Hi my husband was diagnosed in August. 2013 with psp he was in hospital. Gravely ill with chest and urine infection. But it seemed to affect

[Kris1983]

His whole body his kidneys sodium levels he is also on drips as he is peeing a lot he has now clear of infection. But sleeping an awful lot does anyone else had this happening grateful for any answers thanks. Kris1983

[JanetCurry]

Hi there. Infections seem to come along with the territory in PSP patients. My lover/friend had psp and periodically had infections for which he needed hospitalization. He responded well to antibiotics, I.V.'s and rest.

[formercarer]

Hi,

My mum slept a great deal during the early stages of PSP. In fact I thought at the time that it might have been Narcolepsy, she could even fall asleep whilst sitting on a dining chair, whilst she was being spoken to. She was diagnosed with Diabetes before PSP which also makes you sleepy. Once I moved in with her and she became properly nourished, stimulated and exercised, her overall health and energy levels improved enormously. I know that sounds like a silly thing to say, what I mean is, her blood sugar levels came under control, her blood pressure returned to normal, and she all but stopped sleeping during the day, leading to better (never great) sleeps at night. We avoided unnecessary interventions such as flu jabs and statins, both of which can have side effects.

Your post doesn't say how long your husband has had PSP I hope his underlying health will improve and that you will be able to go on enjoying the remaining time you have together. Symptoms seem not to remain static with this awful condition. Best wishes.

[jimandsharynp in reply to formercarer]

What effects did Statins have on your mum?

[formercarer in reply to jimandsharynp]

She blamed them for some muscle aches, and said she had more movement in her arm once she stopped taking them. They don't suit everyone. The list of possible side effects is quite long and scary. She did take Madopar (levadopa) with no obvious benefits. We put our faith in good nutrition, Co Q10,appropriate movement and exercise, direct sunshine, and a laugh with friends. All good medicine.

[quickgel]

Hi Kris, I am also a former carer and confirm that the symptoms experienced by those with PSP vary (happily sometimes, if only briefly, for the better). It seemed the best one could do was to keep a weather eye open for any significant changes and get the appropriate treatment, and not to expect a permanent solution. I hope you get the support you will undoubtedly need, I was very lucky in this regard; help is available but it's not always easy to locate or access. Kind regards Jerry.

[SharonAB]

Dear Kris1983,

With what I've heard - infections are quite common and to be expected. I was fore-warned by my husband's GP (& for us that was several years ago now) So my husband always seems to be on antibiotics - There's 'permanent' cuts and grazes on his legs, (circulation?) and a cough that comes and goes ....

Early in the diagnosis we purchased a 'made to measure' recliner for when my husband used to nod off. Then he went through a stage of not sleeping at all, (which then confused everyone...) now?

Regards,

Alana - Western Australia

[jimandsharynp]

Sleeping a lot is what my wife does. She is in bed at about 9:30 pm then sleeps to about 9:30 am the following morning (not up at night even once). She is up from 9:30 am until 1:30 pm when she goes in for a nap. She gets up from her nap at about 4:00 pm and stays up until 9:00 pm when the bedtime procedures begin. So yes, they do sleep a lot with PSP. Fatigue is a major, major part of PSP for my wife. If we do one event of about two hours during the day she is totally fatigued and it could take two days to "recover".

Jimbo