoglobinuria. Hematol Transfus Cell Ther. 2021;43(3):341-348. 4 Dingli D, Matos JE, Lehrhaupt K, et al. The burden of illness in patients with paroxysmal nocturnal hemoglobinuria receiving treatment with the C5-inhibitors eculizumab or ravulizumab: results from a US patient survey. Ann Hematol. 2022;101(2):251-263. 5 Hill A, DeZern AE, Kinoshita T, Brodsky RA. Paroxysmal nocturnal haemoglobinuria. Nat Rev Dis Primers. 2017;3:17028. 6 Röth A, Maciejewski J, Nishimura JI, Jain D, Weitz JI. Screening and diagnostic clinical algorithm for paroxysmal nocturnal hemoglobinuria: Expert consensus. Eur J Haematol. 2018;101(1):3-11. Expand
