Just joined the site

Hi guys, sad to see so many people on this forum, meaning so many more people out there who are suffering from PSP, but at the same time comforting to know we can talk to each other. Been meaning to check this forum out for over a year, when my dad was first diagnosed from parkinson plus to PSP, but honestly been so busy all the time. Funny thing is that I was the one who realised this isn't normal parkinsons, the doctors and nurses were just saying looks like its advanced parkinson, one of them was saying it seems like MSA, but i decided to get a second opinion from another neurologist and found out it was PSP. My dads condition started about 5 years ago when he all of a sudden couldn't walk and was running down the aisle in Tesco. My dad is at the stage where he's wanting to nutri bullet all his food. His balance in now none existent, anyway I could go on but just wanted to introduce myself and my dad. I am 27 and my dads main carer and my younger brother who is 19 takes over when I need to leave the house. Real depressing times nowadays. Staying home for so long has made me so brain dead. I do work one day a week though, but I can't even structure what I am writing. Praying for all you guys who are a victim of this horrible condition and for all you carers and family members.

33 Replies

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  • You have definitely found the right place for advice and support. My biggest piece of advice is see if you can get some help, you sound like you are coping well but you and your brother need to look after yourselves too. Take care. Coyle 51

  • I agree with coyle 51 above

    lol jill

    PSP `PERSON i0N THE UK

    XXXX

  • Welcome Mustafa128h We are here for you when you need us. It sounds like your dad is one of the lucky ones in so far as he has two sons that have not fled! I hope you have already got a blue free parking badge, and are making good use of it. Seize the good days. Laugh with him while you can. Record his voice...

  • Thanks for your prayers Mustafa. I thought it tough having to be a carer in my 60's as I was about to retire but 27 and 19, that's harsh. I hope you still get to see friends.

    As others have said, get as much help as possible. Where do you live? I'm in the UK so don't know what help is available elsewhere but there are folk on this site from all over the world so someone can advise if you need it.

    I'm in A&E with my hubby at the moment, awaiting results of a Scan as he managed to dive off his shower chair this morning and cut his head open after hitting a water pipe. The wet room looked as if the chain saw massacre had taken place. Water makes blood go a long way. And it was only last week I said he never falls now as he isn't mobile. Spoke too quick I think.

    You'll be in my prayers.

    Take care of yourself as well as your dad.

    X

  • Hi NannaB . Never a dull moment, my husband has lots of falls but up to this has not had serious injuries (hope I am not speaking too soon) You take care of yourself until the next episode. xxx

  • True! Never a dull moment. C T scan looks OK. To seal the large cut they have tied strands of his hair together pulling the sides of the cut together and then glueing it. Very clever....I'll know what to do next time. Only joking but I did stop taking our sons to A&E and used a lot of steri strips when they were young.

    X

  • Oh my, NannaB! Did they really do that? My sweetheart would be out of luck if they wanted to do that for him, as his golden lock are pretty much only a memory.

    Sorry you have had so much excitement. It is amazing how much these head wounds bleed, isn't it? And in the shower - wow.

    Our doctor told us that the wounds bleed so much, and consequently rarely get infected, as an adaptation to our going upright on two legs - always bashing our noggins on low tree branches, we needed to develop some helpful traits! I often think, as I'm trying to steady my man on his two legs, that this was really a wrong path to take on the evolutionary road! Who would design a two-legged chair?

  • Yes they tied his hair. He did wince a bit. It's 3.20pm now and we are still in A&E majors, arrived at 8.19 am. We were ready to go home awaiting transport and the doc came and said he must have an ECG to " tick all the boxes" before releasing him. We are still waiting for it. It's been a long day.

    X

  • oh dear! Bad enough to be hurt and shocked and worried, but hanging about for hour after hour....torture! I do hope you are home now with a big glass of whatever you fancy, and on your way to recovering. Love to you both, Ec

  • Back home, whew! The paramedics put him into bed so I didn't have to hoist him. I slid him into sitting position for his meal but he is asleep again now. I had trout when I got home and it made me so thirsty I've drank loads but no alcohol yet. A bed time glass I think.

    X

  • So sorry to hear you've had such a rotten day. Do hope you get home soon and Colin can have a proper rest - and you of course!

    Vicki xx

  • Thanks Vicki. Arrived home at 5 pm, nearly 9 hours after arriving in A&E. Could have been worse. C asleep and I'm about to start the great cleanup. Bright red towels already in the washing machine. I lost a whole afternoon of Crossroads sitter, that's rubbish but thankful Colin is OK.

    Bev x

  • Hi Bev, glad to hear Colin is OK now! S went into respite this morning, phone call just after lunch to say he had fallen!!! Didn't think he would last that long, I had him tumbling long before that!!! Thankfully, they say he is alright, just a slight carpet burn on his forehead. Haven't rushed in to see him, trusting them, that they are right. My daughter is going in this evening, so I will get a report!

    When will they ever learn to do as they are told???? You would have thought by now, with all greetings with the floor, our men have had over the years, they would realise that it hurts and something to be avoided!!!!

    Lots of love

    Heady

  • Argh! This disease attacks so sneakily - robbing of a person even of the ability to see and avoid danger, and to learn from experience. I get frustrated with my guy, even though I know it's not his fault - sometimes he can do something and sometimes he can't, and no amount of "willing" is going to make him able. I, on the other hand, have no excuse for forgetting that he can't, and blaming him for it. When will *I* learn?

    Anyway, enjoy your rest, Heady. we all know how much you deserve it! Love and hugs, Ec

  • Point taken EC!!!

    Lots of love

    Heady

  • When indeed? I hope the care home learn from the fall, S won't. When Colin went into respite for 2 weeks he fell 6 times.

