Melissa & Case Hogan share with Patient Commando

In 2009, my then 2-year old son Case was diagnosed with a rare disease called Hunter Syndrome. It is a progressive and degenerative disease that attacks all of the body systems and usually leads to lifespan of only 12-15 years old.

Later that year, he was in the hospital for several procedures including tonsil removal and the placement of a port-a-cath for weekly infusions. It was after these surgeries that he ended up in the PICU because of airway problems. Those were incredibly sobering days. But, you can’t live with sadness 24-hours a day, even in the PICU.

After several days in the PICU, when it seemed as if Case was on the upswing, I collected my “30 Pieces of Hospital Wisdom.” It was that return to writing after the emotional time of his initial diagnosis that would later lead me to start a blog chronicling his journey, www.savingcase.com. Here is my wisdom:

Packing only one change of clothes does not actually make for a shorter hospital stay. Socks don’t really start smelling until you’ve worn them for the third day. Not the second, the third. You really can curl your hair using a compact mirror propped on top of a soap dispenser. Curling your hair while listening [...] continue the story

That Doesn’t Look Like Me

A short documentary written and directed by Jeffrey Vincent Parise. One December afternoon a group of artists walk into a local nursing home and paint portraits it’s residents. During which the filmmaker asks the elders for advice on life, love and art. Three weeks later there is a group show displaying the finished portraits and proceeds of the sales are donated to raise money for Alzheimer’s Disease.

Easing the Burden: Parkinson’s Disease | Part 2

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters

Easing the Burden: Parkinson’s Disease | Part 1

Parkinson’s disease is a neurodegenerative disorder that impairs motor skills, speech and other functions. The disease affects 5 million worldwide and many suffer from Parkinsons Disease in Maine. “Easing the Burden” is an introduction to a few of these Mainers who courageously battle this disease everyday. The program also includes an interview with actor-turned-advocate Michael J. Fox.

Easing the Burden Chapters