Any ideas to help with sleep ?

[Juey22]

Hi my dad was recently diagnosed with psp after being told everything from vertigo to depression ! We have managed to do quite well getting referrals to speech Therapists etc but one thing he is struggling with is sleep ! My mum is his main carer and is only getting 2-3 hours per night if any some nights . The doctor has prescribed various sleeping tablets which after 2 hours he will wake up and obviously not fully awake and will try to walk and get up to toilet and falls 😢 any advice or tips to help ? He is 62 and been diagnosed since may 2017 . His walking is getting much worse and speech going a lot more quite and rushed . It’s just a horrible disease seeing it happen to someone you love big hugs to u all xxx

[NannaB]

Hi Juey22, I can't help you with the sleep problems as my husband was the same. Nothing helped him sleep for more than an hour at a time a night. What I did do was wrote in a diary I kept just for him, how many times he woke and why ( toilet, hallucinating, just wanted to get up etc). I'm in the UK and had never heard of Continuing Health Care but when it was suggested I apply, I showed all the professionals concerned the diary which confirmed I hadn't slept for more than 3 hours a night for months. CHC was granted and a night nurse provided initially for 4 nights a week within 5 days of it being granted. It was increased to 6 nights for the few months before he died.

Before CHC I did all I could to stop him falling, sensor pads on the floor by the bed to wake me if he got up, noisy things on the bedroom door handle, whatever I could think of as I was so tired, sometimes I didn't wake straight away even though he was next to me. I provided a bottle for him to go in instead of leaving the room but I had to hold it as one night he put it on the floor and aimed.....one of the many I can't do this anymore moments.

It's so hard for your mum and my thoughts and prayers are with you all.

XxxX

[Juey22 in reply to NannaB]

Thanks for the reply I will let me Mum know about the nurse although at the moment she is wanting to do it all herself and of course we are trying to support her and my dad any way we can , I go round daily and sit with my dad while Mum has some time to herself to do things but she will never rest ! They do the bottle at the side of the bed too ! Thanks for your help xx

[Marie_14 in reply to Juey22]

Juey my husband used convenes. They are like a sheath and the urine flows into a bag! You can use them just at night or during the day too. Ask to see the incontinence nurse who will advise. They need to be the correct size and put on correctly but they are brilliant!

Marie x

[Juey22 in reply to Marie_14]

Thank you Marie my brother uses a convene as he is permanently in a wheelchair with freidricks ataxia another awful illness 😢 my dad wasn’t too keen to try one but sure if it meant more sleep he would thanks for your advice xx

[Marie_14 in reply to Juey22]

Juey your poor family are having more than their share of grief? I think your Dad would sleep if he used a convene as he wouldn't have to worry about going to the toilet or hoping he could use the bottle. It saved us so much grief!

Marie x

[Juey22 in reply to Marie_14]

I will try and persuade him , it would help my mum if she at least could get some rest thanks for your kind words xx

[Heady]

I think the lack of sleep is always needing to urinate during the night. Well, that's what caused Steve to wake every 15-30 minutes. It was a case of managing that. First a bottle by the bed, then, me actually helping with the process. Him finally accepting pads, but then we had constant wet beds. Having a Catether fitted finally sorted him out, but it has left me with an enormous sleep problem. Even now, if I can actually fall asleep, it's only for a couple of hours at a time.

All you can do is look after your Mum, make sure she gets plenty of rest during the day. My thought go out to her, it's a very hard time.

Sending big hug and much love.

Lots of love

Anne

[Juey22 in reply to Heady]

Thank you for your reply ! Yeah it’s the need for a wee that seems to be waking him up and once he is awake can’t get back to sleep 😴 they are using a bottle at the side of the bed at the moment . Trying to help out as much as I can especially during the day when kids are at school to give Mum a minute to herself xx

[Heady in reply to Juey22]

Talk to the doctor. There is medication that sometimes works for the urine problem and then the sleeping pills might (!!!) work. I don't know if you saw my recent post about Mindfullness? That might help your Dad go back to sleep, give your Mum a chance to relax as well, although I expect she will sleep through any session. There is no one big thing that helps with PSP, just lots and lots of little things, that help everyone get through the day.

Lots of love

Anne

[Juey22 in reply to Heady]

Aw thank you I will have a look xxx

[easterncedar in reply to Heady]

Me, too, Anne. Still can't get into a habit of sleeping for long myself. Still jumping at sudden noises. Hugs to you, too, Ec

[Heady in reply to easterncedar]

Yeah, know the feeling!

Lots of love

Anne

[Tippyleaf in reply to Heady]

Heady you have just stopped me feeling totally neurotic!!! We have really disturbed nights though better since new CPAP machine and a 3rd waterworks tablet added to list of meds. But my husband is currently staying with brother to give me a break. All family keep saying oh you must be sleeping like a log but I too wake at least every 2 hours and literally ju,p out of bed to check on hubby who currently not at home!! I use mindfulness to help me to get back to sleep and I am certainly getting more sleep but I seem to have a entrenched pattern of waking. Family say just relax and get a good night - if only!!!

