Is lying down a lot during the day normal? It makes me feel better. I have had PSP for 3.5 years and I am 68.

[LyndaEllis]

[jimandsharynp]

My Sharyn takes a nap every day for two to three hours. If she doesn't nap she is very much worse late in the day.

Jimbo

[jams]

hi

i am the same as you , i cannot function without a lie down in the afternoon otherwise i fall over alot through tiredness, are you constantly tired & what have they given to you to combat it they have given to me modafinal which doesnt help muchl

[JudyJ]

My Doctor ordered me to be mildly active only 3 to 4 hours a day when diagnosed 8-12, then rest, including bedrest the rest of the day.

At first I thought it was overkill til I realized that was what I had been essentially doing for a least the preceding year. I simply didn't feel well or have energy.

So I gave myself the permission when he gave me the order. And, yes, it helps me. I feel better. It's my normal now.

On the contrary since I'm only 54, I still get into tough mental battles with myself to 'do more', be 'up more', etc. These battles I have with myself are more damaging than PSP sometimes, I think.

Part of the problem is I have a few primary people by role in my life (not my children) who are in selective denial and have unreasonable expectations of me. Just over the past few weeks, I opted to sever ties with those few. It was a conscious decision after months of explaining over and over again what PSP is and what to expect. It reached the point of unfair and ridiculous. I had to take action. Stung a little, but I'm at peace with it. Decided if there ever was a time to call my own shots in life, this is it. Can't afford the negativity.

So you rest well, knowing it's okay and what you should be doing.

Judy J

[SharonAB]

Do not worry about whether it is normal or not (I gave up on that years ago...) Be more concerned about what helps YOU function and allows you to enjoy what you do when you can do it. If that means having a nap 1,2,3,4, or 5 times during the day do it ! Just make sure that you are comfortable whilst sleeping or resting.

My husband refused to admit he needed to rest - and then would literally crash out in one of the lounge recliners and then wonder why his neck was extra stiff and sore and his glasses were on the floor when he awoke!

Regards,

Alana - Western Australia

N.B. By the way - John's neurologist was the one who persuaded John to sleep during the day on his bed - told him it was perfectly 'normal' for anyone over the age of 50 to want a comfortable 'Nanna nap' each afternoon!

[groovychick]

My dad sleeps for two hours in the afternoon. If he doesn't then he is much more dysfunctional for the rest of the day and you can see he's struggling by the evening.

[Peter3]

Hi Everyone,

My husband sleeps until about midday nearly everyday and usually has an easy afternoon, however, on those days when he has to get up earlier or we are out doing things, he is exhausted by the evening.

His physio has started him on a gym programme. So far we have found that about 20 minutes of exercise tires him out for the remainder of the day. When he is tired he moans a great deal, he says he knows he is moaning but doesn't know why he is doing it. Has anyone else noticed the involuntary moaning accompanying tiredness?

Peter3.