Patients with PSP do they have uncontrolled apatite?

[Blueclouds07]

My mother has been diagnosed with PSP since November 2019, she is in an advanced stage now but we have noticed that the she eats she does not get enough its like there is no stopping. Does any one experienced the same situation?? and what do you do?

[messier]

As long as she is not increasing in weight dramatically (unless she was underweight before) then eating a lot isn't a problem. It's possibly because her metabolism is working over time to keep her body going - so eating may well be a good thing! Is she having any difficulty with swallowing or eating yet though?

[Blueclouds07 in reply to messier]

Yes she is having swallowing difficulties and she gets choked from time to time.

[HayleyP90]

Hi, my Dad with CBD is in the same boat, eats anything he sees, to the point where the carers have to hide things. Particularly fruit he is bad for. He has actually lost a lot of weight over the last few months. He’s doubly incontinent, speech is terrible but he is still able to get around fortunately, so not entirely sure which stage he is at...

[Blueclouds07 in reply to HayleyP90]

Yes my mother is having the same problem we are hiding from hear some fruits and other food that would be dangerous to her. I think she is in stage 3

[messier in reply to Blueclouds07]

If she feels the need for fruit perhaps making thickened fruit smoothies available would keep her satisfied?

[Marilyn_cbd12]

Sorry- don't have personal experience of this behavior. I do know that uncontrolled appetite is something often seen in individuals with FTD (frontotemporal degeneration), but you mentioned PSP was the diagnosis. Hope some others can be helpful. Marilyn

[Blueclouds07 in reply to Marilyn_cbd12]

Thank you I appreciate your passing by🥰

[jmorrish]

Yes, my dad was the same. He would stuff food in his mouth as if he was starving. We were advised to portion a meal in to two/three. Give one small portion (preferably cut up into small pieces) then once finished if still hungry serve the next portion or alternatively give more smaller portions throughout the day, although we found that difficult when the Parkinson’s medication has to be taken 4 times a day on an empty stomach. Hope that helps xx

[Blueclouds07 in reply to jmorrish]

Thank you we did the same thing and we are having the same problem. I really feel very sad for them seeing them in this situation.

[wear1947]

My sister has the same problem. She is in a care home since March 2020. I suppose the home care regimen helps her to maintain her weight. I join the messier's criteria. Good luck. Big hug 🤗

[Blueclouds07 in reply to wear1947]

Thank you but can you please tell me what is messier’s criteria.

[messier in reply to Blueclouds07]

My criteria were not to worry if she's not gaining lots of weight that will cause her other health problems. The tricky bit as others have mentioned is if she needs watching while eating to avoid choking problems. Perhaps make easy to swallow things constantly available might help - like low fat yoghurts?

[Hidden]

Yes my OH will go to the fruit bowl and stuff apples and clementines into his pockets as if he was going on a day trip sometimes I make him put them back but often I have not noticed as long as he is safe eating them I leave it, I am usually around, he only usually eats half and throws yes throws the other half across the living room.

[Jkhakh2]

My late husband had the same problem, food became an obsession of sorts. And with the choking hazard and his always stuffing way too much in his mouth at a time I resorted to making him use the old toddler spoon we still had!

[Dickwin]

Bluecloud,

My wife, who has been diagnosed with PSP since July 2017 and showing symptoms since 2014, eats voraciously. She will eat 5 meals a day if I don't try to regulate her. She has been this way for about 2.5 years. We did go through a period a little more than a year ago where she experienced some rapid weight loss even though her appetite had not diminished. After a couple of months and 30 pounds lost, the weight loss ended as quickly as it began. In the last year or so, she has regained the weight she lost and then gained as much as she had lost. I am concerned, but also glad that she still enjoys her meals. My cousin, who is a neurologist and treats Parkinsonism, is of the mind that anything they can enjoy in the latter stages of this disease should be granted. She also assures me that rapid weight loss and difficulty eating is imminent (the choking, coughing and swallowing issues have been ramping up for about a year now) and we will be glad she has the extra weight to lose when it comes. I just want her to be as happy and comfortable as is possible and to know that she is loved.

Hang in there!

Dick

[Blueclouds07 in reply to Dickwin]

Thank you very much