Coming up for air

Hi folks

I have been so busy recently that getting time to visit the forum has been impossible.

Some of my being busy has been sleeping late after numerous toileting sessions through the night.

Liz is slipping away from me little by little. Two weeks ago she started asking me to confirm what was real and what was not. She is very drowsy now and sometimes barely awake and so she sometimes doubts what is going on is real. At least that is what I think might be happening.

Two weeks ago she had a botox treatment in the hope that it might help her open her mouth more. So far there has been no change, but we were warned it could take up to three weeks to have an effect. The doctor also said that it would relax the muscles which keep her mouth closed, but that if it were weakness in the muscles opening her mouth then it might be to no avail.

I hope to catch up with the forum over the next few days.

We have had miserable weather here for many weeks and today is warm and sunny so I hope to get Liz outside.



49 Replies

  • Hey you, welcome back!!!!! I'm sorry to hear about Liz, this stupid Psp robs our loved ones of literally everything!! In the meantime my lovely, you must be exhausted?! Sending you both huge hugs ❤️ X

  • Thanks Amanda

    Coming up for air again today!

    Things are going very will with Liz and I. She is less 'difficult' now she has deteriorated a little more.

    However she did wake me with the bell at four in the morning and when I went through she said she had not rung it... I went back to bed and ten minutes later she rang it again needing the Loo!

    I am doing more night calls now which is one of the reasons I am here less often.

    I hope things are going ?OK for you all. I will try to catch up with the threads this weekend.


  • Bless you both K!

    You might want to get a referral from the gp for some Marie curie night sits...... x

    Ps exhaustion and sleep deprivation are a killer x

  • I think its coming... Yes, it can be a killer.

    The fact that the builders kick off next door at 0830 every morning with loud banging that goes though our house has not helped. Ugh!


  • Hi Kevin. I had been wondering where all your fun and informative posts had gone. Sounds like you've been having an exhausting time. Strange you should mention Botox. I have recently asked out Dr to look into getting Botox to alleviate some of the rigidity my husband suffers from, particularly in his arms and hands. He plans to contact the movement specialists at the new Queen Elizabeth hospital in Glasgow for advice. I would be interested to know if it also works on keeping the mouth open as I am having trouble feeding my husband as his teeth are so close together and brushing his molars has become impossible as he clamps his teeth shut. I hope the weather stays fine and you get Liz out. Maybe you'll be able to get a bit of weeding done. If your garden is anything like mine everything is needing cut back and tidied up. Take care.


  • Kevin you have been missed, sorry to hear about Liz, bloody PSP I really hate it, I think hate is quite a strong word. George has also been a nightmare this week, feel so tired, finding it difficult to cope at these times. But well bad lovely man, stay strong xxxx Yvonne xxxx

  • Thanks Yvonne.

    Sorry to hear you are having a tough time too.

    Yes, tiredness is my problem too. Too much getting up in the night followed by low productivity in the day.

    Funny thing is that now Liz has had a pretty big slip she is much better to be with. I think before there was a lot of anger seeping out in day to day interactions. Like passive aggression.

    I weep for what she is going through.



  • Hi Margaret

    Things are still full on here and yes I have a wonderful crop of weeds!

    The Botox hasn't helped Liz's mouth opening. They though t it might not. The surgeon explained that it was not so much over stiff muscles which close the mouth as weal ones opening it.

    I hope it give's your man some relief.


  • Good to hear from you Kevin. Sad to hear about the lack of response to the Botox. I realise I'm probably clasping at straws but hopefully no harm in trying. I mentiined to our dentist the difficulty I was having in cleaning Drew's molars as he clenches his teeth at the slightest touch. The dentist has suggested looking into getting Drew into the Dental Hosp where he can be sedated and his teeth cleaned properly to avoid infection. It would, of course, involve ambulance transport but it would be worth it. I'll let you know how we get on. In the meantime I hope you are getting time to rest. Take care.


  • Hi Margaret

    His problem might be different.

    Liz only has trouble opening her mouth sufficiently for teeth cleaning and eating. She does not have the clenching. - yet?

    Good luck - do say how it goes.

    Best to you both


  • Hi Kevin

    Nice to hear from you..I've been absent also from the forum lately.

    Hope the botox does give Liz some relief in her jaw.

    You are both amazing as are we all dealing with and caring for


  • Hi Ssparkle

    What a lovely thing to say. Thank you.

    From here it often feels like a Slapstick-noir.

