PSP can be easily managed.

Not my words. A quote from the physio at DV Hospital.

Bugs got up in the early hours of yesterday , went to the bathroom, fell over into the bath and cut the back of her head on the taps. I did not hear anything and she did not call me. She just went back to bed. So at 7am I was greeted by a scene that resembled the Opening bit of the Godfather. Then I could not wake her, so ambulance to A&E.

They were pretty good. Then she started trying to remove the neck brace, the canula. Eventually this stopped when she decided she needed the toilet. They would not let her sit up until the CT results had been checked so the harassed nurse found a commode and she then sat there for 15 minutes, refusing to go .

The Doctor was concerned at the falls and thought a physio should be called for some advice. Another hour and this chap comes along and started spouting about exercise and dopamine medication. I explained all we were doing, and the drugs that had been tried and found ineffective but he seemed to have a one track mind, suggesting that Bugs goes out for walks, and then came out with the gem that is the title. I suggested that PSP is perhaps more complex than he thought and was told that "it's just a type of Parkinsons"

Somehow (bearing in mind we had been at the hospital for 6 hours) I resisted the temptation to put him in his own A&E bed. No discharge letter arrived so in the end I asked them to post it and then they could not find a wheelchair. A chair was found but no porter so I just took it and we left.

Back home to the clean up and all Bugs said was what's for dinner.

I got all the laundry done and pegged out, hoping it would dry overnight and I have just brought it all back in as it has started to rain.

Trivial I know compared to a lot of the other posts I read but the next person that says "it must be difficult for you" will go to A&E

52 Replies

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  • Well blow me down how unusual (not) for a physio to understand the complex problems of psp.

    We had a physio come into see Brian when he was discharged from hospital and he basically said well he is palative not much point pulling him about for the next six weeks. See you later was the next words as he walked out the door. that was the last we saw of him. Would love him to come back now after 2 months and see him sitting up in his chair etc.

    By DV do you meen Darenth Valley. Janexx

  • Yes it is our local hospital. They are starting a course of hydrotherapy next week to see if that helps make exercise any easier. This was booked a couple of months ago but there is quite a waiting list..

  • We come from kent originally we lived at culverstone. I think it is NannaB is near you. Janexx

  • Just down the road from us at longfield. Where are you now? I'm sure I have met Nanna at the local group meetings.

  • We are just outside clacton on sea. Yes i think NannaB attends the poll hill meetings.

    In one way i am glad we moved because everthing is easy to access here (i dont drive). Where we was everything was so far away and taxi's wouldn't even come down our lane. But alll our families are back in kent. Janexx

  • Why am I not surprised? Why do people who have never lived with PSP, presume they know what they are talking about? Oh yes, they have read the information. They haven't experienced the emotional upheaval we all go through, the shock at seeing what seems like gallons of blood, the thoughts of what could have happened.

    You must be relieved to know Bugs is OK and I hope you have a good day today.

    X

  • It turned out ok in the end, as most days do somehow. What her skull is made of I don't know - how it has not been broken into pieces by the bashing it has taken.....

  • Good grief! What a nightmare all round. And it had to rain on top of it. I don't know how you kept your cool with the insouciant physio; I'm furious even at this remove! I hope your Bugs and you get some rest and a chance to recover today. love, ec

  • Thanks - I have learned that this is the best place to rant a bit. it did turn out ok yesterday when I saw a pair of blue Tits bringing their second brood to the feeding station outside our kitchen window. the washing up took a long time though!

  • Your post was very entertaining made me giggle but oh goodness me you poor thing xxx

  • More stupid so called professionals!!

    Can't tell you how angry it makes me! You must having been going quite mad?!

    Sending you both lots of love n big hugs!! X

  • Many would say I was mad long ago. Finding something to laugh at always helps me.

  • I was only chatting to my PSPA contact the other day, about how a lot of professionals just think PSP is a form of Parkinson's, and therefore do not take it seriously. I know Parkinson's is not fun, but it is nothing like PSP. They have to get rid of this Parkinsonism title, gives off the totally wrong idea.

