I just thought I would say something about my experience of having PSP.
I now have difficulty typing and finding the words I want. So my lovely husband Kevin is putting my thoughts down for me. (He said lovely I didn't!)
I can no longer walk without someone steadying me and then I merely shuffle.
Even when I am sitting still I feel like the room is moving.
When I am sitting I feel like I could just stand up and walk and I have to remind myself that I can't. That makes me feel sad and useless.
Mentally I feel like I am slow and looking out through a veil.
I have a really nice carer from the agency who helps me bathe and dress, that feels so humiliating, particularly as I try and support myself whilst she takes my trousers and knickers down.
When I come down the stairs on my chair lift I put the seat belt on to stop me throwing myself off the chair just to be difficult. In general I feel like doing the opposite of what I am being told, because I want to assert myself and be independent.
I hate PSP for the way it makes me feel: Angry, useless, trapped and dependant.
I feel that I am really good in groups where I get patronised by volunteers, because I can put up with it and I can ignore a lot of the rubbish being talked by them, "How are we today then?... that's lovely, well done..." All said like I am a child.
I love my husband very deeply and I have wonderful loving nieces and sisters, but I want to get this PSP thing over. I don't want to be alive and suffering and it just get's worse.
I feel good that I have an end of life care plan, have done my will, and have paid for my funeral. I feel especially good about the Do Not Resuscitate form and the LPA pinned to the wall in an envelope by the front door where an ambulance crew would find it in an emergency.
I am not depressed and I enjoy warmth and hugs from my husband, friends and family. I watch comedy shows and laugh until I drop (Kevin says that that is an unfortunate phrase LOL - I'm keeping it in). I just don't want to wait years for my time to come with this broken life.
This forum gives me so much. The information has prepared me and the warmth and support going on here is wonderful.
Thank you, thank you, Liz. And Kevin. I wonder all the time what my sweetheart is thinking and feeling. He can't say anymore, and was never one to complain. I'm sure that most of what you have said would be familiar to him. Thank you for making the effort to speak for yourself and for him. It's a beautiful post. Long may we all laugh...til we drop! Love, ec
Thank you so much Liz for taking the time to write your informative post, I often look at my husband and wonder what he is thinking, now I think I can understand a little better even if it did make me cry,
Dear Liz and Kevin, Thankyou for writing such an informative post. Liz for your thoughts and Kevin for getting them across to us. I can understand you want to get this PSP thing over but it must be a blessing to know you have such a loving husband and family.
I smiled when I read the piece about being patronised by volunteers. With my darling, it's close friends as well. I'm amazed at the number of people who pat him on the head or stroke his hair as he sits in a wheelchair, or shout at him as if he is deaf. A few years ago, if they had stroked his hair while sitting on an ordinary chair, I would have been a bit worried. They all mean well though.
I am amazed at your positive attitude and am pleased you are not depressed but wouldn't blame you for being a bit fed up at times.
Thanks Liz for your views, and Kevin for writing them(that must have been hard!) S can no longer communicate, so I have no idea have he feels. I will try and remember your comments, next time I get frustrated because he has done something "stupid".
Know that we are all here for you, listening to any of your posts and giving Kevin as much support that we can, so he is able to look after you, the way you deserve.
Wow, thanks Liz. So good to hear from the inside, your bravery and humour shine through. Mum has CBD and is definitely 'all there' but often seems distant...... looking out through a veil, yes that makes sense.
Hi Liz, In a way must be hard to have your hubby write this for you because it is about YOU, I am sorry you have PSP what a lousy terrible disease PSP is, my heart aches for anyone who has it, but I commend you for letting all of us know what you feel inside your heart, as some of our loved ones can't talk to let us know their feeling. We all pray for a cure. Thinking of you and a hug. Nettie
Liz, thank you for your post and your lovely husband Kevinfor assisting you. My husband has PSP and finds it hard to describe how he feels so I will show him your post to see if I can get any reaction like, that is how I feel. Keep watching those comedy shows and laugh out loud. Sending you a big hug. Nanny857 x
Thank you for telling us how you feel. Up untill a few weeks ago my Brian was able to articulate what was going on and how he felt. But now i have to interpret the grunts that he makes (sometimes i get it correct but not all time). Janexx
Thanks for posting, it gives us an insight in to what our loved ones are going through. Dad can't talk and it has all happened so fast so we can only guess how it is for him. God bless you x
Liz, thank you, thank you, and thank you! For being so brave and fearless in your battle with this disease. Your insight has helped so much in how I approach issues with my sister. Although she can still talk, her ability to verbalize her feelings is nonexistant. I've been having such a terrible time in understanding why she does the things she does. Now, I have a new perspective. Tell Kevin a big thank you, too, for helping you get your message out there. May you be blessed with continued laughter and love. God bless.
