The first few years after being diagnosed with PSP my hubby gained weight - binging on cakes, biscuits, desserts etc a complete contest to his previous food choices. I was carefully managing his weight but now we are on the other side of weight management!!
He has lost 10kg in 6 months - have managed to slow it down in last month to 1 kg loss by adding cream and butter to food, adding high cal milk shakes and lots of small high cal snacks. He gets very tired feeding himself but hates being fed!! This last two weeks he holds food in his mouth neither chewing or swallowing. Meals are always supervised as he crams so much food I to his mouth he chokes otherwise but now I am having to remind him to chew and swallow. Diet is soft but not pureed e.g fish pie, lasagna, pasta bake, moussaka, trifles, tiramisu etc all fluids thickened, or thick smoothies etc all with cream added.
In hindsight I see this downturn started around the same time of increased sleep disturbance which has now improved a little bit still huge challenge.
My husband has made it very clear he does not want a peg
Any suggestions for maintaining weight and encouraging swallowing appreciated - what am I missing - ideas please???
Thanks
Tippy xxx
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Tippyleaf
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Unfortunately Archie was the same his weight went from 20st to 11st in 4 years the dietician put him on fresubin yogurts
His eating went from knife and fork then desert spoon and last tea spoon
He did end up on a peg he didn’t like it but he said yes to it so his weight was maintained through the dietician he had
My suggestion maybe would be extra yogurt with high calories and his swallowing to keep at him about it or just move his plate till he does (the air was blue when I did that ) Tippy you are not missing anything it all goes with this crap illness
Tippy George was exactly the same, he didn’t want a peg neither. Lots of butter cream in mashed potatoes, high calorie desserts, Georges use to eat really fast then that changed, to eating slowly, he use to let us feed him in the end, I think he got very tired, maybe also frightened of choking on his food. Hope you are ok, thinking of you. Yvonne xxxxx
Sorry Kate replying / reading out of sync - I am prob getting off lightly so far with the Shingles - 5 days of pain I couldn’t work out and then the spots as soon as they appeared straight to GP for antivirals which I hope will nip it in the bud - just very tired and a bit sore ! Bit of a fraud really!!!!
Thanks Ananda - from feedback it looks as though this is another stage but you worry you are doing something wrong!! Will ask for nutritional review. I am so pleased that I had booked a 2 night live in carer at the weekend and plan to sleep for 72 hours then!! That should sort the Shingles out !! My New Years resolution of booking 2 nights respite per month is vindicated!!!
Looking at Parkinson's research the weight loss is caused by changes in the brain which means the food is eaten and digested, but not utilised enough. I'm not sure, but I don't think this has been researched in PSP/CBD yet.
Increasing calories does help.
Liz is currently taking high calorie drinks. Ensure etc. They have slowed the weight loss considerably.
Had a great visit yesterday. Holding hands, we watched a slide show from her photo archive. Played some Irish Celtic music and I left her listening to her audiobook. She is rallying pretty well. The swelling of her lip is diminishing... Her sister is coming down to see her today. I guess I need to make some biscuits.
Hi. If the food intake is broadly the same then agree with Kevin . However if it’s reduced, which was in my moms case , that will lead to weight loss. Do check if it’s muscle loss happening since that would lead to more complications eventually including lack of limb control or movement . So stepping up the proteins could be evaluated.
Hi Tippy, sounds as if you are doing everything you can do. I would ask for a dietician to come and see your husband, they can prescribe some high energy drinks and yoghurts. Steve lived on Muller Rice Puddings for ages, with added cream. I know how you feel about reminding him to chew and swallow, use to drive me insane! But unfortunately, very necessary.
Shingles??? OMG, having just looked after my sister with it. That is NOT fun. You MUST get more help. It is your body's way of saying enough! Please, please listen to it. Two days respite will barely touch the surface, you need a good week. Are you getting CHC yet? If so, demand more help today!!! Tell them about the Shingles, get your GP to shout for you as well. Tippy, this is serious, there can be no being brave, or worrying about your husbands feelings about others caring for him. It's either he accepts part time help, or he will have to go into a nursing home, because you will not be in a fit state to cope. FULL STOP! Sorry if this sounds harsh, but we all know that coping with your loved one with PSP, there is no room for any weakness. Help and lots of rest is the only way forward. You will not be letting him down. Quite the opposite, if you want to carry on caring for him and not be in some hospital bed yourself.
Take care Tippy. Sending lots of love and much love.
