Hi, until now the only thing I have posted has had stamps. Birds tweet and I have never photographed my dinner . So, this is a first, as is PSP. My wife, Bugs, has had problems of double vision, falls, choking/swallowing for over 5 years and about 18 months ago her speech became more mumbled/quiet. This was about the same time as she was finally referred from the eye hospital to a neurologist. Various tests, assumed conditions ruled out and finally a DaT scan indicated PSP. This was finally confirmed by the Parkinson's Nurse specialist. I had been researching before this and had feared that this could be PSP so the actual diagnosis did not come as too much of a shock. I was in touch with the PSPA early on and got a lot of useful information, including a booklet for the GP who hadn't much of a clue. Following the diagnosis a lot was put in place with physio, SaLT,OT and latterly the local hospice Palliative care Team. I also negotiated the path to claiming AA and then Carers. We even got a Blue Badge. Plain sailing.
I then came across this forum and I find it hard to read a lot of the posts without tears. I am so angry at my own stupidity. No one has said anything about the way this illness progresses. I read the info. about pneumonia being the most common end but there is nothing much said about the stages between now and then. I am much wiser now so thank you all who have shared. The most annoying thing is that I had asked about the progression of this and Advanced Care planning but was fobbed off as it was to soon and Bugs would probably not take it in. So if not now, when can such a discussion take place as her understanding is reducing very quickly. I thought the whole idea was that the patient made choices.
As to where we are I don't know. The nurse said they measure Parkinsons on a scale 1-5 and comparatively, Bugs is about 3. How can progression be judged?
At the moment, Bugs walks with a stick but has frequent falls. She does not do much apart from sit in a chair and watch endless re-runs of flog It. She has stopped communicating much -very abrupt most of the time and exhibits very obsessive behaviour. The swallowing/choking is quite bad but mainly on saliva and is worse at night. The throat clearing can be heard out in the garden. I have to sort her clothes otherwise the same things are worn time after time and as for asking her not to do things which are inevitably going to end up with breakages/burns/ water over the kitchen floor - well I may as well talk to the cat.
I guess I am not really asking anything specific like many of the other thing I have read, just making myself known and maybe someone will have some advice. Thanks for reading.