PSP Nightmare

[Mogi2002]

My father he had his fist aspiration pneumonia. We had to do the PEG, since he failed the swallowing test. Now he is in the rehab center. But he has a lot of secretion. How do we clear it? He can't cough it out. Can anyone help? His breathing is very hard. That's I think due to the phlegm. How can we help him? He's been given naubulizer to help him, but I think he got some allergic reaction. Can anybody give some advice please? I am new to the forum. But he posts I am reading are so helpful. How often are the aspiration pneumonia coming back?

[easterncedar]

Hello, Mogi, I'm very sorry about your father. It's a sad situation. Watching him suffer must be awful for you. I do have some idea about that.

There have been many discussions here about the thick secretions that torment some people. Some remedies work well for one and not another, and some have bad side effects. The two things that work for us are a suction machine, which has a thin wand that goes easily around the mouth and vacuums up the mucus, and the drug atropine, in a 1% solution that is sold as eye drops, but which is prescribed the doctor to be taken orally, two or four drops a day. The atropine has worked wonderfully for a year.

The doctor prescribed atropine drops after my man also had aspiration pneumonia and a terrible time with gluey secretions at night. He coughed and choked. The drops may not be working quite as well now, but this year has been a good one.

Best wishes to you and your family. Please keep in touch. Easterncedar

[honjen43 in reply to easterncedar]

Go to bed, EC !!!! Sleep tight.

Hugs

Jen xxx

[Mogi2002 in reply to honjen43]

It's hard to sleep these days. My mom and I are taking turns. She is mostly in the rehab for the whole day. But I think my father had some allergic reaction to the neubilizer and he started to have foamy saliva coming out of his mouth. They change the medicine in the neubilizer. Hopefully this helps.

[Mogi2002 in reply to easterncedar]

Thank you so much. I've heard something about glycopyrrolate. Is this what you are referring to as drops? I am not sure. I know that they put glycopyrrolate for my dad as needed. They changed it yesterday to once a day and second as needed. Hopefully this helps. Have you suctioned only in the mouth or you were going deeper? His phlegm seems to sit little lower.

[honjen43]

Welcome to this site but so sorry for the reason you joined. PSP is a horrid disease but you have found a group who will be supportive and very caring!

Your family will give you support too. Make sure they come and see your father and you soon. They need to be there!

I assume your dad is in rehab in a hospital. They do have suction machines that can help but are reluctant to use them frequently for fear of tissue damage.

Talk to his doctor by yourself and get his opinion. You may have already done this. He can then tell you what he can do to help your dad be more comfortable. It may not be the sort of news you are ready for and recovery may depend on that treatment.

Aspiration pneumonia happens when the swallow reflex is very poor and a small amount of food fluid goes down the 'wrong way'. This is always in the right lung, unlike a viral infection which can be in either side. Viral pneumonia can be treated with antibiotics . Pneumonia like your father has is more complicated.

My thoughts are with you! I know what you are experiencing and know how hard it is! Keep in touch!

Big hug from me

Jen xxx

[Mogi2002 in reply to honjen43]

Thank you

[Mogi2002 in reply to honjen43]

Thank you

[abirke in reply to honjen43]

Interesting, Why is aspiration pneumonia always on the right side, is that the first lung to recieve air and or other stuff?

[Mogi2002 in reply to abirke]

That's a very good question. I have no idea. But that's what I was told as well. I will ask the doctors here whenever I can.

This is our 4th hospital stay. This timewas c diff that brought him here.

Even though he is better with his BM, last night he started to breath very hard. It continues.

I think we came to the point that his body is getting very tired of pumping the oxygen to his lungs.

It is a fight every minute of a day.

I hope you are doing well. I've been thinking about you a lot.

I've joined this community just recently. But it seems like i have known all of you forever.

We all have so much in common.

Thank you

[abirke in reply to Mogi2002]

so many things to figure out ....You think you've learned something only to find out it's still just part of the the whole....

[Mogi2002 in reply to abirke]

That's so true.

[honjen43 in reply to abirke]

I understand it's because of the way we are made! When we choke it is channeled to right side.

Thinking of you AVB!

Hugs! ( ) ( ) ( )

Jen xxx

[abirke]

Wow lot's of questions . The first place I would go for answers is his med team at the rehab center. What is the reason for the nebulizer...to open up the bronchi?..My husband got his first bout of pneumonia he panted or breathed hard as well, they put him on oxygen....and because his breathing and left lung was very diminished they put him on Morphine.....Morphine, who would have thunk it, it actually helps open the bronchi thus provides better ability to breathe!

Atropine may be good for your dads high secretion output....We used glycopyrrolate......worked for a while ....

And by the way PSP IS a nightmare...I will write more soon I am tired goodnight and goodluck

AVB

[Wgrape in reply to abirke]

Thinking of you AVB, hope all is well!

Take care, Wanda

[abirke in reply to Wgrape]

Thank you wgrape been an avalanche...amazingly we have all survived... whew

AVB

[jillannf6 in reply to Wgrape]

I AGREE W AND ANDREA

LOL JILL

XXXXXXX

[Mogi2002 in reply to abirke]

Thank you so much. Any ideas help. It's seems like everybody once they hear PSP is kind of giving up. I wish we had a PSP doctor that could help us with all these questions. Our next visit is scheduled for March. However we need to help him now. We didn't really thik it will go bad that soon. Everything has changed after he got pneumonia

[easterncedar in reply to Mogi2002]

Everyone is different, but my sweetheart recovered fully after his pneumonia, and no one was optimistic about that at the time. Best wishes, ec

[Mogi2002 in reply to easterncedar]

Thank you for your suppor. We hope for the best.

