An interview with Ileen McFarland: A Journey into the Unknown.
Biography
I was born and lived in Washington, D.C. until the middle 1950’s when we moved to the suburbs of Maryland. I come from a large Italian family who cared for their own. After retiring from my career as an administrator for the Department of Defense I sought various positions in unrelated professions. I have always been active in my church and community and for the past 14 years, a full-time volunteer and Board Member for the CurePSP Foundation.
Can you tell me more about your Advocacy?
I take every opportunity to bring awareness, educate and provide support to caregivers and patients. Last November I was one of several people who was approached by the organization “I AM ALS” to participate in a video that was aired on the big screen at Times Square. The video was about several rare neurological diseases. I have been invited to speak at community events, PD events, Assisted Living facilities and at other organizations. Recently I spoke at a local church sharing my journey as a caregiver to my husband who had PSP. Most people in attendance never heard of PSP.
What is your passion and how did you get involved in PSP awareness and hope for a cure?
During my late husband’s diagnosis and journey with PSP, I received support from CurePSP. I began getting involved with their mission and after my husband passed, I became a volunteer and a Board Member advocating for more support for caregivers and patients.
What type of goals does individuals with PSP have when seeing your Advocacy?
Because PSP is so rare, patients usually get diagnosed with PD at the early onset. Of course, as they progress more quickly the diagnosis is usually changed to PSP, which few people are aware of, including the medical community. It’s difficult for a patient to receive this diagnosis but unimaginable when no one knows of this disease. Finding someone, no matter who they are or what profession, who recognizes PSP, the patient has some relief that they are not alone in this battle.
What type of training and how long are the programs?
CurePSP has training programs for those that facilitate support groups, others who serve as peer volunteers, and those that choose to advocate. The training programs are usually a few days. We have a CurePSP Advocacy Committee which is comprised of prior and present caregivers and some patients who still have the ability to communicate.
What effect can your Advocacy have on an individual with PSP.
I believe I addressed this earlier, but when patients, caregivers and family members or friends become aware of the disease, again, it brings a level of relief to the patient. Additionally, when a patient becomes aware of drug trials, they jump at the opportunity to participate. We currently have 37 Centers of Care throughout the United States and Canada (2). Through these Centers of Care the word is beginning to filter down to the medical community and allied professionals.
What would you like to see as a future goal for your Advocacy.
First and foremost, that the Bill to End Parkinson does not sit stagnant – that the council that is formed will be successful in getting legislation passed to provide funding through the NIH to find a cure for PD and PSP, as well as other neurological diseases.
What events do you participate in?
Fundraisers, we have one here in Dallas every year. I have chaired and served on the CurePSP Patient and Caregiver Advocacy Committee for years, man a CurePSP table at many PD and the like events. Meet with various organizations that serve our community, like Hospice, Home Care companies, assisted living homes and with local neurologists at leading hospitals or movement disorder clinics. Speak at community events. I regularly also attend Research Symposiums in the United States, London through the PSPA and most recently in Toronto Canada where we have a PSP Center of Care.
How does this also assist the caregivers?
Bringing awareness to this rare disease helps the caregivers to be recognized for their role in caring for their loved one. Their voice has become the catalyst for research on the caregiver’s journey. They themselves begin to advocate in their communities knowing how important it is for others to know about PSP.
How can someone get in touch? What is your website”
curepsp.org.
How can others also become advocates for awareness?
CurePSP frequently reaches out to our community to join in on calling or meeting with their representatives to assist in getting a Bill passed, or to complain or ask for their support. They also train volunteers who wish to advocate. People contact curepsp to ask what they can do to help.
In your opinion, what is the key to effective advocacy?
You need a famous face to lead the charge. PD has Michael J. Fox, AFTD has Bruce Willis and we now have Congresswoman Jennifer Wexton. People who are affected by PSP also have a very strong voice in advocating.
How can we better fundraise to support a cure for PSP?
Our volunteers, caregivers, family members and friends continue to fundraise all over the country. Some bring in 5 digits and others 6! With a rare disease it is more difficult to have a gala, per se, because not many people will participate or attend because PSP is unknown. Virtual fundraisers for us are more successful. CurePSP also collaborates with other foundations such as, PD, Alzheimer’s, AFTD, Lewy Body Dementia, I AM ALS, Richard Rainwater Tau Consortium and Mission MSA. Through these collaborations, funds can be pooled for Tau research and other related research.
What other activities do you undertake to help improve and support your daily living exercise and alternative remedies?
This question seems to be more directed to the patient. CurePSP has many webinars on ways to stay fit. Exercise, meditation, music, socialization, can slow down progression. I facilitate 2 support groups, one in Dallas and I co-facilitate a National Caregivers Support Group. These groups help caregivers find remedies for issues through the experiences that others share.
Why should people who don’t have PSP care about this?
Well, this is a good question if related to PD because PD is more prevalent. My answer in that case would be, could you be diagnosed with PD? Wouldn’t you want to find a cure before you get diagnosed. Those of us in the prime of life category seem to be the victims of these neurological diseases. Yes, there are young onset cases, but the majority are older – usually of retirement age. I personally wonder if my brain will make it through my death without developing a neurological disease!
Have you had any family members or relatives affected by PSP?
Other than my husband, no. However, I have had other family members affected by PD, dementia and Alzheimer’s.
If you had one song that would tell us more about you or represent your life, which song would it be?
The hymn Ode to Joy. The lyrics speak of joy in the face of darkness.
If you had one final statement or quote you could leave for the PSP community, what would it be?
Never give up hope and live your life to the fullest in spite of your diagnosis.