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“It is so important for health professionals to be educated because when they are, it really makes a difference when it matters the most.”
Elizabeth Reade’s husband is living with PSP. Elizabeth talks about the changes they have had to face as Robert’s PSP progresses.
“Standing up to give the father of the bride speech at our daughter’s wedding, it was clear something was wrong. Robert’s speech was rambling, and a bit strange. Now, of course, we know why, but at the time we had no idea what was happening in his brain.
“Looking back the signs were there, but we just didn’t realise how serious it was. My husband had always been very fit and active. He was a sociable man in his early 50s who had a high-profile job that took him around the world. Around six years ago his personality started to change. He didn’t want to socialise. I noticed he started to drive the car too close to the kerb – something he had never done before. I thought perhaps he was depressed and under too much pressure at work. Then, he became reluctant to travel abroad. For a man who spent so much of his time travelling, this was very odd.
“In 2014 he started to experience balance problems. I also noticed how his foot would catch on the floor when he walked. By the end of the year, he was falling over quite regularly. His personality had completely changed. He was certainly not the man I married. I frequently tried to get him to go to the doctor, but he always resisted. After one particularly bad fall, I made him go. That is when he told me his work had made him go to occupational health for an assessment. They clearly also noticed something was wrong. He underwent a conventional dementia test that was inconculsive. Occupational health simply said something was wrong, but they couldn’t identify what it was. They recommended he saw a doctor. Finally, in March 2015 we got him to see a GP. The GP was very good. He said he didn’t know what was wrong, but that he needed to see a neurologist. Robert was sent for an MRI and nerve conduction tests. During this time, the troubling thing was Robert didn’t seem worried at all. In May, we were told the devastating news Robert had PSP. He was 55.
“By the time of his diagnosis, Robert was no longer able to forward plan. It has been very difficult. All the way along I was hoping he had Parkinson’s. How funny to hope your husband has Parkinson’s disease.
“HOW FUNNY TO HOPE YOUR HUSBAND HAS PARKINSON’S DISEASE.”
“Nine months after his diagnosis, I left my job as a radiology manager for North Tees hospital. I started to work part-time, three days a week. Robert was medically retired.
Robert and I were planning to work until we were 60, but now due to the dent in our pension savings, I will have to work much longer. People often don’t realise the financial implications of getting a disease like this when you’re still working. All your plans for the future are suddenly dashed.
“Robert gets PIP, but we had to appeal for him to get the full amount. PIP now funds most of his care bill. He has carers in for four visits a day, seven days a week. We now have CHC funding which funds half his care. I don’t think the assessors have a good understanding of PSP and what it means. The guidelines say they shouldn’t be disease-specific but I think they are.
“When you say your partner has cancer people understand how serious it is. When you say your husband has PSP they just look at you blankly. You always have to explain it. Some days that’s okay, but other days I just don’t feel I have the energy to go into details.
“Robert has been badly affected cognitively by PSP. His personality is so different. That is the most difficult bit. As a person, he has totally changed and that happened early on. He can’t swallow, walk, struggles with his vision and has to have a catheter. His catheter is a pain because he gets one infection after the other yet can’t tolerate antibiotics. “I try and take Robert out, but it’s very tiring for him. He always wants to go to the PSPA support group. I honestly don’t know what he gets out of it, but it’s something he wants to do. Afterwards, he needs at least two days to recover. Robert will be 60 at the end of May. He has refused a PEG feeding tube. From what I can understand, he doesn’t want to go into hospital. He is scared if he goes in he won’t get to go home.
“Accessing the support group and PSPA has helped. Simply speaking to other people who understand the illness is helpful. PSPA sent me some really useful information about CHC funding and has helped me prepare for the meetings.
“In the last few months since Robert has deteriorated, we have had huge support from the GP and the district nurses. The district nurses have gone out of their way to find out about PSP. This makes a huge impact and to have informed and active health care professionals really helps. I understand why it is so important for health professionals to be educated about PSP because when they are, it really makes a difference when it matters the most.”