Love Tippy

[Heady in reply to Tippyleaf]

Your family are right, you MUST relax! Whether that leads to a good nights sleep, is another matter, but you ain't going to get one, if you are stressed to the eyeballs. I now accept that I will only get a few hours sleep. If I could function on a five minute doze and still look after Steve, then two hours now, is a mega bonus.

Relax and enjoy your respite and accept the constant waking.

Sending big hug and much love

Lots of love

Anne

[doglington in reply to Tippyleaf]

I know what you mean.

I have always been a good sleeper but when Chris was at the stage you describe I was a wreck ! Constant broken sleep is a killer and it took ages to return to a more normal pattern. I remember how I couldn't think clearly so at least you are getting some relief.

Now he sleeps all the time. I put on TV and radio to keep him alert.

love, Jean x

[Juey22 in reply to doglington]

Thanks for replying big hugs to u both xxx

[Kevin_1]

Hi Juey22

We went through this one...

This is from consultations with our Neurologist.

For sleep a long acting Benzodiazapine is very effective. He put Liz on 5 micro grams of Clonazapene to be taken at night. She was really quite sedated the next day. We persevered for a month as people adjust and we hoped the sedation would decrease. It did not. Some people are very sensitive to medication. Especially older people. We then did the next step, under medical supervision, of giving it earlier in the evening so that it would have worn off more by the morning. We found 1800 was an ideal time. She was getting better sleep and by mid afternoon the drowsiness had worn off. Taking it any earlier made her too drowsy before bed and that made washing and changing too difficult.

We then reduced the dose first to a half tablet and then a quarter. That is a quarter of the minimum dose. We found that she still got a decent sleep and was not at all drowsy the next day. This needs to be done carefully BTW. People can develop a dependency with Benzodiazapines and reducing the dose can lead to side effects such as irritability, twitching and agitation. So we monitored her for these with a mind to give her the missing dose if she had these withdrawal effects. She never did.

The Neurologist, who specialises in PSP and CBD told us that people who suffer from these illnesses don't seem to develop a dependency on Benzos'.

Liz is now tolerating a half tablet - that's 2.5micro grams. She sleeps fairly well, better in the second half of the night and is not sedated the next day.

I hope this is not an overfull answer. Its just what worked for us.

It also illustrates the importance of home monitoring and getting back t the GP.

Liz is on Citalopram. One of her early symptoms was mild anxiety and feeling very unsettled. However she shows no sign of this now and we are well on the way to stopping it (titrating it down over four weeks to let her body re-adjust). She is as settled as she was with it. It too was causing drowsiness. All to often people are left on medication when they no longer need it and the numbers and types just keep building.

Hoping this helps

Best

Kevin

[Kevin_1 in reply to Kevin_1]

I've edited the post.

The medication is Clonazapene 5 micro grams.

Apologies

[Juey22 in reply to Kevin_1]

Thanks so much for this Kevin that’s really helpful ! He has just been on zopliclone but could only have them for 2 weeks so not much help 🙄 He sees the neurologist again on the 10th November so will ask then what he can advise as our gp is rubbish ! Thanks again xx

[Kevin_1]

Zopiclone is only a 5 hour half life - too short.

The two weeks limit is to prevent dependency.

Good luck

Best

Kevin

[Juey22 in reply to Kevin_1]

Thanks x

[easterncedar]

Very shallow sleep at night was a big problem for my guy; it wasn't necessarily related to incontinence, just that the damage to his brain meant he was longer able to sustain the sleeping state. He got up and fell many times. I put a removable bed rail up, but that didn't hinder him. We tried many different drugs and regimes. Trazodone did work for about 4 hours a night. If the need to urinate at night is keeping him awake and his prostate isn't enlarged, your mother could catheterize him before he goes to sleep with a single-use removable catheter which might help fully empty his bladder. We tried it, but his prostate got in the way.

The sleeplessness for the carer, too, is very bad. I ended up quite gaga with it, and then often didn't wake up when he got up, so didn't stop him falling. I wish I had some solution for you. I really sympathize with the difficult position you are in. Your parents are lucky to have you.

Peace, ec

[Juey22 in reply to easterncedar]

Thank you for your advice and lovely words xx

[Georgypan]

Hi Juey, I feel for you and your mother because my husband is the same. He is now unable to walk without my support and can't get out of bed unaided so we use a bottle by the bed when he wakes. He was waking every hour to pee and the GP prescribed a medication called Oxybutynin which is for overactive bladder and that helped enormously. Instead of waking every hour and wanting to pee every hour during the day, his bladder started to operate normally. He still didn't sleep for more than two hours at a stretch which meant that I didn't either so he was given sleeping pills. He'd been on them for a couple of years. They got him over to sleep but he only slept 2 hours and then woke up, and we were up and down all night after that. Just lately he decided to stop taking them. It was a struggle but he has finally got off them with no ill effects - but still woke every two hours. I was going through the day like a zombie for lack of sleep.