    I know the last time S was in hospital, I had a similar conversation, can't remember what it was, but I know what ever I was saying, was totally dismissed, as he only had Parkinson's! I did put him right, but not as forcefully as I should have. All these people are glued to the computer, have full access to Google, how long does it take to quickly look up PSP, before they come and see you, so they know a bit about what they are dealing with!

    No post is trivial and that physio's comments were disgraceful, as for putting him the next bed, give me a call, I'll hold him for you!!!

    Glad Bugs is OK, another crisis survived. Well Done!

    Lots of love

    Heady

  • Thanks. I'd left my supply of the PSDPA Cards in the car otherwise I would have handed him one. Reminder to put a couple in my wallet.

  • I think I need those PSPA cards. for me!!! In my banal attempt to quickly explain PSP, I do refer to it as Parkinsons UGLY cousin. It is way worse has NOTHING to offset it and it's demise is much quicker....I don't know if when they hear Parkinsons, they stop hearing...but after these posts I am afraid people might! It seems like it was working ...I'd like to go back and ask them what PSP is!

    Well Tokki, after reading all of these posts, I am going to renew my own "say it in 10 words" definition of PSP...

    AVB

  • I always say it's a cross between parkinsons and motor neuron that way they sit up and take notice. I am positive it is the mention of motòr neuron that gets there attention. Janexx

  • That's a good one Jane, I'll have to remember that next time!

    Lots of love

    Heady

  • Hi Heady,

    I too get very frustrated with `professionals` who, if they don`t already know about PSP, seemingly can`t be bothered to `Google` it.

    P recently had a visit in the nursing home from another different doctor from the local Memory Clinic who obviously knew nothing about PSP and only wanted to discuss dementia. Despite me explaining what PSP entails, when we had the follow-up letter the next week, the diagnosis was still PPS - Parkinsons Plus Syndrome !!!!!

    Laziness or ignorance ? It feels like one department (the Memory Clinic) has pigeonholed us and there we will stay despite my efforts to update them.

    xx

  • If it's like some of the professionals I have come across, it's nothing!!!

    Lots of love

    Heady

  • Ok I'm saying it sorry Lord and all you folks , but OH MY GODDDD!!!! Who does this fella think he is !!!! I can't even talk.......It's one thing to not know anything but it's quite worse yet to have someone spouting off his inane attempt at defining , diagnosing and flippently suggesting going out for walks.......totally suggesting that you aren't doing the very best you can do....And what right does he have to talk about drugs!!!!!He's a PT!!! Goddd what is he Donalds Trumps brother? And is he the only PT out there?

    Ok I'm going to get some more coffee....and calm down...I

    I am soo sorry this happened to you....You just don't get a break do ya. if nothing else fails it ,neither will the rain...when the laundry is out....What a thing to wake up to.....SCARRRRYYY...You seemed very under control....good for you however I hope you never have to experience this agian...put a bell on mama so you can hear her?

    ((HUGS)) and have a better...always

    AVB

  • Thanks. I am getting an alarm pad that will alert me when she gets up at night.

    Fortunately our normal physio is experienced with PSP as she heads the local Community team.

  • A, Donald Trump's brother...hee hee...And Tokki Heady is right. They all have access to the internet why don't they do their homework. I agree Parkinsons needs to be taken out of the description. Not that I think Parkinsons is a picnic either. It's just that there has been more research and most medical professionals view it as a debilitating disease that is treatable. From the Parkinsions people on here it seems like it is a long drawn out journey and I do not know if that is easier to deal with in the long run. I personally do not know if I could last 9+ years without having a nervous breakdown. I am angry at that arrogant A-hole! How dare he insinuate that you are not following the right course of action. Karma, baby. I do not wish ill on anyone but he needs a wake up call. I am sorry you were treated this way. Good for you for keeping it together! I remember the falling stage. I used to faint at the sight of blood and after the first bloody fall I learned how to treat and dress his wounds and keep him calm until I got him to the hospital. We lived in a very rural area that by the time you called the paramedics to come and they made it to us I could to drive him myself to the hospital. It is a brutal stage. Major kudos for how you handled the situations.

