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When Dan and Meghan’s 5-year old son Ryan was born with a rare genetic disorder that causes severe developmental delays—they didn’t know where to turn. Seizures, surgeries, and sleepless nights due to respiratory issues required constant hospital stays in the first six months of Ryan’s life, which took a toll on the young parents.

“I spent so much time on the phone dealing with insurance companies and coordinating doctor’s appointments that I wasn’t able to spend quality time with my newborn,” says Meghan.

With their hospital over an hour away and with Ryan requiring large, heavy equipment to help with the respiratory issues, Meghan and Dan began searching for extra support as they continued to see multiple specialists. Social media research led them to a specialty that helps children and their families deal with all aspects of a serious illness.

This is Ryan’s palliative care story.

Hosted by Dan Altano

When Sarah was diagnosed with metastatic colon cancer at age 34, she was immediately determined to find the best care possible. She fought for an oncologist who would support her at every turn, and sought out specialists from many different disciplines to provide her better care. She found her own pharmacist to organize her medications, pain specialists and physical therapists to help her with painful symptoms and side effects of treatment, and other doctors to round out her care team. She was willing to do anything to remain active and play a pivotal role in the growth of her two young sons.

“I think any serious illness is going to make a patient assess their life, their values, and their purpose,” says Sarah. “Patients deserve the highest level of care available and I wasn’t going to settle.”

One day while chatting with a friend, Sarah was talking about the makeshift care team she assembled to give her an extra layer of support as she treated her cancer when her friend interrupted her.

“That sounds a lot like palliative care,” the friend said.

This is Sarah’s story.

Hosted by Dan Altano

A Quality Life: Rock Man Willie’s Rectal Cancer Story

At an infusion clinic in Dayton, Ohio—which provides chemotherapy treatment to cancer patients—there’s a man known by all as “Rock Man Willie.” When he’s there, Willie stops at each infusion station to chat with people who could use a good distraction. With him are an array of small hand-painted rocks he’s designed himself which he hands out to cheer up those facing cancer. In return for these support rocks, Willie only asks for one thing from each recipient: a smile.

Bringing a smile to others is Rock Man Willie’s mission. But his journey to finding his own happiness has been fraught with ups and downs. In 2014, when he was 41-years-old, Willie was diagnosed with Stage IV Rectal Adenocarcinoma. The severe pain caused by the illness as well as symptoms from cancer treatment left him frustrated and debilitated. A four-year uphill climb led his oncologist to refer him to medical specialists who could help him regain his quality of life while continuing to fight the cancer.

This is Rock Man Willie’s palliative care story.

Hosted by Dan Altano

In this episode, we tell the story of JoAnn, a woman in her early 60s who turned to palliative care for help in making informed treatment decisions and managing the symptoms of non-Hodgkin's lymphoma. Today, JoAnn is enjoying time with her toddler grandchildren. She still sees the palliative care team and credits them with restoring her quality life.

Dan Altano

There is overwhelming research showing that listening to music can provide emotional and behavioral benefits for people with Alzheimer's disease and other types of Dementia. Our podcast guest on this special episode say that the key to helping patients through these methods is in the personalized approach.

In this podcast, Host Dan Altano sits down with Dan Cohen of a program called Music and Memory which provides patients in nursing homes as well as in their houses with iPods and other electronic playing devices. The program also offers training to caregivers to create customized playlists for their loved ones. Meredith Wong of a partner program called CaringKind also joins to share real stories of Music and Memory in action and how it's making a true difference in the world of dementia care.

Hosted by Dan Altano

On good days, you can find Paul of the Washington, DC area in his house, intently focused on one of his woodworking projects. It’s hard work, but it’s a labor of love.

“I’m not the type to sit still. I’m at my happiest when I’m working with my hands and creating something new,” says Paul.

The fact that Paul is able to get up and work on his hobby is something even he couldn’t have imagined five years ago when he was diagnosed with Ewing Sarcoma—a rare cancerous tumor that grows in the bones or in the tissue around the bones. A tumor in his spine caused immense pain to his back, and symptoms from chemotherapy, radiation, and several spinal surgeries left him unable to do even the smallest task.

That’s when he was referred to palliative care.

Hosted by Dan Altano

Since she was 12 years old, Kelly has dealt with an array of medical issues including Mitochondrial Disease, a clot in her lung and main vein to the heart, and Autonomic Neuropathy. These issues caused additional heart and bladder problems, as well as Gastroparesis which affects the normal movement of muscles in the stomach. Kelly had done her best to deal with all the chronic pain for nearly half her life but soon she could no longer work and even the smallest task became an issue.

That's when she asked for palliative care. This is her story.

Hosted by Dan Altano

In this special-edition podcast, Diane E. Meier, MD, of the Center to Advance Palliative Care, and Mary Mittleman, DrPH, of NYU Langone Health, discuss why making a dementia diagnosis is important for successfully managing other health conditions, and the many care elements that can make a difference for patients and caregivers.

Meier and Mittleman acknowledge the difficulty for making the diagnosis, given treatment options, and offer ideas for integrating better dementia care, from physicians doing memory scans to look for memory loss that is impacting daily function, to being supported with access to the right staff for counseling family members and patients, and other psychosocial interventions.

For background on Dr. Mittleman, she and her team provide support for family caregivers through NYU’s New York State-backed Alzheimer’s Disease & Related Dementias Family Support Program. Focusing on the psychosocial, the team provides interventions via support, education, and referrals which make a difference, and improves quality of life for the family, and those with dementia. A popular result of the program is the chorus, ‘The Unforgettables‘, composed of those living with dementia, and their family members; its members have been performing concerts in New York since 2011.

Lupus is a chronic autoimmune disease that can cause damage to skin, joints and organs. After seeing their eldest daughter Danielle deal with prolonged chronic pain, Darryl and Andrea Gladden were determined to ensure that their other two daughters were able to enjoy quality of life.

That’s when they found palliative care.

This episode of the quality life podcast, the Gladden family discusses how their youngest daughter, Deadra, came to find palliative care and how it helped her get back to her old self while dealing with lupus. The podcast also explores how it helped her family members as well.

Hosted by Dan Altano

For many years, Beth, 55, of Baltimore couldn’t shake the nickname her sister and friends gave her.

“They called me Balloon Hand Beth because whenever someone needed something, my hand would float up to volunteer,” says Beth.

Beth has always been very active and willing to pitch in. In her professional life, she has worked tirelessly to improve her city’s environment one planted tree at a time as the Director of the Office of Sustainability in Baltimore. Most days, if she’s not helping out a relative or preparing to host a family holiday party, she can be found in her garden, meticulously growing her own food.

“In the garden, things don’t stay the same. Sometimes a flower doesn’t come back or you have to move things around to make it right. It’s just like life. You have to adjust to your new normal,” says Beth.

Beth has had to use this same philosophy when she was diagnosed with a rare form of stage IV appendix cancer. After multiple surgeries and chemotherapy regimens left her weak and unable to do the things she loved, for the first time in her life, Balloon Hand Beth was the one who had to ask for help. This is her palliative care story.

Hosted by Dan Altano