It's been very quiet

Hi everyone it has been very quiet, is everyone ok? We are stidll waiting for nerlogical hospital to get in touch, I phoned them, and spoke to the person that phoned and tried to do an assessment over the phone, to be told that someone would be getting in touch with us, I said to him I am looking after my husbands best interest and if I did not hear from anyone by the middle of next week I would be phoning he up next week, he said do that it is good to keep making sure we are on the system, what a joke, what we have to do. He also said to me do you know about PSP I said yes we had read up about it.

Also speech therapist came today she is lovely she said she would try and sort it out. She also said that she felt like he has deteriorated. Also George does not want to take his medication, so that is another big problem, because his diabetes is high, and he does not want to take his tablets,Mao I feel like I am hitting my head on a brick wall. Well let's hope the weather stays nice and we can get out in the garden.

Have a nice weekend all Yvonne xxxxxxx

37 Replies

  • Hi, Yvonne, it has been quiet, and I have been wondering if the problem with the posts that folks were having last week hadn't come back. I hope everyone is just to having a good time, enjoying some fine weather and NOT thinking about psp for a change. I second your wish - happy weekend to all. Easterncedar

  • Hi Yvonne, we are still here. My poor hubby is suffering from ulcerative colitis at the moment as well as PSP, ( had it on and off since 1977). He is on steroids which did make a difference for a while but now he has lost control of his bowels and loses a lot of blood. Hence not posting much. I'm spending most of my time hoisting him on and off the commode, cleaning him up and washing. I'm blaming it all on a new pair of wheelchair trousers I bought him. They are extra high in the back and extra long in the leg so his ankles are covered. I've only put them on him 4 times and he hasn't had them on for longer than 2 hours before I've had to take them off and change them. He missed his session at the hospice today and I missed my me time but we still managed to have some laughs. Well he laughed at me in my surgical gloves trying to sort things out in the cleanest possible way.

    I did learn something today; it is not a good idea to try and light scented candles with a match whilst wearing surgical gloves...ouch!


  • Poor you !! It sounds a night mare, and puts my situation in perspective [although that doesn't actually make it easier !] Hope Colin improves quickly and you can get some rest. I can't get rid of the mental picture of you in your surgical gloves !! love, Jean

  • Thanks Jean. Things look a bit brighter this morning as it is such a lovely day. I've put one lot of washing on the line and another is about to go out. My tumble dryer can have a well earned rest now I can now walk on our once soggy grass.

    I hope you both have a good weekend.


  • Thanks. Doesn't the weather make such a difference. Hope you can relax. Jean

  • Hope Colin get well soon have a lovely weekend with hopefully a bit if sleep xxxxx

  • Thanks Yvonne. I hope your weekend is good as well. It's supposed to be higher than 15 degrees here today so Colin may be able to sit in the garden while I do a bit of spring tidying.


  • nanna b I have a lot of faith in you colin so the sooner you get back to how you were the better it will be for nanna b and yourself so thumbs up mate stick with it matey take care peter jones queensland Australia psp sufferer mate I hope you feel better in yourself by tomorrow mate see yer buddy

  • nanna b matey your a champion you really are and so is me old mate colin see yer get well soon colin well nanna b you certainly do your very best for colin mate you deserve a medal peter jones queensland australia

  • poor you Nanna , I know exactly how it is , no sinner off the commode than back on again .

    I don't mind the hoisting , it's a feeling hoist it's the FAFF of putting the sling on and off all the time .

    I believe you still use the toilet though .

    I find if I line the commode pan with some tissue first this helps cleaning afterwards ,A LITTLE BIt easier .

    another tip if you find the toilet becomes blocked or slow to move using a bowl of soapy water helps a great deal . helps to clean toilet at the same time .

  • Oh I know what you mean about the hoist. I have to physically pull him forward to get it behind him. He is able to use a standing hoist which is just as well as yesterday I suddendly realised I had only attached the Velcro and not the waist straps. Fortunately he has a strong grip so was able to hold on and the Velcro held him. Thanks for the tips. I'll definitely line the commode now. I'll try the soapy water trick as well.

    Have a good weekend.


  • Glad to be of help , .

    john I still quite sitting from the waist up . poor hand control all the smaller movements are a big problem for him .

