Coughing/choking

[Sfen]

John’s coughing/choking has become worse in the last few days. He is able to eat normally and is walking with a walker with my help, but often has bouts of heavy coughing. His Nero. Doc has no advise short of “contact Parkinsons assoc.”. He is truly receiving very poor medical care through this terrible journey. Wondering what others have done about this symptom

[Caro2132]

Have you been able to have a swallow test ? That would help determine what consistency of food or liquids causes the least problems. Mike’s ability to swallow is getting worse and we have moved from nectar thickened liquids to honey thickness. We also started using a blender to liquify meals and add sour cream to increase carbs. Mike cannot use the U step walker any more and needs assistance to walk in the house. Outside the house we always use the wheelchair.

If your doctor is not helpful, can you change doctors? A movement disorder specialist is the most helpful for PSP, but there’s nothing much they can do. Hopefully others on this site can offer advice.

Good luck and keep on keeping on.

Caroline

[easterncedar]

My guy liked to be cued and/or helped to raise his arms over his head when he started choking. He said it helped in fact, but also liked it because it gave him something to do, which calmed him down. Sometimes the choking was frightening. If the problem is excess saliva, there are a number of prescriptions to help. We had good luck with atropine eye drops under the tongue for quite a long time. Also had good results with exercises to help with swallowing given him by the speech therapist. He didn't do them regularly for long, but the mindfulness helped.

[Ophic76]

Have him do a swallowing evaluation to see what liquid consistency he needs and what food texture he needs. My husband was coughing a lot when drinking so we had a swallowing eval for him. He is doing so much better with the nectar thick so far. His food is me mechanical texture now or anything soft, with gravy. Sometimes I put them in the blend for few second to make it more like creamy. Good luck and take care.

[Tippyleaf]

Some good suggestions so far. It is a frightening experience for both of you. A speech and language assessment must be the priority. I found reminding my husband to breathe through his nose helped calm the coughing fits. Thickened fluids and dietary change also helped.

Big hugs

Tippy

[AJK2001]

A swallow test is definitely a good idea. You say he's eating normally but he may not be clearing his mouth quite as completely as he used to and particles of food maybe left which catch him out later causing him to cough - things like seeded bread can be a problem & biscuits. My Mum loved a dry cream cracker (weird I know) and did really well on the swallow test but by eliminating seeded bread & the crackers definitely helped with the coughing for a bit.

I am afraid that one of the aspects of this condition which can get so wearing is that they can do nothing for the condition, only try to manage the symptoms best they can, which means engaging with multiple disciplines, all of which work in a slightly different way, so it can turn into a virtually full time job, keeping/chasing them all up.

[tasha1944 in reply to AJK2001]

Our speech pathologist has ordered an EMST 150 (Expiratory Muscle Strength Trainer) for John to help with choking. Does anyone have experience with this?

[AJK2001 in reply to tasha1944]

Not heard of that, maybe someone else has. Be interesting to know if it helps.

[patahai]

There's infection setting in. Get regular checks done for aspirational pneumonia.

Look into VitalStim therapy - it can be life saving.

[Baytalon]

I only can repeat what others have said. The atropine drops helped control the excess saliva with no side effects. (The scopolamine patches helped the saliva but quickly caused hallucinations.) Steve definitely had issues clearing all the food from his mouth and insisted one trying to drink while food was still in his mouth....a dangerous thing to do. The speech therapist helped for a while. I don't know that Steve learned as much as I did in how to manage and avoid the choking episodes. In the end, he never suffered from aspiration pneumonia, but that's not much of a consolation. My prayers to you both.

[LuisRodicioRodicio]

Hi Sfen,

These are our experiences and information about:

•Persistent cough. Use the syrup recommended by the physician. To avoid in the diet: coffee, carbonated beverages as pop or soda (or eliminate the gas by agitation before giving it to the patient) as well as chocolate, avoiding also orange, lemon or grapefruit juice, helps.

In acute attacks of cough taking some yogurt can help.

We switched to a pine and propolis syrup (ProtectSapin) from the health food store that seemed to help a bit.”

The “easterncedar” chat contributor indicates that: “The medicine in most cough syrups conflicts with the anti anxiety medication”.

•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

[Mustafa128h]

Hi Luis, Great Advise!

[Dickwin]

Sfen,

folks on this site told me to try giving my wife pineapple juice. It is supposed to help break up the mucus that builds up in the throat. She swears by it and has 8 ounces twice a day. Usually upon waking and an hour or so before she goes to sleep.

[Sfen]

Thanks all for helpful advise. Appt. next week.. Will go well armed. Definitely don’t have medical help that

most of you seem to so appreciate all of you.