Losing Weight

[Folliott]

Jim has lost 10 lbs in the last few weeks. He is down to 140 now which his best weight is 170 and his top weight was 190 a year ago. Not sure what to do as eating exhausts him and sometimes he just quits and sometimes sleeps right through meals. I wake him when I can but sometimes when this tired he does not finish. I supplement with boost smoothies but doesn't seem to be enough. Chopped diet at this time. Guess a Dr's appointment is necessary. He doesn't see the neurologist till June but don't have a lot of confidence in him doing anything at this time. Any advice would be helpful as this seems to be a new problem. Exhaustion seems to be his biggest enemy at this time.

[Hidden]

What meds is he taking?

[Folliott in reply to Hidden]

Warfarin only.

[Heady in reply to Folliott]

Hi, S is on Warfarin as well. Great fun isn't it? The ideal pill for someone with PSP!!! Most people we meet, are trying to get him off it, but the doctor says no! Although I expect he is getting fed up with all the letters, different professionals keep writing! Had a beautiful black arm a few weeks ago, just a minor knock on his elbow, but arm swelled up to at least twice the normal size!!? I'm sure this causes a lot of S's tiredness, constantly short of blood. This week, it's his bum that is black and blue!!!

Lots of love

Heady

[jzygirl]

I had the same thing with Brian and the dietician got us complan and a thing called pro cal shot. I had to make the complan up useing whole milk and add milk powder (marvel) and then add the pro cal shot. She also said you can cream or icecream to the shake. It took about 4/5 months for him to go from 52kg up to 67kg.

have you tried liquidising his meat and veg. The less they have to do to get the nourishment the better it is.

hope this helps. Janexx

[Hidden in reply to jzygirl]

Milk shakes, sauces, etc will certainly help. Small high calorie desserts are good too. Just use full fat milk, cream and butter wherever you can. It's calories in a small package and may help. If savoury is his thing anion sauce made by sweating onions until soft with just double cream and lots of seasoning makes a quick and easier sauce. If the onions are soft and chopped finely he should be ok with them or strain just to keep the flavour.

[NannaB]

Like Jane, can I also suggest liquidising anything that won't mash to a pulp. Preparing meals takes quite a while but I find it worth it to see my husband clear his plate each time. I use a potato ricer for veg, keeping them separate on the plate so he can taste the different flavours, and a liquidizer for all meat. I use gravy or sauce to make the consistency of thick soup and usually liquidize mushrooms with it as well. If feeding takes a long time the food gets cold which isn't very appetising so I usually heat it for a moment in the microwave when he has eaten half and give him more gravy if the potato has gone a bit dry.

Bon appetite!

[cabbagecottage in reply to NannaB]

I am going to buy a Ricer tomorrow , thanks for the lovely ideas Nanna .

the Carers told me this morning that I should write a book of tips . I learned a new one from them this morning , If you have hiccups put a spot of vinegar on or hand and lick it ! Another is to hold your one arm up straight for a while .

anything worth a try .

Will let you know if it does work or John gets hiccups .

maybe u could make up a book of recipes ,, When u can find the time lol .

[NannaB in reply to cabbagecottage]

Never heard of those hiccup tips. I'll try them next time. X

[jzygirl in reply to NannaB]

Try saying purple when you have hiccups. Janexx

[Heady in reply to NannaB]

Hi NannaB, what's a potato ricer and what does it do?

Lots of love

Heady

[NannaB]

It looks a bit like a large garlic press. The veg go in the bowl that has a plate with holes in it. You then push the two arms together and out comes "worms" of veg. Quicker and smoother than mashing but more bits to wash up than a hand masher or fork.

X

[Amilazy]

Hi Margaret had a similar issue in Jan And Feb this year when eating became a fight took over a hour to get her to eat a small meal, mainly due to fighting the choking and coughing. M lost over 28lb in 2 months. I got a dietician to see her and After weighing M immediately got the hospital to put in a Nasal gastric tube to start liquid feeds. Though unsightly meant M no longer had to fight to get nutrition swallowing became easier and her weight stabilised. The NGT was replaced a month later by a RIG/ PEG. More work for me but M is a lot better. Dietician not happy I had let M weight fall so much but I had not noticed as more concerned with choking, hey said problem with weight loss and tiredness could lead to more aspiration of food to lungs which could lead to more dangerous issues.

Good luck Tim

[GillJan]

As well a smoothies, you can get build up soups in packets from good pharmacists. Maybe worth a chat with your pharmacist at your local chemist, they can be an excellent source of advice and help and mine has got me various flavours of build ups, which is helping hubby, he lost 2.5 stones in 8 mths, so now weigh him each week and feed high calorie foods. If his energy is so low they may be able to advice on supplements.

[Kelly55]

Sorry to hear Jim is losing weight and struggling with his food. Our speech and language therapist and Parkinson's nurse both keep mentioning mum getting a PEG inserted. I'm mentioning it to the neurologist next visit. This will be to supplement her diet so she only has to eat foods she really enjoys and all her tablets can be administered that way also.

Although I was surprised they mentioned PEG, mum has had PSP for around four years we think but still has healthy appetite, she can be quite slow to eat and has choking fits but is very resistant to me blending her food and insists on sweet treats despite being diabetic. So her weight is stable (if not increasing!) as I give rather large portions and she has lots of smoothies etc too. But they still think mum needs a PEG so I'm surprised this has not been suggested to you, although it is up to the sufferer whether they wish to use one or not... Mum has said she does want one eventually

[chacha1]

Just posted another reply re peg fitting.. please read up about it all from the PSP Association and speak them or your PSP nurse specialist or a peg nurse in your local hospital about it. My Dad was too exhausted to eat and drink for 6 weeks and lost 2 stone very quickly just because he had a cold.. He's now going to have a peg which will just help to top him up when he needs it and in readiness as his swallow is deteriorating (even if he doesn't need it for a few months it will be there in case). The worst thing when Dad wasn't eating was having to nag him constantly when the last thing he felt like doing was taking in any fuel. He didn't take kindly to being told to eat but was seriously getting dehydrated and malnourished and weaker by the day. He's stronger now.. ready and willing to have the surgery for the peg (all going well the appointment to assess suitability is next week). Once you have all the facts then you can decide next steps and decide what's right for you and Jim. Don't leave the peg decision too late though.. we should have done it last year to take away the 'chore' of eating (just sometimes as Dad still enjoys his food).. Good luck!

[laila123]

i bought a bullet i ook the mash make the mince bullit it let jhon drinck macke it like a syrep with the resorse taste just the same and my jhon has gained wait i do it with all his food hope this helps

[Tz2388]

Been on a diuretic, Furosimide, for many years. All of a sudden, no longer needed. Got terribly dehydrated and lost fifteen pounds in a month. Sooo, there can be lots of different reasons, good to check with the doc.