Sleep

[Althea-c]

My Barry has had PSP for approx 5 years.

The past 2 years he was sleeping an average of 17 hours per day. The past few months he is sleeping 20 hours per day.

What is your opinion on this ???

Althea 💛🙏

[doglington]

Chris is the same. I sometimes think he would sleep 24 hours if I just left him. Some of it is dozing and some deep sleep.

xx

[Althea-c in reply to doglington]

Is he getting any exercise ? Are his muscles still strong. ? Is he walking at all ? Is he eating and going to the loo. Please excuse all the questions. I am trying to draw a comparison .

💛🙏

[doglington in reply to Althea-c]

At present in hospital - no - and that worries me.

Prior to infection he could walk around with me supporting and encouraging him - to strengthen his muscles. Eating well - although now pureed. Using loo but wearing convene when we go out.

xx

[Althea-c in reply to doglington]

Thanks for your reply. So we just go on going on ..... 🙏💛

[Steve666 in reply to doglington]

Please excuse my ignorance but what is a convene?? Thanks

[doglington in reply to Steve666]

its a like a condom with a tube to contain urine in a bag. An external catheter.

Continence nurse will sort it.

x

[Althea-c in reply to doglington]

💛🙏

[Althea-c in reply to doglington]

Thanks for your reply 💛🙏

[Yvonneandgeorge]

George only gets exercise when they come in once a week and he has some exercise done. He can't walk, he would sleep all day, but we make sure he is up showered and dressed every day, don't let him go back to bed, until bedtime, he will sleep in his chair, but is awake more now, with the new routine. It's hard but it works for him. Yvonne x.

[Althea-c in reply to Yvonneandgeorge]

Thanks for your reply Yvonne. I will try to keep Barry up as much as possible. His bed has become his security. 💛🙏

[Yvonneandgeorge in reply to Althea-c]

George was the same but it really works getting them up. X

[Althea-c in reply to Yvonneandgeorge]

💛🙏

[Julieandrog]

Same here, x

[Althea-c in reply to Julieandrog]

💛🙏

[VronB]

John gets up everyday but goes back to bed for 2 or 3 hours in the afternoon. Not sure if he sleeps all the time but it is a break from the constant dizziness. He now has a convene so not up and down so much when there was a risk of falling. X

[Althea-c in reply to VronB]

Thanks for your reply. How long has John had PSP ? 💛🙏

[VronB in reply to Althea-c]

From first symptoms getting on for 9 years. Like most people I can't work out how long he might have. He is coughing and choking a lot more and food is cut very small. I have a horrible feeling he might be getting bowel incontinent. We've just got him a convene which helps a lot. Xx

[Althea-c in reply to VronB]

Thanks for your reply. I will be ready for the next step of this dreadful PSP.

We took Barry for a lovely outing to hang our lock on a well known fence. We have been meaning to do it for years. He was lucid and spoke about how much he hates what's happening to him. Right now I feel like jumping off a building.😪😪😪😪😪

[VronB in reply to Althea-c]

Hang on in here. He needs you. I constantly feel I can't cope but we all do! Wine helps I find! Xx

[Althea-c in reply to VronB]

Same here. 🍷🍷🍷🍷✨🌟⚡️💫🌙💥

[Cuttercat in reply to VronB]

Yes, coughing and choking are constants. We try to keep Charles in chair after eating for 30 min.

Cuttercat

[Althea-c in reply to Cuttercat]

Wishing you strength 💛🙏

[am2015]

I wish I had an answer as to what is going on and and what's next. My mum used to sleep about the same as your husband, but the last 2 weeks she is sleeping nearly 24hrs. She is given bed baths everyday, diapers changed and a charge of clothes and she is still drowsy. We no longer take her in her wheelchair as she hasn't got the ability to sit anymore and it would not be comfortable. God knows what's round the corner. Just awful, no words can sum up how bad it is.

[Althea-c]

Dear am2015, please send me your name. My heart shattered reading your reply. We can only pray that God is with us as we turn the next corner. Althea 💛🙏

[am2015 in reply to Althea-c]

Hi Althea, My mum was diagnosed in December 2015, but we think she is probably in year 6-7. Mum was eating in a restaurant 3 weeks ago.

I'm so sorry, I really didn't mean to upset you, it doesn't mean that your husband will progress in the same way everyone is different, we were taken by surprise.

Belief in God is the only thing that keeps us going.

Afshan

[Althea-c in reply to am2015]

Dear Afshan, yes! Every PSP sufferer is different. I just felt so heart sore for you. To God be the glory. 💛🙏

[Baytalon]

Althea, I can see my husband sleeping more. He takes a nap every afternoon for 2 hours, but then he's up to almost midnight. Of course, I nap with him and I don't have PSP, so I'm not sure his naps are all PSP related.

[Althea-c in reply to Baytalon]

Enjoy your naps. You need them 💛🙏

[ju1962]

I have stopped Mick going to bed in the afternoon. I let him dose in the chair. reason he was not sleeping properly would get up late in he morning go back in the afternoon up then back at 8 for bed. All this time he would have me running round after him I was lucky if i got 3 hrs sleep a day. Now up washed dressed by 10 back to bed at 8. I am now getting 6-7 hrs sleep a night.

[Althea-c in reply to ju1962]

Good for you. We can't operate as carers without sleep. PSP is very demanding and drains our resources both physically and emotionally .

Althea 💛🙏

[enzo501]

Althea,

What meds is he ingesting....My wife is about 5-7 yrs into this horrible disease , she can still walk (barely) with my help ...We try not to use chair or walkers (except when in airports.)Many of the Meds that calm pulsating arms and legs , and relieve anxiety, put the victim to sleep which makes atrophy a faster process. My wife sleeps about 10 hrs a day (always at night )....not a napper but sits in a reclining chair and watches TV ..her vision is so bad she cant read any more ...The eye exam and very expensive glasses were only good for about a month then changes in vision made that obsolete ...even the Kindle on large print is a struggle . As a result of our fight to have quality of life over quantity we throw alot of drugs away that we try that have adverse effects to her . To me sleeping more than 10-12 hrs a day is adverse ...it deteriorates the muscles and weakens the victim . Speech and choking will be the next major hurdle ...I wish you luck and peace with what you do ....jeff

[F4rn12ley]

My Mum has PSP and sleeps 12 hours at night and 3 hours in afternoons. She would sleep for much longer if she wasn't woken up. She is in advanced stages diagnosed nearly three years ago t showing symptoms for up to four years before. Part of the disease everything slowly packing up