PSP Association

weight loss

hi every body,

has anybody thats got cbd/psp had sudden episodes of

weight loss ,i seem to be eating like a horse but in the

last three weeks ive lost over a stone and a half in weight

and my face seems to be getting thinner, i just wondered if

this is this part of the path that this disease takes i have been

uping my daily exercise routine but not to the extrime that i should

loose that much weight any advice i would be greatfull thanks,

ray

13 Replies
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Hi Ray.

Marion has p.s.p.and Dementia and early last year lost a stone in weight in a month, which was a worry, spoke with Marion's specialist, who was not sure if losing weight was either dementia or the p.s.p. But suggested Marion try Sustagen supplement, I give Marion a glass of milk with 3 scoop's of sustagen in the morning with breakfast, and same again at teatime, and Marion's weight has stabilised at 9 stone for the last 10 month's, Hope this bit of info is helpful to you.

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hi mazbri,

hope your keeping well thanks for the info

its nice to know theres answers out there,

take care

ray

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h8i Ray

hope ypu r well?

i lost nearly a sttne in weight prior to diagnosis and now eat what i want when i want and have not lost any more

i origiinallly thought it was cos i had changed anti depressants but npw think it is the psp

i has come off miy face which has gone a lot thininer and round my stomach area - the latter good!

it has not worried me a lot as i needed 2 lose a few pounds ..

love jill

ps i cannot exercise like i used 2 gym/.swim/..aqua aerobics but the weight has not gone back on

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pps

Ray

sorry i have not checked the reply above fully 4 typing errors!

2 early in the day

local psp meeting today!

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hi jillann,

hope your keeping well thanks for the info i hope

you psp meeting goes well for you today,

take care

ray

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Dear Ray,

I have PSP and was down to seven and a half stone, having lost two stone, which is probably a stone less than I am comfortable with. My speech therapist and dietician wanted me to get a PEG but, rightly or wrongly, this is something I have been against doing. Recently my son and daughter- in- law moved in.....they are vegetarian. Jenn (my daughter- in-law) has been doing the cooking and the food is delicious. It takes me a long time to eat, and I cough and splutter my way through, but I am eating more now than I have ever eaten before. She also does a lot of baking which I am enjoying. I am also drinking up to two 'Ensure' drinks a day at the moment. The good news is that I have actually put on a bit of weight and am generally feeling a lot more well. It doesn't sound like your issue is that you are not eating enough food, but maybe some 'Ensure' drinks could help? They have lots of calories, in addition to all the vitamins and minerals. They also taste good! I keep being told lately the importance of being well hydrated. Are you drinking plenty of good quality water? If not, maybe that might be something you could look at,

Take care of yourself.

Sue.

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hi sue,

thanks for the info i hope your keeping well it sounds

like you are which is good im eating quite well at the moment

i do drink a lot of tea which i know is not good for you but i dont

drink all that much water because its so bland my holistic therapist

keeps telling me to drink more water i can drink it when its nice and

cold, my brother had ensure drinks when he was ill he said they

where realy good and tastey so i might give them a go, i might even

try some bottle water and see what thats like,

take care of yourself,

ray

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Hi ray, there are some lovely flavoured waters on the market, in any supermarket, that don't have added sugar. It's what I coax my husband with in an attempt to get him to drink more and he loves them.

Take care

SheilaN

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hi sheilan,

hope your both keeping well thanks for the

info on flavoured waters i will deffently look

in to getting some,

take care,

ray

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Hi Ray

My dad ate like a horse but was constantly losing weight. Before he moved in the Nursing Home the Manager there mentioned to us and I don't know if this is right or wrong that people with PSP have quite a high metabolism and that although people may eat really well and be hungry all the time they could still lose weight. They had the dietician in and they added other things into his diet such as lots of cream in his porridge etc and he did start to put some weight back. I don't know if this is the same for CBD. Hope this helps

Take Care

Lesley

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hi lesley,

nice to here from you hope your keeping well thanks

very much for the info i am being referred to the psp/cbd

clinic at addenbrooks hospital in cambridge for a good

check over so i hope to see a dietician there in the mean

time i will try the cream thanks,

take care

ray

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hi Ray

your referral wil l be worth it at addenbrookes - good dluck with that - and hope u r ok- let us knpow how u go on plz

i feel i am eating what i want when i want and am not putting on any weight

love jill

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hi jillm

hope your keeping well just to keep you up to date

i have got my appointment at last for the psp/cbd

clinic at addenbrookes its for the 19 september so

not long now take care,

ray

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