    This illness has taught me much humility the hard way.


  • Do you have help in the pipeline for helping with night care? You can't go on as you are.

    mum had a stomach bug about a month ago for two weeks. It was horrendous as having to keep changing her and the bed, the output was the most at night , unlucky for me! It was so tiring.

    The issues with the neighbours you really could do without too. Sounds awful what they are doing.

    Nice to read that Liz is now not so frustrated and angry and you are enjoying loving time in each others company.

    Big hugs x

  • Hi SSparkle

    The neighbours have gutted their house walls, merely keeping the outside walls. They are now rebuilding with an extension on the rear... massive and noisy job!

    Night we can't pre-prepare for night care - we have to wait until there is 'need'. Liz is just too unpredictable for night toiletting and pad changing.

    Gosh - a stomach bug might well be the end of me - strength to you!

    We manage

    Hugs to you


  • Understand you can't say which nights you would need help on but just wondered as there is a need if you are able to get some regular night carers in place so you can get some rest .

    The building sounds awful and I know would drive us barmy as Mum had very bad noise sensitivity.

    Hugs x

  • I expect we will need to extend the CHC soon... I don't want to rock the boat at the moment and the weekend is here so I can get some extra sleep.

    Frequently the noise is so load we cannot talk and be heard. The builder is a decent guy and a couple of times they have cut their day short to give us a break... once when he saw us sitting 'quietly in the garden together.




  • Enjoy some shut eye.

    Sounds like a half decent builder then at least.


  • Hi Kevin

    Glad your back here

    Sorry to here your problems and hope Liz is ok

    Hope the weather stays fine so you can go outside

    Hugs to you both

    Sue xx

  • Hi Sue

    We're really quite good with each other at the moment. There is a lot of love and understanding both ways.

    Just too many night calls followed by me being tired and taking a long time to do things in the day.

    Added to that each computer in turn went down. First mine... it took me three days to sort it out and re-insall everything. Then Liz's which needed some hardware replacing and everything re-installing - not finished it yet and finally my back-up-ancient laptop... three more days. That added onto everything else was a little too much.

    Yes, we have been outside in the sun and just sat and talked occasionally. It was lovely!

    I hope things are going OK for you.

    I will try to reasd the threads this weekend.



  • Hi Kevin

    Glad to hear things are settling down for you

    Me well we are back in hospital

    2 weeks home and here again

    They are all a pile of crap

    Apparently he's mrsa and not isolated so annoying

    Sue xx

  • Not isolated?

    Sorry to hear you are in the wars again.

    I hope it goes as well as it can.



  • Kevin , I have missed reading your post.hope things inprove soon for both of you ..Brenda xx

  • Hi Brenda

    I just got too tired with night wakings and too much happening in the day. Computers needing repair, too many chores and Liz needing more care than before.

    I am adjusting - again!

    As you might see in my replies above things are very loving and warm between us still.

    I hope things are going fairly well for you folk.



  • I know what you are going through Kevin, you are a resilient man remember that....get some some friends to talk about something other than PSP go for a walk? even if it's outside and back in... how do you say it bloody bad weather youre having.....Maybe google Vancouver island or Australia or where my daughter thinks she might move, Norway! she fell in love with her fathers country of heritage ...she's never had a winter there and thinks she'd like to experience it.....I say go for it CheChe....

    I am sorry you are in such a time and that your wife is having such a fight. Remember we are hear my well



  • Hi Andrea

    I nearly emigrated to Vancouver some years ago. A truly wonderful city, great cuisine (I have a lifelong online enrolment with a Cooking school there.)

    Vancouver, I have been told, gets six months of heavy cloud and no sun every year... As in the northern places like Norway and the North Scottish isles with there dark short winter days, depression is a big problem.

    Brits love to moan about the weather - even when its sunny it will be too hot!

    Your posts somehow give me a better perspective. Thanks.

    I hope you are managing OK.

    I will try to catch up with the threads this weekend.




  • As wonderful as the weather has been here in Northwest ARkansas, I worry that a cool almost cold semi wet August is going to lead to a Cold freezing ice storm of a winter,.......We had a horrible ice storm some years electricity for days going into weeks in some places. out lovely but weak maple trees splitting in half; cars sliding into those broken trees or off a bridge they drove across daily....familiarity doesn't always guarantee safety ....So a warm wet winter is welcome.

