Hi all we went to the hospital yesterday, not good news George has got a lot worse, doctor spoke about having a peg fitted in the near future, his coughing and the funny noises he makes is all to do with this bloody PSP, I hate this illness so much, he has lost so much weight, it is so sad, he was so tired, he fell asleep while we were with the doctor. One good thing was the doctor was so lovely, she spent nearly 2 hours with us, the proffesor even came in and spoke to us, they were so lovely, doctor said if you need to call us for anything, we are always here for you all.
Also she asked if we would like to meet up with another family who are going through all this, I said yes would be lovely, doctor said she would organise it.
This journey is getting so difficult to live with, and so very sad.
This morning he was so tired he could not get out of bed, when we managed to get him up, we had to feed him, he was to tired to eat. They also said he needed a new wheelchair, so more phone calls on Monday.
Hope you are all ok xxxxxxx
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Yvonneandgeorge
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Sorry to hear about the exhausting journey. One point I can help you with is the PEG. Margaret has had one for over a year now, it was like a miracle her choking reduced to occaisional rarity until he drool increased.. It also stopped her weight loss and allowed her to regain weight and calmed her. I would encourage you to discuss getting a PEG with your GP, dietician and nutrician teams. You can have 2 types, Bolus feeding and machine feeding. The machine pumps food slowly either through the night or over the day (Ketchupman can describe), bolus feeding is manual feeding using a syringe this is what I did for M feeding her 4-5 times a day we found it very soothing and bonding. It is an easy procedure and will help both of you.
I agree with Tim, B lost alot in a short time before the peg. And regained almost all of it after. He has lost muscle mass but feels healthy. We do the Bolus method, and it is indeed a time to do soemthing together!
Good luck when he regains nutrition, he will regain strength
I so feel for you Yvonne. Don is going downhill as well. He is starting to loose his balance more and instead of titling backwards he is tilting forward. He woke me up at 2 last night with a bang. He was literally leaning forward on his walker which was in front of a small table I keep next to his bed to put pills on or whatever. That was the only thing that stopped him from falling completely. He also has lost a lot of weight and is very tired all of the time. I am trying to talk to him about the future and he won't say much. Like a peg, how much do you ant done to keep you alive and with me. He really doesn't say much and I m not sure he understands at this point. He coughs mostly at night which is weird and I am so tired I can't see straight. Not sleeping at night is taking its tole. Wish we had someone here I could talk to but don't. It's a very lonely life and so very sad.
My husband seems to have suddenly gone downhill in a matter of a couple of days, Friday I had to help him dress for the first time, other doing zips and fiddly things, and he had 3 falls in the same day, whereas only the odd fall, but for the first time he also leans forward as well. Yes I feel the loneliness so much, nobody understands other than others on this site, not even family
I wish we could be put in touch with someone nearby!
Debbie, I have been having the same thing with mine. He needs help dressing and undressing as well now, just in a few days. He can't get his pants on or off as well as his shirts. Not eating well and the off balance is driving me crazy. I made him walk back and forth in our house 4 or 5 times just to get him moving instead of in bed or sleeping on the sofa. Does your husband use a walker? He should have one with him at all times.
Are you in the US? We are. His PT, which is not going to anymore, said she has another patient with the same thing and will tryto peak to her about us. I hope she does so that I will have someone who is going through the same thing. Your so right family does not understand.
We're in UK, but the symptoms are still the same aren't they, last Tuesday the hospice gave us a short term loan of a walker to try, it stayed in the boot of the car till yesterday now he barely moves without it, I call that a rapid decline! The same as he dressed himself Thursday but Friday I had to help, I know it's a rapidly progressing disease but that's a bit extreme xx
I went to a pspassociation get together last week The first one in my area and to my utter amazement out of the six or seven sufferers attending ..two lived within a 15 minute walk of where we live. It helped me immensely to think we can meet up for coffee or chat but my husband was totally apathetic and said it made no difference to him. He's right I suppose . X
Keep going to the meetings, even if you think your husband isn't getting anything from them. You will, which is bound to improve his life! S likes going, I think it helps him understand what we are BOTH going through. Great that you have two families close by, much needed support for all of you!
Where in the UK are you? There are quite a lot of PSPA local groups now. They are very good if you can possibly get to one. We are lucky that ours is quite near us but people travel quite a long way to to be there and there is a nice supportive atmosphere.
I'm new to the site today. I live in U.S. Your post is so familiar. Yes, three falls in one day and then nothing for awhile. Makes you confident and then....boom.
I feel so lonely too. Friends think when I'm home I'm enjoying his company. I am but he can't talk. All of it is sad and terrifying.
