My Dearest Members,
I would like to take the time to personally welcome you to Cauda Equina Foundation's Advocacy Blog page. I was diagnosed with Cauda Equina Syndrome in August of 2012. I have neuropathic pain everyday, foot drop in both legs, neurogenic bladder, loss of most reflexes in both legs, insomnia, the list goes on.
After my diagnosis, I spent 18 months feeling sorry for myself, and living my life just going through the motions. I could no longer physically practice my job, nor could I work in any other capacity. I had no purpose, I was lost. This is something I have never actually shared with anyone close to me, but I share it with you because I know that many of you feel the same hopelessness and loss. I know you wonder why you, will I recover, why am I here, how am I supposed to be happy, when will the pain stop? Yes, I have been there. Sometimes, I am there.
I founded Cauda Equina Foundation after searching for answers and support and finding limited resources, almost no education, if any, and very few places for support. I have experienced a lack of understanding and knowledge from healthcare providers treating me, through no fault of there own as there is limited research available to them on the treatment of CES patients. After hearing similar stories from others with Cauda Equina Syndrome, I had a gut wrenching revelation; someone needs to help us. We need help.That is why I serve Cauda Equina Foundation. It is the reason 50% of our staff either have cauda equina syndrome, or is a caregiver to an individual living with cauda equina syndrome. We will not lose perspective of the reality of living with cauda equina syndrome.
My background is as an Emergency Medicine and Critical Care Registered Respiratory Therapist. I participated in developing clinical practice guidelines, best practice reviews, clinical research trials, clinical education, and developing research initiatives. I knew what had to be done on the medical side of cauda equina syndrome, but I had no idea how to come up with the resources to make it happen. So, I went back to graduate school to study Nonprofit Management and Public Administration to learn how to build a foundation in which we can achieve our mission.
Cauda Equina Foundation serves to improve the quality of life and care for individuals living with cauda equina syndrome.
We serve our mission on an international basis, and we are currently serving in over 30 countries, all with unique needs. However, one thing remains clear and evident, there is a lack of advocacy, research, and education in all aspects of individuals living with cauda equina syndrome. We are passionate about developing research initiatives, awareness and education about cauda equina syndrome to the community on an international level.
Through our commitment to our mission, we hired Bren Bondy-Caldicott. She specializes in Cauda Equina Syndrome Public Relations and Advocacy. As a caregiver to her husband, diagnosed with Cauda Equina Syndrome in 2013, Bren has a deep understanding of how Cauda Equina Syndrome affects not just the individual living with it, but also the relationships surrounding them. She received her certificate as a Personal Support Worker at CDI College, a Personal Attendant diploma from Fanshawe College, and a Mental Health Nursing Certificate at Niagara College. Bren's responsibilities include directing advocacy and awareness campaign initiatives, directing social media and networking, and overseeing the Cauda Equina Community Support Groups.
We will be adding to our blog on a bi-monthly basis. Our first topic for discussion is base off the FDA's new warnings about combination pain medication such as hydrocodone/acetaminophen. We felt that the message they sent regarding that class of medications could potentially impact the availability of the medications to our members in need of proper pain management, and added to the stigma that people that are receiving care for chronic pain are addicts. We want to send the message that says, "Open communication and properly controlled pain, between a patient in chronic pain and their physician reduces the risk of addiction." To learn more, stay tuned for Bren's blog titled "Understanding Addiction and the Brain", coming May 1, 2016. If there is something that you would like us to investigate for advocacy, or education, email us at firstname.lastname@example.org.
I wish all of you a happy and healthy life as you journey with us to improve the quality of life and care for individuals living with cauda equina syndrome. If you would like to donate to our organization, please do so through the donate button on the home page.
Amanda Proctor, B.S.-RRT
President & CEO
Cauda Equina Foundation