My name is Donna Bonia and I am the mother of a fantastic son named Rob. When Rob was 14 years old, he was diagnosed with a rare form of brain cancer called CNS Lymphoma. At diagnosis he was only given 30 days to survive – chemotherapy and radiation helped him to beat those odds, but left him with cognitive and behavioral issues that we did not know how to manage. Rehabilitation services in 1992 were not as advanced as they are now. His high school was not equipped to either understand or handle his specialized learning needs. So, for several years we struggled, searching for whatever help we could find, but only getting as far as speech therapy.
Through a friend, we found out about a newly formed support group for survivors of brain injury and their caregivers. When Brilliant Buzzards group leader Vicki Carr contacted me it was like having a ray of sunshine penetrate our dark cloud. Finally, we found a group of folks who understood what we were going through.
At our first meeting, Rob and I felt right at home with all of the other survivors and their caregivers. That night I also met Sandy Topalian, the manager of the Southeastern Regional Office of the Brain Injury Association of Massachusetts. I shared with her my frustrations about the system. She gave us information about possible services and resources for survivors of brain injury. However, I continued to be frustrated over the lack of services and resources for caregivers. We needed a place where we could share our concerns, express ourselves, and celebrate our victories with people who understand.
After brainstorming with Sandy over possible ways of helping caregivers, I was “elected” as facilitator of the new Caregiver Support Group of East Wareham. My goal is to provide caregivers with an emotionally supportive environment guided by those with mutual understanding!
November is National Family Caregivers Month and I’m once again joining forces with BIA-MA to say thank you to all of the wonderful caregivers across the state. BIA-MA provides support groups and information resources for caregivers and educational workshops and conferences on a variety of topics geared to both survivors and caregivers. If you are frustrated or need resources, please don’t hesitate to contact someone in your region!
If you know a caregiver, show your appreciation – and share it with BIA-MA!
BIA-MA Regional Offices:
- Central Region (Westborough, MA) – (508) 475-0032
- Southeast Region (East Wareham, MA) – (508) 743-0333
- Western Region (Pittsfield, MA) – (413) 443-0200
Share your Caregiver Story:
- Visit us on Facebook https://www.facebook.com/BrainInjuryMA/
- Or email your story to firstname.lastname@example.org