I know you are right but you would have been proud of me planted myself in GP surgery until seen knowing it was Shingles - would never have done that one before!! I am prepping for first CHC review making sure I have evidence for an increase in hours & I know I really do need regular respite. But you are right need to crack on now - just need an energy boost!!!!
Surely Tippy, you need to show the toll it's taking on you as well as proving that hubby needs more care time. Phone the CHC asking for more respite and help now, especially as you have shingles. (Tears help!) That is one quick way to prove that he still needs CHC. Get to know your Manager, I knew all the ones I dealt with, quite well. So did my daughter!!! It certainly helped. Never had any problems when review time came up.
Well done for standing up to the receptionists at the GP surgery!
Hi Tippyleaf, sounds like my Mum s at a similar stage, she has lost over 2 stone over 6 months. Please ask for a referral to a dietician that understands these type of conditions. Mum was referred to one who knew nothing about Mum or PSP, said her weight had just gone from being overweight (cuddly in my book) to normal and not to worry. I explained about PSP and she said she didn't "normally see people with Mum's type of problems" the community team did and she was meant to do a referral and never did. After waiting 6 weeks and no appointment came through, got back to Mum's GP and ended up with a visit from the Community Team just before Christmas (so another 3 months lost). They have prescribed Altrashot (energy in small doses) and Altraplan (energy & protein). the flavours are really good, especially the chocolate hazelnut Altraplen - it's like liquid Nutella ! The Community team have been really good following up and Mum's weight loss has slowed and her energy level and engagement has improved.
Unfortunately this is the path of PSP. Charles was on purées diet for a year. He loved my food. Please get a little food processor right away. Don’t risk choking. They shove too much food in.
Ice cream was his staple and kept the weight on. Milk shakes as well.
He ate up until the last day.
We had no peg either. So go to the store and experiment. I’ve got loads of ideas if you want them. Alas I can’t share them here.
Tippy - You, Anne and I seem to be in the same boat. We are trying everything to get food into my husband. Even his favorite, mashed potatoes and gravy just sit in his mouth. Yesterday Jello worked because it just sort of slips down his throat. I guess something's better than nothing!
Tippy- I hear you. My husband has always been a little more motivated to swallow sweets too. Lately though, he's refused chocolate and other favorites. When that started happening, I started to believe that he really can't swallow at times. Now it seems like that's the case a lot of the time. I guess he'll eventually just stop swallowing completely just like so many other things. This is so hard to watch as it happens.
Ben went from eating really well albeit puréed in the last few months of his life. His appetite declined at the end but he never wanted a PEG fitted. The physiology said they loose weight because the body uses so many calories due to muscles being constantly contracted, made sense to me!
Doctors prescribed ProSource for T when he was hospitalised for pneumonia! It liquid form - syrup consistency, so it is easy to swallow.
Dietician also recommended dairy rich diet BUT unfortunately dairy aggravates his cough and seem to increase phlegm build up on his throat . So looking at soya or almond base creams and milk!
I hope you’ll find the right Balance and no you’re not missing anything!
Hi Tippy. We are in a similar situation with the weight loss, soft diet and having to watch every bite that W takes. He tries to cram so much into his mouth and it takes a long time to get food from plate to mouth. Tonight however, he handed me the spoon to feed him and I just thought this is the next stage for us. Like you I'm continuing to watch his weight, and give him his favourite meals and calorie loaded treats. It's a hard journey and we are giving it our best shot, we can't do more than that. Sending you love and best wishes xx
Thank you Nanny 857 there seems to be a few of us caring for partners at a similar stage - thank goodness for this site!!! At least we are not alone as we strive for the very best and learn from those who have walked this same path.
Hi there, your hubby sounds like my brother, going into his 9yr with psp, his weight was 182 when it was diagnosed now he is 110, also have to remind him to chew and swallow his food is very soft, loves pudding, ice cream, but at times he can’t even swallow that sounds like you are doing like me with his food, unfortunately a big part of psp, hang in there Tippy, such a dreaded disease. Nettie
Hi Tippy, it is taking me about an hour to feed John at lunchtime and he just holds the food in his mouth. He cannot seem to eat meat any more. He us also losing weight and a lot if the time he cannot open his mouth to get the food in. A couple of times lately I have made him a panda cotta which he likes and is easy to eat. John is moving from care home to nursing home ithis week and the new home are talking about protein shakes. Like Heady said two nights is not enough. That is what I used to do about every three months and looking back you need more. Have a few days and go and visit your son which will give you a boost. Hope you are feeling a bit better. Pauline xx
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PSP Nightmare 
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