PSP Association
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stomach trouble

hi every body,

I wrote a blog a little while back about weight loss as i had lost

a stone and a half in just five weeks and since then i have been

getting a lot of stomach trouble and i was wondering weather

any cbd/psp suffers have had the same problem, Every time

i have something to eat or drink i get bad stomach ache which

lasts for at least a hour then it fades away untill i eat or drink

some thing else and now i dont seem to have any strength in

my arms and legs and i cant seem to get a good nights sleep

i go to bed about 12 0 clock and im wide awake again about

3 30 and im up haveing a cup of tea and cant get back to sleep

any more, Im not sure weather all of these problems are

connected but any information you can give me i will be




19 Replies

Sorry to hear about your stomach trouble & sleep deprivation! That sucks!

My Dad doesn't have any of these problems I'm afraid.

On the sleeping front, have you tried any oils to aid your sleep? Maybe a bath with camomile oil before bed, if you are able to take a bath?

Sorry I'm not much help.

Prayers for you xx


hi hannah,

hope your keeping well thanks for takeing the time to reply

i will try the oils thank you it might work, yes i can still have a bath with the help of my wife i cant get in or out on my own, we have

been haveing a battle with social services for over three years

now to get a shower installed but you might as well bang

your head against a brick wall you take care of your self

and thank you xx


No problem :-)

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 hannah,

we cant fit a seat over the bath as the lip

round the top of the bath is not wide enough

to hold one the local council fitter a new kitchen

and bathroom last christmas and they told as we

could have a shower fitted over the bath so they

tiled the bathroom walls from top to bottom then

they said they couldnt install the shower because

of health and saftey they said i might fall out the

window while takeing a shower lol, i would be very

greatfull if you could find out if theres any shortcuts

we could try thank you we cant have anything to big

as the bathroom is quite small,



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 hazel,

hope your keeping well and thanks for the info i

have got an appointment with my gp tomorrow

so hopefully i will find out more then,i will also try

to see the parkingsons nurse next week and next

thursday i have a psp support meeting to go to in

norwich so i might get some answers then, i will always

keep smileing cbd wont beat me not yet any way thanks

for takeing the time to reply look after yourself

luv ray 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.

good luick and take care.



hi dorothy,

hope your keeping well thanks for the info

i will check with my gp tomorrow, i have got

some relaxation cds that my holistic therapist

gave me so i might try those and see if it makes

a difference thanks for takeing the time to reply

take care



Hi Ray

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.

Take care and I hope you are feeling better soon



hi lorraine,

hope your both keeping well thanks for the info

i get stomach ache every time i eat or drink then

it goes away untill i eat or drink again, the trouble

with gps they put everything down to the disease

but its not always the case i have dropped three sizes

in trousers in the last few weeks i still eat well but i dont

have such big plate fulls because i eat a lot slower so

the time i get through it its cold, im glad to hear tony

is getting plenty of sleep because theres nothing

worse than being tired all the time i must admit it dose

make me grummpy some times, i dont take antidepressants

at the moment i try to stay as positive as i can with the help

of a holistic therapist i have to see my gp tomorrow so i

hope to get some answers then thanks for takeing the

time to reply ,

take care



Ray - sorry about your problems, are you sure there re no ulcers that could b causing the troubles. Hoping it all eases off for you



hi kay,

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.




hi lina,

hope your keping well and thanks for takeing the time to

reply i will have to get a telly for my bedroom and give it

a go i always fall a sleep in front of the tv when i watch

it down stairs so it might work up stairs, you take care

of your selfs



Hello Ray

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.

Let us know how you get on.



hi maggie

hope your keeping well thanks for the information im very

greatfull for it ive got cbd but its much the same as psp i got

it four years ago at the age of 49 but im copeing pretty well

at the moment,My gp is quite clued up on cbd/psp but he is the

only one at our surgery that is and he retires in a couple of weeks

so i shell be back to square one i have got to see him tomorrow

afternoon so fingers crossed, i do have a very good parkingsons

nurse so thats very helpfull, i throught the sleepless nights were

part of the disease thanks for confirming it, I was getting hydro

therapy to help with the stiff legs and arms but due to nhs cut backs

they have stoped that now i also have holistic therapy which helps,

Thanks for careing and you take care,



hi ray

i too am having trouble not sleepign and am hoping to go back on toa low dose of seroquel when i see the gp romorrow

(i used to take it with an anti depressant unitl i changed the anti depressant and used to go off to sleep much better (and saty asleep)

i am v agitated and restless mulch of the day time, and night itme if i am awake

r u restless and agitated??

there ae lots of meds 4 anxiety when a warm

bath p/herbal tea will nto do the trick

love jill


hi jill,

hope your keeping well ive got to see my gp in about

a hours time so i will hopefuly get some answers, i dont

take antidepressants i just have my holistic threarpy to

help me through any bad times i am very restless at night

time i just cant get comfie in bad and when i do get off i only

get a few hours then im wide awake well jill thanks for the info

and you take care,

luv ray


hi jill,

hope your keeping well im not bad at the moment

apart from still not sleeping i went to the doctors

the other day about my stomach problums he said

he thinks its acid in the stomach but hes not sure

so next week he wonts me to go in to hospital and

have a camera put down my throat which im not

looking forward to take care,

luv ray xx


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