Here we are...once more ( hopefully).

[goldcap]

In ER with hubby and looks like yet another UTI run rampart through his system. Thought it was beginning of end. He could not put any weight on his legs the last few days and could not / would not eat very much. Only wanting to sleep. He has also been leaning to one side in his chair and slumping his chin into his chest which actually makes it almost impossible to keep anything in his mouth long enough for him to chew and swallow it. And crazy drooling. Did not get all the talk about drooling. Do now. He has also been sleeping in fetal position. Never did this before. Have a feeling these new developments have nothing to do with the UTI.

[jzygirl]

Get them to do a bladder scan because he might not be emptying his bladder fully. And if he has got a distended bladder he will be in a lot of pain hence fetal position. Good luck and big hugs Janexx

[abirke in reply to jzygirl]

Smart words jz

[goldcap in reply to jzygirl]

Jane, he had one of those years ago and they did determine he was not . He took mediciation to help him empty his bladder more completely but stopped when he had a Foley catheter put in. Before the catheter was placed he experienced exactly what you suggested( wish I had asked you then lol). His stomach was hard and distended then and when they finally figured it out and placed the catheter he filled 3 bags in a row. He is in the hospital right now and it is a bladder infection. They just changed his antibiotic to one more broad based and I am concerned the infection may be more systematic. This happened once before when he had a UTI. Blood infections are scary. He does not want a sub public catheter but supposedly you do not get as many infections. I am so tired of the whole hospital scene. The admitting nurse kept asking if PSP was like ALS. Another write down that he had MS. It was 2:30 am and we had been in emergency since 7pm the night before. I just wanted to go home and have a glass of wine and sleep. Really had the urge to bitch slap the one that kept saying , " But he has MS doesn't he? She( other nurse) said he has MS!". Like I don't know what condition my own husband has. Thanks for reply/ advice. Know you get it.

X Jayne

[NannaB]

You may be correct Goldcap. C hasn't been able to stand since last Christmas and now always sleeps in a tight foetal position. He leans to one side, but not always the same side so sits with a pillow to prop him up and shoulder straps on his wheelchair. He hasn't had a UTI. With C it's a progression of the condition but I hope in your husbands case, it is a UTI and he improves when it has been treated.

X

[goldcap in reply to NannaB]

Nanna, I fear you are correct. The fatigue and lack of appetite is probably from the infection but the other things are spot on for signs of progression of PSP. He is hospitalized and getting an IV of antibiotics as I am writing this. I am so tired from being here most of last night. Had to cancel a medical test for myself today. But what else is new. Sorry, correct me if I'm wrong but your husband has a PEG but not a catheter right?

X

Jayne

[NannaB in reply to goldcap]

Yes Jane, he has a PEG and wears convenes. I hope you get a good night's sleep tonight.

X

[MaiSalah in reply to NannaB]

Sorry NannaB. What is PEG?

[NannaB in reply to MaiSalah]

Hi MaiSalah, it is a narrow tube that goes straight into the stomach for giving food and water. I can feed my husband with a large syringe or fit the food bottle to a pump which feeds him automatically. The pump can be put in a special back pack so I can feed him if we are out of the house.

X

[MaiSalah in reply to NannaB]

Thanks Nannab.. i guess your lovely husband is having a later stage than my dad.. we still feed my dad in the usual way but ofcourse with food and drinks spitted all around.. take care and thanks.. xx

[Kevin_1]

Liz and I are thinking of you both

Hugs from both of us.

xx

[goldcap in reply to Kevin_1]

Thanks Kevin, and give Liz a hug from us and give yourself one as well

[Amilazy]

Hi Goldcap I hope you have some rest and the antibiotics are working.

Slightly different situation M being female but she has both PEG (18 month) and urinary catheter (foley type - 6 months) she has been crunching up for about a year but left lean about 5 months, sleeps in foetal position though likes to drop off in raised position to combat chokes. I would therefore say your hubby is in PSP progression exacerbated by infection.

Best wishes Tim

[Christine47]

Hello! Sorry to have missed your post yesterday. I hope your hubby is doing better. And that you are able to get some rest.

Christine

[easterncedar]

Hi, Jayne! Sorry I didn't respond earlier; I was on the road, coming back from staying with my mother for 9 days, to spell my sisters who have been there in turns for the past 2 months. i am so grateful to the VA for caring for my sweetheart so I could do that.

So, now it's two days after your post; things sounded really dire. What's going on now? I hope the antibiotics have worked a miracle for you. Do let us know how you're doing. I hope you are not neglecting your own self too much now. Love, ec

[goldcap in reply to easterncedar]

Hi EC, glad you had the opportunity to take care of your mom. I did the same with my mom to give my sisters a break. You will never regret doing it. ( I know it's easy to feel pulled in seperate directions). Just wish you could have had more you time.

My husband has aspiration pnuemonia. They are starting a new antibiotic. If he recovers and can go 24 hours without a fever he will go into a rehabilitation facility. I do t know if he's strong enough or has the desire to fight this fight. Only time will tell. He is somewhat responsive and has taken small spoonfuls of puréed food. Now would be PEG time but it was his wish not to have one. He has it written down in a living will so I intend to honor his wishes. I have been riding my bike to the hospital. So glad now we live in town! Long days here and going home to an empty place hurts. I am not ready to lose him yet. But I told him if he does not want to fight this I will be ok. Thank you for caring.

Hugs,

Jayne