Battle

[Kathy]

We seem to be waging a constant battle against sores of all kinds at the moment as soon as we get one lot sorted another breaks out somewhere else. So far, they have all been fairly superficial but still uncomfortable for Mum

We change Mum's pad regularly, and move her position regularly, She has a pressure relieving mattress on the bed and spends 1-2 hours on the bed during the day. she has a sheepskin pad on her armchair and a pressure releiving cushion in her wheelchair.

In addition to the sores on her bottom, she now has mouth ulcers again so she's being "attacked" from both ends!!!

I know it sounds childish, but it just doesn't seem fair! hasn't she got enough to deal with??

[jillannf6]

hi Kathy

so sorry u r both having

a hard time fo it a tthe moemnt

lol JIll

try and keep smiitng i know it si impossibel a ttimes

ps i only learn t asmiley face not a frownign one!

[Kathy in reply to jillannf6]

Hi Jill,

Thanks for replying! I hope you are keeping well??

I'm not sure if I should tell you this - maybe its a good thing you can only do smiley faces?!?

But if you do need a sad face use the ( bracket instead of the ) one!!

Take care

Love Kathy xxx

[dllera]

Oh Kathy. I am sorry to hear you are having so much trouble. PSP is not fair and frankly it sucks. I'm sorry I don't have experience with the bed sores - my dad only had a couple of red spots on his hips near the end that never broke or anything. We put A&D cream on him and used LOTS of pillows to keep those areas "up" off the mattress and of course rotated very often like you are doing. Sorry I can't be of much help or know of any tricks. Sounds like you are doing everything you can but yeah it still sucks. Hoping for better days soon!

Danielle

[Kathy in reply to dllera]

Thanks Danielle!

[CateT]

It sucks so much Kathy and yes, it is not fair!! PSP is not a fair illness.

Thinking of you and hoping things get a little better.

[Kathy in reply to CateT]

Thanks Cate!

I was thinking of you just yesterday and wondering how your Mum is now?

love Kathy xx

[kay1]

too damn right Kathy - it isn't fair, you are doing so much for your mum and then "fate" introduces another set back, all we can do is try our hardest with love and as much comfort as we can for our loved ones.

thinking of you

x

[Kathy in reply to kay1]

Thanks Kay.

How are things with you?

love Kathy

[kay1 in reply to Kathy]

Frank is getting frailer and voice weaker, he still has a voice though, he is still feeding himself, and will be 90 this month, I have fingers crossed that this will give a little hope to some of the other families. I do wonder sometimes, because of Frank's age, PSP progresses more slowly - just another theory to go along with all the others x

[Kathy in reply to kay1]

Hi Kay,

I'm glad Frank is still able to talk to you but sorry to hear he is getting frail

I hope you are able to celebrate his birthday in a special way

Much love to both of you

Kathy xx

p.s And HAPPY BIRTHDAY Frank!!!

[jimandsharynp]

Cathy, Sorry you are having such a difficult time at the moment. There are so many "side" struggles with this PSP disease. Thanks for posting because some of the answers have suggestions that will help me and others when we get to that point later in this sad journey called PSP.

()()()() Jim P

[Kathy in reply to jimandsharynp]

Thanks for your kind comments Jim x

[CateT]

Hi Kathy,

My mum is back in hospital. Turns out she has a urinary infection but she was admitted for something different. Her medication was changed and she suddenly couldn't walk at all, she wouldn't/couldn't open her mouth to eat or drink, couldn't swallow and she just seemed like she was sleeping all the time. We didn't know if it was a terribly sharp decline in her illness or the new anti rigidity medication called baclofen. Makes me mad that medication for this illness is so trial and error. Again hopefully the new care pathway will help with this.

She was taken to hospital as she was losing so much weight and was dehydrated. There has been a lot of talk of a PEG from medical professionals. However I was at the hospital today and she was so much more alert and she ate tiny pieces of fruit and drank and even said a word we could hear so - so she is very much better! Probably was the medication. They have also taken her off Sinemet and Amatryptaline recently.

Bet you wished you hadn't mentioned how my mum was now It is always a mouthful recently. How is your mum?

xx

[Kathy in reply to CateT]

Hi Cate,

I'm glad I asked how she is!

For some reason (maybe because we have a similar name - my Mum used to call me Kate) I feel "close" to you and your Mum and often find myself thinking of you - especially if we haven't heard from you for a while! I know how difficult things have been for you recently.

I'm sorry to hear Mum is back in hospital again but very glad to hear she is a bit better now they've taken her off some of her medication. I hope she is home soon.

Apart from the sores Mum is not too bad at the moment. She's had 4 lots of antibiotics for urinary infection in that last 6-8 weeks but, fingers crossed, I think we're clear of it for now! Her appetite is hit and miss and most days now she needs help to feed herself but I guess things could be worse - we're managing to avoid hospital, which is a big bonus!

Lots of love to you and your Mum

Kathy xxx

[jimandsharynp in reply to Kathy]

Kathy, I'm a man so I'm not certain how you know a female patient has an urinary infection. If you know please fill me in. My wife has PSP and I want to be prepared to identify this type of thing. Thanks.

[Kathy in reply to jimandsharynp]

Hi Jim,

Generally speaking, if the urine becomes cloudy, rather than clear, or if it begins to smell its a pretty good chance there's an infection. In addition you might find your wife has problems controlling her bladder or feels the need to empty her bladder more frequently.