I'm in the same boat. He gets up to the bathroom in night and I'm afraid even though it's 4 - 5 steps. My sleep is always interrupted and I haven't had a good one for 2 years now. I'm hoping to go away for one night but as everyone knows that's an ordeal in itself.
Take care and thank you for your support. We all need it.
This ruddy illness is so confusing, there is no regular pattern to it. If there was, we could be prepared and organised. I don't know about you all, but it is the uncertainty and sudden changes that wear me out! X
At the beginning I longed for a magic wand to make all this go away. Now a glass ball to tell me the future, would suit me just fine! If only to warn me what tomorrow will bring. Collecting S from two weeks in respite. With two people looking after his every need, will little olde me be enough? They have up his care package, from one to two Carers in the morning, but no sign of evening care yet!
You've got the love that he needs, so in this case, one is better than two. However, it doesn't help you or your back! Hoping that you get the extra help soonest. X
Oh Yvonne, it's so hard isn't it. S has had an appointment come through to check his bones, due to a recent break. Don't think I going to bother! The effort is just too much. Anyway, it's obvious that there is nothing wrong with his bones. He would have broken every single one by now!!!
Do you not go to your local PSPA meeting? That really is worth making the effort for!
Going to collect S from respite tomorrow. Looking forward to having him home, but dreading how I will cope now. He has to have two people helping him to do everything, they have upped his care package, but only in the morning. I am still going to have to put him to bed on my own, until they can find some more help for me! Back to having to boxing gloves on again. I think that has been the best part of him being in respite, no fights with officials! Apart from minor ones with the home, kept leaving off the strap that holds his Catether bag in place. Most of the time it has been left to dangle!!!
Wow. That is a lot of time with the Doctor. We usually get about 45 minutes, which is a lot. Probably why it is so hard to get an appointment, especially for a new patient. I think when office staff find out you have PSP, they should "gold card" you, and work you right in.
I know I wanted to meet others with PSP, but with our HIPAA laws around privacy, no way would medical professionals ever hook you up with another family. That's why I formed a special support group at our local Parkinson's support center. And CurePSP has me listed on their website as a support group leader, so I get a lot of referrals that way too.
It does get lonely and tiring. Kim is pretty much a mute. But guess what? We're still madly in love and that's all that matters. I can always talk to myself. I just won't let anybody catch me doing it.
Heady just typed a reply not sure what happened to it. Hope you got all your building work done, and you had a rest.
Must be uncomfortable not putting the strap on the leg bag, DN brought us some elasticated leg bands which fit above the knee they are really good, just wash and reuse.
We are lucky Heady we have careers coming in to put George to bed, they come in at 8 o'clock so get a few hours for me.
Not been to a PSP meeting they are quite far away, and we always seem to have something on the days they have them.
Sorry to hear George is so ill. But glad you felt comforted by the doctors. It makes such a difference to feel cared for.
One of the most frustrating things for me is how it varies so much. Chris has needed help dressing for ages and support sitting, standing etc. I bought him an alarm to call me but he often doesn't use it. So I am constantly on alert and it exhausts me. Sometimes it feels he deliberately messes me about. I tell myself its PSP but don't always believe it.
Jean I have been dressing George for the last few years, it is exhausting, George is always calling me asking me to come to he's chair, than says, he can't talk our he has forgotten what he wanted me for, I think the worse thing is he always wants to go to the loo, for a phoo but never goes, everywhere we go he wants to go, but never does, our just when dinner is ready, feel like screaming.
We all need so much patience, not sure where it comes from. Sending you a big hug. Yvonne xxxxxxx
I normally get J with coat / jacket on sitting in wheelchair ready for the off to get out of the flat and then its " I need a poo" so infuriating lol x
Sorry to hear that things are so difficult for you both. I too hate this illness with a passion but keep strong if you can Yvonne and try to look after yourself.
So sorry to hear this news. I just don't get how this disease can be just so darn ugly. So much suffering for everyone. I am trying not to think too far ahead into the future but when I read what others are going through on this site, it is devastating and hard not to think of what is coming. UGHHH! I am thinking and praying for both of you and all our friends on this site. Hang in there.
Thank you everyone on this site is so lovely I just wish I could pick you all up and take you all somewhere nice, for you all to have sometime to relax, and to forget about this horrible journey we are all going through, I would like to raise a glass to us all, for doing such a good job of looking after our loved ones. 🍸🍸🍸🍸🍸🍸🍾🍾🍾🍾🍾
Don't say that of course you deserve it, you look after your partner, does not matter what, you have got a halo, you just can't see it , but others can. 🌹🌹🌹🌹🌹
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Its a very lonely life.
