Treatment and Forward Planning Care

The symptoms of PSP are caused by abnormal clumps to our protein in the brain. At this time, we don't know what causes these abnormal clumps. However, there is eight Centres of Excellence across the UK and there is a lot of research being done. At this time, there is no cure, there is no medication that really helps, but we are able to manage symptoms. For people with PSP, it's vital that they have involvement of a multi-disciplinary team that can be in the form of neurologists, specialist nurses, occupational therapists who go into the home and assess the person's need to help maintain their independence, physiotherapists, speech and language therapist, as we have mentioned, are vital. Optometrist, to see if there is any way that they can help with people's vision or minimize the difficulties they are having. Home care workers who come in to often help with washing and dressing. The people who are seeing people with PSP every day are often the people that pick up all the subtle symptoms.

Another organisation which is really vital to be referred into is the hospice organisation. Hospices are well known for their work with people with cancer, but actually, they play a major part looking after people with long-term neurological conditions, providing hospice at home, day support and also provide a lot of support for the carers. And the other voluntary sector of the PSPA is a good service to get involved with. I think a lot of it is working with the family and carers, to make them more aware of what difficulties the people are having, so that not to rush them and not to anticipate what they said, to actually listen to what they are saying. And with early referral to speech therapists is vital. The speech therapist helps with all sorts of communication, but another area associated with speech is swallowing. People present early with swallowing difficulties, when they are eating and drinking, they might think food goes down the wrong way. People tend to aspirate a little bit, which can lead to chest infections, pneumonia and a lot of hospital admissions are actually because of chest infections, that's because of the reduced swallow and reduced cough reflex.

And I have to say, the people that we have met really have shown an interest in it, so, they will tell you the first time we met him, he immediately went on the website to see who could find out some information. The physio that they were under in Colchester is fantastic and any time we go to see someone else, she wants to be on the former immediately to see what they have told us, how might this illness change, 'cause she had not come across it too much before. So, I find that the people that we meet have got a real thirst for the information. But I guess when they are not meeting that many people that often, these, perhaps, all the things that they need to read more on initially, that maybe come across, it is more helpful in their day-to-day jobs. So, I think more information to the people that need it would be really helpful.

The doctor, at first, did not seem to understand what PSP was and the society sent him an information leaflet, so he now seems to understand more.

I think it's important for healthcare professionals to understand the condition and to help get the diagnosis quicker, where possible, because so complex symptoms and so much worry, I saw in my mum that whatever they were coming up with as a diagnosis, she really in herself did not think it was that. So, went along with it for the first few weeks or months of treatment, whatever that would be, and for me, um, it was the vertigo treatment. It is just a lot of work with the physio, but deep down, she knew that she was not getting any better and that created a lot of angst and a lot of anxiety and I'm sure that that, in the early months, did not help mom come to terms that something serious was wrong.

So, I think that would help with maybe early diagnosis if it was more readily understood and, I guess, rare illnesses like this. And then, I think it would help, certainly, my mum when she is going to check-ups, outreach appointments, things like this, to feel more supported when she goes. So, often, we get times for things in the morning to go to appointments where, quite frankly, my mum is no good until lunchtime, it takes her so long to get up and out of bed and then she is exhausted. So, we then need to let her rest on the bed for a period of time, so we really can not get anywhere, even local places, until after lunchtime. So, I think, even if people understood, perhaps, that it is common for PSP and CBD sufferers, that they could make adjustments to the time's things are done. That's a simple thing, I think.

Most people that you talked to have never heard about it. David has some cards that he gives out to people so they will understand. But we find, they don't take much notice of the card. They don't read it and find the website that is printed on the card. I was in hospital before Christmas and we put a card on the table that you have by the bedside and no one looked at it or asked me any questions. And so, the way they treated me in the hospital, they really did not know what, about the condition. They wanted me to walk and I'm not able to.

She has got significant speech problems now and that's... While she has no dementia symptoms, she finds it difficult to verbalize some of the words that she is thinking in her mind and so that appears the her speech is often slow and slurred and it is difficult for people to always recognise some of the things that she is saying. So, people can often treat as if she has got dementia as well. But I think, without me there being able to talk to people about what is going on, it would be virtually impossible for my mum some days to get over the difficulties that she has faced and actually answer some of the questions that she is being asked.

With Parkinson's, the medication is very effective. The main medication we use is Levodopa. However, when Levodopa is given to people with PSP, there is not any response. The dose is often increased quite drastically and still, there is no response, which helps give us a differential diagnosis. Fatigue can have an overwhelming effect on the person's quality of life, carrying out their activities of daily living. If they have hospital appointments to go to and actually judging appointments later on in the day, it can not be underestimated how much effort goes into getting somebody up, getting them washed and dressed and getting them ready to go off for the appointment. Often people will need a rest before they go out.