The last few weeks has seen more dear husband slip further into the grips of psp. His swallowing, coughing and chewing are all becoming more and more difficult for him. We have the help of a speech therapist, who is very good with my husband. But characteristic of psp, my husband will not/is unable to follow the instructions, even with constant reminders. His palsy gaze has worsened to the point he has little eye movement, so anything he needs to be able to see we raise up to his level of gaze. This has particularly helped with his eating. Not the choking sadly. I could continue with the list, but it is too disheartening.
Last week he fell over the open door of the dishwasher and wrote the dishwasher off. This is just one more item in a whole load of household items that have some from the results of psp!
Sadly, last night he fell just before going to bed and cut his nose and mouth quite badly. Instead of calling for help he decided to get himself up off the floor and upstairs. I found him on the floor of the bedroom having fallen again. Once I had cleaned him up and got him to bed, I then spent the next two hours cleaning the walls, carpets, stairs and the bedroom floor of the resulting mess. It feels very lonely at night when these things happen. Thank goodness it is a beautiful sunny morning and the birds outside are full of song. Life is good and it would be even better if we didn't have psp in this world.
Our daughter is running the London marathon next weekend for the PSPA and for her father, who ran in one of the first London marathons in the 1980's.
May all of you out there continue to have the strength and will to carry on with the battle.
With love Peter3.
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Peter3
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Thank you Jill for your message. Living with someone with PSP is hard, but I can only imagine what it must be like to actually have the condition. Like you, my husband is fully aware of how psp continues its develop. He is quite stoical about everything that happens to him.
In the last few weeks he has started to required my help with all daily activities. The upside is, once on his feet he can still walk quite well.
Hi Peter3. I am so sorry to hear about your husbands decline and fully remember my dad's falls and the clean up afterwards and how hard it can be when you are on your own in the middle of the night particulary.
I send hugs and best wishes to you and your hubby and wish your daughter well in the Marathon. I hope she enjoys the day
reading your blog was like a double take of our family my mum is caring for my stepdad, your views are my mums! psp is horrible the way it takes over the patient and carer in everyway, the only way is forward and to take the positives,..
I know the literature keeps saying everyone's experience is different, but I'm not so convinced. Having met several people, mainly carers, I would say the similarities are astonishing.
Keeping positive is essential and trying to get as much physical and psychological help is so important.
Best wishes to you, your Mum and step dad.
Ps My husband was well enough to watch our daughter do the London Marathon for PSPA. He ran it in 1986, the year before our daughter was born.
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