Worried: Hi I haven't posted here before but... - PSP Association

PSP Association
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Worried

Pheobe09
Pheobe09
10 Replies

Hi I haven't posted here before but I need to speak to someone, my dad was diagnosed with psp 5 months ago after an admission to hospital following a fall. He's now in nursing care and is losing weight to the point he's skeletal the staff are doing there best to build him up is this normal for psp sufferers ? Thanks

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Heady

Sorry to hear about your Dad, this does sound very rapid. Has he been misdiagnosed along the way? I take it, that your father is not eating, losing the ability to swallow, is one of the symptoms of this disease. Try getting a Speech Therapist in to see him. They help with the swallowing problems.

Lots of love

Heady

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Pheobe09
Pheobe09
in reply to Heady

Still chasing salt team and dietician honestly they are so slow dad eats fine as long as he's watched he fine just not gaining weight he's on a fortified diet but it's not helping

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NannaB

Hi Pheobe, have you been to see your dad at meal times? It seems very common for PSP sufferers to choke when eating so if he is unable to swallow properly, he will lose weight. My husband can't swallow anything that isn't liquidised or mashed. He even chokes on fruit in yoghurt but has no problem if the food is prepared in a suitable way for him. If he does start choking with liquidized food, he will have a PEG fitted so he can be fed directly into his stomach. My husband spent a short while in a care home near to our son so we could see him and his family. I took my husband out every day, returning him in time for the evening meal. They knew he had to have a soft diet but one evening I returned him early, left for a while and then returned to find him choking, having crammed his mouth with a ham sandwich. In your situation I think I would first find out if he is able to swallow, and what he is being served. I'd speak to the care manager about the possibility of a PEG if he isn't eating. You haven't said if he is able to communicate or not or if he has discussed a PEG. Most PSP sufferers understand everything that is going on so perhaps a meeting with him, you, the care manager and doctor could be arranged to discuss the way forward.

It's horrible seeing a loved one wasting away and I hope there is a way to make him more comfortable.

Best wishes

Nanna B

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jillannf6

HI WELCO,MrE 2 THE SITE[

I HAVE PSP (DXD 2010) AND AM LOSIGN WEIGHT BUT NTO AT AN EXTREME RATE.AND I THINK BECAUSE WHEN I EAT MY FOOD GOES STRAIGHT THRI ME AND DOES NTO GIVE ME THE NUTRITION I NEED

YOU NEED TO DISCUSS IT WITH DC WHO CAN HELP U

A COMMUNITY MATTRON

B YOUR GP

] C YOUR DAD S NEURO

D THE INCONITNENCE TEAM

]ETC ETC

LOL JILL

WHUGS & XX XX TO YOU AND YORU DAD A ND THE RES TOF HTE FAMILY

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Opope

Pheobe

try not to worry

My mum was diagnosed 10 weeks ago after being admitted to hospital with pnuemonia.

First things first your dad needs to be seen by a speech and language therapist SALT team. They will assess what is going on. As the others have said swallowing can become an issue. Our consultant was amazing I disagree with what was said earlier in relation to the next step being a peg fitted into the stomach. It isnt. Our consultant gave us clear choices

1. A nasal feeding tube to build mum up

2. Risk feeding. I.e understanding risks of normal feeding and that mum would be susceptible to ling and chest infections. We opted for this because it is the only pleasure mum now has. The SALT team tried mum on pureed foid and got her used to eating again. Mum has been out if hospital for 3 weeks and is doing well, still coughs and chokes but touch wood no infections

3. Final and no other option have a peg fitted. Susceptible to infection.

Be positive and asks lots of questions.

We are all here to help each other and remember even those in the medical profession have never dealt with PSP.

Good luck

Opope

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jzygirl

If he can drink ok and likes milkshakes try getting him some complan to drink that will start to build him up. There are a load of different ones to have. Even slimfast made with whole milk is quite high in calaries. They started Brian on complan made with whole milk and dried milk powder as well for extra calaries. At lleast it might help stop the weight loss. But I do agree he does need to be seen by dietician (not just for overweight people) as well as the speach and language therapist. Janexx

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Mconnie

My father has never lost weight due to PSP. He does have swallowing issues but we thick it in liquids and puree some foods. Is it possible that the nursing home staff are not taking their time to make sure he eat all his meal . I Know sometimes they are rushed due to being short staff. You could try Ensure drinks to put weight on. Have the nursing home draw labs to see if something else is making him lose weight like cancer. I hate to use that word but you should rule it out.

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easterncedar

I second the idea that your father might be losing weight due to some underlying condition. Our neurologist, physical therapist and GP have stressed to us that we can't blame psp for every problem, that psp doesn't confer immunity from everything else. I hope your father is doing better by now, and wish you and your family well. Easterncedar

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Margaret2015

Hi my mums weight has dropped off her at a rapid rate in the last 8 months , so I don't know if it is usual but it has happened to my mum, she has a very sweet tooth too at the moment, wethers and polos seem to be her favourite xx

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nannygoon

Great advice from nannab ask the care home to get speech and language to assess hi, I did this with my sister she is now on soft diet as she can't swallow very well she also has lost a lot of weight, but managing to eat about a quarter of what she normally ate before we had to liquidise it. Make sure you get help and keep looking and posting on this site they are wonderful people and a great help and comfort.Take care and good luck.

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