Best wishes to Mamapiggie and swallowing question

[Purrlie]

Sorry to learn of your tumble Mamapiggie and sending all good wishes! Have you thought of applying vitamin E to speed healing?

We are wondering if anyone has experienced a really rapid (seems like an almost total) shutdown of the swallowing reflex, with lots of thick phlegm, much difficulty even with a teaspoon of water, and then, after 3 days, a change back to no phlegm to speak of and the ability to swallow very small amounts of applesauce. When this was ongoing, even just rinsing his mouth with water brought on the coughing out of lots of clear but sticky saliva. Today that is not happening. Do some PSP symptoms come and go like this? Thanks!

[daddyt]

My experience is yes. Others may report a resounding NO. This disease will manifest itself differently with each patient.

Tim x

[LuisRodicioRodicio]

Hi Purrlie!These are our experiences about hoping to be useful.

By internal mail I am sending to you some more experiences that perhaps could be useful.

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• Dentistry. As Kevin said: “Get as much dentistry done as possible. It is highly likely that your loved one will eventually have difficulty opening their mouth. If their teeth are good then you won't be facing full anaesthetics for a tooth extraction, or fillings”.

• Phlegm and choking: The first thing is to remain calm during episodes of truly shocking coughs. The second is that a physician rules out an infection in the respiratory tract. Get a pulse oximeter to control. (Fever is an indication usually either pneumonia or urinay tract infection (UTI) in PSP patients).

• It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid, it is important to drink liquids. Ten minutes steam inhalation from boiling water in a bowl with a few drops of some floral essence (avoid mint plants and eucalyptus) that is pleasant to the patient, a small spoonful of marine salt and some pieces of lemon, with a towel covering head and bowl helps. (One to three times a day (*))

• Inhalation of the mentioned water steam together with abundant oral hydration are usually sufficient to improve the fluidity of phlegm.

• A steam atomizer to keep the air in the room moist helped, too. (40% - 52% moist advisable.)

• Medications like "Mucosan" (Ambroxol hydrochloride) or “Fluimicil Forte-600” (Acetilcisteine) can help in some cases. Ask physician.

(*) We have observed that a steam inhalation session immediately before dinner can reduce appetite. We are trying to give her dinner "before" the "steam inhalation" and, for now, the results are better.

• In case of choking, raise both arms at shoulder height, breathe only through the nose intensely if posible. If not, inhale air intensely but not very fast through the mouth. Retain air a couple of seconds and then force the cough.

• Also here, to avoid in the diet drinks that can be irritating helps: coffee, carbonated beverages as pop or soda (or eliminate the gas by agitation before giving it to the patient), chocolate, orange or grapefruit juice, etc..

Note.- It has been described that: pineapple juice breaks down the protein very well and fluidifies the mucus (phlegms). It will have to be tested if the patient tolerates pineapple juice without coughing or choking. (Red1990 indicates that: the pineapple juice enzyme complex is available as a supplement called Bromelain. For people taking anticoagulants, bromelain and melatonin have the same risks of gastrointestinal bleeding as aspirin).

There are some foods to avoid…. things like grapes, rice, couscous, lentils, peas etc anything small was problematic as were spicy foods. Foods that crumble easily, cookies, crackers, stringy foods, sticky foods, etc.

• There is a suction machine which helped a lot with the very sticky phlegm. We have NOT used it yet.

• A steam atomizer to keep the air in the room moist helped, too. (40% - 52% moist advisable.)

• The physiotherapists have exercises reinforcing trunk muscles to improve the cough response to choking. Engage a good speech/swallow therapist to learn swallowing techniques.

• Avoid dairy products, especially before bedtime, this seems to prevent the increase in phlegm viscosity.

• Raising around 15º a 35º (9” to 12”) the head of the bed also helps.

Hug and luck.

Luis