A Disease Called PSP - My Wife Has It

September 5, 2010

Progressive Supranuclear Palsy – Dudley Moore had this disease.

I have thought about putting this story in writing for a long time. And have had doubts about writing it. But, I have decided that as Sandra and I go through this journey, maybe it should be shared so others that might get this disease will have a better understanding of where they are headed.

This is not written for pity on me as the caregiver to my wife but just to let others know what she is going through. And for others to have compassion for people that have this disease and remember them in their prayers daily….unlike two members of my wife’s family recently that have no compassion at all.

Sandra was diagnosed with Parkinsons Disease in January of 2008. I and family members had noticed a change in Sandra back in 2007 but only as the symptoms became more evident did we decide to go to a neurologist. We had read on the internet about Parkinsons because her symptoms had a lot in commom. Shuffling, hard to move your feet, bad posture – leaning forward, slumping, falling, vision problems and fatigue. Out of the eight symptoms for Parkinsons, we counted five that she had. So, when we got the diagnosis in January we really weren’t surprised but of course devastated that at her age, she had this disease.

During the middle of 2008, her vision and fatigue problems had gotten so bad, she could not do her job…and her boss had noticed. So, in June of 2008, she quit her job and applied for and received disability.

She has been through a lot with this disease but thought that she would live for 25 years or so as many patients with Parkinsons did. While we lived at our previous address, which was a tri-level, she fell many times, one time breaking her foot. So, we left that house and decided to move to a location that I had no yard work to do because I could not handle that plus take care of her. We found a place that was one level and that is where we are at now.

But in February of this year, 2010, her regular neurologist and I were alarmed at how fast her balance problems had progressed. He suggested she see a specialist in Chapel Hill, which we did. That is when she was diagnosed with PSP (progressive supranuclear palsy). This disease is rare – only 20000 Americans – 1 in 100000 over the age of 60, have this disease. The prognosis with this disease is 5 to 7 years. The brain cells degenerate and there is no known cure or what causes this disease. It is often mistaken as Parkinsons, as Sandra’s was. The most frequent first symptom of PSP is a loss of balance while walking.

We have tried walkers for Sandra but she just trips over them and therefore we have now had to confine her to a wheelchair, for her safety. But she still falls from time to time – in fact, she probably falls an average of two times a day because she will forget and get up and start to walk and then lose her balance and fall. I try my best to stay close to her all the time but sometimes that is hard to do. A person with this disease requires constant attention or else they are apt to fall and hit their head and get a concussion or worse.

I love my wife and it is hard to watch as this progresses. She has ups and downs. Most of the time she is tired and lays around a lot. She will get dressed in the mornings but then has to lay down and rest. I have to help dress her, take her to the restroom and feed her a times because her sight is so bad and the fatigue is also bad. She can be walking normally for a bit and then will just fall over. The sad thing is she knows what is going on – from day to day she breaks down and cries and I try to console her. When the fatigue is really bad, I can see it in her eyes. My heart goes out to her and I wish it were me that had this disease. She hums quite a bit plus stays cold quite a bit. She has bruises all over where she has fallen previously. When she gets tired, her speech is so low, I can barely hear her. I have to get up close to hear what she is saying. Plus, she has sleep apnea. She is wearing the mask but not very much because it aggravates her.

Needless to say, this takes a lot of caregiving and I have had to stay off the computer more, so if you do not see more updates, you will understand. All I ask is that you keep Sandra in your prayers and your thoughts as she continues this journey.

I will try to update this story as we continue and hopefully she will not get any worse.

Joel Bailey