Hello again,

My saw a speech pathologist yesterday for his swallowing trouble. He doesn't seem to have trouble all the time, or some times are better than others, however, he was scheduled to have the test where they do an x-ray as you swallow.

The doctors advice was apparently to "stop drinking water". Apparently, when he was swallowing the 4 oz. portions small amounts were getting past the "flapper" at the back of his throat (sorry - I'm not sure what the technical name is) and into his lungs. Now, Dad is not a huge water drinker. He doesn't guzzle - never has. If he takes an ounce in one sip that's a lot - but he's always been that way for the most part.

Obviously, thicker liquids are better, however, I thought that water was pretty essential when you have Parkinson's, especially given the constipation issues that seem to accompany the disease.

Do any of you have this issue and if so, was your doctors advise to "stop drinking water"? She gave him a thickening powder to put in the water, but that doesn't exactly make it very appealing to drink. Does drinking small sips or drinking through a straw seem to help?

He is going back tomorrow to see her in her office to discuss the results (more than what was discussed at the appointment in the x-ray lab). I told him to ask about some swallowing exercises or techniques. He's got pretty bad dry mouth, so drinking the water is even more essential for him.

Any suggestions are appreciated.

Breathing and swallowing responses are slowed (like everything else) in pd. A lot of us have lost the ability to swallow at nighttime with concommitant dry mouth and waking up every few hours to clear our lungs. Water is a mobile fluid, and considered difficult to swallow without some backup into the lungs. This is important because anything that gets into the lungs can cause shortness of breath or bacterial or viral invasion. However, it is a must that we continue to keep properly hydrated. PWP who are advanced enough to this state must be made to drink and go the loo regularly. One of the common ways to "end pd" are to stop drinking fluids for 3 to 5 days. Sometimes, you have to give conscious thought as to how you are going to get today's supply of water into your body, without
choking on it. Huge pills that need to be swallowed at this stage become dreaded events, because the pWP is aware of the difficulties that they are having.
BTW "Biotene" products for dry mouth treatment, work well to at least keep your mouth from totally getting parched at night, especially during low humidity that comes with winter in the cold areas. i keep a small "spray" product by my bed. It is better for PWP than the gel, which could be a problem if "chunks of it" get stuck in the bronchi, if swallowed, or the mouthwash which we can inadvertently swallow and gag on. I am not promoting any brand names but just sayin that there are products out there for dry mouth.
also by the way, i can handle a beer better than a glass of water for some reason, but hate sugary soft drinks, and choke easily on food.
Constipation is a function of gut biota, adequte roughage intake, Normal water intake and absorption and other autonomic regulation; nothing in the way of medications that lower smooth muscle activity (especially narcotics), and keeping your abdominal muscles functional by deliberate flexing and getting off your seat and trying to move around the best you can will help to some degree, but loss of autonomic responses is often a sign of advanced pd, which at this point there is not yet a way to turn back the clock. cs

Thickened liquids vs normal fluid drinks are important if choking is a possibility.
Perhaps consult a dietician?
This can help with obtaining or making them suitable and enjoyable alternatives to water, tea, soft drinks etc
Also does it only occur when he is in an off state?
If so he may need to up his Sinemet dosage and the problem might be resolved.

I would definitely recommend following the advice of the speech-language pathologist and asking for clarification before making any adjustments to the diet they've recommended.

We frequently as speech-language pathologists test for swallow safety with small sips and with straws as part of our evaluation process, and it may be that this was not recommended as an option because they were not deemed safe for him.

Your speech-language pathologist should be able to make recommendations for getting adequate hydration on a diet with thickened liquids. Be sure that once you are trained on the swallow exercises to address the problem(if they are recommended), that you complete them consistently, and talk to your speech pathologist about how to know when you all might be ready for a diet upgrade.