Episodes while eating

[Stephanielayell82]

Has anyone had experiences when they are feeding thier loved ones they they sometimes will cough,sneeze and nose starts running? My love one is on puree foods for about 2 years now. We feed her using a syringe. And the past fee weeks she is having increased with sneezing and nose pouring like a river. It's hard enough to.get food in her now all this extra to deal with....

[Kayelless]

yup. This is a standard symptom. The usual solution is to go to creamier foods.

[Stephanielayell82 in reply to Kayelless]

Thank you

[Dance1955]

atropine is an eye drop used under the tongue about 15/45 mins before food seems to help I’ve been using it now for a couple of years for my husband it certainly helps with the secretions/ sylvia good luck with it all

Hugs

[Stephanielayell82 in reply to Dance1955]

Yes we use the drops as well! Thank you

[Dance1955 in reply to Stephanielayell82]

it’s a nightmare isn’t it especially when you have to train /educate professionals my poor husband has had this for 11 years we are struggling everyday like all of you on here bless you all x

[Stephanielayell82 in reply to Dance1955]

It truly is....I will never understand why a disease this horrific has the longevity it has so inhumane. We are rolling into our 7th year. God bless you and your husband as well.

[David750]

Agree with Dance1955

[messier]

yes my mum has this problem. Sometimes she gets a blocked nose while eating and can’t breathe and other times it runs. It’s due to the messages to and from the brain getting confused. The coughing is a separate thing due to swallowing timing getting out of kilter and needs softer foods. How has anyone got the GP to prescribe this? The GP won’t do anything unless the nursing home tell her to, and I can’t get the nursing home to understand even the need for a nasal spray for when her nose is blocked. I’ve resorted to buying an air purifier with olbas oil in it which seems to help.

[Stephanielayell82 in reply to messier]

Thank you

[LuisRodicioRodicio]

Hi Stephanielayell82!

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. What is not used is lost!.

Time ago David750 pointed out: “I found with my wife (PSP) the food had to be more and more ultra smooth. Gauging this was difficult- not too runny not too thick. Liquidising food I found I had to be liquidised when hot to get the smoothness required. Any "grittiness" in the food caused choking”

Hug and luck.

Luis

[Stephanielayell82 in reply to LuisRodicioRodicio]

Thank you she lost her ability to chew 2 plus years ago. Her tongue couldn't move food around in her mouth

[LuisRodicioRodicio]

Hi again!

We have used a 60 ml syringe, introducing the pureed food between the teeth and the cheek in small doses (10 ml each time).

Luis

[LuisRodicioRodicio]

Hi Stephannielayell82!

I'm sorry PSP/CBD/ etc. has entered your family.

Despite having an effective, efficient and gentle GP, the necessary scheduling of visits to his office or to the emergency hospital, the necessary displacement, always complicated, the "roller coaster" of more or less banal symptoms that PSP generates, many of them unforeseen and repetitive, led us to a certain experience that, together with the possibility of consulting by telephone with some medical friends and family at any time, allowed us to alleviate the symptoms quickly until hours or days later we could consult with our GP.

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

These kind of diseases manifests they self 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 support of a GP and the "trial and error" method, you could achieve a quality of life with interesting moments despite everything.

I am not a physician.

During the 8,5 years in which we was living with PSP I have been collecting our own experiences, symptoms and solutions and that of other members of the chat to offer some notes as a suggestion to PSP/CBD patients and caregivers. The mentioned notes are made with good will and with the best technical criteria that I could contribute, thinking above all in the support of the caregivers

Wishing the best for you and your family and if the those notes-document with our experiences and our information are of your interest, do not hesitate to let me know to send it by the private mail of this chat.

Hug and luck.

Luis

Note.-The aforementioned documents include some photographs in "jpeg" or "Excel" charts that the PSPA private chat does not support and are canceled in the copy that I include in the private chat. In that case, if of interest (pictograms and communication boxes, the description of symptoms of the different types of PSP et cetera) the only solution is to send it by email to a "gmail" or similar email address. If you are interested and to avoid unnecessarily spreading your email, I suggest you use the internal "chat" channel of this website.