Smoothies

[Marie_14]

This may seem a bit odd but two weeks ago I started to buy Smoothies for my hubby. He was struggling to drink even with the beaker which restricts the amount he can swallow. However once he had a Smoothie he guzzled it down!

Then I noticed he didn't always have it. Sometimes he had water flavoured with blackcurrant. The odd thing was he was able to drink it without choking.

Today I spoke to the manager at the home and she commented on it too! She said it was like the Smoothies had helped him with his swallow when it came to water. Is this just one of those blips that give you hope only for it to be lost again?

He has also started to put some weight on and to my amazement was doing exercises with his hands and arms today! Has anyone else experienced anything like this?

Marie x

[PSPwife]

My husband hasn't progressed to choking regularly but his appetite has been terrible. Smoothies are the one thing I can get him to finish. You can add protein powder too.

Maybe the weight gain and exercises are worth getting your hopes up.

[Marie_14 in reply to PSPwife]

Well trying not to as this is Progressive? Think we might be getting a couple (or hopefully more) good weeks? Thought the way the Smoothies helped might be of use to someone else? I would never have thought it would lead to an improvement in his drinking of water which he struggled with for ages now.

Marie_14 x

[easterncedar]

There have been recently a few stories here of symptoms reversing without apparent reason, a patient recovering, temporarily, the ability to walk or talk or eat, quite out if the blue. The brain is complicated! My unprofessional two cents: I'd say you can use this reprieve, as you are, to get him some more weight and exercise, and hope this is a plateau he can stay on for a while. Let us know how it goes, please. Good luck! Easterncedar

[abirke]

A good smoothie can be filled with nutrients that help the body do what ist's supposed to. And If i'm not mistaken, even the water may be thickedned for a more full bodied flavor....the smoothies are thick the water may be thick and the swallowing responds happily....plus they taste good

AVB

[Marie_14 in reply to abirke]

AVB

The water is definitely not thick. That's what I find so odd. He has been choking on water and tea and refusing to use thickener as he hates it with a passion. So bought some Smoothies. Didn't give him much water at first. Then I noticed he was drinking blackcurrant water. Just ordinary water with Ribena or something in it. Really weird.

You will note Heady I bought them! Have never made one either although I have a machine to do that! Never been used, like half the things in the kitchen!

So I don't understand it but it's nice while it lasts.

Marie_14

[peterjones]

the smoothies are thicker to drink like a milk shake mate that is why he can drink them with no choking mate I know I am already past that stage psp bloke peter jones q.l.d. australia

[Marie_14 in reply to peterjones]

Peter

Yes but he's now able to drink water again? Enjoying it while we can!

Peter which part of Australia do you live in?

Marie_14

[peterjones in reply to Marie_14]

..the best part Brisbane Qeensland marie

[Marie_14 in reply to peterjones]

Peter

Good to know where you are! Will take it from you it-s the best part! ☺

Marie x

[peterjones in reply to Marie_14]

hi marie hows it going good I hope mate I have a lady bindi coming over to see me on the 2nd of dec we spoke very briefly on the telephone she has psp as well mate she sounds very nice. I am looking forward to it Bindi is the first person I will have seen with psp like most people on here I had never heard of until it decided that was the place to make its home in my body

now tell me why its so good to know whereabouts I am

am I far enough away from you or not far enough its ok mate I have a funny sense of humour for a nearly 81 year old mate take care and best wishes to you and yours peter jones Q .l.d.Australia gods own country

[Marie_14 in reply to peterjones]

Peterr

I think it's nice to know where people are. Then I can imagine us all and which part of the globe we occupy.. It makes you realise how this disease gets around? It also means I can ask you about Brisbane for example?

I read somewhere that in Guam they have a distinctive kind of PSP not found anywhere else. That will be of interest to researchers I am sure? If it helps with more information that's really great.

Nice that Bindi can get to see you by the way. It must be very difficult in such a large country to even get to hear of someone else with PSP. That's why this site is great.

Good luck to you Peter.

