Living with PSP

Living with PSP

by Anna Ferraro

Progressive Supranuclear Palsy (PSP) – it’s so rare that just approximately six individuals out of every 100,000 have this disease. Bill Robinson, (pictured), was one of those few. PSP, a degenerative brain disorder, is often confused with Parkinson’s disease, and with good reason – the symptom profile contains striking similarities. But when the Robinson family began dealing with what they thought was a Parkinson’s case in their father, they ran into some confusion.

Stacy Beeley, Robinson’s daughter, shared about how her family’s journey began, saying, “When my dad broke his hip in 2010, we started to see some differences in him. He has always had a big personality. [After that accident], he started becoming disinterested and standoffish. It was hard for us to see [that] because of the kind of person he is. [Then], he started to have balance issues, and that’s when we first got the diagnosis for Parkinson’s.” However, Parkinson’s disease is normally accompanied by tremors – Robinson did not have any of those. His family took the diagnosis, offered care and support, and continued observing.

They began to notice different things, mainly, balance issues, and issues with his gait. These created more challenges, such as falling more and more frequently. One fall resulted in a broken shoulder and a head injury. Beeley commented, “Normal life was just becoming pretty difficult for him.”

When Robinson began to fall backwards particularly, it raised more questions for the family. What were they to do with that and other odd symptoms like the fact that his eyes had a slow transition from up to down? After countless efforts, local doctors were unable to provide insight or medication that made much of a difference. Pat Robinson (Bill’s wife) shared, “We finally just exhausted all means, and went to Mayo Clinic. And that’s when we finally got the diagnosis – PSP. It wasn’t the diagnosis that we wanted, but we finally knew how to go forward.”

Beeley shared, “PSP has to have an environmental component, usually a head trauma, and is often associated with working with pesticides.” These criteria fit her father’s profile exactly, with his history as a farmer, and the head injury that had exacerbated symptoms already in play. She further explained, with PSP, “The protein which maintains cell integrity starts to mutate and begins to destroy brain cells. What we thought was a personality change [in dad] was his brain not being able to produce what he wanted to produce. Many doctors have never seen this disease before. And they don’t know exactly what to do with it.”

Beeley shared, “The interesting thing is that “PSP is ultimately not fatal – there’s not an end-stage.” Often what happens is that the patient gets pneumonia, and their lack of ability to cough causes them to suffocate, or they succumb to an infection. It’s a condition that’s progressive in the fact that it deteriorates the individual.

A bright spot for the Robinson family was the support and information they found through www.CurePSP.org. After attending their conference in Chicago in the summer of 2017, Beeley came away armed with knowledge that helped her sort through the factors that were at play in her parents’ world. She shared, “It was inspiring to see them providing support for the families, and also talking about the causes that they know about, and different trials they’re trying to develop. If they open up an avenue for treating PSP, it would open up an avenue for Alzheimer’s, Parkinson’s, and others. It could be a steppingstone to finding cures and treatments for other brain disorders.”

As she reflected on her family’s experience, Beeley emphasized that she is passionate about supporting other individuals and families who are dealing with this particular disease. She wants them to know that they are not alone. And if they are confused with their diagnoses, they should pursue second and third opinions.

More than anything else, Beeley wanted to simply get the word out, saying, “If someone you know could be dealing with PSP, find a diagnosis, and connect with support through www.CurePSP.org.” In the coming days, she hopes to see more research and attention given to this disease, knowing how critical it is for those walking through it. She added, “My family is committed to continue our part in finding a cure for PSP. We recently found out that there is another woman who was diagnosed in this area. My heart hurts for [her family] knowing the battle that is ahead [for them].”

Pat Robinson, Bill’s wife, shared, “It was a journey. We went a day at a time. We savored the good days and got through the bad days.” For her, one of the hardest things as she looked at her husband was, “He had so much vitality and was so outgoing, and then he regressed do much.”

In addition to learning deep lessons in patience, Robinson expressed new levels of gratefulness. She shared, “We take so many things for granted. Conversation – he’s lost the ability to have conversation. The ability to cough – we take that for granted. … The ability to see. I love light. I love looking out my window and seeing light. He’s not able to do that. Most times, he is wearing sunglasses, since PSP affected his sight so much. He used to love to get the newspaper in the mornings and read it from top to bottom. There were certain things he would really enjoy reading. … He lost that ability also. It was almost impossible for him to follow the lines. All those things that we take for granted most days, became really hard for him.” With a sigh, she added, “He was so good about it… he was the one going through it, and he always tried to stay upbeat for us. It made [me] a stronger person and it made [me] want to try to help him even more.”

With support from their two daughters, five granddaughters, and loving church family, the Robinson’s continued on their journey. They shared, “We tried to stay as positive as we can in the situation that we were given. We feel like the Lord is our strength.”

Through 2017, as they all transitioned into 24-hour nursing care, and Beeley and her sister took turns at the shifts as well, Beeley shared about her parents, “They were still smiling, despite their difficulties.” She also shared, “If we’ve learned one thing more than anything through all of this, it’s patience, and that’s a blessing because our world today doesn’t teach us that.”

A particularly poignant moment that came to her through the journey of diagnosing and living with PSP in her family was when she encountered an ensign from St. Francis of Assisi – the Tau cross. She shared, “this symbol displays a connection of the richness of the past, with the challenges for the future. We all have to bear our crosses, and this is our [family’s] cross. It doesn’t erase what we have had in the past, or change what we will have in the future, but we know that God will always be with us as we walk.”

On December 26th, 2017, Bill Robinson passed away, surrounded by his loving family. Following his passing, the Robinson family set up memorial gifts to be given in his honor to www.CurePSP.org. Stacy Beeley and her family continue to share about PSP with other individuals who may have a loved one who is struggling with Progressive Supranuclear Palsy (PSP).

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