In this second article in our series about multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD), you’ll meet Ileen McFarland, a Dallas-based support group facilitator for the CurePSP Foundation, a national non-profit organization. Ileen also chairs the CurePSP Patient and Carepartner Advocacy Committee. – Jan Gartenberg, BSN, RN
My first experience with PSP (Progressive Supranuclear Palsy) was when my late husband was diagnosed. The movement disorder neurologist who gave the diagnosis did not share anything other than it was a movement disorder rare brain disease with no defined treatment or cure. Rather difficult to digest in the moment, however, the reliable internet provided oh so much more devastating information. It was then that I came across the CurePSP Foundation and lucky for us they were sponsoring a Family Conference in our area just 2 months away. It was the most eye opening, informative, and supportive experience. That was in 2007 and because of their support, today I serve on the Board of Directors, Chair the Patient and Care Partner Advocacy Committee, serve as a support group facilitator for over 10 years and now facilitate a local support group here in Dallas.
The CurePSP Foundation is a non-profit organization with a mission to bring awareness, education, care and cure for devasting prime of life neurodegenerative diseases and serve those patients, caregivers and families who are navigating the progression of these diseases such as PSP, MSA and CBD. We have approximately 164 support groups Nationwide and several international supports groups. Those who are newly diagnosed know that finding detailed information and support for these diseases is not easy. Our valuable programs provide families with hope, hope for a decent quality of life during their journey and provide resources and valuable tools to help them navigate through the progression. As an example, our Quality of Life Respite Fund was created to provide grants to caregivers who cannot afford professional caregivers to help with their loved ones. This program has expanded over the years and has provided relief to so many.
CurePSP has been in the forefront of the research. As Dr. Lawrence Golbe stated in our Guidebook, “We have formed collaborations with multiple organizations large and small to bring their resources to bear on “our” disease. We continue to provide grant money to established, top researchers and to students doing faculty-supervised summer projects on PSP. We convene an annual international scientific conference at which researchers share their finding and ideas. We have formed a network of clinical centers at medical schools with verifiable expertise in PSP, our Centers of Care initiative”. These Centers of Care also serve patients who have been diagnosed with CBD and MSA.
It is so important for our many volunteers to connect with their local Movement Disorder Clinics, Hospices, Home Care organizations, clinicians, etc., to provide material that guides the patients and families to our network so we can provide them support and guide them to various care and clinical services. As an example, UT Southwestern Movement Disorder Clinic (https://utswmed.org/conditions-treatments/movement-disorders/) has been a source of our support group patients and their families who have been diagnosed with PSP, CBD or MSA. Some of those families are now under the care of Pathway Hospice. It is difficult to find a Hospice that is familiar with these diseases and takes an interest in learning about the disease as well as how to care for the patient.
In closing, I suspect it is difficult for a movement disorder neurologist to deliver a diagnosis to a patient with any of these rare brain diseases. What the patient and the family learn after the diagnosis can be devastating. It is a terminal diagnosis, with no cure and a progression that will leave them unable to walk, swallow, speak and more. Connecting them to the CurePSP organization and the valuable services and support we provide can be a beam of hope to at least achieve a decent quality of life and a place where they know they are not alone. I know it did for my late husband Terry.