On to the sleep problem. I read elsewhere on this forum about the effects of CBD oil which is a derivative of hemp but legal. I bought capsules from CBD Brothers. They are the blue edition 100mg. cbdbrothers.com/ I started him on one a day and it seemed to have no effect so I upped the dose gradually until he was on four a day, two in the morning and two before bed. He's been sleeping a lot during the day too so I've reduced the capsules to one in the morning and one before bed. Last night for the first time in many years (he was never a good sleeper) he slept from 9.30pm to 7.00am this morning and even then I had to wake him up. Now, I hesitate to say that it's the CBD oil because it could be the progression of the PSP, but it's only been happening since he started on the CBD oil and it is worth a try. Because he's been sleeping so much I reduced the capsules to one in the morning and one at night, but I'm now going to go down to just the one at night. If it's the CBD oil making him sleep (and I'm not sure it is) then he's sleeping too much. A good night's sleep is what I'm hoping for, not sleeping all the time.

My husband is 77 so at least he had 74 good years of life before this horrible disease. It's a tragedy that your father has been stricken at such a young age and my heart goes out to you and your mother.

[Juey22 in reply to Georgypan]

Thank you for your reply I will look into the CBd oil sounds like it’s helping your Husband along with the bladder tablets . Big hugs to you and your Husband xxx

[Tippyleaf]

Worth checking with the Neurologist ( at Quenn Sq, in London there is a neurologist who specialises in water work probs for prophe with neurological disorders - check if you have similar) There may be imedication that can help these challenging urinary symptoms. my hubby is on Trospium,, mirabegrom and Tamsulosin that last added in recently made a big difference at night time. In addition he has Clonazepam at night which helps him sleep this works mainly 2nd half of the night - he 'scribbles and fidgets" for around 3 hours before he finally goes to sleep.

Hope you can find a few little tricks that will help, as others have said rarely one fix with PSP

Love Tippy

[Juey22 in reply to Tippyleaf]

Thank you for your reply he sees the neurologist on the 10th of November so will speak to Mum about asking about it . Thanks again xx

[AmandaF]

Hallo, Juey,

I think the sleep disturbance - particularly sleep deprivation - it the most troubling and problematic part of PSP. My mother was scarcely able to sleep at all and it caused her huge distress and desperation. No wonder sleep deprivation used as a method of torture.

Also, extreme tiredness worsened her other abilities;; it made speech, mobility, concentration ever harder. Over time, I could see that her baseline skills seemed much worse than they actually were, because she was so tired. When she was rested, she was much more coherent, responsive, agile.

The other impact of sleep deprivation is on the carer, as you rightly say. There were times when my mum and I were equally delirious!

We did try sleeping tablets, but they were not effective. We tried a glass of sherry at bedtime but I'm not sure it was any more successful. In fact, I don't know that there is a treatment for the sleep disturbance that comes with PSP - does your dad have a neurologist? If my mum was still with me, with hindsight I think I would consult the neurologist on this point. Kevin's post below is very interesting.

Also, sometimes my mother would fall into a very deep, unwakeable sleep, perhaps for 12 or 16 hours. During these times she was profoundly asleep and couldn't be wakened even with cold flannels.

Wishing you, your dad and mum all the very best.

Amanda.

[LuisRodicioRodicio]

Dear juey22

PSP is a disease without pharmacological treatment at this moment. The only thing you can do is counteract the symptoms.

In few words these are my experiences on PSP disease hoping they will be useful :

In my opinion, as long as possible, the best place for a patient PSP is their home. This entails the need for assistants to help the main caregiver and to be able to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries with it produces a remarkable wear.

The non-strictly medical parameters that the main caregiver must manage:

1) Avoid falls: transfer techniques, seat belt, wheelchairs, to adapt the bathroom, handrails on each side of the bed, articulated bed, plastic wheelchair (type ETAC) special for hygiene and shower, etc.

She has regularly used a wheelchair since June 2016 (Four years after first symptom) . The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car .

2) Prevent cold and flu (vaccine could be advisable) to avoid pneumonia.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces. Ice cream are well tolerated .

4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles. After that he needs to rest at least 30 '

5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended. .

5) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.

She sleep or sleep about 5-6 hours at night and 2 hours after eating. I think that the gym program and wheelchair rides around the city morning (1h) and afternoon (2-3h) help make to be tired enough to sleep with the help of Lorazepan by night. We suspect that fatigue seems to promote a certain emotional instability.

Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.

Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil in capsules and if the pain is acute Nolotil in glass ampoules. All under medical supervision.

Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.

We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ has been of big help.

One problem is that jobs and occupations of the main caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.

I hope and I wish these notes are useful.

[Juey22 in reply to LuisRodicioRodicio]

Thanks for the reply that’s is certain really helpful thank you so much xx