HNF is honored to have Gary Barg, noted speaker, author, and publisher on caregiving issues since 1995, speak at the upcoming Patient-Centered Charcot-Marie-Tooth Summit on October 6, 2016.
Gary is the CEO and Editor-In-Chief Caregiver Media Group, and Founder and Editor-In-Chief of the first national magazine for caregivers, Today’s Caregiver. He also spearheaded the original online caregiver community, caregiver.com.
We asked Gary to share his insights on some of the most significant issues CMT caregivers face today:
HNF: How important is the role of the family caregiver in managing the hardships on families caring for patients with CMT?
Gary: The partnership between family caregiver, medical caregivers, and many times the person living with CMT, is vitally important to the health and well-being of all. The more that a family caregiver understands how important caring for themselves is to the care of their love ones, and the voice we need to have in the care of our loved ones, the better that care can be. My mother was my strongest advocate and was able to get the doctors to properly diagnose my CMT, as well as fight to ensure I received the best care available to me at the time of my diagnosis.
HNF: How will attending the Summit help support the caregiver’s voice?
Gary: I know from experience that when family caregivers are dealing with a specific healthcare situation, spend time together, and share with one another, our voices are magnified. That’s how changes are made for our loved ones in the medical, healthcare, and even legislative arenas. Each family caregiver has a piece of the caregiving puzzle that another participant has been seeking. Interacting with one another, learning from the experts and asking questions, empower us all.
HNF: How can caregivers reduce the stress they face?
Gary: One of the most devastating challenges we face as family caregivers is isolation, thinking that no one else is going through what we go through and no one can help. Nothing is further from the truth. CMT caregivers need to be able to share their concerns, questions and solutions with one another online, and in person in order to provide the best help for ourselves, our families, and our loved ones. No one needs go through this alone.
HNF: How do caregivers help loved ones select and apply for Medicare, Medicaid, and SSI?
An educated family caregiver is the best advocate that anyone living with CMT can have. To be able to learn what is available and never take an easy no as an answer from anyone standing in the way of the benefits our loved ones deserve. Three of the most important words that any family caregiver can learn to use are “Who is your supervisor?”
HNF: Wow…66.7 million Americans are caregivers?
Caregivers are the most important and most underutilized political action group this nation has ever seen. Imagine if all family caregivers voted with regards to our concerns, locally, statewide and nationally or even let those in power know our concern as CMT caregivers.
What role do CMT caregivers play in clinical trials?
Every single drug on the market has gone through the clinical trial protocol. Clinical trials are an extremely important aspect to the work of family caregivers. The problem is that so many of us are misinformed as to what a trial is, how it can help our loved ones, or even where to find appropriate trials. This is a topic we cover often in Today’s Caregiver magazine and on caregiver.com.
Want to meet Gary and learn more about the CMT caregiver?
Come join us on October 6, 2016 at the first Patient-Centered Charcot-Marie-Tooth Summit at the 3 West Club in New York City.
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