    It scared the life out of the carer today. She is supposed to come back tonight. I think I'll get her to do a bed bath tomorrow. Can't stand any more excitement for the next day or so.

    Enjoy your break.

    X

  • Hi NannaB, sorry to hear of Colin's fall and you both having to spend all those hours at the hospital. Hope things are less eventful over the next day or so.

    lots of love, Nanny857

  • Thanks Nanny857.

    X

  • I gree with what nanny and nanab have said

    lol Jill

  • Hi Heady, hope S settles into his new surroundings and you make the most of your week's respite as you deserve a rest. Lots of love, Nanny857

  • i agree with what nanny 857 has said

    lol jill

  • Hi Heady, hope you are enjoying your respite despite getting the call, seems you are still on duty even when you aren't! What are you doing with yourself, I imaging there's a lot of sleeping involved. Enjoy the rest of your freedom. Kate xx

  • Oh dear NannaB, hope all is well now at yours. Although C's fall is a very serious matter I had to smile when you described the massacre scene, sounds like something from the film 'Psycho' are you sure you didn't go in there wielding a knife, only joking! Anyway I'm pleased you managed to get him all sorted out and back in the peace and quiet of your own home, bet he had a bit of a headache after that. Take care the both of you. Kate xx

  • Yes, our sons all mentioned psycho. C is OK. Lots of blood doesn't phase me any more, combination of number of accidents C has had in the past and watching NCIS and similar TV programmes but last night when the carer returned, she said she felt terrible all day and kept thinking about it. She said she has never seen so much blood. I told her most of it was water but she said she never wants to see so much again. I expect she was also shaken as it was her showering him at the time. In the morning I wasn't thinking about her as C was my priority but this morning I told her to wash him in bed. She left happy...I think.

    X

  • Hi Mustafa. So young to be dealing with this disease. Please get as much help as you can and I know its hard but try and keep yourself involved with people your own age. Its such a young age for you and your brother to be left to care. Please keep in touch with this site and take care of yourself. God Bless xxx

  • Mustafa128h

    Your dad is blessed to have you and your brother watching over him. I do have to respond about staying home a lot lately---that has been so tough because we are adventurous people! We would never stay home until now. I need to find ways to keep busy because I can see where this might drive me crazy. Thank goodness I work out of the house so that keeps the brain moving but on the weekends, I will have to find us projects (no TV or Computer related) to keep us busy. Tough times ahead.

    Thanks for your prayers and sending prayers right back at you and your family.

    NSH

  • Hallo, Mustafa,

    So sorry to hear about your Dad and also that you have to carry this heavy burden at a young age. You sound like an excellent advocate for your Dad.

    It's great that you are keeping a day for yourself and I hope that you can keep this balance in your life over the months to come. I also hope that you are able to get sufficient sleep - I used to care for my mother and sometimes couldn't think straight for sleep deprivation. As a carer, you cannot look after your Dad properly unless you are functioning yourself.

    This period in your life won't last forever. Hope you manage to grab a few minutes when you can among all the hard work to talk with your Dad and enjoy each other's company. Here is an article I wish I had read when my Mum was still alive,

    theguardian.com/lifeandstyl...

    Sending you strength and best wishes, Mustafa.

    Amanda.

  • Hi Amanda,

    Thanks for posting the Guardian link. I've just read it and now I want to see the film. We are in our 60's, not our 80's and not too cluttered (well I don't think so). Two of our sons who live nearest will come and help and chat but when the eldest is here, although he does talk and help, also makes suggestions on how we can improve our lives. If they are here together they all join in and have moved things around and said, "When did you use this last, do you really need it?" I have to say, most of the time they are right but it is very annoying sometimes. I remember doing the same to my parents though and Colin to his so if I'm still alive when our grandchildren grow up it will be interesting to see if our sons and daughters in law have to put up with the same.

    X

  • Hallo, NannaB,

    My Mum died a year ago. With hindsight, I wish I hadn't been so bossy. I wish I had spent less time cleaning and tidying and more time holding her hand and talking.

    I'm going to see the film too.

    Hope you and your husband are resting and recovering after the accident.

    Amanda/x

  • Yes, had a much better day today. Thanks.

    X

  • jjhi mustafa'

    welcome to the site but sorry you have had to join;

    lol jIll#

    psp person in the uK

  • Hi there, sorry you had the need to join us here and at such a young age. I hope that you get all the help and support you need and that you are able to get to see friends and have fun away from your responsibilities. It is very tough for you and your brother to have to care for your Dad 24/7. Are you having any hep or respite, are you in contact with your local hospice who can offer support. It's difficult to find all of the info to get the help you need but do press for it, you need it. I find that I go 'stir crazy' not being able to get out on my own and to lead the life I had before PSP, you and your brother should be allowed to have a life of your own, outside the caring of your Dad, so push for all the support you can. Take care. Kate x

  • hey guys

    thank for all the lovely messages, really appreciate you guys taking the time and effort out to message me. Forgot to mention we are in the UK in Slough, Berkshire.

    At the moment we are not getting any external help, because I know my dad would not be comfortable with it.

    Not quite sure if you will all receive a notification, or should I have made a new post, or replied to you all individually. Thanks Amanda for the guardian article, will read it now.

    Sorry to hear that your husband had such a bad fall, NannaB, my dad has had to go hospital twice for getting a big cut on his had, one when I was on the way to Uni, i had just left the house and my mum called me saying hurry back, got back home to see my dad soaked in blood, rushed him to the hospital, got some stitches. back then i suppose we just didn't know that my dad actually needed supervision for every minute of the day. since then my dad hasn't had such a serious fall because we have all realised we can't leave him alone for more than 5 seconds. hope your hubby has recovered well from the fall.

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