Ohh that sounds familiar!! We fought for ages and ages and ages to get this walk-in bathroom for Dad. Just keep trying, I'll ask Mum and see if there is any shortcuts you could try!
Do you have aids over the bath? My Dad used to have a seat that he sat on and swiveled round to place him into the bath. Great big ugly things but they worked!
Hi Ray....sorry you seem to be suffering at the moment. Frank doesn't have those problems but might it be worth having a word with your PSP Nurse or your GP. Maybe even your Speech Therapist for any answers. As for sleeping, Hannah's idea may be worth a try & also perhaps a drop of Lavender oil on your pillow or a drink of Camomile tea. Sorry I'm not more help. Take care & keep smiling. Love Hazel B xx
Hi Ray - so sorry you're having trouble sleeping. Perhaps if you try all the other suggestions they may help. You could also try a combination of calcium and magnesium it is supposed to have a calming affect on the body, try one during the day and then one before going to bed, but OF Course, you must check with your gp that it will not have any affects on any other mediciation you are taking first. Another thing that may help is some light music in the bedroom, it does tend to take your mind of other things.
Sorry to hear you are having these problems. Tony often has stomach ache, it comes and goes, not sure if it is his meds. The doctor thought it was his stomach muscles tensing up. As to the weight loss, he has gone from wearing size 36 trousers to 30, not sure how much weight that is! He doesn't want to eat as much as he did a year ago. The speech therapist suggested that he start Fortisips but that gave him a problem, I give half a bottle in the morning and the rest later, seems to work so far.
Tony has the opposite problem with sleeping, he sleeps 2-4 hours during the day then goes to bed at 8.30 until 7am. He does wake up confused and angry even after all the sleep and antidepressants! Sometimes he paces around during the night but it is like he is sleepwalking.
hope your keeping well thanks for takeing the time
to reply i wondered about ulcers my self because
my dad suffered with them when he was alive so im
going to see my gp tomorrow to get checked out you
take care of your self ,
ray xx
Hi Ray
Sorry to have taken so long to answer but I was rather caught up with other things.
My husband never had the stomach problems but he had a lot of trouble sleeping and like yourself woke up regularly at 2.30 am every morning. He seemed to be a lot better with the tv on so I bought him a pair of earphones so that he could have it on all night if he wanted to. Perhaps it was the sound of someone's voice that helped him but it worked quite well. Might be worth a try.
Richard, my husband DID have the stomach problems like you. He lost weight and also had the pain in his stomach after eating. It was explained to us by his previous PSP Nurse that the digestive system - as with every other system in the body - seems to be affected by this blasted PSP. With the stomach it all gets very sluggish and doesn't work as well as it should so food isn't broke down so efficiently. Richard was prescribed liquid Gaviscon after his meals to alleviate the problem and the reflux/indigestion. Gaviscon used to do the trick. Some days he didn't need to take it so his nurses would always ask him first if he needed any.
The weakness in the arms and legs, is all part of PSP as it slowly progresses and sorry Ray, but the disturbed nights seem to be par for the course too. Not an awful lot you can do really although your GP may be able to prescribe something to help you have a more settled night. Anything is worth trying. All that you describe does seem to be a common problem. Having a radio on hand or a tv is a good idea too or even talking books.
Does your GP know much about PSP/CBD I wonder? I am amazed how many medical professionals STILL don't. I asked my husband's new GP when we first went to see him 2 years ago if he knew or had heard of PSP? He admitted he had heard of it although didn't know much about it. I then asked if he would like to receive some information about the illness. He said he would. I contacted The PSP Association and they sent him a load of stuff. He (luckily) was very grateful for it and from then on he became really 'clued up.' Your GP can also contact the PSP Association's nurse for your area, who can give him any help and advice should he need it, on what medications are helpful etc.
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Sleep 
How much sleep?
Up at 2:30
Give me strength!!!
Psp
