oropharyngeal dysphagia

[Gingerw3]

Today I got the results from my husband's swallow study and xrays. He has oropharyngeal dysphagia. I was kinda expecting it, as I see him choke often on food, drink and even his saliva. He slurs his words often, especially at night. They recommended mechanical soft diet, thin liquids and crushing of oral medications before taking. We are about 4 months into the diagnosis, but in hindsite about 4 years into symptoms. He has very strict advanced directives that he had drawn up many years ago. The doctor says he is young and otherwise healthy so we can treat the complications for quite a while. I guess I want to know, how long before he stops being able to swallow and talk?

[Dadshelper]

Dad has been on similar food textures for over 8 months. Each person progresses at different rates so it's really difficult to give anything but very rough estimates on time.

I noticed you said "thin liquids", did you mean thickened? When crushing meds ask doctor or pharmacist if it's OK to do so. Some meds are time released and crushing could affect the release rate.

Ron

[Gingerw3 in reply to Dadshelper]

That thin liquid thing confused me also. I assume the doctor meant thickening. I'm not sure. He has to live in a locked memory care facility, so I assume they will know how to administer the meds when they see the orders. 8 months is a long time. I was afraid it would be very fast.

[Dadshelper in reply to Gingerw3]

I would double check with doc to see if he meant thickened, if he is for some reason wanting thin liquids ask why.

As for the meds and being in nursing facility you can always request a list of meds being used, how given and why they are being given.

Ron

[Martha_k_uk]

Hi Ginger,

As with anything related to this condition, there are no hard and fast rules.

My dad had suffered choking episodes for about 12 months which grew gradually worse. However it was only in his last 3 months that things really deteriorated and he was prescribed with a thickener for his liquids. Prior to that he was eating a normal diet with some minor adjustments and drinking normally.

At first the thickener was used in small amounts to provide a syrup like consistency to liquids - maybe this is the thin liquid that the doctor is talking about. There are varying thicknesses for liquid depending on where the individual is up to.

It's so hard to see the increments of this disease and not ask yourself what's next and when but please try and make the most of the time you have in front of you know, each stage brings a new challenge.

[JA10]

My Mum is on 1st stage thickened liquid, the thin syrup consistency, as she was beginning to choke sometimes. She had an assessment with a speech and language therapists, who gave the diet advice and organised the prescription for the thickening powder. It has been some months since then and she was able to have the occasional unthickened drink still, though now we are looking at ensuring we take the powder everywhere. I think like every element of PSP, how long it will be before she deteriorates, is an unknown time! Julie

[Kevin_1]

Hi Gingerw3

Adding to the other replies.

Many medications are available in liquid form.

Best toy you all

Kevin

[LuisRodicioRodicio]

Hi Gingerw3

These are my experiences on PSP disease expecting they could be useful on your case:

•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.

•It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid, it is important to drink liquids. Steam inhalation from boiling water with a few drops of Eucalyptus essence and a small spoonful of Vicks Vaporub (Olbas Oil in U.K.) with a towel covering head and bowl helps. (One to three times a day.) Medications like "Mucosan" (Ambroxol hydrochloride) in the morning and in the afternoon help.

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

•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.

Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia,” (Besides falls, this is another very important risk.)

•Add thickeners (eg, Resource from Nestle) to drinks (water, Aquarius orange or lemon or similar, etc.) till obtain a bit glutinous liquid. To drink, it is advisable to use a special cup (Ornamin 815) with the chin as near as possible to the chest.

•The food must be moderately doughy and in small pieces if solid.

•The speech therapist has insisted that she should not take meals that "deceive" the mechanism of swallowing that is damaged. The foods that “deceive” are those that have liquids and solids in the same bite (eg, some beans with soup or a soup with pasta).

•Making a puree with a hand blender is always a solution, but it is preferable to crush with a fork until a homogeneous paste without liquid and so as not forget the function of chewing.

Foods: Mediterranean diet emphasizing on fruits (peeled fruit avoiding the presence of seeds) and vegetables; high fibre diet... no so much pasta or potatoes (always with a size of each piece of pasta between 1/2"- 3/4"). Fruit compotes in small pieces or better crushed using a hand blender. Dates and ice cream are well tolerated. Thick milkshakes from Wendy's (Frostys). Try jelly.

In line with these suggestions, I introduce a phrase by Kevin (from chat group HealthUnlocked): "Food and favorite foods are really important. Food is is comforting and if familiar it gives so much pleasure in a diminishing world."

Hug and luck.

Luis

[Gingerw3]

Update: the "thin liquids" was apparently supposed to read "thin liquids with modifications". So they spent the last week trying to teach him to drink with his chin tucked. The therapist decided he is not able to understand or remember to modify his drinking habits. So he now gets "nectar" consistency liquids. He drinks them, but with a grimace. He doesn't understand why he has to drink this way. Good news though: the therapist said his food eating with the modified diet is working great. So that's something!