I hate this illness

[Yvonneandgeorge]

George is coughing so much bring up all this horrible green stuff, he has not got a chest infection, is this normal? He makes terrible noises in the night, I was awake all night, so frightened all night for George, things seem to be moving so fast, anyone else with these problems?  He does not look very well again xxxxxx

[Escada29]

Hi sounds like an infection to me but I am not a doctor and what do you mean by things are moving fast???  Do you mean he is going down hill fast?

[NannaB]

Sorry to hear you are both having a rough time.  Have you spoken to the GP about the green stuff?  C makes a lot of noise most nights and during the day. At the moment he is growling with every out breath.  He has indicated he isn't in pain. He also does a rutting deer noise or a motor bike revving up and has done for more than 2 years. CHC gave me night staff as I wasn't getting more than 3 hours sleep in short snatches. I still don't on Saturdays when I'm on my own. 

PSP has some strange symptoms doesn't it.

I hope you find out what is causing the green stuff and also hope George is comfortable dispite the changes taking place.

Sending you a big hug.

X

[Yvonneandgeorge in reply to NannaB]

NannaB feeling so sad, yes we he breathes he makes some strange noises, that is what worries me the most, I have asked him if he is in pain, he always says no.  Just sat on the bed with him today, went back with him over the years, so much has happened, a lot of lovely things be a few horrible things, it just seems so unfair I am fighting this horrible battle, and our eldest daughters problem, and I feel so alone without him by my side, it seems like there is no end to all of this illness.

He had a chest infection last week, DN came in and said his chest was a clear, he has just finished antibiotics, seems like he has so much flem.  Just feeling sorry for myself today.  He seems like he is also coughing more.

Sorry to moan xxxxxx

[NannaB in reply to Yvonneandgeorge]

You're not moaning, just saying how it is. I was thinking the same today....there seems no end.  Then I thought, there will be but not in a good way.  I want my darling to be free from all this but I want to be with him as well.  We've got to hang on in there but we don't know how long that will be for.

I hope tomorrow will seem better for all of us.

X

[easterncedar in reply to NannaB]

Growling it is! And humming and moaning. So few words, but lots of sounds. I say he is making wildebeest noises, or like a bear, and we laugh. Sometimes I can get him to change the moaning into singing, of a kind, and that is to the good, but sometimes it makes me want to moan right back!

[ellie7676]

Yvonne   I Am not ready to post yet, I'm still crying most of the day, but I just needed to send you love and a big hug I know what you are going through.

Love to you  and George

[Yvonneandgeorge in reply to ellie7676]

Oh Ellie sending you a big hug xxxxx

[psplife in reply to ellie7676]

yvonneandgeorge and ellie7676

Breaks my heart to read your posts! We are new to PSP and it SUCKS! I cry alot too. I cry when I am driving, I cry when I am running, I cry in the shower, I cry in the garden, I feel like all I do is cry! I never let my guy see me cry because I know it would break his heart. The hardest part is losing a part of him every day and also losing a part of me because we have been consumed by this awful disease. Our lives have been turned inside out with no happy ending in the future! I just pray for BALANCE in my life and know that if I am weak then I am no good to my guy. I look for activities that bring me peace--a run, a fitness class, gardening, projects around the house when my guy is resting/napping. I can't worry about the future and I try not to feel sorry for myself. I do make sure to try and prepare for what is to come--wills, financials, home care, etc. I can't do this by myself and have slowly added members to TEAMHODGSON. When I am crumbling, I think of those balance rocks and ask myself, what is out of balance? Is my job giving me more stress then I can handle? Is my health in trouble? Are the home chores overwhelming? Then I try and find something that can help me fix the problem and get back to being balanced. I don't know if that makes sense. There is a TED video with Lissa Rankin and l love her message about finding your inter-pilot light and her wellness model. It makes perfect sense to me. I try to think of her wellness model when I cry and ask myself why I am crying and then try and make sense of it and get back to being balanced. Don't know if that will help you, but I know exactly how you feel and it is okay to cry. This site has helped me so much because I know that I am not the only one who has felt overwhelmed by this awful disease! #ihatepsp

Keep in touch and good luck,

Nikkie

[Mk10 in reply to ellie7676]

Hi Ellie,

So sorry to hear how much you cry. I do too!  Especially now since my husband woke one morning having had a stroke in the night.  On one hand at least he is being nursed in hospital very well and on the other hand I know that it will not be me taking care of him from now on which is hard to bear.  Make the most of the time you can do the caring and get all the help you can.  You have not said much so I hope you are getting all the benefits you are entitled to.  My husband was only diagnosed a few months ago so things can move on very quickly so try to do something together and enjoy whatever you can still share.  Love and hugs. Xx

[Auddonz]

Yvonne, Green stuff is usually an infection. Would call  the Dtr, if I were you. How long ago was he diagnosed?