    Now on to food. I do not cook. Well only if my kids are here.....I get most of my calories from crackers and seltzer water......I'm such a culinary bore. Even that which I cook is rather bland....crackers will do...ahahahaha. I kept one cook mothers wedding's the only thing that survived the brief but productive (3 children and alot of sorrow) marriage... s

    Well it's been a week since the it working? How is Liz? I think about you and your wife....maybe someday we'll all meet up and have a nonvirtual hug!!! You'll get to be head chef!!!

    Do Well my friend , keep doing well....


  • Hi Andrea

    I've just looked up Arkansas (Sorry to be so ignorant) wow what a lot of space you folk have - Very pretty too!

    I guess being in the middle of the continent you must have quite some extremes of weather?

    So I am probably moaning far too much?

    Good luck with the storm.

    When I am on my own I eat simple food. Mostly home made bread (bread maker) cheeses and cold meats, some fruit and tomatoes and salad. My mother was a Domestic Science person and she started me off cooking alongside her at three years old... mainly I got the job of watching and tasting back then! I just love doing different things with food and giving Liz nice surprises. The course is just reading and videos... We've been eating less meat recently - just not fancied it - and so I thought I would look at plant based cooking to try to freshen things up a bit. Remember I am a man so the fact I can boil a carrot without burning it makes me a great chef in my eyes!

    Sounds like you have had a tough time of it. What do you do to relax and have leisure?

    No, the botox hasn't worked. It was worth a try.

    Yes, wouldn't that be great to all meet up! What a surpise we would all get - I'm sure.

    Wishing you the very best of your time, you are a great voice here and I send you hugs.



  • Kevin bet you never realised you were so popular?☺. We have all missed you. I know what you mean about catching up on sleep. I am still doing that!

    Take care of yourself and your Liz.

    Marie x

  • A little abashed!

    As you will see we are good within ourselves.

    Hugs to you and hoping you are finding your way.

    You are very valued in our house.




  • Hi Kevin, I agree with everyone,you have been missed. I hope you are getting all the help you need.

    Sending big hug and much love

    Lots of love


  • Hi Anne,

    As I have written above - Liz and I are curiously close and loving at the moment. I think her last step down took a good deal of her anger with it.

    Apart from the things I have written above, crashing computers, too many night awakenings the adjoining house is being gutted (floors, walls and all) and then expended and rebuilt from scratch. We are an end of terrace - the noise is horrendous. We and our neighbours are involved in an ongoing fight to limmit the harm they are doing to our environment. The gardens here are really quite large and at the top of their slope is a wooded Roman pathway. Its beein in use for a few thousand years. They have uprooted all of the trees on the lane adjoining their garden and are now building a small industrial unit at the end of their garden. Its at the top of the slope and look in through everyone's back windows. Sorry that was a lengthy rant, but we really didn't need these extra issues.

    I hope you are finding a good path.

    Lot's of love


  • Hi Kevin, I feel for you. Going through a bit myself. Next door started a very small extension back in January. Walls just about a head height now. Have a very neurotic dog that is fed up with having strange noises coming from their garden. If he just got on with it, it would be finished now, but it seems to be a "little" hobby for him, but causing havoc for me.

    Sending big hug and much love

    Lots of love


  • Hi Anne - I replied to you in the wrong place - its sitting just above you post.




  • Oh, new post - I should not be hear without a carer!

    Yes, the dragging on must be a pain.

    I do so love peace and quiet.




  • Oh poor Anne does he own your building as well? Surely there are city codes limiting noise...that goes for you too Kevin....


  • Yikes Kevin that does sound anxiety think the trees are going to be extracted or have been,....What does industrial unit mean....factory? Take pictures of what you have and then take pictures of what they took away and at least sell your place for what it would be worth without a building in your "back yard"...My daughter (who should've been a lawyer) went to court over a tree that was about to be stood in between both property lines. She fought on the grounds of was here before the civil war, during and certainly after, It provided erosiion protection and a canopy larger than any other tree in town...if nothing else it was a beautiful tree.....she actually won over money.....for the moment ....she since got evicted on the grounds that landlord wanted to live in her house......probably to mover forward in cutting down the tree and building more houses....

  • Hi Andrea

    We're not sure what the building will be.

    It is going to be a high tech. prefab. building with power, and sanitation. The owner says it is to be a workshop for her curtain making business. This is a residential area and so she is not allowed to have a commercial site in her back garden excepting as a place for her to work. E.G. she cannot have employees etc. Nor can she have an additional house for someone to live in it. However we would have to prove that she is doing those things.

