brandysuki

[brandysuki]

With my wife’s PSP progression she can now hardly stand or walk but also now often has vomit coming up into her mouth, is this a further sign of progression of the disease? I am pleased to let you know with my previous post we have now been provided with a re-turner similar to a Sara steady which we are finding a great help!! Thanks to everyone who advised. X

[Soltmany]

how often she open bowels?

[brandysuki in reply to Soltmany]

Daily no problem there.x

[Kelmisty]

Is it something she’s recently swallowed? As my Mum regularly coughs after eating a brings up a little bit of food but it isn’t a lot of food.

[brandysuki in reply to Kelmisty]

Thanks we are now monitoring it.

[Marazion]

Sorry to read this and yes in our experience for mum regarding her swallowing. I don’t know what food and fluids your wife is on but with mum we moved her to pureed and thickened fluids (unable to feed herself and no PEG) due to the risk of aspiration chest infections. Last summer she had multiple aspiration chest infections due to her difficulties swallowing food. These were managed by changing her diet and also ensuring her carers fed her little and often, only when she was able to , ensuring she was sat at the right angle etc and she started loosing weight which is something to look out for. Assume you have Speech and language involved as they advised on diet changes from what foods to withdraw from her diet to changes through to puréed eventually. So hard to watch the changes and mum loved her food. We had to respect her decision (at the time of diagnosis when she had capacity) not to have a PEG.

[brandysuki in reply to Marazion]

My wife is ok with most foods (not spicy) as long as it’s only small pieces. Her drinking she has thickener in them ,in fact we have had to reduce the thickener which has made a difference. District nurse comes each Monday so will ask her . Thanks x

[Bertieandpiper]

Hi

If you haven’t already, ask for your GP to visit to review your wife and ask for an urgent referral to the community speech and language therapist and dietician.

Best wishes

[brandysuki in reply to Bertieandpiper]

Thank you for your support, we are in contact with the SALT team but not had dietitian for some time, will ring them x

[Troubleandstrife]

My husband had a PEG tube in his final year of living with PSP. When he began having regular reflux, which caused violent consistent coughing, he was checked into a hospice for a temporary respite/symptom management stay. The doctors there halved the quantity of liquid nutrition I had been giving him because, given the atrophy of his muscles and the advancement of the disease, his body could not handle that amount of calories. At first I was shocked and resisted the idea of letting him lose weight, but then I realized it was the best advice we had received so far. I have no idea if this is relative at all to your wife, but it was a blessing in disguise to accept that decline is inevitable and hoping to hold on to our loved ones with food isn't always the most compassionate action. This was excruciating for me, his wife, but seeing how much more comfortable he became with less food made me realize that comfort was the only priority left.

[brandysuki in reply to Troubleandstrife]

Thanks for your reply re my wife’s reflux. At the moment it is not troubling her too much but I will keep your advice in mind. My wife has refused a peg. X