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PSP Association
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Taming the Hyena

Charles had been up for three nights coughing and coughing. It is so distressing and I'm so helpless. Nurse said it can change from wet to dry and will continue. It's an ongoing problem.

I asked whether his swallowing ability is going away and she said no. But I wonder. He is afraid to eat lest he cough.

Anyway, the hyena is still here.

Cuttercat

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If his cough is due to excess spit /phlegm maybe try glycopyrrolate My hubby has had bad coughing for a long time and was getting worse. the med has really helped. Coughing is not completely gone but so much better . He coughed when eating also because of the phlegm build up. His swallow test came back OK. xxxx

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I've asked my nurse about it and perhaps we can get the same for Charles. Is this the new normal at this stage? It appears to be in the head and running from sinuses into throat. Thank you so much for suggestion.

CT

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Well, what do you know, the drug is ILLEGAL in the United States. I assume it's used in operating rooms in the other venue but not available for individual use.

We are using Hyoscamine and it seems to help but I think there are side effects and things that aren't good but we are stuck.

Thank you so much.

Cuttercat

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Glycopyrrolate??????? Dave's neuro gave him a prescription !!!!! Can't be illegal!!!! We are in the US!!!! Think there is a miscommunication somewhere

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No, apparently Hospice won't use it. Charles hasn't stopped coughing for seven days and mosphine high doses aren't helping.

Nearing the end.

CT

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It just shocked me to read that it was illegal in the US as our neurologists prescribe it a lot esp for their Parkinsons patients. I am so sorry and hope Charles gets some peace soon. (and you) Hugs xxxxx

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Dear Cuttercat

So sorry to hear this you must both be exhausted. Do hope things will settle soon

Sending love and hugs

Tippy xxxxx

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Oh Cuttercat it’s horrible isn’t it the coughing, I think it is one of the worse things with psp. It does ease off, george is coughing but not so much, I hate psp so much. Sending you a big hug. Yvonne xxxx

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Boy do I hate PSP. He coughs alot now but it came on suddenly. Weird huh.

Like I said above, seems to be from head/sinuses and draining into throat. A wet cough. Is this what happens to George?

Yes, this is awful. Sleep is elusive.

CT

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Yes just how George was still coughs but not so bad, yes the sleep is the worst issue, no sleep no patients xxxx hope you had a better night, I have been up since 6 o’clock he was banging the bed, hugs Yvonne xxxx

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A bit better last night but lack of sleep on my part is hard. I get grumpy and slap happy. Anyway, what are you using for George now to help with the cough glycopyrrolate?

Anything to help him. I cry seeing him like this. It just keeps breaking my heart, like everyone else here.

Love,

Cuttercat

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Sympathies, Cuttercat..Any symptom that goes on for years and years must be absolutely draining for you both!

Is he choking as well? Is he on pureed foods? You've probably said in earlier posts as I know you've been here awhile but i forget.

In case you missed it, daffodil 48 did a post on glycopyrrolate - just 21 or 12 days ago. Hope it's helpful.. You both must be so tired...xxx

Anne G.

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So sorry for you and Charles, I'm sure it is very distressing for you both and tiring. Hope glycopyrrolate helps if you decide to go for it. Big hugs to both of you (( )) Nanny857 xx

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Gosh, Cuttercat, I miss my son, but when I am reminded of the suffering and limited solutions, it eases my "hurt".

My prayers to you.............

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So much suffering. Can't wrap my head around it.

Love,

Cuttercat

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Cuttercat this sounds all to familiar . Mom started the coughing about 3 days ago. I was told to not give her things that make it hard to swallow. Milk, ice cream things like that.

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Yep to all the dairy. We stopped that months ago and he lost so much weight it's awful. She will too so be prepared.

I'll try something else. Isn't it just harder and harder all the time.

Thanks,

CT

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Have you tried almond milk, coconut milk etc they aren't dairy. Hope the glycopyrrolate helps. My husband is not as advanced as you. his is slow progression , about 4 years in now. Unlike you guys getting the coughing problem farther on, mine has had the cough for a long time now and was getting so much worse so decided to use the med. According to the doc, he isn't swallowing automatically as much any more so spit builds up and makes phlegm. As I said before he still has the cough but much less . hope it works for you if you try it.

xxxx

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I hope we can work something out. Each patient is so different. Whew.

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Hi Cuttercat!

Sorry to ear your problem.

This is our experience:

•Persistent cough. Use the syrup recommended by the physician. To avoid in the diet: coffee, carbonated beverages, chocolate, orange or grapefruit juice, helps.

•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.

•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 with a few drops of Eucalyptus essence and a small spoonful of Vicks Vaporub (Olbas Oil in U.K.) with a towel covering head and bowl helps. (One to three times a day.) Medications like "Mucosan" (Ambroxol hydrochloride) in the morning and in the afternoon help.

•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.

•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.

•Avoid dairy products, especially before bedtime seems to avoid the increase in viscosity of phlegm.

Hugs and luck.

Luis

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