    Best JGC

  • Jayne psp is at least 6 times faster then parkinsons according to our neuro-rehabilitation girl. What stage you reach in a year with PD takes months with psp. Janexx

  • I totally believe it. Though I heard it was a month to a year. I remember when my husband was angry with the Parkinsions diagnosis and kept saying he did not have it. Later after PSP came into the picture he wished it was .

    It all sucks I'm sorry.

  • Some physio -where do they dig rhem up . Send some PSP literature to his department with a polite suggestion that he reads it so that in future he doesn't talk out of his backside .

  • I'll be giving feedback to the Neurologist when Bugs has her review next month. I did try to explain where I thought the remarks inappropriate, and why, and was getting the"I'm the professional and you they layman" response. So, gave up as the desire to escape grew.

  • Preaching to the choir:)

  • Tokki I think you need to contact PSPA support desk and ask them to send the local hospital physiotherapists information on PSP and its horror.

    Luckily our local hospital seems to have informed all departments and I no longer have to explain PSP to nurses, therapists or doctors. I went in for a cardiologist check and the consultant on hearing about M turned to 3 students and explained PSP to them then said I had normal heart function but the chest cramp and arm tingling probably mild angina more tests to prove it but in meantime lose weight. He also said I had been ignoring my health while looking after M and now was time to sort myself out. So here is gym membership for 6 months.

    Moral of this is that while we carers do a "great" job looking after our loved ones we must not forget or ignore our own health, which I had been doing. Hence GP getting me lots of tests since M went into nursing home.

    Best wishes Tim

  • Hi Tim, We all know that it up to us to sort our own health problems out, but how can you, when you can only get appointment in three weeks time and the only time available, you haven't got a Carer. I can't take S to the doctors for himself, so how I am expected to do it for me, I don't know!

    There ought to be some sort of reporting system, where any Carer, district nurse, or like yesterday, the community nurse from the hospice, who told me that I looked very tired, I burst into tears, saying I couldn't cope. My CHC manager knew how close I was to crashing, but has anybody mentioned this to the GP, to get me checked out, or are they going to be sending somebody to come and discuss the problems???????. Think we all the answer to that, but they expect, demand that we carry on regardless 24/7!!!!

    When was the last time anybody took your blood pressure, even though, they had just taken M's. Or took a blood or urine sample at the same time. It's never going to happen is it? To frightened of the results, they would rather wait until afterwards, so care package does not have to be increased. Hope your heart problems aren't serious and you follow the advise and do look after yourself a bit better now!

    Lots of love

    Heady

  • Thanks Heady for best wishes maybe it is NHS post code lottery again but our GP always gave me a check over every time she came to see Margaret which was about quarterly and it was her who called me in for check up in May which was when I was at my lowest after M in nursing home I would not have done it on my own as I believe I am fit enough. Typical man. All I can say is ask GP for a home visit and cross fingers it happens in a week.

    Best wishes and have that glass of red tonight and I will join you in spirit. Tim

  • Good point Heady....several times I took B to the Dr while I was sick and they never asked "are you ok" I was too I reticent to ask myself so naturally I got worse.....Heady you made a very good point I think we need to inform others of this idea...I mean I switched to B's GP to have easier access yet I am still not visible unless I'm on the schedule.

    Heady and Tim I'm going to make a post offering up an idea!

    AVB

  • Oh Heady I feel for you. I am trying to play catch up with my health. I have never had high blood pressure. The number shocked me. And I recently had a UTI go to my bladder than it developed into a kidney infection. Serious stuff . Doctor could not believe I ignored symptoms. Yet somehow I always manage to catch his UTI's in time. I have someone to watch him now while I go out but it is very very expensive. I feel guilty sometimes spending the money but then I think a care home would cost so much more if I go under. We all do the best we can. I send you massive hugs and strength. xo

  • You are so right Goldcap. I alway think of any sort of respite, as either part time or full time. S needs 24/7 care, I CANT provide that, so there has to be some sort of compromise. Ours has to be someone sitting with him regularly, with the occasional week in a nursing home. Of course I feel guilty at times, but I always think of S's favourite saying " Things without remedy, must be without regard" WE are definelty dealing with something without remedy, so we must do what we have to do, to get through!

