This will likely only interest the PSP folks though everyone might like to know that Patricia Richardson (an actress who was on “Home Improvement” and a few other TV shows) is the new national spokesperson for the PSP cause. Of course the Parkinson’s community has been greatly aided by Michael J. Fox becoming a spokesperson for the cause. Certainly all the diseases covered by our group would be aided by some famous person being associated with them.
Dudley Moore had PSP. Because he was diagnosed fairly late in the disease course, there was only so much he could do as a spokesperson for the cause. And, these days, very few people seem to have heard of Dudley Moore. (I realize knowing who Dudley Moore is “shows my age.”)
In mid-December ’06, CurePSP, the new name for the Society for Progressive Supranuclear Palsy, sent out a letter announcing that actress Patricia Richardson has become its national spokesperson. Her father had PSP; he died in December ’05. I had never heard of her before. Hopefully many of you have! She played Jill Taylor in the TV show “Home Improvement,” Sheila Brooks in the TV show “The West Wing,” and Dr. Campbell in the TV show “Strong Medicine.” Almost a year ago I was told that things were in the works for her to become the national spokesperson. I guess it took awhile.
I don’t know if CurePSP’s December letter went out to past donors or everyone on their mailing list. (If you aren’t on their mailing list, you should get on it. Go to psp.org and sign up for the quarterly newsletter.) Enclosed with the fundraising letter was Richardson’s poignant story. In case you didn’t see it, I’m copying Richardson’s story below.
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Letter from Patricia Richardson
CurePSP Fundraising Letter
December 2007
I am honored to be the National Spokesperson for CurePSP – the Society for Progressive Supranuclear Palsy.
My father, Laurence, had PSP, and when I tell people how he died they look surprised because they have never heard of PSP. I tell them it also killed Dudley Moore and that it’s a brain tangle disease like Parkinson’s… but you can’t really explain how terrible it is. The only person I ever met who had heard of it was the producer of the hit show ER, and that’s because of his many years of involvement with medical cases. CurePSP has asked me to write my father’s story, but it’s hard to do. Like many families of love ones with PSP, my family didn’t know he had the disease for the first few years. Like many of you reading this letter, we had our hearts broken as we watched Dad struggle with this cruel and bewildering disease.
My Dad was an intelligent, proud, funny, robust, active, and athletic man with many types of arthritic injuries and health problems that disguised the onslaught of PSP. We thought of him as being an unstoppable force – a tiger. My mother was the one with the bigger health problems, and he was taking care of her because she had heumatoid arthritis, high blood pressure, congestive heart failure, emphysema, three hip replacements, hand surgery, meningitis, and strokes! Mom and Dad were married for nearly 60 years and even after her death he continued to be vital, curious, and as independent as possible. Dad died of PSP in December 2005, only three years after Mom passed away. Dad didn’t have that extra time that we had expected him to have so that he could enjoy all the things he put on hold while taking care of Mom. Dad joined my mother before she died in assisted living and was falling down a lot. We thought, at that point, that Mom was really pulling him down when she was falling. We soon realized, however, that he was pulling her down when he lost his balance. My sisters and I didn’t live near my Dad when he retired. He and Mom didn’t want to be a burden to us. As a retired Naval officer, he wanted to be near a base and chose to move near to where his brother lived. So, my sisters and I took turns going to their home each time there was a surgery, a medical problem, a crisis, or for holidays. In addition to Mom’s problems, Dad had back surgery, hip surgery, open heart surgery, and a knee replacement. Because I was a well known TV star on Home Improvement, I often got a chance to see Dad as well as get some extra attention for him during his stays at the hospital.
When I look back, I think that his heart surgery was the thing that most disguised his PSP-driven decline, especially his thought processes. I read that there is sometimes a significant cognitive loss when the patient has been on a heart-lung machine for some hours. We all noticed quite a difference in his sharpness and quick thinking. Dad was also unable to benefit from physical therapy afterwards. He didn’t walk or work out enough. We attributed his stiffness to the osteoarthritis, the knee problems, and lack of exercise. Eventually, Dad began to speak less and less, and we noticed that he was saying “that’s right” in stead of using a more appropriate response. We didn’t realize at that time that this reply was his inability to form the words; a kind of aphasia. We also had to stop Dad from giving himself, and Mom, medication fearing that he would make some terribly dangerous mistakes. My sisters and I confronted him about that and he was furious. He soon realized that he was beginning to lose his independence. How painful it must have been for Dad to have his competence challenged especially by his own daughters.
