After a reasonable night Brian once again was up washed and dressed when the girls arrived. Think they was surprised at the fact that he was eating a big bowl of ice cream for breakfast (it's what he wants) he did have a complan shake with it. Made with whole milk and a banana.
Just wonderd if I should carry on the battle of making him eat dinners or let him eat (and I do mean eat) all the things that he will eat. It does not seem to be a Swollowing or chewing problem because he will eat chocolate bars and breakfast bars. Its more like sweetness.
I would be happier if I could some meat on him as he lost 10kg since the beginning of the year. He is 5ft 7inches and now only weighs 57kg.
Jane xx
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jzygirl
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I haven't posted in quite some time so wanted to say welcome to the site. I think this site is probably the best support network you can find, everyone's genuine concern about fellow sufferers and carers is so heartfelt and the fact that you can be fully honest in your feelings is a breath of fresh air.
My immediate thoughts would be to let Brian eat what he wants at this stage within reason. The sweet tooth thing is quite common, I guess if you're able to combine sweetness with something quite highly calorific to get those pounds back on him that would help. He will need savoury too going forward but if ice cream makes him happy right now, then life for you will also be a bit easier.
In reading other posts, I am sure I have read somewhere that you live in Essex, am I right? I have spent the last week with my parents, my Dad has psp and they live in Wivenhoe. My Dad I reckon is in stage 2, his physical symptoms are relatively small right now, eyelid dropping (currently being treated with botox), speech slurring and frequent choking (he's seen a SLT but refuses to change his diet or consistency of food in any way) and very unsteady on his feet. His cognitive decline has been rapid and currently this is the hardest to manage (for both my parents). He's on Sinemet and is taking Co enzyme Q10 too but frankly I'm not convinced they are helping at all.
Both my parents are in complete denial about his diagnosis. We were lucky that we got the diagnosis after about a year of endless neurologist visits but I know that's quick by many other people's experience. I am trying to manage being prepared for what the future holds without scaring them too much. I live in Reading Berkshire so I'm doing this from afar which makes it more tricky.
I wish you all the best and I'm really glad for you that it seems Brian coming off the Sinemet is proving to be totally the right decision. Take care and keep on the site, love Nicky
Hi didalju thank you for your reply we are very close to your parents we are in St Osyth (small world).
Think I will go along the road of a small dinner and then let him have a large pudding. Think I have been listening to the wrong advice so far. Now we know what we are dealing with I can make some changes ie diet etc. Lets get them kg's back on his body.
i eat chocolate for the benefits for the bowel (inc red some as well)or so i say to anyone and i am losing weight with HTIS PSP
try not to worry about what your husband will eat - if it is sweet things inc ice cream then so be it
there mgiht be a time when his foods have to be pureed and then the fun will have gone form his eating
i eat every meal as if it is my last - i.e. cannot eat slowly at all and shove too much food into my mouth- been the case for the last3 years now so ii am still in stage 2 i think - nbut worse iwth thy incontinence and constipation probes. n-ybut my swallowing is still ok - i have,some THICK ANDEASY but am not using it at all
so it will b ea MOVicol for me today again =- every other day seems to work for me at the moment
Hi Jzygirl, a nutritional it's would probably disagree but when my husband was first diagnosed I let him eat what he wanted. He did like meat and veg but enjoyed puddings much more than he used to. He was diagnosed in 2010. Now all meat has to be liquidised, veg mashed or chopped, drinks thickened and I have to feed him. He has lost a little weight but was 15 stone last time he was able to stand on scales. He is 5' 11". I think encourage your husband to eat meat and veg but let him enjoy anything else he wants. At the hospice on Friday, we were asked to consider him having a PEG fitted while he is still relatively fit. He rarely chokes when at home but does at the hospice. We are going away in September and again in October so they are booking him in between holidays. He will still be able to eat with it in. He loves his food so it will be sad when he can't eat.
There are advantages to being smaller and less weighty; not so heavy to lift when they fall and easier to push in a wheelchair.
Hi jzygirl, I agree with everyone, let him eat what he wants. Just try and be inventive, make your own ice creams, with different things in it. I had avocado ice cream in a nice restaurant recently, it was out of this world! See if you can find some receives with other veg. I know what you mean about a sweet tooth, S, will only eat sweet stuff, if allowed, use to take or leave Sweets before. Put loads of sweeteners in every thing savoury!!!
I'm coming from a biased opinion, of course, but I wouldn't worry about ice cream for breakfast or chocolate for dinner, either.
I bring nutrition and PSP to my Neuro every so often, and he insists proper nutrition does not result in any positive effects with this disease. That was a head-scratcher and not what I expected to hear. But he's consistent on that topic
I've always been on the lean side, so I indulge my sweet-tooth daily to try to gain some pounds that I know I'll eventually lose going forward. And, I simply like it...trying not to overthink so much these days.