    I think you will find lining with tissue a Big help , hope so .

    we use a Freecote wheelie commode chair , the bowl slots in and out but once he is sat on the chair I cannot move th pan so I have placed a board underneath , their is a bottom rail and put the pan on there . o can remove it and find it easier to cleanseJohn while still sitting . I kep a small stool near to sit on . It' saves him having to be suspended in the sling for too .ong . not very good for bending my back lol . what we do for love .

    I am always open to any tips and will to share anything that I have learned that helps .

  • We have a Freeway tilt and lift shower chair/ commode on loan. There was one in the holiday flat we went to last year so I asked the OT if she could get us one. I was very surprised when she said yes as they are expensive. It is brilliant for us as I can shower him in the wet room. The bowl is set lower than our first commode so I can take it out while he is still on the chair and then tilt him back and clean him easier from the front. When he is having a shower I place the bowl on the floor just in case! One of our carers forgot. What happened blocked the drain, the remains floating in deep water which covered the whole room and slowly seeped into the adjoining room. I had to bale it out into the loo and then dismantle the drain and clean it. I was not a happy bunny. How people cope with floods, I do not know.


  • we haven't got the tilt one , I haven't got place I could have a wet room . john Is downstairs now and I had a large walk in shower upstairs . it was when we were given the Freeway . ours isn't the tilt one but has a sloping back .

    yours sound good ..

    sounds like you had a nice Ot same as us , She tried three different ones before she came up with the most suitable . john is only toppled and tailed these days . we manage though .

    I think if we ever had aflodd I wouldn't be able to love in it afterwards . it must be dreadful .

    gosh you did have amess to clear up . you don't make the same mistake twice do you lol . Xx

  • Hi Yvonne, I 've been travelling, so out of touch. We are now back in South Africa for two months. It was a long journey, but we coped quite well. S exhausted when we got here and actually SLEPT for 10 hours, I even managed a straight 7 hours, first time in years!!!

    Had fun since we got here, the first thing S did when waking was to fall backwards in to the shower cubicle, our lovely glass surround, is no more!!! Never seen so much glass on the floor. S? Oh, he's fine, just a couple of scratches. Found him lying in this lake of broken glass, didn't know what to do, or where to start. Then had to spend the first day of our holiday, clearing up, sorting insurance and someone to come out to see what can be done. They are having to make a special glass screen to replace the broken cubicle! Not only is this disease evil, it's b,,,,,,,,,,,y expensive as well!!!!

    Know how you feel about medication. My husband is on 17 different pills, that he takes various amounts of through the day. I have an alarm set of my iPad, that goes off every few hours, to remind him to take the retched things, but I still have to fight, get cross and stamp my feet, before he will take them, by then it's late and certain pills he can't take together, so the whole system gets messed up. I'm sure most of them are a waste of time, because of this. Did try taking him off the Sinemet a few weeks ago, but that failed miserably! So they must be working. Back to the nagging! It's so boring!!!

    To those of you up in the northern hemisphere, the sun does still exist and capable of chucking out some heat and getting ready to make its way back to defrost you! It seems strange to come from a cold winter to here, with a lovely autumnal feeling, but I know in a few short hours, it going to scorching! Still that's why we paid the big bucks to get here!

    Hope you are having a lovely weekend Yvonne, don't forget the crash helmet, when bashing that wall!

    Lots of love


  • Glad to hear you are in S.A. I am having cold feet about doing a short flight. How do you manage it ? It would be good to get to a warm place for a while. I know if we don't do it now we never will. We have travelled a lot but it all feels overwhelming.

    Have a great time. Do you have family there ?

    love, Jean

  • Hi Jean, honestly, it's worth every minute of hardship, to get away. The feeling of normality is incredible. My advise, always make sure you get wheelchair assistance, saying that your husband can't go up and down stairs. It's a brilliant service, totally free, you jump all the queues and for however long it takes you to get to and from the plane, no worries, because somebody is looking after hubby, you just have to look after the luggage. They should take you to your next mode of transport! Next, make sure he is wearing a good pad, (if he has problems in that direction) never know when the seat belt sign is going to go on, or you have to circle the runway for any length of time. This time I was very pro-active, making sure he had everything he wanted, the video was working, kept having toilet breaks, before the queues started! It made so much difference, I was actually able to get some rest myself!,!!

    Admittly, we do come to our own house, here in SA and we do travel Business Class, but I have taken S to Lanzerote for week, on a package holiday! Of course it's hard at times, even scary, but if your husband is still capable, WHAT is keeping you???????

