Which foods

[Bellaismydog]

Should I avoid to prevent choking? And, should I let first responders in my area know that I may choke?

[Pavaga]

Hello Bellaismydog,

I hope you are well. It is very important to receive directions from you Speech Pathology on swallowing techniques. On my husband last swallowing study his diet was changed to "mechanical soft." It depends on how severe is your disfagia. It is important to follow the directions to avoid aspiration or delay it as much as possible, since it is a big risk in this disease. A hug, Patty

[salem16 in reply to Pavaga]

Everything is minced and thickened with my husband. He is getting thin.

[Bhakthan]

My wife was increasingly experiencing severe difficulty in swallowing, until we finally installed a PEG, or stomach tube for feeding. She's having difficulty in breathing too, which is mostly through the mouth now. She's stopped speaking too and unresponsive to communication.

[salem16 in reply to Bhakthan]

Hugs to you. It is so hard.

[ketchupman]

Your main issue will be "thin liquids" which can be thickened with a thickening powder you can buy at most local drug stores, such as "Thick It". You'll need to thicken most drinks, including water, although if you were to aspirate a liquid, water would be one of the safest ones, but not totally safe. You'll need to thicken soups, as well. And even though ice cream appears to be a solid, as it melts and goes down your throat, it turns into a thin liquid. There are special types of ice cream that can be purchased that are safe, such as "Thrive". You should occasionally get a "swallow study" from a speech therapist. They can determine how bad your swallowing currently is.

God Bless.

Ketchupman

[Cuttercat in reply to ketchupman]

Hope you’re doing ok. I’m still struggling. Glad to see your post.

Cuttercat

[ketchupman in reply to Cuttercat]

It’s been almost 3 years since I lost my wife. Still pretty hard at times, but I’m making the best out of life that I can. I’m still leading support groups for PSP, MSA, CBD, and LBD (all of the atypical Parkinson’s diseases). And I serve on a committee at CurePSP and getting active on several projects to help caregivers cope. Take good care of yourself.

[Cuttercat in reply to ketchupman]

I’m still trying to find my place but I’m inching along. Thanks for your insights. Who knows what tomorrow will bring.

Cuttercat

[Dadshelper]

Per Dad's dietitian try to avoid foods that are flakey or crumble easily, likes cookies or some pastries. As mentioned already the thinner the liquid the more likely it will cause you choke. For Dad I had made up a folder, red in color, with what his Dx was, things to avoid, doctor's name + phone number, choke hazard...etc etc. Whenever EMT's came to the house I handed them the folder.

Ron

[Hidden]

Don’t know what you can still eat comfortably. I stick to things that are soft. When I do meat I will buy grounded or chop up whatever the cut is as fine as I can to eliminate a lot of chewing.

[salem16 in reply to Hidden]

Do u taste it as a particular dish? My husband is on minced food. Have you lost weight?

[Hidden in reply to salem16]

I do spicy foods which are all flavorful. We have both lost weight. I started to feed Larry last summer. He would give up trying to get food to his mouth.

[Cuttercat]

Purée everything. It’s amazing what you can come up with. Good food that tastes great. Eat ice cream and lots of good desserts. Enjoy. Smoothies and milkshakes are also perfect.

Yes be sure to have your paperwork available at all times for first responders and caregivers.

Cuttercat

[kiwitaramerlin]

Hi Bellaismydog, my husband has the same as you but i still don't understand why can't the doctor treat it. It must come from some thing in the body why can't they swallow thin liquid or food. Can someone tell me is the problems for a shortime that you can't swallow or for permanent or this can be treated with medication apart from swallowing a special diet or speciale food or feeding by peg .

i hope you can get some positive answer to this.

[JA10 in reply to kiwitaramerlin]

Hi Kiwitaramerlin,

From what I understand, the swallow does not work because of PSP . The area within the brain, that is usually affected by the PSP, controls some of the body's processing. Some things are skills we have learnt, like writing, which are then lost, some are things that the body does without being taught, like swallowing. The brain works by sending little electric signals between different areas, the PSP stops those from getting to the correct place. In regards swallowing, when you have food or drink in your mouth, your senses will tell you brain that you are about to need to swallow. The message within your brain gets through, but more slowly than in a non PSP brain. Once the food starts the process, until it has reached the stomach, the swallow process needs to continue to happen. With PSP, that is hard, as the process does not work automatically so well. Liquids are particularly difficult as gravity ensures that any thin liquid moves quickly. If the swallow is going slowly, because of the PSP, the liquid moves faster and can then enter the respiratory tract instead.

Thickened liquids move more slowly which can help the process for a while as it slows liquids down, giving the swallow a chance to work slowly.

In the UK, a speech and language therapist will do a swallow test, then give instructions for suitable diet and correct thickness of liquids when using a thickener. I guess other countries have something similar, maybe accessed through the regular doctor or the neurologist.

The thickened liquids and, sometimes, pureed diet do not solve the problem, but can help for a while. Unfortunately people can still choke on their own saliva, even if everything consumed is the correct consistency.

[kiwitaramerlin in reply to JA10]

Thank you jA10

[salem16 in reply to kiwitaramerlin]

I was told back of throat no more quick reaction to swallow it then goes directly to lungs. The thickened stuff is slowed down.

[LuisRodicioRodicio]

Hi Bellaismydog!

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method to test solutions to the various symptoms and problems.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

These are our experiences whit a PSP patient:

•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. 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.) Medications like "Mucosan" (Ambroxol hydrochloride) twice a day or “Fluimicil Forte-600” (Acetilcisteine) one by day, help. Ask physician.

•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.

•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.. There are some foods to avoid…. things like grapes, rice, foods that crumble easily, 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 seems to avoid the increase in viscosity of phlegm.

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

Hoping to be useful.

Hug and luck.

Luis