Dad was having more and more minor car accidents, mostly on the grounds of the retirement community in which he and Mom lived. One time we were on vacation and he had my son Henry in the car with him. Dad backed into a police car on a parking lot! Fortunately, no one was hurt. At that time, everyone found it pretty amusing because in retrospect, it was very early in his illness and we just thought that “Mr. Perfect” made a mistake. Increasingly though, Dad couldn’t turn his head to look around behind him, so he went through stop signs and red lights. His driving terrified Mom and the sitter when he took them on various errands. Because we now had a private day time nursing assistant, we started to get daily reports about our parents’ problems and behavior. Dad wasn’t telling us about the accidents, and Mom couldn’t tell us because by that time she had a few strokes and was incoherent. We finally learned about the accidents and Dad’s other odd behaviors from a concerned neighbor and friend.
Eventually, Dad flunked his driving test and lost his license. This made him terribly angry and depressed. We discovered, however, that he was still driving on the grounds of the retirement community. Then we had to take his car away, which only added insult to injury!
The family wasn’t getting anywhere with a proper diagnosis of Dad’s PSP, so we decided to take him to a new doctor – Dr. John Patterson, a very kind physician who worked at the clinic at the retirement home. Finally, we got some answers and help.
Dr. Patterson had a small geriatric practice and was the type of doctor you pray for; the kind that goes above and beyond to help their patients. After concluding that Dad’s medication, Sinemet, wasn’t helping him with his symptoms, Dr. Patterson diagnosed that he really didn’t have Parkinson’s disease, but actually PSP. He then sent Dad to a neurologist to confirm his diagnosis. Sure enough, Dad’s lack of eye movement confirmed the sad diagnosis. We were shocked to realize that Dad hadn’t received the correct diagnosis of PSP for such a long time and not until just two years before his death. In hindsight, he had already had the disease for several years!
In addition to taking the lead on the PSP diagnosis, Dr. Patterson also suggested a treatment called VitalStim, a form of electrode therapy. Dad was losing his speech and starting to have real difficulty swallowing. The therapy worked well and after his first treatment he was able to speak much better. We were thrilled. Dad would have the treatments as needed, but no more frequently than four months apart. Because of the nature of the treatment and how it taps into specific brain cells, a patient can’t continue to have them for long. Unfortunately, Dad slowly lost his speech again. Toward the end of his treatment, he could only speak during the actual therapy and then eventually not at all. His ability to swallow, however, continued for another year until the stroke that preceded his death.
Never in a million years, would I have imagined that my father would have put up with the difficulties of his life with PSP. Yet he did put up with it, in bed, in a wheel chair and in an electric lifting recliner. That recliner became his cockpit and gave him some sort of control of his life. He had a TV with earphones which helped him hear without the sound blaring into the room. Toward the end of his life he seemed to lose interest in watching anything. We had pictures of his family across from his bed where he could see them any time he wanted. Dad now depended on his beloved caregiver, Alice, to bathe and dress him. He loved good food and wine and now seemed satisfied with thickened juice and meat even when it was ground up. Because of the eye problems caused by the PSP, he couldn’t read, and he watched TV without his glasses, often grimacing in pain from spasms that he would have in his arms and legs. At one point, we all assumed that Dad had lost his mind due to the medications or the disease but, we realized later that he was in fact cognitive. He was a man; now very impaired and trapped in a body that had once been handsome and vital.
Although Dad benefited from a high level of personal care that many PSP sufferers do not receive, he still didn’t have an easy time of it. Our father had been the president of a major corporation, but now he was frozen and helpless in a bed. It was a terrible thing to see him looking so frightened. Often, we didn’t know how much Dad was really with us as his moods got blacker and he seemed so far away. Sometimes he’d just stare into space or sleep. We all knew that it was the terrible effects of PSP. I would fly from the west coast to be with him for a few days, but he was barely awake. When he was awake, Dad would peer at me, but he didn’t seem to know me. Occasionally, he’d laugh while listening to us talk or, while watching a movie, he’d cry at the mention of his grandchildren. Sometimes I wasn’t sure if he was laughing or crying because they sounded so much alike.
