Father Living with ALS Shares 5 Tips for Coping and “Embracing Your Now”
Posted: September 09, 2022 | Word Count: 1,420
For U.S. Air Force Veteran and father, Juan Reyes, being diagnosed with amyotrophic lateral sclerosis (ALS) was a “devastating blow.” Reyes, who had just adopted three children, knew his diagnosis would redefine their lives. According to the National Institutes of Health, ALS — more commonly known as Lou Gehrig’s Disease — is an incurable, progressive disease of the nervous system that leads to muscle weakness and eventual loss of function including walking, speaking, swallowing, eating and breathing. Veterans, like Reyes, are twice as likely to be diagnosed with ALS than those who have not served in the military. Despite the difficult news, Reyes and his family made a conscious choice to “embrace their now” and live each day with purpose and happiness.
“We had a choice to make — allow ALS to consume us, or live our lives boldly,” says Reyes. “We could have lost control of our future had we decided to let ALS be our compass. This disease infiltrates many aspects of our lives, yet we simply don’t let it consume us.”
To fully “embrace their now,” Reyes and his family have decided to create unforgettable memories together by traveling and going on adventures with each other. In fact, together with his wife and caregiver, Meg, Reyes is taking a series of RV trips across the U.S. this year to help spread awareness of ALS and meet others living with the disease. Acting as an advocate and mentor, Reyes is open about his experience with ALS, sharing what he's learned along his journey, to help encourage others to “embrace their now.”
Reyes and his family are focused on making the most of every moment they have with each other, and they encourage others living with this fatal disease to do the same. Here are five tips from Reyes that help him cope:
1. Live in the present
“Embrace your now,” without worrying too much about the future. This mindset can help you “take life by the horns” and enjoy the time you have with your loved ones.
“Everything else takes a back seat to being present. This is not complicated, but it can be difficult for some,” Reyes says. “Being present means exactly that, nothing more: visiting, helping, learning. Enjoy your life the best you can.”
2. Be open about ALS
Don’t avoid difficult topics when it comes to ALS, but instead, have very honest, real conversations with your family — even with children.
“Our family is very pragmatic — we just say that ALS is something Dad has,” Reyes explains. “My wife and I choose to remain in control by talking about and communicating all aspects of this disease with our children.”
3. Accept support from others
ALS brings a multitude of changes for the person living with the disease and their families. Willing to be open and accept help and support from others can make a huge difference.
“ALS impacts your physical, emotional and mental health,” Reyes says. “But there is one aspect that can impact all of the above: self-imposed isolation. Accepting support from family, friends and my community has helped reduce my feelings of isolation.”
4. Partner with healthcare providers
Stay actively engaged with your healthcare team. Communicate frequently and discuss treatment options with your providers so they can help to find the best treatment options for you.
“Once the gravity of ALS settles in, allow yourself to catch your breath, then start planning with your healthcare team,” advises Reyes. “Your plan should encompass solutions for daily living, long-term arrangements, and treatment options.”
“When the prescription drug RADICAVA® (edaravone) came up, we discussed pursuing this course. My doctor and I reviewed the benefits and risks of treatment, and while RADICAVA is not a cure, it has been shown to help slow the decline of physical function in a medical study,” says Reyes. “I felt comfortable moving forward with this option, but I encourage anyone diagnosed with ALS to actively work with their doctor on a treatment plan that’s right for them.”
RADICAVA® and RADICAVA ORS® (edaravone) are indicated for the treatment of ALS. Do not receive RADICAVA® or RADICAVA® ORS if you are allergic to edaravone or any of the ingredients in RADICAVA and RADICAVA ORS. See IMPORTANT SAFETY INFORMATION below.
5. Share Your ALS Story
People in the ALS community have a lot to share. Questions and fears, as well as stories of courage and hope. Whether someone living with ALS is searching for more answers about the disease, or for new ways to live each day with purpose, hearing from others with similar experiences may make a world of difference. The Share Your Story program allows real people living with ALS and/or their caregivers to share their own experiences of living with ALS and why treatment with RADICAVA® (edaravone) matters to them.
Sharing your story could help you cope with ALS through self-expression. "Releasing my thoughts, feelings and emotions about the disease has given me a sense of relief," Reyes noted.
Whether you Share Your Story by video or post, you could help others who live with ALS feel like they’re part of a larger community of support and understanding.
“I share my story because I want more people living with ALS to feel inspired and to understand they are not alone,” says Reyes. “By sharing your story, you could make an impact on how others live with ALS, too.”
Interested in sharing your experience with others? 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.
In addition to sharing his experiences online, Reyes will continue to share his story with others as he travels around the country. “I try to be as optimistic as possible. 'How?' you may ask? My answer is, 'Why the heck not!'” said Reyes. “Let me be clear though, it is immensely difficult to maintain a healthy outlook with such a relentless disease. Just know you are not alone on this journey.”
This content is sponsored by Mitsubishi Tanabe Pharma America, Inc. (MTPA) and is intended for U.S. audiences only. Juan Reyes is an actual patient and is being compensated by MTPA.
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).