Marie

[peterjones in reply to Marie_14]

HI MARIE HOWS IT GOING MATEY OK I HOPE THANKS FOR YOUR MAIL MATE ONE BOSS I HAD WANTED ME TO GO AND DO A JOB IN GUAM JUST AS WELL I DID NOT G O THERE I WOULD HAVE SAID I GOT MINE FROM GUAM MATE. THIS IS A DAM NUISENSE IT EFFECTS EVERY PART OF YOUR LIFE ###### M,Y DAUGHTRERT HAS JUST POPPED IN FOR A CUPPA AND IS JUST VACUUM THE CAR SHE IS A GREAT KID AND DOES A LOT FOR US ##### BY THE WAY I HAVE TWO BOYS AS WELL THE OLDEST IS 58 THEY ALL PHONE IN EVERY DAY WITHOUT FAIL AND THEY ALL DO WHAT THEY CAN FOR US I AM TRULY BLESSED WITH A GOOD FAMILY WELL MATE THATS IT FOR NOW SO SEE YER

TAKE CARE BEST WISHES TO YOU AND YOURS

AND JUST BEFORE I GO I THOUGHT I WASS THE ONLY PERSON WITH PSP IN AUSTRALIA WITH IT UNTIL IK LOOKED IT UP APPARENTLY THERFE IS ABOUT 1300 TO 1500 PEOPLE HERE AFFECTED BY PSP SO WE ARE A SMALL BIT OF IT PER POPULATION WHICH HAS GROWN OVER THE LAST FEW YEARS TO OFF MY HAT ABOUT 24 MILLION NOW THATS WHY NOBODY LIKES TO DO RESEARCH BECAUSE IT WOULD NOT PAY THEM BACK FOR QUITE A NUMBER OF YEARS WELL THATS JUST MY OWN PRIVATE THOUGHTS.

.

[Marie_14 in reply to peterjones]

Peter

You would have thought you had somehow got it in Guam! However although it's PSP it's a kind unique to Guam. They are looking into it to see why it only occurs there. If they get the answer perhaps it will lead to more understanding about what causes it? Even the kind that everyone else in the world gets? We can only say a prayer or two even if it's too late for people on this site?

Had a sad day today. Hubby was crying because he said he will never see home again. He is probably right. He wanted paper so he could write to me. Goodness knows how as his writing has all but gone. What he wanted to say I have no idea. Maybe begging me to take him home or telling me I have let him down?

He has been sad and crying all day. So it has made me feel the same way. I know he is not happy about being in the Care Home for Xmas. We will all go to visit him and open our presents together but he will have his Xmas dinner there and then we will go off to somewhere to eat our dinner.

I couldn't care less about it all but my daughter wants to go somewhere to eat. I know how I will feel and would have preferred to go to her home or my son's but I wasn't given the choice! That seems to be my life recently.

PSP hapoens to both people in a relationship? I know I will never be the same again. I hate my life every bit as much as my husband hates his! The only difference is physically I am not effected by it. I hate it with a passion though.

My handsome husband doesn't deserve any of this. Neither do the husbands, wives,mothers,father's,sisters,brothers of all the people on this site, and all those suffering but unaware there is a site of great people who will help them along the way.

Best wishes to you Peter.

Marie

[abirke in reply to peterjones]

Peter, I hope you have a wonderful visit with your new found friend. Please tell her about us kids , she may like us lil' rogues.

Love ya,

AVB

[showaddy]

Steve always has 2 smoothies a day which helps enormously as they are nice tasting and slip down easily. I take him two a day and he loves them (any more and his urine colours and becomes smelly). A carer told me to only let him have 2 due to this. Just a cautionary note. I also note that he chokes on his lunch but not his pudding. Don't ask me why but he loves his sponge and custard, mind you doesn't everyone!!

Pauline xx

[Heady]

I have never made a smoothie, but S is struggling now with yoghurts, I mix his medication in with it. Also, last night couldn't eat his pureed dinner, but scoffed his rice pudding down straight away. I can see his diet very soon, will be made up of rice puddings. The only fluid he drinks is strawberry milkshake. Doesn't like the ones the dietician has given him, only Nesquik will do. I do occassionally get orange juice into him. I think he likes the feeling of ice cold food/liquid, whether it's easier to swallow. Refuses point blank to eat food when it's hot.

This morning I am going to risk mixing his meds into a bit of rice pudding. Didn't want to go down this route, as he has to have something he enjoys. But equally, I have to get his laxitives into him, I don't care about the rest, only the steroid which he should be weaned off slowly.

Why does everything have to be soooooo complicated???.??.

LOts of love

Heady

[Amilazy]

Enjoy the reprieve from the choking and I hope his swallow function remains.

Best wishes Tim

[Marie_14 in reply to Amilazy]

Thanks Tim so do I. I would like him to have a good Christmas but who knows with this thing?

How are you and M? Hope everything is stable at least.

Met two women from Anglesey when I went into town last week. They told me they were going to come by train but it would have cost £28 so they decided to drive! Think that was return but it's expensive for a day out? They were both shocked. I now talk to anyone that looks nice! Get fed up talking to myself!

Marie_14

[pzagy]

have you tried liquid thickners?? They are available in most pharmacies. I find the powder is best, you add a little to a drink or soup, it doesnt change the flavour it just makes if easier to swallow.