PSP - swallowing questions

[PSPPsP]

Hello...my partner has had PSP for about six years and is having more problems with swallowing. I am interested in connecting with people who are familiar with this and have had swallowing assessments done and/or considered using a feeding tube (PEG).

[Marie_14]

Most of the people on this site have had to address this issue. Either themselves or as carers. It is very important to have a swallowing assessment done. So I would certainly advise it if it hasn't already been done.

As for having a PEG that is something for the person going through all of this to decide I think. Some people have it done others don't. However it is something that needs to be discussed before a crisis.

Have you got Power of Autorney? If not get it! Otherwise when your partner can't speak how will you be able to ensure their wishes are carried out?

Welcome to the site. People are very supportive. It has helped me more than words can explain. If you search for swallowing issues you will find old posts where people have discussed this.

Do get that swallowing test arranged however. You will also get advise from the SALT team about exercises to try to keep the voice as long as possible.

Marie x

[doglington]

There are many replies about the pro's and cons of having a PEG

There is support for both options.

Are you at the puried stage ?

[Hidden]

My husband also has difficulty in swallowing,he takes glycopýrrolate 1.20 mils every 4 hour's. He has declined having a peg and all other interventions.We go over his decisions every few months.Others will chime in and you also can go to the more tab ( (upper right conner)and do a search.my husband was diagnosed in 2013 but showed signs of PSP in 2009.

Dee in BC

[raincitygirl in reply to Hidden]

How is he doing now Dee? Was thinking about you the other day....

Anne G.

[Hidden in reply to raincitygirl]

He seems to be on a plateau right now,still coughing and choking.one day at a time , but it's tough waiting for the next shoe to drop.

How is your husband?

[raincitygirl in reply to Hidden]

Compared to most on this site, not bad! He can eat, coughs and aspirates usually only at night, and can still stand and walk a little. However, he's starting to fall at home more and it's really hard for him to get up. (We've done physio on "get up techniques") He's down to 1-2 word speech and very garbled. Cognitive decline is slow but continuous....

Thanks for asking. How 'bout that snow? yuck.

[Sayer]

PSPpsp

My wife suffered from PSP and based on our experience the following may be of help. Before having PEG fitted, which is a simple operation and definitely prolonged Pat's life by several years, ask your GP forMultiThick or similar. This is mixed in drinks giving it a thicker consistency, making swallowing easier I suggest starting by asking your GP because one can buy such thickeners but it is available on the NHS as a prescription and every little helps. Ask also for a visit by a district nurse/speech therapist/physio. I think the DS visits (can't remember) first and arranges the other visits. These experts will asses the situation and advise.

[formercarer]

You and i can swallow at will. Our loved ones with PSP have to wait for their involuntary swallow reflex. i remember that in the weeks before my mum had her PEG fitted, it would take about 3 hours to complete a simple meal, necessitating several re-heats. I would give her a spoonful of pureed food, and distract her with chat until I saw that she had swallowed. Swallowing was not possible if she consciously tried to swallow. The more she "tried" to swallow (or blink- same issue) the less able she would be.

Don't leave that PEG decision too late. it didn't work for us, but I know that it has worked well for some. they have found it leads to weight gain, and several more years together. Good luck.

[AliBee1]

Hi

I endorse everything that Marie_14 has said especialy the Speech and Language assessment. They will be able to give you the advice needed. My husband does not like the thickeners so at present we are managing with milk shakes and yougurt drinks. We were also advised to mash his food and use thick gravy, sauce,custard or yogurt with it as they coat the food. They also said not to give icecream as it changes consistency in the mouth and not to use a straw as it takes fluid too far back into the mouth.

Good luck

Ali B

[johns65]

We have had good luck with my husbands PEG tube. He probably would not be here today if he did not have it. He is currently residing in our local nursing home since November of 2017 where he getting excellent care. By Oct. of 2017, he had lost over 55 pounds and we knew we had to do something or he would have starved to death. I suggest you get your paperwork (power of attorney, etc.) done as soon as possible as communication ability declines. Wishing you a better day today than yesterday. Joyce

[anjelihazari]

My husband is in his 6th year since onset.

While the peg does need a lot of care and has to be dressed and sterilized on a regular basis, it has helped to a great extent to keep my husband adequately hydrated (1800 ml per day).

We give him crushed medicines along with vegetable and fruit juices, coconut water etc. through the peg, and pureed food through the mouth.

This combination takes care of his nutrition requirements.

I would greatly recommend the peg, provided you can manage the maintenance of it.

[Benny22lovesus]

My husband didn't want the peg at first.He soon realized there was no way to take his meds..He had a mic- key placed in November. The second day he told me it was the first time in months he didn't feel thirsty. He still eats some soft foods , but it does take a long while.We are lucky he was a military veteran, they pay for his supplements and supplies. I feel better knowing he is getting the amount of water and supplements he needs.He is actually quite active , just can't talk or swallow.

[abilitydesigns]

My mom has been fitted with PEG since 28Nov 2017. Without PEG she'd not have survived.

Her food-related choking incidents have significantly dropped. However, her choking on her saliva has been gradually increasing

Like the other person in this thread, I would greatly recommend the peg, provided you can manage the maintenance of it.