[abirke in reply to easterncedar]

That is exactly what seems to be happening to Bruce!

[Mogi2002 in reply to easterncedar]

That's really amazing. Wish everyone of you the best. He is very weak. He did physical therapy today. He did well. But I wish he communicated better so I would really know what's going on. His jaw is almost locked. He closes it so hard that it is so hard to have him open it. Somebody mentioned to me Botox injections. I am not sure if anybody has tried them?

[easterncedar in reply to Mogi2002]

Lots of Botox experience here. Try the search!

[Mogi2002 in reply to easterncedar]

He gets injections to keeps his eyes open. However he also keeps his mouth closed. I just asked the doctor today to see if neurologist can see him. Maybe we can get injections that will help him to open his mouth.

[abirke in reply to Mogi2002]

is he on antibiotics still...Does he have a fever.....They actually gave my husband 15mL of straight protein to regain some strength and fight off the infection.....He panted for a good week before hospital and all of the stay in the hospital and sent him home to hospice care with diminished breathing....He is getting somewhat stronger but I'll tell you when it's the lungs it takes a LONG time to recover ...

I would call his dr that you are to see in March and tell them of your worries...though if he is in rehab....they should also be made aware of your concerns! You are your dad's greatest advocate and unfortunately may be passed by if you're not there kicking and screaming his needs to those who can do something about it!

I was enlightened by easterncedars comment that her husband recovered fully even though that was not the prognosis!

you get some rest and stay well nourished so you can help your dad.

AVB

[Mogi2002 in reply to abirke]

Thank you so much. I know they gave him so more protein. I just hope he will regain some strength.

[Mogi2002 in reply to abirke]

How often did you give the glycopyrrolate? They are doing it now once a day

[abirke in reply to Mogi2002]

I give glycopyrrolate 1mg twice a day....once at be one upon rising

[Mogi2002 in reply to abirke]

Thank you abirke for your advice. Unfortunately my dad is back in the hospital. He had hard time breathing and his oxygen went down to 70's. His rehab center was not prepared at all to handle emergency situation. They couldn't even suction him... we had no choice but take him back to the hospital to get professional help..... I wish I could even give him one of my lungs to breathe and help him with pain. Very very painful time for me, my mom and my sister. I really thank you for all your support.

[abirke in reply to Mogi2002]

What was he in rehab for if it was not for lung infection? However if he has a pleural effusion rehab won't be able to take care of it if it needs to be drained. (stuff I just learned) I would talk to dr about the Morphine. My husband doesn't have pain ....BUT he is having trouble breathing and the Morphine really opens up his airways!....your dad may benefit...talk to dr there about it....

AVB

[Mogi2002 in reply to abirke]

He was in the rehab after he had aspiration pneumonia. Mostly to get him back to stand on his feet. He couldn't walk much after hospitalization. We wanted to make sure he is more mobile before we talk him home. So we can care for him. I just hope God can give us one more chance so we can take him home.

[abirke in reply to Mogi2002]

B who is 56 and could minimally walk before the pneumonia with complete support...to the bathroom or up and down his ramp for exercise, now can barely stand. I do not expect him to walk again.

I pray that God will give you all an easy transition to your dads continued needs....

AVB

[Mogi2002 in reply to abirke]

Thank you so much. And best of luck to you!!!!

[Valbri]

My husband had a feeding tube. He could no longer swallow or talk, eventually he was unable to move his fingers for yes or no, nor could he blink. Communication was difficult. He was able to cough up the phlegm but it was difficult and painful. Eventually he got pneumonia and in my search for help I learned that suctioning was needed. I read that some caregivers were using suction machines before there was a case of pneumonia. I was never able to get help in acquiring and using such a machine, Only while he was hospitalized did I see them suction his throat and then sometimes I had to request that they do it. Once he had had the feeding tube inserted we made a point of cleaning his mouth a few times a day with the sponge toothbrushes you can buy at a medical aid store. They helped. Eventually with his last case of pneumonia he had to be put on a ventalator. After a week it was removed and he struggled on with an oxygen mask and suctioning. He wanted to live but his heart gave out and the struggle was over. It was sad and there was relief. I am still mourning but I am bitter over the last two years of his life. The "no cure, no treatment" description of PSP is a grim prognosis. Bob lived for 6 years after the first diagnosis. His quality of life was greatly diminished in the last two years but his will to live was very strong. He became completely helpless and yet he would watch Tv and we would see a smile or even a chuckle when it was funny and sometimes a tear if it were sad. He always knew what was happening. We were determined to keep him home with me and easy access for our children and grandchildren. My husband had pneumonia a few times and was able to recover but as the disease progresses the body no longer is able to function and regain what has been lost.

I am sorry to give you such sad information but I think its better if you know what is ahead. For now getting help with suctioning may give your father some relief and a chance to recover this time. I know they don't like to use them. All I can say is let him know how much you love him.

[Mogi2002 in reply to Valbri]

Thank you Valbri. I'm sorry to hear your story. We are trying our best to help. I'm thankful for all the advice.

[LaritaSalazarexxl]

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