Still feed my husband normally they say before it is an medical emergency anyone else had this thank you for your support
Hi my husband has has psp for about 2years... - PSP Association
Hi my husband has has psp for about 2years his foods and fluids are thickened doesn't have any choking so far doc wants to put peg in can I
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Kris1983
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6 Replies
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My husband also has liquids thickened and food liquidised and mashed and sometimes chokes but neither of us feel he is ready for a PEG yet. He loves his food and I think it will be a major step to take that away from him. I don't know the exact situation but I would put off having a PEG until there is absolutely no other way to give nutrition.
Nanna B
Deciding whether to have a PEG fitted is a very personal decision and there is information available form the PSP Association.
My Mother was offered a PEG when she started to need thicken liquids and softer foods but delayed until her swallow was almost lost. With hindsight I can see why they offer it early as the procedure is easier and the PEG has more time to heal before being used. Unfortunately she had complications and infection to deal with for a while.
Although the line needs to be maintained, having the PEG doesn't mean that you can't still take food and drink orally while you are able to, it just ensures that when getting sufficient nutrition safely becomes an issue there is a plan B.
The decision has to be yours and only you will know when the time is right for you both.
It is a big step to take having a peg fitted, my husband managed without one although it took a long time to feed him and to make sure he had plenty of fluid but in my opinion it was worth it , my GPs attitude was that it is all about quality of life. I am all in favour of keeping one step ahead I suggest you both follow your instincts, who,knows your husband may never need a PEG. The PSP has good advice on the subject and I think they say it is YOUR choice. Best wishes.
Kris, There is an excellent video on PEG feeding on the web. It explores the process of installation and use after installation. I liked it because they gave both the Pro and Con of having a PEG. This, in my opinion, is a decision that requires a lot of thought. My wife and I had the discussion early in the disease and she didn't want a PEG or any artificial means used on her. My SIL was aid to a lady with PSP who had a PEG but couldn't talk, see well, no mobility and trapped inside her body but kept alive via a PEG. You will read other Pro and Con stories as well. Make the decision your loved one would want which might not be what you and the family want. I believe they indicated you could still take food by mouth after the install but check out this video.
curepsp.adobeconnect.com/_a...
If that doesn't work go to the CurePSP.org site, click on "conferences and events" then click on "Webinars" then scroll down the "Past Webinar" list looking for PEG. Let me know if that doesn't work and I'll send you another way.
I read Jims earlier post regarding the suggestion of watching this video, and found it very helpful indeed. Its definitely worth listening to as it explains the options and the mechanics of it all so well. Better to make an educated decision than a decision based on what we think we know.
My dad was offered the peg and refused.and he enjoyed thickened food for months after,it was the only enjoyment he had left.it was left until it was a struggle to swallow,he had the peg fitted 6 weeks before he passed away.x
