Speech and Language team in the UK

[Derek1uk]

Just an update on my wife (Jackie, diagnosed since 29th Jan 23) and her PSP path, she had a visit from the Speech and Language therapy team yesterday and it's not good. She's struggling with food, she'd said that food wasn't going down. So they tried her with a sandwich and she couldn't clear it after eating, so they suggested she turns her head to the left and has a drink and if not cleared turn to the right and repeat. Now this helped but Jackie keeps having this cough and it's like she's clearing her throat, it's happened during the night and TBH it's scary.So they've put her on a NO bread (unless it's in soups and then it's softer) No Red meat and only very soft white meat (small cut up pieces) diet. No Chips, No Takeaways, No Crisps.

I'm just wondering should I buy a Smothie maker? I've seen them but not gone for one yet, I'm thinking this would help with Fruits and stuff.

This path is taking another turn and it's downhill all the way for sure, it's also SOOOOOO frustrating because we STILL haven't got our report from the Neurologist due to GAPS in the report he did on the 29th Jan, so we can't get help financially (for help from Hospice or so I can become her home carer as I work full time).

This is a mess

[Lord77]

Hi Derek I am so sorry that this has happened my husband Brian was diagnosed with psp 6 years ago but symptoms since 2013, I bought a nutrabuillet to make smoothies this way I know he is having his veg and fruit as he does not like them anymore I put fruit and veg , honey , almond or oat milk unsweetened and probiotic yoghurt the honey is to sweeten it as with psp they really like sweet things. I hope this helps regards Pamela

[Zerachiel]

Hi, A nutribullet or stick blender will become a must over time. It is worth bearing in mind that it is not just the swallow but maneuvering the food with the tongue that can become an issue; getting the food under the teeth to chew or from the front to back of the mouth to swallow.

As it takes so much effort to eat it is worth considering fortifying foods to get more from food eg. add 4 tablespoons of milk powder to a pint of whole milk to make drinks, readybrek etc.

Start weighing her weekly and counting calories for my wife about 1900 calories a day keeps her weight stable.

Consider a feeding tube, if she is still mobile and has a reasonable quality of life this will allow her to eat for pleasure while she can without the need to eat to sustain herself. Have a read here healthunlocked.com/psp/post...