salts team

[Flowersinyouhair]

mum had an appointment with salts team yesterday she was fed different foods and drinks whilst having X-rays to see how she is swallowing. They found every drink and food she has is going into her lungs. The consultant in the room told us she shouldn’t be having anything in her mouth and should really be peg fed but mum has always refused and has it in her respect form that she doesn’t want it. The consultant then says that if mum wishes to have foods that she enjoys then let her as she is at the end of the illness. No real point to this post just needed to say it somewhere xx

[pmcdonough1]

Wishing you and your mum my best during this difficult time. Thank you for reaching out to other's who have been through this journey.

[carehope]

Hello Flowers ...❣️ Am so sad to hear about the latest bad news that your Mom and you are experiencing . I wish that there was a remedy for this development . My sister has had PSP for over 10 years and has required total care for approx 3 yrs. This includes her needing others to fully assist with food and fluid intake. Luckily , she has a good appetite , can still eat softer foods and is able to drink as long as it's slightly thickened. If or when she or PSP changes the nature of the routine , I dread what that will mean . On the other hand , I know that her illness is in the driver's seat. My rational realistic self has been prepared , as I've had years to learn the nature of PSP . However, I don't think that I could ever be dispassionate about it ! I'm trying to accept that I can't change the inevitable and to focus on ensuring that I and others give A. excellent care . Caring and coping well at the same time certainly are the toughest challenges I've had while taking care of my sister. You still have your Mom here and she has you ! Hopefully there are foods that your Mom will still be able to enjoy in the safest consistency given her swallowing issues. My sister made her wishes known from the start , including nixing the alternatives to taking nourishment by mouth. I totally support her decision(s). I think that you and your Mom have been navigating the rocky road of PSP together and you'll be there for her , no matter what happens ! Sending hugs , love , and a cheering squad your way !

Best wishes to your Mom and You! You're definitely not alone !!

Elise

[Sun-flowerwearer]

I think this is an informative post so it has a point ❤️. I was on a zoom call with PSPA carers last night and several people agreed to let them eat all the puddings they love or watch tv non stop if that’s what makes them happy or content. We are the same in that my husband has written down no PEG tube on his advanced plan with GP even though he wheezes and coughs when swallowing. It’s the patients choice and ours is to support their decision xx

[LuisRodicioRodicio]

Hi Flowersinyouhais!

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.

One caregiver wrote: “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).”

On 2021-07, Dr. James Rowe points out: A PEG tube does not exclude eating for pleasure: favourite food and drink can be a continuing source of enjoyment and social engagement, while the PEG handles the bulk nutrition.

A big hug and luck.

Luis

[LuisRodicioRodicio]

Hi again!

Our experience without PEG is like that:

Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)

• Add thickeners (eg, Resource from Nestle, Thick-it, Simply Thick-Easy Mix, CVs,etc.) to drinks (soups, water, Aquarius (*) orange or lemon or similar without gas, etc.) till obtain a sufficient glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest. Some mango and peach juices have an adequate consistency.

(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.

• The food must be moderately doughy and in small pieces, around ½”-3/4” if solid.

• The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).

• Check the patient is sitting fully upright to eat and try not to have distractions around while he is eating.

• Making a puree with a hand blender is always a solution, but it is preferable to crush with a fork until a homogeneous paste without liquid and so as not forget the function of chewing. What is not used is lost!.

David750 point out: “I found with my wife (PSP) the food had to be more and more ultra smooth. Gauging this was difficult- not too runny not too thick. Liquidising food I found I had to be liquidised when hot to get the smoothness required. Any "grittiness" in the food caused choking”

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.

pmcdonough1 suggest:

“My husband had PSP and when he started to aspirate when drinking his doctor prescribed Donepezil 10 mg. After just a few doses his eyes lit up like there was a light turned on in his head. His swallowing improved. After a couple years when he started aspirating again his doctor increased the dose of Donepezil to 20 mg. His speech therapist was amazed at his improvement. In the United States on the NIH website under Progressive Supranuclear Palsy it lists that some PSP patients benefit from up to 20 mg of Donepezil. Let doctor know about the article on the NIH website as a resource.

Zerachiel suggests:

“A quick Google of "minced and moist diet deserts" shows this:

Crème caramel.

Custard / egg custard filling.

Smooth yogurt or fromage frais.

Stewed fruit mashed with custard or cream.

Sponge cake mashed with custard or cream.

Mousse, angel delight, instant whip, blancmange.

Soft tinned or fresh fruit, well mashed with excess juice drained away.

Full document is here:

google.com/url?sa=t&source=...

A bighug and luck.

Luis

[carehope in reply to LuisRodicioRodicio]

Hi Luis ! Thank you SO much for your post that included factors related to PEG choice . Many thanks also for the practical "hands on" guidance to try when attempting to feed people whose dystonia has resulted in a tendency for their heads to be in a downward facing position .

Really helpful for any caregiver dealing with challenges like those that PSP and other neuro conditions present !!

Thank you, Thank you ❣️

Best wishes and be well ,

Elise