My sister has PSP she is losing weight because she is not eating enough. Swallowing problems so I think they are going to insert a feeding tube. I am going to see here. I live in San Diego and she lives in Rhode Island. It's been 2 years because of Covid.
Now the have a patient that tested positive in there upstairs portion on the Hospital. They are testing everybody to see if they are clear. I don't know if we can see or get her out for the day. The feeding tube has not been put in yet. Is this a sign she is going to pass soon? I can't even talk on the phone with her. I can talk but I can't understand anything she says. So sad it's hard to watch. I send letters with big print.
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Outrigger
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Hi, the feeding tube will give her a better quality of life but only if she wishes to have it as it will also probably prolong her life. My husband has it and it’s easy to maintain and his weight is kept level. It was his choice to have it at the time.
I really feel for you, Outrigger. It is so difficult when communication pretty much stops. My husband has just, last week, had a tube fitted and we are settling into the practicalities of it. It is something he wanted - he lost a huge amount of weight very quickly because his mouth wouldn't open to receive food, or he would choke, or if he could eat it was only a few spoonsful. He has lost over 3 stone since his diagnosis in March 20. I'm hoping once he has put on a bit of weight he will have the strength to stand and maybe take a few steps again. I think he is now in the later stages of the disease, but of course with the tube fitted the likelihood of respirational pneumonia is less, although he does seem to choke on his own saliva or it causes him to stop breathing. Who knows!!I wish you all the best, I would hate it if I was in the same position with my sister. I hope the procedure goes well for her.
My husband has a feeding tube which has now come into it's own. He eats less now and the food he does eat is pureed (I buy this already prepared). We use a pump which can administer water at various rates per hour eg 150mls per hour and Jevety Liquid food which is high in calories overnight which I can set at a lower rate. He has an adjustable bed so that he is in a more upright position so that it doesn't come up to his throat and starts to choke. As for excessive saliva we use Atropine Eye drops. They are not fully trialled but are accepted as a way to reduce saliva. I give my husband a few drops under his tongue. We found these far better than the patches which knocked him out for more than a day and left his skin in a mess.
I do feel for you, how difficult not have been able to see her in all that time. Can you video call her so at least you can see her? Communication can be so difficult even face to face. I know Mum used to get very frustrated when I didn't understand her. Hope you can get to see her. xxx
My only comment is that please review the quality of life issue with the insertion of a feeding tube. Prolonging a "life" for a few months for someone who can not talk or walk and sleeps 21+ hours a day seems to be a bit cruel (only my opinion).
I feel for your sister. My husband was diagnosed with PSP September last year. His swallowing is getting bad everyday. So far he has been okay eating and swallowing his food. He has issue with swallowing fluids. He was okay using straw for tea, coffee, water and juice. For the last few days he is having problem swallowing even when he uses straw. He holds fluid in the mouth and then it all comes out. He also had issues with tablets and capsules. Now we have got dispersible Madopar and dispersible Paracetamol. I give him these medicines in a spoon with tiny amount of water. He is being seen by speech/swallowing therapist tomorrow. I requested her to prescribe the thickener for him for drinking fluids. It was suggested by his GP. It is really exhausting and painful to watch him suffer. I hope you get to see your sister soon.
Hi Mick72. We found Nutilis (thickener) helped quite a bit for fluids and slowed it down so dad didn’t choke on it. I discussed with a speech therapist maybe crushing his tablets into liquid thickened when he had particular difficulty. Helps.
Hi Outrigger. We were fortunate that Dad could make his wishes known to us when he was able to communicate and we have followed his requests since. If your sister was able to make here choices known, respecting that is more important than anything. x
Hi Outrigger, I really do feel for what you are having to contend with having cared for my wife at home to the end. Liquid paracetamol, as mentioned, we tried once - it was too strong causing my wife to choke. Perhaps in milk would help but we did not try it.Nutilis, as mentioned, was a saving grace, levels increased as time went on. I added it to full cream milk (in doing so allow about 15minutes after mixing before feeding, quantities of N are trial an error) and lucozade - this takes some mastering as you need to achieve a jelly consistency with trapped bubbles. My wife could just about talk when I started - she said the bubbles helped her swallow. Put a third to half lucozade in a beaker, add Nutils stir very gently until it stops rising then add more lucozade, just enough not to overflow. You should get a jelly consistency almost to the bottom if you get it right. I also added it to Laxido to soften stools, to thin soups but as quantities are difficult to get right I liquidised thick soups adding full cream milk to achieve th correct consistency for swallowing. Latterly I liquidised a second time when hot - it seemed to make it smoother.
My wife said early on she did not want a feeding tube through her nose or direct to stomach - she said when it gets to that stage, what will I be prolonging life for?
Every PSP patient is different in rate of loss of each function involving muscles, so very difficult for us to directly address your particular issues accurately. My wife could hear clearly to the end.
Being separated makes your life much harder than mine, hence I do really feel for you and the frustration you are having to endure.
Hi - plz check your doctor for carbidopa levadopa, which can help with swallowing
My dad had a feeding or PEG tube but we feel like it prolonged his suffering - it varies from patient to patient - please search this forum for "PEG" to see people's experiences - it's not a simple decision
Ok, thanks, yes my sister doesn't really want a feeding tube. She has a healthy appetite if she can get the food down. I read about some exercises that speech therapist can do with the patients for swallowing and talking. I was going to look into that. Is this a medicine? I will look it up.
yes, it's a medicine - it's marketed as "Sinemet" in some countries - doctors start with a low dosage and then triage it up with time - it also helps with muscle stiffness in the body
My husband said when he could speak he didn't want to be fed by a PEG but he agreed to have it on the understanding that it was better to have it fitted while he was well and he could then agree or not to agree to use it when the time came when he couldn't eat. We use it fully for fluids and now some food. if he changes his mind he can do but having it fitted when well is better option.
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