    Lots of love


  • Thanks. I have always been brave at taking risks but this is new territory.

    Nov, 2013 when C. was just diagnosed we went on a pre-arranged tour in Costa Rica.! A bit hairy at times but brilliant.

    You are so right . It is important to do whatever you feel as "normal" for as long as possible.

    We planned to go with C, 's sister to a family flat in Majorca in June. I got nervous and haven't booked flights but I will !!

    Enjoy your holiday. Is it Cape Town. ? We've been there and loved it. Enjoy the wine!!!

    Love, Jean

  • Oh, I AM!!!!! Don't worry about that! Book those flights today.

    Lots of love


  • Oh I would love some sun but it is suppose to be 15 here today so looking forward to this weekend oh I brought a crash helmet have a lovely holiday x

  • Hi Heady, I hope the rest of your holiday is less eventful than the beginning but you are able to relax a bit in the glorious weather. A bit of sun makes everything seem better doesn't it. I was always amazed how Colin could avoid serious injury after spectacular accidents/incidents and I'm so pleased S only had a few scratches.

    I hope you have a brilliant time away and I think you are very brave making the effort. We went away twice last year, in England, but I have decided not to attempt it this year. It's too much effort packing the car and fitting everything round the wheelchair. We will do lots of days out though, once the colitis clears up.

    It's going to be over 15 degrees today, a heat wave, so will spend time in the garden enjoying the sun.

    Relax and enjoy your time away, if possible.


  • Hi Yvonne, I was also thinking things had gone quiet but was too busy to say so. Only three days now till I phone the Prof. we saw in Izmir and have to say I can see no change in Chris since new drug regime was started. But our weather is gorgeous and set to hit 23 today - warmest day of the year so far. Heady, we also have had many breakages including a commode and a normal ceramic toilet. C detached our glass shower screen within days of its installation but it didn't break thank goodness. He is now obsessed with shredding upholstery on arm of his chair. C has been a cat lover all his life and his last cat, who came out from UK with us, died in November and is buried in the garden. We have travelled widely and wherever we went C was a magnet for stray cats. I vetoed a replacement on grounds that I have enough to do without training a kitten. Yesterday we visited local animal sanctuary where Cat House is run by ex pat volunteers. I thought he would enjoy the cats and he did but not one of them came to him. They did come to me. Weird. However, he didn't seem to mind loss of cat mojo and we shall go again. Time to get him up for breakfast and pills! Pat

  • Hi Yvonne! See, we're all still here! We had a visit to the neurologist with lots of good advice. One was to change family doctor from our passive, take-a-pill-for-everything one to one who's a bit more pro-active, connecting the dots, suggesting services etc. That's my job for next week. My dad is going through old papers, throwing lots out, getting his affairs in order while we play classical music on his new CD player. I'm trying not to be worried about his frame of mind, it keeps him busy, but it's a reminder of things to come. His very old computer is so slow it's frustrating even him! He wasn't sure if it was 'worth it' getting a new one (reason left unspoken but screaming it loudly in the room), but I asked my brother (the Computer Guy) to look into it - it's worth it for every single minute my dad can still use it!!! Things are getting slower, his injured knee (from getting in and out of the car a couple of times for medical visits) is not healing well, so his (shuffling step-by-step) walking is painful and is getting more lopsided and twisted. Seeing a specialist in 10 days (no earlier appointment - wishing I had made it earlier but our soon-to-be-fired family doctor sounded so convincing and you have to trust someone sometime!).

    BUT the sun is out, the yellow and purple crocuses are sprouting everywhere in the garden. There was a beautiful big moon out last night... A nice weekend to you too - keep happy & safe everyone!

    Lieve xx

  • we have been very busy all sorts of appointments hospital and hospice and the vicker as well. Brian also had another chest infection.

    Medication has been a nightmare here as well since about November he has been taking one Amantadine in the morning (don't think it does any good) we have tried a couple of times to increase it to two a day but he seems to have adverse reactions so we decrease it back to just one tablet. Janexx

  • Still here. Both had colds and struggling. Feeling better and cheered by weather. After I got stroppy on the phone we have had visit from physio and a rep is coming to demonstrate a "camel" and another to organise a wheelchair and everyone is being helpful. G.P. very supportive.

