Hi I am from India and this is my first post on any e-forums related to PSP even though I have been reading a lot. My dad, 70 years in age has been suffering from PSP from past 4.5 years and degeneration has rather been quite fast. His condition at a glance : cannot speak, cannot move right shoulder, cannot walk by himself, cannot open eyes, incontinence, drooling at times, not been able to stand up even with support since a month, has been suffering from infections in and out - UTI, skin, ear, abscess in cheeks. We are taking care of him at home with a care taker and daily visit by physio.
Now the actual question : My dad has been coughing constantly when he sleeps and it is as if he has choked since about a fortnight. We have tried various foods, and kinda come to conclusion that he has been good with semi solid food, almost like a puree but he is extremely uncomfortable with water or other fluids. Now being very cautious with food, he doesnt choke while he is sitting up right but the moment he is on bed to sleep, he starts coughing up badly which is very painful to see / hear. We have even tried nebulization for almost 10 days but of not much help.
Also PSP is quite rare in terms of know how and cases in where I live. We dont have same medical support like the articles I read on this portal . Even care taker we have is more as support but not medically trained. So any help here is much appreciated.
Thanks
Balaji
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BalajiN
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Food needs to be puried. Liquids need to be thickened, He needs to be kept upright whist eating or digesting. He may also be choking on mucus. His mouth needs to be kept clear.
Hope that helps. It is a really hard time for you.
Resource, the thickener often used in the UK is merely a starch based powder which thickens fluids.
Rice water would be equally good. As the persons swallowing reflex becomes slower they need increasingly thickened fluids. So that the fluid does not move through the throat too quickly and so the slowed reflex can cope with it. So you will need to experiment a little on just how thick to make it. As a guide vegetable oil thickness is a good place to start.
Other thick fluids such as juice made from fruit such as mangoes is equally good.
I hope this helps.
Wishing you all the best.
Kevin
PS - I am sure you know this, but it is worth the saying:
Rice can carry the Bacillus cereus bacterium. It can cause severe food poisoning. Boiling the rice does not kill the spores. So rice water (and rice) for keeping, should be cooled within an hour and kept in a cold fridge for no more than 24 hours before use. The fridge should be below 10 degrees C.
Adding - boiled white wheat flour or maize flour are also good and they can be kept in the fridge in a 'thick form' and mixed into liquids as needed.
I squeeze lemon into Larry’s water. Use any sort of flavoring. The speech therapist recommended this. It tells the mouth there is something in it. I did try the thickeners without much success. He also uses a straw to drink to limit how much he takes in at once. He still choaks but manages.
At night my man used to have terrible choking fits from unusual production of very gluey phlegm. It's awful, isn't it? I sympathize!
We used a suction machine for a while, but what helped was a prescription for atropine solution. I would give him three drops under his tongue morning and evening. It really worked for a year before he developed tolerance of it. Then we switched to glycopyrrolate, which worked well, too.
Every patient is different, but we had no real trouble. I don't understand the question about weak teeth. Some folks can't use the machine because of biting issues. It really helped as an immediate response, and was quite good for a couple of months, but when the phlegm became a constant problem as he was trying to sleep it was a struggle to manage. He couldn't turn the machine on and off himself, although he could manipulate the wand well enough, so I was jumping out of bed every 10 minutes to turn it on and off. And it was noisy.
Hi, my son who died may 4, 2017, slept with a Acid REflux WEDGE pillow (25X24X12) purchased thro Amazon.com. We put a regular pillow on top of that. I hardly remember him coughing. As he progressed we rented a hospital bed and cranked it up. Except for urinating a great deal after being put to bed, he seemed to have a peaceful night.
Excellent idea, lying flat makes it impossible for the phlegm to be swallowed or brought up. I have also noticed the increased urine at night. My husband can go four to five hours during the day, but at night we are up ever hour or so.
I was told the increase in urinating at night is basically a fault of gravity. When we walk around all day the leg muscles act as a sort of pump and force liquids from the legs back into the body's core area for the kidneys to process out. Once a person is in a wheelchair or seated most the time, that pump action doesn't occur so the liquid stays in the lower extremities, hello gravity. When the person is laid in bed the fluid can flow easier to the body's core and kidneys kick in.
The wedge was placed on top of the mattress with another pillow on top. My son slept on a high angle. I'm sorry that if you are using this same technique it is not helping. Keeping you in my prayers.
I don’t know if you have access to U.S products like “Jello”, it is a gelatin and is basically flavored water with gelatin. Also we have popsicles which are just frozen flavored water.
Because of the danger of infection, my husband rinses his mouth at least three times a day with an antiseptic mouthwash.
Bens neurologist explained that anything that used to be automatic no longer is with PSP. The automatic closing mechanism that closes when you swallow food or liquid have access to the lungs because the closing mechanism doesn't close quickly enough, this continues to deteriorate as the disease progresses. This is why thickened liquid is a good idea as this prevents liquids escaping into the lungs. The same apples to food, they need to have food that remains in a ball and bits don't stray into the mouth, this enables the food to be swallowed without going into the lungs. This has helped Ben tremendously but he still has many incidents of choking when eating or after a meal. Sitting very upright and staying upright or half an hour after a meal helps prevent choking and aspiration but isn't fullproof.
George has carbonated water with organic cranberry juice in it, the bubbles in the water helps the swallowing, and the cranberry juice stops the urine infections, he also has a bigger catheter tube put In which stops the infections. Yvonne xxxxx
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