Loss of appetite suddenly with PSP

[skom1]

My mom was diagnosed with CBD (one of the PSP variants). Since then her health was deteriorated and now suddenly she is eating very slow and doesn't look like she has appetite. We had seen issues with her eyes, ptosis, gait problems, walking slow and not interested in talking and incontinence. Now this is new. Is this expected?

[AJK2001]

As with everything with CBD/PSP everything slows down over time, including eating. It also takes energy to eat so can be very tiring. Seeing a Speech & Language Therapist and a Dietician may be useful - they can assess her swallow and advise if the consistency of her diet should be adjusted and also prescribe dietary supplement drinks to keep energy and protein intake up - these are much nicer than they used to be and come in a range of flavours. There are companies that make ready meals which are "enriched" so smaller portions give as much energy as a standard portion or you can add milk powder (for protein) & butter to things yourself. Creamy desserts are also good for giving calories.

[Hidden]

My mom had PSP and she found eating frustrating. Using silverware was difficult and mom did not want help. Her sister visited at lunch and helped mom clean her plate. My aunt took her time feeding mom and chatted during the very slow process. For some reason mom was not embarrassed when her sister helped. Personally l think mom would have eaten better in her room but the nursing home did not permit it. Everyone is different so a bit of trial & error helped all of us to find solutions. Sending hugs... Granni B

[LuisRodicioRodicio]

Hi skom1!

These are our experiences and those that we have been collecting from other PSP patient caregivers in this chat about the problem;

"In advanced stages of the disease, feeding the patient is a big problem. The patient is so bent forward and cannot tip his head back or move it, so feeding is now very difficult.Our solution (which often works but sometimes does not) is as follows:

1) With the fiber-free part of the head of an electric toothbrush, we massage the outside of the jaw and the inside of the mouth to stimulate the muscles that open the mouth. Also, before feeding the patient, give a circular finger massage for 1 minute just at the top of the jaw and under the ears, she can move her jaw better.

2) Place a big napkin under the chin.

3) With the caregiver's left hand, the head is raised and with the right hand the spoon is inserted into the mouth and it is removed empty.

4) The head returns to the position where the chin is close to the chest (in this position it is easier to swallow) so that patient can swallow better.

5) Steps 3 and 4 are repeated as many times as necessary.

6) When feeding with a small spoon is very slow and difficult, we have used a 60 ml syringe, introducing the pureed food between the teeth and the cheek in small doses (10 ml each time).

It is normal for the napkin to get very dirty.

Note.- On the advanced phase in which we are, the patient tends to be frequently drowsy. If he is very sleepy it is useless to feed him. It is preferable that you take something the patient like very much (An ice cream for instance) to entertain the stomach and not force feed. This happens especially at dinner and in the morning our patient eat breakfast very well (generally the easiest and fastest meal of the day). Lunch is usually quite acceptable too.

• We have not experience, but seems having a PEG fitted does not make the problem go away totally, as he can still choke on saliva.

“Hi Caya” wrote:

“If the PEG tube is appropriate it depends on the patient:

If the patient has a good quality of life, which means they can walk, watch TV, go to the mall, read the news, to friends etc and suddenly lose the ability to eat and drink then could be OK..

But if the PSP is already advanced and they are fast failing, then it's not recommended since it's just prolonging their misery

Please to search for "peg tube" on PSPA fórum or others for other people's opinions

My dad had one and i would never recommend it for a late stage patient (it wouldn't make their PSP better or improve their cognition etc).”

[LuisRodicioRodicio]

Hi again!Another problem can be an episode of discouragement or depression.

Since the confirmation of the diagnosis, every morning our patient took a pill of "Sertraline 50" to compensate and prevent the mentioned episodes.

Always consult with the physician.

Hug and luck.

Luis