    The trouble is , when you're down its more difficult to find the energy to demand, isn't it ? An old friend of C. is coming to see him today. That will really cheer him, reliving youth !! Take care, Jean

  • Nice to heat from you all hope you all have a lovely weekend and this nice weather lasts for a long time it makes you feel better when the sun is out. We also had a bad week three falls after weeks without any falls, but one day at a time love to you all Yvonne xxxxxx

  • Hi Yvonne, still around too. Unfortunately early in the week I helped Malc up from the sofa and felt a twang in my back, by Thursday the pain in my back had reached down my left leg to my knee and I couldn't really stand on the leg or get any pain relief. After calling our GP, she suggested sending out the duty doctor to see me as I was obviously unable to drive and she felt a journey to the surgery in a car would not help my back!! So at least now I am on strong painkillers and anti-inflammatories. I have trapped a nerve in my lower back which has caused the leg probs. I have to call him on Monday and report how things are. I can stand on the leg now but am still reliant on pain relief. Malc has been a darling and managed to try to do things as best as possible and has made me proud with how he has coped. Lots of people within our retirement village have popped up to take Saxon (our Nova Scotia Duck Tolling Retriever dog) out for walks to lighten our load and he has had a 'whale of a time' with all the attention. Others have called in before going shopping and one of my friends even put the hoover around for me yesterday. Well have the online groceries due shortly (first time I have dome this so will see if it's worth the hassle).

    Hope everyone is having the best weekend they can, like a spring day here, so maybe I will manage to limp downstairs and sit in our very lovely communal gardens later.

  • Well I hope you start to feel better soon enjoy the lovely day xxxxx

  • What a lovely conversation to start my day. Thanks all! My connection is slow today, so I must read and run. We are off to the mountains. Hope everyone has a good weekend. Easterncedar

  • You too enjoy the mountains x


  • Gina will do going to make him an app with a private doctor so he can explain to him the importance of taking his tablets for the diabetics it is enough with the PSP without having other problems with the diabetics have a good evening x

  • Hi everyone,

    What a lovely day it's been today...sunshine,quite warm too....all day!

    I went out, while my husband was asleep and pulled a few weeds. I haven't had time for so long now to do any gardening!

    Roy has had so many falls this week and I am finding it harder and harder to get him up!

    My whole body aches, my hands and fingers even ache!It is just as well the OT has ordered a piece of equipment called a Sarasteady to hopefully help with transfers. A hoist was talked about but I was told that I wouldn't be able to use one by myself unless it was attached to the ceiling,so I hope the Sarasteady helps.

    Within the next few weeks I need to sort out our bedroom to make room for a hospital bed for Roy, so I will need to get rid of our kingsize bed and buy myself a single bed, which made me realise that these last few weeks will be the last time we would sleep in the same bed in our own made me cry!

    Hope the sun shines tomorrow for everyone wherever they are!

    D x

  • i have talked on here but it is like no one is there

  • Hi we are all still here must of been a busy week for all of us love to look on my iPad and see all the messages have a lovely Sunday not sure about the weather Yvonne xxxx

  • Hi just reading Headys reply I would love to book a flight to Cyprus we have an apartment by the beach just would love to wake up in the morning and sit on the balcony and have breakfast, get a bit of sun to our tired bodies, but George does not want to go, I think it is because he does not want people to see the way he is now, I told him we could just stay local and would not go to his village if that was what he wanted, but he still does not want to go. It is only four and a half hours flight. I do feel disappointed but part of me is relieved, I think what if he was unwell, and about getting to the apartment with all our things, so hopefully we will have a nice summer and be able to enjoy the garden that is nearly finished, if I can get George out there, he always says he is cold. We can go out for days. It is my birthday the end of March , children want to do something, felt like I did not want to do anything, but we are now, not sure what they are planning.

    In May we are taking them all away to the Cotswolds to a barn and my brother and sister in law are coming from Cyprus and are coming with us so I am looking forward to that, and seeing my lovely brother.

    Love to you all sun is shining going to pick up grandchildren we are going to garden centre to get some plants and they are going to help me in the garden they are 5 and 3 so fun and games love to you all Yvonne xxxxxx

  • I wonder if people whose posts are being lost aren't logged into a different community by accident. I had to log into the Parkinson's community to find a message from Jillann just now. The site has some changes going on and there may be unintended consequences. I hope people who are having trouble are contacting the administrator for help. I love this site and don't want to lose anyone! Love and peace, Easterncedar

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