    Lots of love

    Heady

  • Thanks, the Community Neuro Rehab team are fully conversant and were in touch on Friday ( link with the Hospice daycare team who told them ). I will be advising the Neurologist when we see her in a couple of weeks.

    Meanwhile, go into the exercise gently and build up. If you have got angina then the warm up is even more important. If it isn't booked immediately, ask for an exercise ecg. I have CAD, a fact which seems to be overlooked by some of the medicos we have come across, and am Bugs sole carer. M needs you around for visits and support.

  • Thanks tokki will do but ex RN means exercise is something to be done at the double but the gym contacted me this morning to offer their cardiac exercise class twice a week so will be trying them to start the regime and stop me overdoing it at first.

    Best wishes to you and bugs. Tim

  • Well at least something good is about to happen to you Tim . When b was still B and rather heavy , I told him to not eat anything after dinner. To my amazement , he followed my suggestion and to my further amazement , he lost about 20lbs! So I will offer the same suggestion to you as I did Bruce and hope that it has the same results...if 20 lbs...oh that would be 1.5 Stone I think.... And remember any exercise that lifts and relaxes a body part in quick succession is cardio.....jumping jacks/rope' aerobic dancing , biking running after yuor stupid dog down the street; being a young mother (and or dad).....Cardio doesn't need much more instrument than your own body and will power....so what are you doing sitting there boy? Run in place, 2 minutes now (you'll work up to 20 minutes)!!! Hey you could run in place AND be on this site....

    Enjoy the burn!

    AVB

  • No one gets it unless you are living with it or caring for someone who is living with it. It is awful! What would our loved ones do without us caring for them. I was my husbands spokesperson from the start and can't imagine him fighting this disease alone with no support from a loved one. I was so blessed to be able to be by his the entire time until his passing. Having to explain to medical folks what PSP was drove me nuts! Then they give you tips as if you haven't already tried them. Duhhh! Every PSP case is so unique but as care givers our goal is to make our loved ones comfortable. My guy has been gone for two weeks and I miss him so much. I know he was struggling with this disease but my entire life revolved around him and now I find myself so alone and heartbroken. I know he is no longer suffering but he was still well enough to live many more years. I miss my guy!

    Nikkie

  • Sending very large hug and thinking of you!

    lots of love.

    Heady

  • Nikki, be easy on yourself for now. There is not a timetable for grieving. It goes through stages that spiral. Rest, look at old pictures and dwell on the wonderful memories. Try to see a grief counselor or therapist if it becomes unbearable. Losing someone we love is never ok but when you have been the caretaker and your world revolved around caring for them, grief is wrapped up in who you are. it does not feel like it now but there will come a day when you will smile instead of cry, and you will find purpose and meaning in your life once more. If I recall correctly you have teenagers in the house? Maybe family counseling? Be there for them and each other. And when others offer to give or help let them. I know at first everyone is there but weeks later when you are past the denial stage people seem to disappear. Take them up on their offers now. But above all be kind to yourself. I wish I was there and could hold you and make it all better. But just know we all collectively are and will continue to be here.

    Take care of yourself,

    Jayne

  • Thank you Jayne.

    I have an 18 year old and 22 year old at home. The 18 year decided not to leave for college but instead enrolled at our local university a week before my husbands passing and my 22 year had just moved home after graduating from college and started an online masters program. I am sooooooo grateful that they are home with me. I don't know what I would have done without them. A counselor might not be a bad idea. Our son seems to keep things in while our daughter has been more open about it. I on the other hand have had my melt downs and I am an emotional mess. Tough road ahead. Today is the first day I sit at home by myself and it has been tough! Awful! I will get back into my work routine on Monday and the kids get back into their school routine in a couple of weeks--this should help keep everyone busy.

    I appreciate your kind words of support and you are absolutely right--everything was about my guy and PSP and it was in control of our lives. I know he is pain free and no longer suffering but I have this emptiness that is horrible.

