TAMPA - The day before Thanksgiving, the Pizzurro family of Carrollwood is busy. First, exercises for both Joey and Michael, than getting the young men mobile for two doctor's visits for treatment of complications from GAN - a neuromuscular disease similar to Lou Gehrig's disease.
She says, "My sons are 29 and 26 now. They were diagnosed at 8 and 5. And Giant Axonal Neuropathy is a very rare debilitating disease, and it's tough you know. Your bodily functions are taken away. Both boys can only move their heads. They're very coherent and intelligent and they want everything in life that most people have and don't even realize it, like a wife, a girlfriend, children. So this disease has robbed us of so many things."
Despite a difficult year -- Michael has been hospitalized five times, and at one point wanted to stop treatment -- Mary says there's lots to be grateful for. "I always tell my family, even though we have our challenges, that we always find a way around them. And my three favorite words are power, prayer and perseverance. You need a lot of courage, too."
A caregiver for the boys all their lives, Mary is also thankful for becoming a recipient of the Shire BRAVE award, winning $10,000 for her relentless devotion and for setting a shining example for the invisible army of 66 million family caregivers, many who balance jobs, household chores and the medical care of loved ones.
"Most patients who have a debilitating disease always need someone there to be with them, to be their arms, their hands, their legs, to push them in and out of vehicles, fill things out for them on applications, so shire recognizes the need to bring to light that caregivers have a very hard job. Their criteria are courage, respect, dedication and impact and patience."
Her advice to other caregivers, "Well, it's very important to take care of yourself. And to have an outlet like a good group of girlfriends, date night with your husband, you can not lose yourself in the disease for sure."
Mary also wanted to share with our viewers information on a campaign called Heroes for Hope. It's a challenge grant to raise money for research and clinical trials for GAN.
For more information, visit http://www.hannahshopefund.org/ .
Resources for caregivers:
- National Alliance for Caregiving -- www.caregiving.org
- Today's caregiver & caregiver media group – www.caregiver.com
- Family caregiver alliance – www.caregiver.org
- Advocacy organizations for various therapeutic areas -- (e.g., MDA - mda.org , Parkinson foundation - parkinson.org , etc.)
- Eurocarers ( eurocarers.org ) for eu-based support options