Since you'd like him to gain some weight anyway, give him an extra scoop; we have to hang on to our simple pleasures
hi jygirl hows it going ok I hope\\\ well mate I think you should let him have to eat what he wants at this stage like everyone else there on here \\\ there might come a time when he has to have something else which he may not like but that's life I guess take care best of luck to you and yours peter jones queensland Australia psp sufferer
Hi, Here my husband was fixated on Thorntons toffee(other makes available)It comes in large pieces and after I broke it up Des put several bits in his mouth at once!I am trying to convert him to fudge but icecream would be better.I can't believe how much food we waste but every so often he eats a decent first course so I keep providing and baking gets eggs into his diet.To anyone who can still eat crisps,the vegetable crisps have a magical effect for Des,good luck everyone.Phuzz
Hi Madeline loved to eat,proper meals,I am the one who loves sweets for all meals,.! Madeline has been on a feeding tube for almost 3 years ,I would LOVE for her to be able to eat ANYTHING,don,t sweat the small stuff,regards,Rollie
I've been very interested in the responses here. My sweetheart's sweet tooth has also become much more dominant of late. I thought it was a matter of simple comfort-seeking in these anxious times, and have been happy to have an easy way to brighten his day. We have a new wonderful ice cream stand nearby, and a visit there makes us both smile, but he also snacks on cookies and chocolate through the day. So, is there a neurological basis for this sugar craving or is it just a matter of comfort? His weight, although a bit high, remains stable, and he eats a balanced diet, but even if he didn't, I'd indulge him. Life's simple pleasures. Sweet wishes to all, Easterncedar
My approach was to let my dear wife eat whatever she liked. Nothing wrong with ice cream for breakfast or sherbet for dinner (we did that). Their life is short so let them enjoy what they like, do what they like, and experience what they like. Jimbo
It was nice to see him actually eating something and enjoy. We had family visit yesterday and everyone decided to have Chinese for dinner Brian had pinapple fritters and I put some cream on them to give extra calaries never seen a meal dissappear so completely for a long time. So it looks like ice cream for breakfast trifle for lunch and pudding for dinner. I'm happy if he's happy.
When my mom was in a care center, I happened to drop by at meal time and noticed the ladies at her table ate dessert first. Their response was that all their life they had been following rules. There was a short time left, usually too full for desert last. Why not? One of the few things they still had control over and one of the few things they could chuckle over.
I try to get my husband to eat nutritiously, so he can be stronger, but I sometimes wonder why. To prolong the inevitable? I say, "ICE CREAM FOR BREAKFAST!". After all, it's dairy.
Tony's sense of smell was not good, and he always had a sweet tooth anyway, so perhaps it's the blandness of meat and veg that's the problem. The answer would be to spice it up, but that would not be too good for the digestion!
Wifemo we have been down the spice route all to no avail he would pick and push it around the plate and somedays I swear I threw away more then I dished up. But after getting all the info on psp I thought what the heck I will try the sweet stuff as the bland and spicy don't rock his world and with that we got two happy people in this house.. Jane xx
Dear Jzygirl, I agree with everyone else, give him what he wants but maybe if he has a favourite savoury or meat meal like home made chicken broth or something give him that first and then a good helping of his sweet stuff. Would he be open to taking a food supplement in the form of a sweet liquid drink in a cute little bottle using a straw? Forti-Sips is an excellent food supplement and contains all the nutrients that are present in a complete meal. My father used to love them and thought that he was being given extra special care and being made a 'fuss' of. They come in many flavours and in different composition, but I always gave Dad the plain, standard form which was basically like a very creamy milk shake. They are very, very expensive but you could buy just one or two from the chemist to try on him first and then your GP should give you them on prescription. Maybe you could empty the contents of one and freeze it!! I had not thought of that before! It would be a complete meal in an ice-cream.
I definitely agree with others they must eat what they want. My husband has also got more of a sweet tooth and I encourage it. He is 16 st. and has maintained his weight throughout. He is on a PEG but still eats food - his meds are through the PEG. Food has always been his pleasure and as long as he can and wants to, i think that helps keeping him going and not giving up.
My husband passed away from PSP in October & at first he would eat what ever, then went to soft food & of course the thickening in his liquid. He would always choke when eating & drinking - then one day he wasn't feeling real good & didn't want to get out of bed to eat so I fed him partly reclined with a wedge pillow & he didn't choke or cough near as much as sitting up. He no longer would use thickner in his liquids & would eat most of what he wanted in small bites. As long as he was partially reclined he ate so much better. The swallowing therapist said it must have been maybe the gravity pulling the food to the back of his throat might of helped. She really couldn't explain it but I do know we were both very happy to discover that he could eat & drink so much better that way. Has anyone else had this experience?
I think banana, complan with whole milk and ice cream sounds full of calories, the milk and complan will provide a certain amount of vitamins and minerals so I would go for it and not worry. coyle51
I let my husband eat what he wants although often he doesn't know what he wants. We just work on the basis like so many others that he should have what he wants. He has refused a PEG, chokes a great deal and has very delayed swallowing most of the time. Meal times take a very long time, but its worth it for him to enjoy his food.
After the trial with Sinemet which didn't work, my husband had Botox to his arm to see if the pain could be reduced. Five days after the injections he became pain free first time in two years. The high levels of analgesia have been stopped, we keep a supply handy knowing the relief is temporary, but hey, its working at the moment.
The other change is that he is now off all other medication apart from the Movicol. He is slightly less sleepy but nothing else has changed. I think it is better for him not to have so many chemicals going into his body when they are making no improvement.
The last holiday we had was in Malaysia two years ago, in fact I wrote an article for the PSP Association magazine about it.
My husband ended up in hospital with a nasty head injury, fractured skull and requiring 23 stitches to repair the laceration to his forehead the result of a fall in the bedroom. We did manage to have a good holiday but we knew then it would probably be the last one abroad as a family.
Don't let this put others off going away. With good planning and the support of others it is possible.
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