    Keep us in your prayers.

    Nikkie

  • Hi Nikkie, I second what Jayne has said.

    My sister lost her husband, suddenly, at the age of 30. Every invitation she got, J went out. I asked how she could cope, knowing what she was going through. Her answer has stayed with me ever since. "I can't feel any worse than I do now, no matter what I do, but one day, I will be ready to go out and if I don't accept these invitations now, when I want them, they won't be there!"

    I hopefully, will be able to follow her example, when my time comes.

    Lots of love

    Heady

  • Thanks Heady and great advice. Les and I would go to the farmer's market often on Saturday's (many times he would just wait for me in the car) but I could not get myself to go today. I am meeting a couple of friends for coffee in a while and I would rather not go, but I am going to take your advice and get out of this house for a couple of hours. Your sister is right--nothing can make me feel worse than I am feeling right now.

    I appreciate your message--huge hug.

    Nikkie

  • Well Done Nikkie, I am proud of you!!!

    Sending very large hug and lots of love

    Heady

  • Niki, I am so glad you have your children. And how amazingly devoted they are. I am envious my son cannot deal with his stepfather's illness and stays away. I keep hoping he'll come around one of these days (physically and emotionally). They had a tumultuous relationship which I now realize was influence by early PSP behavior in my husband. He was extremely angry and violent for quite some time and acted irrationally. I hope your husband had his affairs in order and you are going to be ok financially. College is expensive ( I know). It is all a learning curve for me. But I am gradually understanding it all. I hold you in my heart and hope yours is not shattering. Are you going to arrange a memorial service? That can be cathartic planning and gathering photos and talking about the good times you shared. And aren't you the one who bakes such beautiful cakes? Make his favorite. Strong hugs and strength to you and your children.

    Keep telling yoursel, " Not gone, just gone on ahead". He is in a better place and is proud of you for sticking by him and honoring his final wishes. You are a wonderful wife, a good mother, an a very strong person.

    Much love, Jayne

  • Thanks Jayne.

    Your message made me so emotional. I was so blessed to have Les in my life for 18 years. Those have been the best years of my life! I am so fortunate that the kids are both home. I had just resigned from my hectic career and returned to a faculty position at the university so that I could have more time at home with Les. So my schedule has completely slowed down but yes, I have alot to do. So many things to get in order. Les was well organized and had everything legally prepared. Thank goodness. I love that..."Not gone, just gone on ahead".

    We had a beautiful service for him a little over a week ago. He had so many friends and family pay their respects. He was loved by so many and the support I have had has been amazing. The stories and memories will keep Les alive in our hearts and minds.

    I have been very sad, but I know Les is watching over us and we will get through these dark days.

    Praying for peace.

    XOXOX

    Nikkie

  • Hi Nikkie, I am so sorry to learn of your loss. I hope and pray that the happy memories will overtake the sad ones about PSP.

  • Thank you Tokki. Trying hard to only fill my mind with beautiful memories and no memories where my guy was dealing with PSP related stuff.