    It is very peaceful here and so we fear losing that.

    I hope your not in the path of this storm.



  • Well I'm probably beating a dead dog here, but If you want to fight you may have the "right to Light " law on your side. This usually of course is for a multi story development and it is under dispute.....I think this law is over in the UK...I looked it up for US and could not find much ...though I'm sure it's tucked away in some law book somewhere....anyway that's my thought for the moment !

    Good luck I hope it works out for both you and the neighbor....Too bad she cant go "down stairs"


  • Yes we do have that law and they are respecting it.

    The law allowing them to put a building up against their boundary is not very specific. I suspect it was meant for sheds and small workshops, but that is not specified.

    We will learn to live with it if it is withing the law.

    They don't mean harm, but they are young and don't have a feel for the 'rural' - Land is something you develop seems to be her way.

    They don't have much of an idea of community. So far they have crossed five neighbours. Its a shame really.

    Take care



  • Well lets just say its amazing what beauty is provided by vines your fence....I too have greenery blocking the sight of some old sheds. they will probably tear their owns selves down pretty soon....leaving of course all the junk inside as yet a bigger eyesore....hahaha Funny (?) enough the man that owns the house moved away leaving his 'treasures' behind......

    oh and no Arkansas at least Northern parts don't seem to be in the path of Hurricane Harvey...The gulf coast is such a beautiful place to live but it certainly comes with its dangers.....

  • Folk are funny - of course you are in Arkansas... I'm being slow.

    I feel so sad for what those folk will be going through.

    I hope those vines are grape vines!

    We have our first bunch of grapes this year... not quite ready yet... very exciting.

    Our garden is only five years old. So the various apple and pear trees just give us a taste of what is to come.

    Do you garden?




  • Yes I do garden . I have a lovely patch of indigenous flowers and other greens; these are all otherwise known as weeds to most....hahahah....My son was given bags full of indigenous flowers of Arkansas which are quite lovely on the highways and throughout the country side, but somehow they are more of a weed patch in my yard.....The yellow flowers however invite the most lovely goldfinches . The hummingbirds are quite happy with my choice of weeds as year I do think I will go a little tamer and find flowering plants of Arkansas that don't bramble on so much.

    Where I grew up , grapevines and peach and other fruit trees were abundant enough to make an income off them...We also had walnut and I want to say almond trees/pecan but im not sure .....It was indeed a beautiful mixture of evergreen and deciduous trees .....This was right at the top of the San Joaquin Valley in Northern California.

    Well just think in about 10 years , you'll be stomping on grapes, making your own wine for dinner hahahah....What type of grape are you growing?


  • Hi Kevin

    Wondered if things were tough as you had not posted in a while. Hope the Botox helps.

    Are there any drugs to help the night time toilet Situation?? My life has been revolutionised by Tamulosin to add to the Trospium and Mirabegrom my husband already on. We had got to the stage of getting up every 30 - 40 mins at night but he only successfully PU every 3rd or 4th time. Now he gets up only every 2-3 hrs which is a godsend😊

    Do take care of yourself, hope you can both feel a little sun on your face today

    Love and hugs


  • Hi Tippy

    Well, just a lot happening as you can see from my replies above. I am tired, but things are generally good.

    Yes, Liz is on Mirabegron / Betmiga (max dose). We have some nights where I only need to take her to the toilet at about 2300 and 0500... sometimes it's an 0200 and 0800 too. I am probably being a bit of a moaner! Its the getting back to sleep after all of the lifting and moving with added load noises of protest from Liz. No alarm clock is quite so effective!

    It sounds as if you have really been through the mill more than I.

    Yes, we will be going out into the sun today :)

    Hope you guy's are doing OK.

    Thanks for being there.


  • Kevin you are Absolutely not a moaner!!! Missing out on any sleep is tough for all of us.

    Thank goodness for this site.

    Not much sunshine here today thunderstorms but at least I don't have to water the garden😊

    Take care of yourself whilst you are of course busy taking care of Liz.


  • As you tell from all the posts, your presence has been missed. Enjoy the sunshine!

  • Hi Flemingc

    I am hoping to be here a little more than of late.

    I have missed the folk here too!

    Thanks for being there.

  • Good to hear from you , Kevin. Hard time here too.

    You're both in my thoughts.

    lots of love, Jean xx

  • Sorry to hear that Jean

    I am going to try to read some of the threads this weekend.

    I do hope things have picked up for you now.




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