[Yvonneandgeorge in reply to Auddonz]

Hi 2014 but we think he has had it at least 4-5 years before xxxxx

[Auddonz in reply to Yvonneandgeorge]

What makes you think he had it for 4 to 5 years before. xoxo

[Nanny857]

Hi Yvonne, so sorry you are going through this.  I would ask GP to see him again and possibly another antibiotic. 

W had a terrible deep cough 3 weeks ago and was bringing up green flem.  Eventually he agreed to see his GP who said his chest sounded quite clear, but as W had PSP he would give him an antibiotic and to come back if it hadn't cleared.  Thankfully no more flem and cough almost gone.  

Although I'm are not there in body with you, (I wish I was, to give you a big hug and support) I am holding you in my thoughts and prayers.   Lots of love, Nanny857 xx.  

[Patriciapmr]

Dear Yvonne, I'm so sorry you are feeling like this, it's so horrible, we are all here for you and will chat any time you feel like it, I'm feeling pretty much the same, waiting for some kind of miracle cure to end all this suffering, yet doubting that will never happen!

Sending you a great big hug Yvonne.....Pat xx😘

[Yvonneandgeorge in reply to Patriciapmr]

Thank you all for your kind words, going to get in touch with the speech therapist on Monday, and the doctor, also going to ring professor at the hospital see if I can get him an appointment, when we go to see another doctor there in May, it will be worth a try.  Love to you all, we are all going through this long journey together at different points.  🌹🌹🌹🌹🌹 xxxx

[easterncedar in reply to Yvonneandgeorge]

I hope you got some help by now, Yvonne.  Coughing is hard to bear, exhausting for both parties, so painful and worrisome.  Good luck!  I will say the atropine seems to be helping my guy and his gooey, phlegmy coughing.  We have hardly needed the suction machine at all since I started giving him a drop in the morning and one at night, although it does seem sometimes to make him restless, and then I skip a dose.

[Yvonneandgeorge in reply to easterncedar]

Easterncedar I managed to get an appointment with the professor at the hospital, for Friday, so feeling happy, even though it is a 2 hour journey. Hopefully we will get some answers.  Yvonne xxxxx

[easterncedar in reply to Yvonneandgeorge]

I will keep my fingers crossed for you.  We drive a bit over an hour and a half each way to his place on the weekends, and I love the trip.  For that time he is safe and I have nothing to worry about but animals on the road. I doubt your route is so easy, but I hope you don't mind your trip too much!

[Amilazy]

Sorry late to the replies, but green or yellow means infection in my book, M makes a lot of noise at night quiet as a church mouse most of the day.  Her saliva no longer under control, waiting for neurologist and Botox consultants to get their heads together end of month.  The saliva causes her chokes at all hours but more frightening at night.  She has started having sneezing fits as well coughs and chokes sneezes always bring up lumps of catarrh usually clear but more worryingly lately blood speckled.  As usual DN and GP say her chest clear so nothing to worry about but of course I do.  I agree with getting your professor to look at him.

Best of luck Tim

[Yvonneandgeorge]

Thank you Tim I think it is catarrh that he is bring up, it is light green now, makes so much noise during the day as well as night, it is so frightening, they always say George's chest is clearn, but I can hear all these noises on his chest, it worries me so much, I feel so useless.  Auddoz George had not been well for a long time before he was diagnosed with PSP, he had a lot of the symptoms, our GP said it was nothing to worry about, but I knew it was something to worry about, expressed my concerns, nothing done, he had the coughing, falls, very aggressive, started using a walking stick, he was diagnosed in Cyprus when we went away took him to a private doctor, for his diabetes, it was high, but that doctor said I think you need to see a neurologist, they have one there, he was amazing, for 50 euros he saw George for one hour, he diagnosed him with PSP, told us he had worked in queens square in London, he had worked there, we did that on our return, and here we are nearly three years latter, traveling on the horrible road.  Yvonne xxxxxx

[cabbagecottage]

Have u tried glycoppyrate it helps dry up mucus

[sammy90210]

sometimes patients are weak and an infection can come back - my dad had 3 chest and UTI infections a few days after each other - does he have a fever as well? I think it's best to get a chest X-ray - a chest checkup with a stethoscope cannot reveal some chest problems like pneumonia I think

[jillannf6]

khi all

he  chest infections are v difficult to deal with  and without ,medical help will not get better

lam lucky  in  that i haven't  had many yet and  ofo course i do n ott want them nbut in the future wh knows??lol,#

jill

xxxx