    XOXO

    Nikkie

  • I have followed this site for a while and it has been a wonderful way for me to know what others are going through. I live in the US and it sounds to me like I have been more fortunate in that the medical personnel I have dealt with have been more receptive to listening about PSP. Whenever we would go to the hospital or see a new doctor I would tell them that my husband had psp. Not one except his neurologist knew what it was. Not one therapist either. I would not let them treat him until they listened to me about what it was. Most listened. Many went to the computer and googled then treated. A few times when they questioned me I would say it was in the Parkinson's group, they would then nod and I would say NO !! IT IS NOT PARKINSONS !! It is MUCH more progressive, MUCH more severe. Then they listened. My husband was diagnosed in 2011. He began the falls almost immediately. 20 staples in his head then 22 more the next day. By the end of 2013 we had a stairlift in our home as I broke my tibia and while it eventually healed my leg was not strong enough for me to be his full time caregiver so we had 24/7 caregivers living with us. Then a new home with the bedroom and accessible bathroom on the main floor, walkers, wheelchairs, ramps,hospital bed, feeding tube, finally unable to speak or communicate. I am sure many of you are going through the same thing. But no medical personnel knows unless they have experienced it. So make them stop and listen to you it is your right. PSP is the most horrific disease. My husband went downhill very quickly in the last 6 months . Be ready He passed away on July 8, 2016 . The day before he died his oxygen level started dropping and he collapsed , was dead weight. We had to lift him into the wheelchair and then called paramedics while we were waiting for them I told him we would all be alright. We have 3 daughters 9 grandchildren married 50 years .but that he was living in hell and it was time for him to take the arm of the Lord and go where he is leading him. I told him this again in the er and our girls told him in the hospital room all day. ....He finally listened waited for me to wake up and died quietly the next morning. He was unresponsive from the time he collapsed. I am not having good days yet but knowing that he is at peace is what is holding me up. And our wonderful family. He suffered so very much, it was and still is heartbreaking. So hang on to your loved one. No matter how much you are tired and frustrated, preserve their dignity, be patient , it is never their fault, it is this horrific disease; hug them , tell them you love them every single hour of the day because before you know it you will no longer have a chance.

    Thank you for letting me comment my wish for you and all on this site that the Lord gives you the strength you need to care for your loved ones in the way they would care for you.

    God bless

  • May God bless you and your family with many happy memories which may help to ease the pain of losing your Husband.

    Thanks for your support for us all when you are grieving.

  • Kylie4951

    WOW Kylie...your experience with PSP sounds so much like mine. We found out my Les had PD in 2011 but then PSP in 2015 and this last year was the most progressive. PSP moved at an accelerated speed these last 6-8 months and Les tried so hard to be strong and fight this disease but in the end it took his life. I lost my amazing husband on August 8th while he was sleeping. I know he was suffering and struggling so much with this disease. He never gave up the fight! I know that he is in peace, but I miss him so much--I'm brokenhearted. I have had alot of tough days--so emotional! I would love to hear his voice one more time, feel his touch one more time and just be next to him one more time. I always told him I loved him and he would say "I love you, MORE"! I hang on to those words and know that I will see him in heaven again. I agree that no matter how tired or frustrated you are as a caregiver, love them with all your heart and be patient with them. It is not their fault that they got this awful, horrific disease.

    I am so glad you commented because honestly the folks on this site have helped me in so many ways! I don't know where I would have been without the support from my PSP friends. I also am blessed with a wonderful family and I know each day will get better. Prayers.

    My condolences to you and your family and peace be with you.

    Nikkie

  • Thank you Nikkie. For commenting to me. And Jayne. Not gone just gone on ahead is unbelieveabky comforting. Nikkie I often want one more day one more hug one more thumbs up one more I love you but I know that wish would cause him so much more horrific suffering and I cannot stand the thought of that. He suffered so..,.. So I keep pictures of him waving at me and looking directly at me and I can see the love in his eyes and that calms me. And I know it was right for the Lord to take him. And he talks to me all the time so that is good.

    There is a quote from a Harry Potter book the Sorcerer's Stone.

    TO HAVE BEEN LOVED SO DEEPLY, EVEN THOUGH THE PERSON WHO LOVED US IS GONE, WILL GIVE US SOME PROTECTION FOREVER.

    IT IS IN YOUR VERY SKIN.

    j.k. rowling

    In a bloody Harry Potter book!!!

    And the ceo of Microsoft who recently lost her husband was being comforted by a friend. He was offering to stand in for her husband at a school function for their son. She cried to him and said but I want Dave. I want option A. He put his arm around her and said option A is not available so let's just kick the shit out of option B.

    So Nikkie just remember.

    That love we had is in our very skin and every day we are going to kick the shit out of option B!!! And remember too, they have just gone ahead!!!! And they have probably already met!!!

  • Please know too that you have my prayers. For your family. Please know too that we are going through the very same things too unbelievable really. Please hang on. I think it may be good help each other. Tho you sound like you are the same age as my oldest daughter. Think now of the good times. And look for the signs. He is talking to you!!

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