Hope this helps

Kathy x

[jimandsharynp in reply to Kathy]

Kathy, Thanks. Her urine isn't cloudy but smells strong most of the time. I put this on medications but am now wondering if it is bladder infection. She isn't drinking much, I must force it more, and that could also be a reason for the strong smell. No frequency at all currently. Again, thanks.

[Kathy in reply to jimandsharynp]

If the urine is dark in colour as well as smelly then it is most likely to be that she isn't drinking enough. Apparently urine should be the colour of white wine, not sweet sherry!!!

It may well be worth dropping a sample in to the GP though, just to be on the safe side.

[jillannf6 in reply to jimandsharynp]

hi jjim

i hav e PSP and get a coupel fo bladde infections eahc yea rnow - cystitis and the urine is cloudy and it is v painful to pass any

antibiotics r essential and hten it will clea r up

probelsm getting to the toilet on time too

hope this is soem help

lol JIll

[jimandsharynp in reply to jillannf6]

Jill, Thanks for the first hand information from someone who's been there.

Jim P

[marytea13 in reply to Kathy]

Kathy I noted your mum has had lots of antibiotics for urinary tract infection - maybe some probiotics could help your mum's sores. The anticiotics destroy good bacteria & probiotics can help restore good ones. Probiotic can be expensive & have to be ketp in the 'frig.They are stronger than youghurt which I use every day but got 'thrush' from antibiotcs for chest infection. Cheers Marytea13 in Western Australia!

[Kathy in reply to marytea13]

Hi Mary,

Mum has a probiotic yoghurt every day, too but thanks for the suggestion

[marytea13 in reply to Kathy]

Kathy the youghurt is good but does not have enough of the 'good' bacteria in it to make the difference needed after antibiotics as I found out to my great discomfort u have to find a chemist that sells the probiotics - one brand is ethical nuticals but there are other brands fairly expensive but worth the cost.

[Kathy in reply to marytea13]

Ok, thanks! That is worth looking into We've also just started her on soluble vitamins as she isn't able to eat mich fresh fruit these days.

Thanks again! xx

[marytea13 in reply to Kathy]

How are things Kathy? Did u get the Probiotics? I was told to take the lot of them but didnt do that only until problems had cleared up. The Probiotics are expesive so I have them in the frig to use another time if I need them. Cheers Marytea13

[clara in reply to CateT]

Dear Cate

I have just seen this post - my mum is on Baclofen daily, up to 3 tablets a day and they tell me it is an 'anti-spasm' medication, as her catheter leaks all the time, and they say this is more due to spasm. I dont think it is a powerful medication, it doesnt seem to have had much effect on my mum, but I know everyone is different. The one that knocked her out was a sedative called Clonazipam, to make her stop crying out and moving in her sleep - which seems impossible I know, but she was, and then paralyzed again when she woke up. It made her so spaced out we stopped it. Mum also been told to come off Sinamet but she is a bit too addicted to it. Let us know how your mum gets on with the baclofen.

Much love

Clara XX

[villagebabe]

Don't know if this isany help but I credited the great hospice nurse whogave regular rubs on his skin to prevent bed sores even tho he wasbedridden fromcancer for 9 months. Sherubbed any spots that got red AND said it was important in those places. She rubbedhim with lotion and he never got any open sores. Once they come they are very hard to get rid of.Sorry for the mistakes but I have psp and my typing is terrible. Lucille

[marytea13]

Hi Villagebabe I am an exnurse & during my training at St Vincent's hospital Sydney (great one!) We did not have enough time to do pressure area care on night duty & the neurologist came to see us to aske what we did. Our reply was we turn everybody every hour it was quicker & more effective. Marytea13

[CateT]

Hi Kathy,

That is lovely and means a lot. Funny, I am Cathy to most but always Cate to my mum and dad and that is probably why I use it on this site. I've always thought there are too many derivatives to choose from when you are Catherine/Katherine ;).

I'm so glad things are relatively stable for you at the moment. That is the most we can hope for with PSP.

Lots of love

x

[peterjones]

hi to everyone i got psp in the 2004 i fall backwards quite a lot and my speech is getting worse but im still breathing and looking at the grass from the top down so lifes not to bad i can only say to people with psp which had never heard of before keep trying dont give in

to feeling sorry for yourself which is quite easy to do my love to all of you take care

by the way i take one table spoon of virgin coconut oil every morning it seems to give me more energy i dont know if this is in my mind or not just thought i would mention it

my 2nd attempt at this what do you call it a blogg peter jones brisbae australiaq

[marytea13 in reply to peterjones]

Hi Peter Marytea13 here I'm a blogger from Perth W A! I was diagnosed dec 2011. I keep trying by way of learning to play bridge which I go to on Mondays midday & now extra lessons on Thursday mornings.

cheers

[peterjones]

hi kathy im very =new to this but not new to psp i have had it since 2004 and i have my ups and downs the downs being the falling part but be positive i know its easy to say but i have a very positive wife and she keeps me on my toes i still have to do the washing up and emptying the garbage bins etc i am glad that i have found this healthunlocked i do not feel so alone now thanks guys and girls good luck to you keep smiling and your chin up

peter Jones australia

[peterjones]

hi marytea from perth WA it was nice of you to reply keep up with your bridge mate i know you will do well best regards peter jones australia brisbane