For all caregivers, their lives are divided into two parts. Before diagnosis and After Diagnosis. This is particularly true for those who must manage one of the more insidious illnesses, Alzheimer’s Disease, where the changes taking place before the diagnosis and once the disease has become fully onset, are significant for the patient and care partner alike. Marty Schreiber is the former Governor of Wisconsin, author of, My Two Elaines. Learning, Coping and Surviving as an Alzheimer’s Caregiver. The book chronicles Marty’s experience as primary support and caregiver for his wife of 60 years who was diagnosed with Alzheimer’s. The book and this podcast provides a transparent look into the heart of the disease and its personal, physical and emotional impact on the patient and those courageous souls, like Marty, who provide unrelenting support for their loved ones. To learn more and find resources related to this episode, go to insickness.org.

For Josh Argall, life couldn’t get much better. He was a 25-year-old first-time father of, Devin, who quickly became the center of Josh’s universe. Josh’s world was rocked when he and Devin’s mother noticed that their three-year-old son was somewhat slow in reaching some of the physical milestones like crawling and walking that are typically associated with children his age. In the months following, Josh’s world changed dramatically as Devin went through numerous doctor visits and misdiagnoses. Finally, a specialist at Children’s Hospital in Milwaukee diagnosed Devin as having Duchenne Muscular Dystrophy, a rare and progressive neuromuscular disease that, at the time, had few treatment options and little hope for a cure or long-term survival. The diagnosis shattered Josh’s world and sent him spiraling into a world of sadness, depression and despair.

On this episode of In Sickness. Men and the Culture of Caregiving, Josh shares how he went from the lowest of the lows to the realization that if his son was going to get better, he needed to face this adversity and join in the effort. Debra Miller, CEO and Founder of CureDuchenne, joins Josh in the discussion and provides valuable insight into the disease, and the patient and caregiver journey. To learn more and find resources related to this episode, go to insickness.org.

When you have a child diagnosed with any illness, you can only hope your efforts don’t require a lifetime commitment. The hope is for a short-lived illness that comes with a diagnosis followed by a cure. For former MassBio President, Bob Coughlin, he has lived through the in utero cystic fibrosis diagnosis of his son, Bobby, the physical challenges of caring for a young CF patient, and the constant involvement as a CF patient advocate raising awareness and all-important research money. Also, a time where CF treatments improved allowing Bobby to enjoy his teen years, finish high school, graduate college and begin his professional career. Despite this progress Bob has not remained stagnant and continues to advocate for patients with CF and other unmet medical needs. He also never stopped plying his most important role as his son’s caregiver where he remains committed, passionate, and always involved. Bob is joined on the podcast, Charlotte McKee, M.D., Chief Medical Officer of Sionna Therapeutics, a clinical stage biopharmaceutical company, developing therapeutics to treat cystic fibrosis.

To learn more, visit insickness.org.

At 17, Mason Smith was your typical teenager and living a life filled with school, sports, lots of hanging out with friends and more growing up. That all came to an abrupt stop when his mother was diagnosed with a fatal and ultra-rare neurodegenerative disease, adult-onset leukoencephalopathy with axonal spheroids and pigmented glia (ALSP). This young man who was just sprouting his wings took a harsh turn into adulthood as part of his Mom’s primary care team when she began to exhibit behaviors that were noticeable to Mason’s Aunt Heidi. Together, they both felt the need for further medical testing given that ALSP had already taken the lives of other family members. Mason knew that an ALSP diagnosis would change his mother’s life and usher him into adulthood and caregiving. To learn more visit insickness.org.

If you’re looking for a fair fight, don’t pick one with cancer. Odds are that cancer rarely loses and its adversary won’t have a puncher’s chance of bringing on defeat. Anyone confronted with caring for someone with a cancer diagnosis typically has no shortage of personal will, but not necessarily successful in finding a way to beat cancer. Just ask Miguel Barron who supported his wife in her two-year ordeal living with metastatic breast cancer, providing constant love, compassion, and dedication. Miguel also endured the emotional pressures of caring for someone with a progressive and punishing illness like cancer as he lived with loneliness and an overwhelming sadness during this time. Miguel captured his experience in a no holds-barred book, The Boxer’s Corner, that peers deep into his soul and shines a questioning light on the industry that creates medicines and supports patients. To learn more visit insickness.org.

John Crowley’s life was on the upswing after completing his MBA studies at Harvard Business School and beginning a new position as an investment banker. Without any warning his seemingly good fortune changed dramatically with the diagnosis of two of his children who contracted a rare, inherited disorder for which there were few treatments. His new path directed him towards creating a start-up biotech company that would research this once fatal disease and discover new treatments for his kids. John’s story is heroic and what he accomplishes against unimaginable odds is riveting. To learn more about this podcast, go to insickness.org. There, you can hear other episodes, see the producer's bios and connect with them!

Coming Soon: In Sickness. Men and the Culture of Caregiving is a monthly podcast that will focus on stories of male caregivers who have supported individuals with various diseases and medical conditions across all therapeutic areas including select cancers, ALS, Alzheimer’s, and numerous rare diseases. The podcast will highlight the growing population of male caregivers who are caring for their spouse, life partners, children family members, and friends, and joining the ranks of the throngs of women caregivers who have historically been central to this effort. The podcast is co-hosted and produced by Bob Coughlin and Paul Kidwell, with technical supervision provided by Dan Thibeault of Fast Twitch Media.