the latest development with my spouse is that she is clearing her throat all the time.
She is not having troubles (that she has shared) with eating or drinking. But when she wakes up from a nap, or any sleep more that 30 minutes, she spends the first 10 or 15 minutes trying to clear her throat. She also does it while sleeping, and periodically throughout the day.
As far as I know, she is not aspirating saliva or mucous, but how would I know until it becomes an issue?
Is this the beginning of aspiration and choking? Is this how it starts? Is there anything I can do to help with the throat clearing? This issue, which my wife has not really accepted yet, is the most disturbing to me so far. Am I wrong to be so concerned?
Any input is appreciated.
Regards,
Dick
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Dickwin
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My son had two bouts of aspiration pneumonia. The first, Nov 2016, was treated at home and he jumped right back. The second, March 2017, put him in the hospital for 7-8 days. He was given antibiotics intravenously. He opted for a PEG. When he came home, on his 55th birthday, he was chipper, but then things went down hill very quickly.
I don't remember my son clearing his throat before, during, or after any of those episodes.
To lose such a wonderful and young son to PSP is heartbreaking. 55 is so young. Can you tell me why you think he went downhill so quickly. Do you think it had anything to do with the peg? Also, was his inability to eat safely very gradual, or did it happen quickly?
My husband has trouble clearing g his throat and deeply coughing, but no problems swallowing. His doctor has said that a peg with PSP isn’t always a long term solution.
Hi Karynleitner,I agree with the counsel of your husband's doctor.
My son's birthday was March 30th. In the hospital he had a feeding tube (PEG) installed on March 28th, he came home on March 30th (as I write I am reviewing the few notes that I kept). His sister was visiting from out of state. March 31st, they talked away. He had her put on the Beatles dvd of MAGICAL MYSTERY TOUR. They laughed and talked. They are 15 months apart. She went home April 2nd. Who would know that 5 weeks later he would be dead.
April 3rd his oxygen was 93%, his respiratory rate was 16/25, his blood pressure 128/80. He refused to get up and walk so we did chair exercises and he agreed to 5 minutes on the bike. That night he said his stomach HURT so much and cried on and off for about 5 hours. I don't know if it was physical pain or in actuality him coming to grips with the terminal nature of his illness. April 8th, seepage of PEG, we went into Urgent Care.
Became heavily constipated..pooping about every 7-8 days. Oxygen tank brought in.
April 18th, oxygen was 87. April 22nd, his right eye HURTING him for two days. April 24th fungus (thrush in his mouth) found. April 25th Jeff about 12noon has a SEIZURE.......put into bed, in coma until about 1am woke up. April 26th, he pooped, we got him up, HE HAD A GREAT GREAT DAY. April 29th bed sore appeared, oxygen at 93%. His vision is gone, his speech is gibberish but his COMMUNICATION is excellent with hand gestures and thumb for YES and NO. Has no control of bowels or urine.....heavy constant drooling. Confined to bed.
On Sunday, April 30th, he stated, "I'm not going to get any better am I?" I replied "Probably not". He said he did NOT want to be fed anymore. That Sunday was his last PEG feeding. Kaiser hospice (his health plan), stopped his water on Wednesday. Thursday the chaplain came by the house and during that stay, over Jeff, he said a very powerful prayer....." Jeff had been a true and loyal servant of YOURS, God and was now asking to be brought home. Life was becoming too unbearable......................"
May 4, 2017, that night, about 8pm my son died. How I wish that PSP had never come. Yes, 55 is too young, and especially for one as beautiful, talented, and kind as my son.
Those were the events, as close as I can remember. MY OPINION is that the PEG, for MY SON, hastened my son's death. With the Peg he was not allowed to take ANYTHING by mouth....no food, no water, no medications...NOTHING. Before he was eating normally (he use to love tuna fish sandwiches for lunch). The PEG prevented me from giving him supplements that I use to put into a liquid concoction. They got stuck to the tube. He did NOT look forward to eating with the PEG. While in the hospital he was talked into a PEG. I do not think the hospital MD was familiar with PSP. Before the PEG, while in the hospital, he could walk with his walker around the corridors, and his speech was as able as mine. Because he was an adult, because it was his life, because he was filled with HOPE over the PEG, I did not try to talk him out of it. My daughter today tells me that she was glad I did not dissuade him, taking away his "hope".
Pegs do NOT stop aspiration pneumonia. Ones' own saliva can easily go down the wrong "tube". PSP, itself, restricts, towards the end, healthy swallowing, it contributes, as it progresses, to an inability to properly swallow. I wish that Jeff had allowed himself the risk with eating normally. He was led to believe that the PEG was the end of his problems. I had a animated talk with that doctor, and he told me that Jeff was an adult and therefore I had no say in the decision. So, I chose. I chose to NOT talk to my son AGAINST the PEG. My son also wanted to come home and the doctor told him that they could not release him until he could properly pass the swallowing test or install the PEG. When my son got home he told me that he NEVER wanted to go back to the hospital. So, my son filled two wishes....he was getting to come home and he had "hope".
