I haven't posted in a long while. As you all know, some days are extremely busy and mine have evolved into months. I haven't even had time to keep up with your posts. I apologize.
Unfortunately I've noticed there are several new members. So sorry you have to be here. And to others, I'm soooo sorry to hear about your the loss of your loved ones.
One of the things keeping me ultra busy is my 100 yr old dad got pneumonia, ended up in hospital then to rehab center for a month. I finally git to bring him home 2 days before Christmas. Truly a "Hallelujah" moment. He has continued regaining his strength, almost good as new.
Sue, my sister with PSP, has somewhat maintained. Incontinence has gotten worse and her balance has too. However, the reason I'm writing is her choking and dry cough and gagging has increasingly gotten worse. But, there doesn't seem to be a lot of phlegm, yet. We've tried honey, tea, water, toast, and cough drops. Nothing seems to help. I welcome any suggestions and ideas. Anybody have any luck with humidifiers?
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Gracie_Girl
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Get a swallow study done at the Speech pathologist office. Most likely her epiglottis is no longer functioning. This is the flap that shuts when swallow reflex is triggered.
You may need to start pureeing her food.
My husband started doing the same as your sister. We had the swallow study done. They gave him something to drink and eat with barium in it. They then made a video of his esophagus and watched where the food went . When they noticed that the epiglottis was not moving or shutting off the trachea to the lungs while swallowing, they advised B to go to therapy to strengthen the epiglottis...after weeks of therapy, he was only getting worse....Heimlichs were becoming a frequent event. He lost alot of weight. I got scared and and dr. forthwith ordered a PEG tube which bipassed swallowing and went directly into the stomach. I now feed him a liquid nutrient. he seems to be doing very well on this form of feeding and I am very thankful the Drs worked on this during Christmas break of 2015!
probably Too much information but do look up and then talk to your dr about a swallow study. You and your sister may want to discuss if she wants a PEG tube. not everyone does and that's ok.
Thank you so much for your suggestions. She had the swallow test done a little over a year ago. Maybe it's time for another. At the time she was showing some signs of swallowing problems, nothing bad. Also, she had therapy last year and I'm hoping to get approved again this year. It did help her a lot then.
Hopefully, we can put off the tube for awhile longer. But, she has told me the tube is her wish in the future. Right now, I'm hoping temporary fixes will be a help.
Good I am glad you discussed this and know where she is at with tube feeding. For B by the time he needed the swallow study , even with therapy , he needed the PEG....He probably progressed normally but I saw it as eating pizza one week and choking on water the next! we went pretty quickly to the tube method, I did not puree; probably tried more soft foods....actually what I do remember is that he started eating VERY slowly....I started feeding him dinner around 3:00 so he could be done in 2 hours . He did not want to start eating after 4pm...he was too tired....I just remember how scared I got...AND he did not eat much...he was a semi big eater!
Goodluck with tests and therapy I hope it continues to work for your sister....
Dry cough can be a side effect of some of the drugs commonly tried for psp or for heart issues. I second Mrs. Birke's suggestion that you get a SALT evaluation. It helped my guy stave off the swallowing problems for years.
I did try a humidifier, to no noticeable effect at one point, on the doctor's advice. The medicine in most cough syrups conflicts with the anti anxiety medication, which we didn't know until after months of using them. My guy really insisted on cough syrup, which seemed to help. I switched to a pine and honey syrup from the health food store that seemed to help a bit; I think there was comfort for him in the big spoon and sweetness.
I think we'll steer away from cough medicine since she is on anti-anxiety and anti-depressants. However, I give the pine/honey syrup a try. Thanks so much!!!
Hi there, When W had his swallow test done, the Speech Therapist suggested he should take some yogurt when he gets a coughing fit. So far this is working.
Thank you all for your suggestions. We are using several to help with my sister's choking and coughing. They have helped tremendously. We've used pineapple juice, yogurt, honey, and chamomile tea with honey. We find alternating them helps a lot and stops the coughing and choking almost immediately. Thank god!!! Thank you again for all your suggestions. You always manage to have the answers. Bless you all.
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