The PSP Association

My name is Irene, and I'm 77 years old.

I believe I first experienced symptoms of PSP some ten years ago in 1999, when apparently I told work colleagues that I kept feeling ‘drunk', though the first real symptoms I noticed was a year later when I had problems focusing at certain times of the day and I was getting very tired quickly. I visited my GP who thought that my problems were linked to my underactive thyroid. After months of increasing and decreasing the dosage of my thyroid medication, I still felt ‘unwell' - that's the only way I can describe it - but all my GP would offer me was anti-depressant medication. I changed my GP.

By 2001 I knew there was something wrong. The vision problem which I started with had become more intense and opticians couldn't find anything wrong with my eyes. I had what I described as a ‘muzzy head' for a few hours every day which was increasing. My new GP did blood tests which proved inconclusive, then put me on diabetic medication which didn't help at all, and then he too decided that I must be depressed and recommended ever-increasing dosages of anti-depressants which seemed to make my symptoms worse. Over the next year or so I was referred to a psychiatrist to sort out my ‘depression'.

In 2003 I had to give up my job as I was starting to feel unstable on my feet and dizzy. I voluntarily gave up my driving licence too as my driving had become quite erratic, according to my passengers. I started to have a couple of falls - not just backwards, but forwards and sidewards too. I also started to lose weight, quite dramatically. I was telling the GP and psychiatrist that my illness was real, but it seemed no-one believed me. My daughter could see that I wasn't getting better so over the next two years we started to find private consultants - to look at my eyes, my heart, my thyroid gland; I even paid a small fortune for balance tests with a consultant who told me that I was showing signs of ‘an illness which was so rare I couldn't possibly have it' - I think now he meant PSP but he didn't say. I put off having a holiday because I felt so unstable and I wanted to wait until I was well. Having a true diagnosis at that time would have helped so I could plan the things I wanted to do before my illness became worse.

After visiting a myriad of private consultants, I saw a neurologist in 2005 and paid for an MRI scan of the brain. I was told that I had a Parkinson's type of disease - oh, and that I had about two to three years to live, yet four years on I'm still here - and given medication for Parkinsons' Disease. The medication didn't work for me, and I assumed the neurologist must be wrong. I continued to get private referrals to all sorts of consultants in the hope of finding a cure, until my GP refused to do any more referral letters. So, I changed GP again.

In 2006 my daughter saw an advertisement for a Parkinsons' Disease Open Day at a local hotel and she took me there. There were patients, carers and a nurse in attendance. I chatted with the patients - though my voice by now was getting very quiet and my speech slurred - and one of them said ‘you're not one of us' which seemed true; they had tremors, I hadn't. I had a quiet voice and overbalanced a lot, they didn't. My daughter spoke to the specialist nurse who was amazed I hadn't been referred by the neurologist to a local specialist nurse, and she arranged for one to call and visit me. The nurse who visited was lovely, she believed me when I said I was ill, it wasn't imaginary. She said I wasn't like her other PD patients, but referred me to a speech & language therapist and also a dietician (by now I'd lost about 5 stone in weight). The speech & language therapist loaned me a lightwriter - like Stephen Hawking uses - though I gave this back when I could no longer focus on the keys. The PD Nurse also organised a referral to Occupational Therapy who have brought me several items over the last few years to help me at home, and I attended a Falls Prevention Clinic.

It was also in 2006 - seven years after my first symptoms - that I decided I had to have some help from Carers. It's a big decision to make, but my daughter saw I could no longer cope on my own. When I went out on my own locally, neighbours brought me home again, they said I didn't seem safe on my feet and couldn't see traffic. The PD nurse brought some leaflets to me one day in late 2006, one was for the PSP Association and the other about MSA (Multiple System Atrophy). She said she thought I had one of these, which although they came under the umbrella of ‘Parkinsons' they were, in fact, separate diseases with different symptoms. That would explain why the Parkinsons' medication didn't work for me. In early 2007 I visited another neurologist privately - as soon as I walked through the door he said ‘you have PSP'. It was a relief to have a name to my condition at long last.

After I got the diagnosis my daughter joined the PSP Association and we got as much information about the disease as we could. At last I could tell social workers and carers what was wrong with me. It makes a big difference because when I told them I had Parkinsons they assumed it could be controlled. Now we know that there are times when I am fine and then times when my health declines suddenly and care needs to be changed quickly. I found that my daughter had to explain PSP and give out printed leaflets about it to most of our carers and professionals at first but many of them did research on it and try to anticipate my needs - I have a wheelchair, for example, which can be altered to suit my needs as my health worsens.

Last year I had lost so much weight that my daughter and the dietician decided I needed a PEG feed. I didn't want it really but accepted that it might make me feel a bit better. It's not rocket science - I get my feed at night and nurses or my daughter put the machine on for me. I can no longer swallow very well so my medication goes into the feed too. It's nothing to be afraid of. I gained two stone in weight after only six months and look much better. I am fed a ‘soft diet' on the days when I'm able to swallow.

It's frustrating being a PSP sufferer. I can't talk now (except oddly when I have a cold !) I can hardly walk. I have had so many falls and broke my arm recently when I tried to do something myself. My eyesight isn't good though I still have the downward gaze which some sufferers lose at the start of the illness. My mind though is the same as it always was, I enjoy watching TV and listening to people chat at my bedside. I love being taken out and looking at shops. I have some lovely carers who have to do everything for me .... that took a bit of getting used to but they respect my dignity and I look forward to seeing them. Like any elderly person I am prone to infections which apparently make me a bit batty for a while but my daughter has taken over the parent role now and ensures that I get the medical and financial care I need. Recently I got NHS Continuing Care funding which means that my care is paid for by the NHS (though it's still a struggle getting extra carer time out of them). The PSP Association have been a big help to my daughter and I with advice on all aspects of care as it is often a fight to get the help I need. My daughter says it's made her into a different person, having to cajole, persuade and beg for even simple things like blood tests.

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