With the PEG he lost weight. In 2014 he was about 172 pounds. Nov 2016 he was about 141 pounds. February 2, 2017 he was 131 pounds. March 2, 2017, he was 134 pounds (he had gained 3 pounds!). When released from hospital, March 2017, he was about 123 pounds. He was 5'11".
You ask if eating less safely began slowly or quickly. I Don't know except to say it was not something I noticed. He had had choking incidents with his pills early 2016. I quickly changed over to capsules and emptied them into a drink. After his first bout of pneumonia, late Nov 2016, he was told to eat slowly. My son did NOT like eating slowly. He got his 2nd bout March 23rd.
My preference, though not my choice, nor life to make that decision, was that my son would have taken the pneumonia risk over the PEG. It's all moot now, and perhaps if he had rejected a PEG, I would be here wishing that he had had a PEG. With death comes 2nd thoughts of choices not taken or taken.
Some have PEGS and do well. My son did not. The PEG also prevented him from being thrown over the bed on his stomach for the massages he loved so well.
Thank you for the detailed responses. Thank you for reinforcing that there are no easy or perfectly correct answers to the questions this damned disease foists upon us all. Thank you for remaining a member here and contributing so much. Your correspondence is appreciated.
You are welcome, Dick. I know, for me, when I ask a question I appreciate as detailed a response as time allows and is available.
I do pray that the Biogen clinical trial is helping your wife. It is my hope for all those participating in clinical trials....that and that they are NOT receiving the placebo.
I remain on this site because it helps my healing. I appreciate the gratitude you have expressed.
I encourage you to keep a short daily diary of your wife's day.
Blessings..............Margarita, Los Angeles, CA, USA
Hi. I just came across your heartrending post about your precious son. I was looking for other peoples accounts with choking. I had a frightening one yesterday. I have copd and asthma. I just wanted to say dont torment yourself in any degree over the peg issue. You know the Bible tells us that our passing on is "appointed" by God. It is all in God's will my dear....I spent 38 years regretting that when my 5 month old son died he was alone and not in my arms as I would have chosen..but I realise at last that there was a reason for this....one day when Im reunited with him in heaven I will know why. You obviously did everything a loving mother could do...I hope you dont mind my reply. My heart just went out to you. God bless and keep you. X
My husband cleared his throat a lot, very noisily. I used to say it sounded like a rutting deer. It stopped us going to the theatre which we managed often at the beginning (I got in free as his carer) but it became too noisy. My husband never had a chest infection or aspirational pneumonia and I put it down , in part, to being able to cough and clear his throat. When he could no longer cough, we acquired a saliva pump. It’s annoying to hear but I took coughing as a sign that at least that reflex was still working.
My wife has similar problems, she is gurgling as I write this I think it is a result of lying flat, I usually raise her into a sitting position and after a while it clears up. She's previously had two bouts of aspiration pneumonia the last one being in 2016. I need to add that I have just changed the scopoderm patch a new patch has cleared the secretions and she is now peacefully asleep.
My hubby did a lot of throat clearing too and seemed to have constant post-nasal drip. Whether it was the (CBD) or just a late-developing persistent allergy, I never knew. I added antihistamines into his medicine mix and it seemed to help. (You have to change them out now and then as the body seems to get used to one and doesn't respond as well after a while...)
Thank you all for your responses. Your suggestions and observations are greatly appreciated. My wife has been complaining about post-nasal drip, so I will look into and antihistamine.
My husband constantly cleared his throats way before diagnosis, it seems obvious now that he was automatically trying to prevent anything from entering into his lungs. As NannaB says it's a good sign that the reflex is working and that it helps to prevent infection.
Hi, There is a similar post, 4 days ago from shivcb, titled Trouble With Expectoration... cough assist. There are some replies on that post that you might find helpful? And yes, you have every right to be concerned.
I was just thinking and reviewing some notes I wrote when my son was alive. My son about 32 months (Nov 2016) after the onset of symptoms (March 2014) started using a WEDGE PILLOW (which I bought thro Amazon. com). This was in response to Urgent Care stating he had "acid reflex'. That's when he was DX with Parkinson's prior to PSP DX . Whether he had acid reflex or not, he slept better with the wedge pillow.
I put his soft pillow on top of the wedge pillow.
From Nov 2016 on Jeff never slept flat.....always used the wedge pillow until he got a hospital bed (about 6 months later).
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Dry throat and mouth
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