For a while, Dad was still able to use one hand although most of his body was useless or contorted in muscle spasms. Sometimes muscle relaxants controlled the spasms and we treasured that one hand that seemed to work consistently. We tried to keep it open and useable by giving him a stuffed Scottish terrier dog to hold. (I knew he would like it because it was the same dog that his mother had). When Dad could no longer speak, he would give us the thumbs up or thumbs down sign with his one good hand to tell us yes or no to the vital question such as “do you want a vanilla milkshake?” Dad had been a Naval fighter pilot and test pilot, and was accustomed, as pilots do, to giving the thumbs up when everything was okay for take off. Dad was also famous in the health clinic for his strong, sometimes even painfully firm, handshake.
I can’t tell you what a loss it was when he no longer had the strength to command that thumb to go up or down or to just shake hands. I tried to get him to blink yes or no, but Dad would just stare in the way that PSP patients often do. Dad had a stroke when I was shooting an episode of The West Wing. Coincidently, it turned out to be the episode during which John Spenser (one of the actors on West Wing) died. I flew to Virginia to see Dad and soon learned that he was unable to swallow. We decided not to insert a feeding tube. Our decision was based on Dad’s medical directives and the fact that his health had so deteriorated in the last month. He had lost 20 pounds and the doctors said it was clear that he was near the end of his life. Dad had reached that part of the disease where he slept most of the time and was hardly eating. We felt that a feeding tube would really be prolonging his struggle and not improve his quality of life. Dad could no longer receive medication by mouth since he couldn’t swallow so he was provided with an intravenous tube for hydration and to make him comfortable. His serious lung problems were soon to follow, but I will spare you the painful details.
I flew back to the Los Angeles to finish an episode of The West Wing while my sisters stayed with Dad. They expected him to live for a few more weeks. When I came back east my sisters and I ended up sleeping in Dad’s room and staying with him around the clock for four nights. We slept with one eye open to watch him and listened to his breathing. We petted his brow and held his hand. We played guitar music for him as he had played the guitar for us as children. We talked to him, gave him permission to go, laughed and cried, prayed and waited. Dad gradually slipped into a coma but seemed to be aware of our comforting presence.
Alice, his caregiver, and the nurses who came in and out of his room explained to us what to expect in the process of dying. People are usually afraid to talk about death, but after this experience, I think that I am less afraid to talk about it. The more the nurse talked to us about what was going to happen, the less frightened we became. My sisters and I had been coming to the retirement community for years to visit our parents so we were all well known by the staff there. They brought us coffee and muffins in the mornings and blankets and pillows at night. Dad’s wonderful doctor – Dr. John Patterson had also become our friend and cried with us when he died. He had known and cared for both Mom and Dad for years.
We donated Dad’s brain for research to the Eloise H. Troxel Memorial Brain Bank supported by CurePSP, at the Mayo Clinic in Jacksonville, Florida. They confirmed the diagnosis of PSP. The areas of his brain that were most affected caused severe damage to motor areas in the brain. I found this so sad and wondered what did Dad do to deserve this kind of death? Why did he have to have such a tragic final chapter? But more importantly, what can I do now to help prevent others from suffering with PSP? What can we all do?
I hope that you will join me in the fight against PSP. CurePSP (Society for PSP) funds research and provides outreach and education to families dealing with PSP every day. It educates physicians and healthcare professionals worldwide on PSP diagnosis and symptoms. It was CurePSP’s website where I first found knowledge about my father’s disease. CurePSP receives no government funding and is solely dependent on gifts from generous people just like you. Please send in your gift today to help CurePSP’s vital programs and services.
I am looking forward to helping CurePSP through my involvement as the national spokesperson, in public awareness campaigns, guest appearances and much more. Please, join me in our fight to find a cure for PSP while we help those affected by this terrible disease.
On behalf of all those affected by PSP, and in memory of my Dad, Laurence Richardson, I thank you for your support.
Together, we will find a cure.
Warm regards,
Patricia Richardson
National Spokesperson
CurePSP