Caregiving & Pain Advocacy
Paul Gileno, Founder and President
U.S. Pain Foundation
November 15, 2017
Welcome! Thank you for joining us today for a discussion during caregiver awareness month on “Giving Thanks for Caregivers and Advocates”. This Facebook chat will be hosted by Paul Gileno, U.S. Pain Foundation Founder and will cover topics such as:
- The importance of caregivers and advocates in the pain community.
- Services and support available for caregivers and pain patients.
- How advocacy support can help you better navigate your day-to-day life.
- The inspiration behind U.S. Pain Foundation.
- How to get involved and take a more active role in my treatment plans.
- Learning more about key issues that affect the pain community both on the state & federal level.
- and much more.
A powerful voice in the pain community and beyond, Paul Gileno is the founder and president of the U.S. Pain Foundation. Gileno, a chef by training, started the organization in 2006 after a work injury led to several severe pain conditions and forced him to close his thriving catering business. Since then, Gileno has grown U.S. Pain into the leading chronic pain advocacy organization in the nation, with more than 100,000 members across the country. The overarching mission of the group is to connect, inform, empower, and advocate for the 100 million American living with some form of constant pain. Toward that goal, U.S. Pain offers dozens of support and educational programs, including its flagship program, the INvisible Project, which highlights patient stories. In honor of his efforts, Gileno has received several awards, including Unsung Hero Award from Grünenthal USA in 2014, the Pain Educator of the Year Award from the American Society of Pain Educators in 2015, and a Presidential Commendation from the American Academy of Pain Medicine in 2017. He also sits on multiple pain-related advisory boards and task forces. Gileno resides in New York and in his spare time, loves to cook for family and friends.
Now, please join us in welcoming Paul.
Amanda Proctor: They just don’t hear us. How do we make them hear us, understand us, and most importantly work with us instead of against us? (Opiate commission and policy makers for opiates and medical marijuana)
Paul: Amanda, thank you so much for the comment, we need work together to make our voices heard. It is very difficult but together we can make chnage. we started a program called peoplewithpainmatter.org
Amanda Proctor Thank you!
Paul: Always remember you are not alone
Susan Hamrick I agree. We are treated as worthless. When all we want and Need is to enjoy our life and to be able to participate again. I recently spoke at a conference and was even dismissed there. Guess if it were them experiencing the issues it might be different.
Steve West asked: Does US Pain Foundation offer support with enrolling for Obamacare? It’s all so confusing, can someone walk me through the process?
Paul: Steve, I agree it can be confusing. We certainly do have some US Pain ambassadors who can help. If you contact us we will connect you with someone to help guide you
Kelley Smith asked: What inspired you to start US Pain Foundation?
Paul: Kelly thank you for asking. What inspired me to start US Pain was becoming a person with pain and seeing how unfair and limited education people with pain had.
Chris Kemp asked: What is US Pain Foundation’s stance on cannabis as an option for pain relief?
Paul: Chris, US Pain feels we need as many options as possible to help us with pain. What works for one may not work for another so we need many options. Many people receive huge benefits from medical cannabis so we are for that. In 2018 we have created an INviisble Project dedicated to Medical Cannabis
Anonymous: I am caregiver and I need help with maintaining my own mental health. Do you have recommended psychologists who can help?
Paul: Anonymous, thank you for the hard work you do. I can not imagine how hard it must be, please know you are so needed and we appreciate everything you do. You need to remember that you do need to take care of yourself as well, both mentally and physically. We have an option on our web site that can help you find a specialist as well as a support group for caregivers.
Darla Fowler Tarpey SAME
Monica Rinehart Winter: Can you tell us about the U.S. Pain Ambassadors and how they can help people with pain and their caregivers?
Paul: Monica thank you for asking about our ambassadors, a US Pain ambassador is the life blood of US Pain. They are an amazing group of volunteers dedicated to helping people with pain in multiple ways, from education to information to advocacy to support group leaders. They help people with pain and caregivers with experience, knowledge and support.
Anonymous: I have a hard time speaking with my family members doctor during appointments. Do you have any recommendations so that I can better support her?
Paul: Anonymous, I know it is difficult and we so understand. We are actually having a webinar on how to talk with your doctors on November 21 as part of our “KNOWvember initiative.https://www.uspainfoundation.org/…/eductional/knowvember/
Anonymous: Hi. My husband has been caring for me for the better part of 5 years. I sense that he is angry a lot of the time. But when I try to talk to him about it, he shuts down. Any advice on how to help him help me? Or at least find ways to handle his anger?
Paul: It sounds like your husband is a great caregiver. Many times caregivers shut down as they do not want their loved one to feel guilty for being sick. I would suggest you give them information on support groups. We have tips on how to talk with a caregiver
PainPathways: Will you please share a little information about the Invisible Project?
Paul: Sure, The goal of the INvisible Project is to create pain awareness through the photographs and stories of real pain survivors. Nearly 100 million Americans deal with pain. Chronic pain is an all-encompassing problem that knows no boundaries. It affects the poor and the rich, the young and the old, male and female. No race, class or age is spared from pain. www.invisibleproject.org
PainPathways: do you have any specific outreach available for veterans?
Paul: Veterans in Pain: U.S. Pain Foundation is proud of our American heroes. We thank them for sacrificing everything in order to keep us safe. ��It is of the utmost importance to the foundation that our veterans receive the proper care, benefits and help they deserve and need.
Michaela O’Connor: Do you have any support groups or anything to help either patients or caregivers?
Paul: Michaela yes we do we have an entire support group network called pain connections. http://www.painconnection.org/
Anonymous: I am housebound. Is there anything I can do as a U.S. Pain ambassadore from home?
Paul: 100 percent, I started US Pain from my lap top in my bed when I was homebound. Your voice can be heard, you can run online support groups, educational webinars, you can do advocacy through the phone. You are needed and being homebound will not limit you from helping others
Anne Stiller What do you do when you’ve had 15 joint surgeries and the orthopaedic surgeons swear 100 percent inflammatory arthritis but rheumatologist says it’s ostio, which it is NOT obviously……don’t know what to do anymore…..
Paul: Anne, I know it is so hard. US Pain can not give medical advice but we can direct you with our find a specialist app. In addition we can connect you with Health Care Providers from AAPM.
Anne Stiller How on earth do you know what to take……someone who I know to be a functional therapist I got hemp oil from and it helps on my knee but it’s only 25 mg. and came without instructions. I totally need an oil or cream that has no THC so no dizziness, etc. What does someone do?
Paul: Anne, If you are in a state where it is legal it should be dispensed from a licensed pharmacy and should have instructions, the prescribing doctor should give you instructions, in addition I would talk to others in that state who have experience.
Everyone, our time is unfortunately up. We appreciate all of your thoughtful questions and our experts’ informative responses. Check back with us for our next Facebook chat!
To order a subscription to PainPathways, visit us online at https://www.painpathways.org/…/1-year-subscription-4-issues/
Hi everyone! This is Amy North, editor of PainPathways Magazine. On behalf of the magazine, we’d like to thank our expert and all those who participated in tonight’s chat! We are excited to be offering this great forum for information and inspiration. We’ll post transcripts of the chat to our website soon.
Have a good evening everyone!
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PainPathways is the first, only and ultimate pain magazine. First published in spring 2008, PainPathways is the culmination of the vision of Richard L. Rauck, MD, to provide a shared resource for people living with and caring for others in pain. This quarterly resource not only provides in-depth information on current treatments, therapies and research studies but also connects people who live with pain, both personally and professionally.
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