Thank you so much for reminding me, as carer, what it must be to be the person with this disease especially when our loved one can't or won't communicate.
Thank you so much Liz (and Kevin) for this lovely insight. As carers we all need reminding from time to time what it is really like to suffer from this horrible disease.
Thank you so much for this touching and informative post, I would imagine that Ben would say exactly the same thing and when heviz feeling a bit better I will read and hopefully discuss what you have said. The night Ben broke his hip and we were both awake all night the next morning some stupid do gooder volunteer woke us both up to tell us she was a volunteer who went around the wards chatting to folk and commented that Ben 'had beautiful big blue eyes' made us both want to vomit. I love volunteers who just act normally and have a joke. It is so demeaning. Your post gives us caters a greater insight into what's going on inside you head although I did have a pretty good idea that's what it might be, I know that's how I would feel. Love to you both.
Thank you so much for this insight into your heart. I am sure its very close to how Chris feels. We have some battles which I expect fit the feeling you describe of needing to express independence. I also cringe at how some people talk to him as if he is a baby. He is deaf anyway so that doesn't help.!!
Like you Chris feels ready to give in when it is time but is not depressed. He says he is happy. He enjoys eating, t.v., family and it is enough at present.
Family is important. The grandchildren don't patronise him. They wait patiently whilst he struggles to find the words and compete to explain his comments. They laugh with delight when he makes a joke.
We focus on making the most of NOW.
love, Jean x
To all
Thank you for your wonderful replies.
I am often moved when I read the many posts showing such deep love and commitment you have to caring for your loved ones. Also the heartbreak and fatigue you go through.
Thank you so much for sharing, It is so helpful and a good reminder for all of us carers how PSP impacts on individuals. Hope the patronising volunteers keep their distance and you keep laughing for a good while yet.
I felt ashamed when I read your post . As a very tired carer, who has had to deal l with unpredictable behaviour, lack of sleep, and other things, I have not been as patient as I ought to have been. Thank you for reminding me of how the patient feels. I get so tense and scared that sometimes I forget the other point of view. My best wishes to you both.X
Writing Liz's posts has meant us both sitting down and talking about PSP... Our losses, pain and struggle... As well as funny moments. We have had a few tears writing and it has brought us closer together.
She is a stickler for me writing just what she wants too.
So there have been some laughs about the madness of it all as well.
She capped it all by slipping onto the floor from the settee whilst I was in the kitchen... Chuckling she called me through and said, "I think its Elk time."
She still has a hell of a sense of humour and we are still making good memories.
Liz, Kevin, treasure these times! S can't communicate any more, so I haven't a clue what he is thinking about, going through. He suffers very badly with apathy, so I'm not sure if he even cares!
Really glad you have both got something out of these posts, I know the rest of us have!
If it's any comfort Liz, sometime ago, S did suddenly start being able to talk again, for a brief period. So I asked him, how he felt, being in his own world, he replied "it just feels normal!"
My one bit of advice for you both, is learn NOW, some means of communicating, in case your speech does go. Be it writing in large letters on a board, iPad app, or just hand signals. It will be so much easier, while you can still ask questions, or explain a certain gesture. Though most of S's are pretty obvious!!!
Dear LizAB, Thank you so much for that. It has helped me to understand what my father went through. He absolutely hated being moved with the hoist and now I can understand why. Probably it felt like the floor and all things were moving and that made him feel uncomfortable and frightened. What used to make me so angry was that they used to wash his bottom whilst still suspended in the hoist!! Incredible. I did complain and that undignified and thoughtless behaviour was eventually stopped.
I hope you are having some good days, perhaps you have some summer sunshine. Here in the UK it has been a miserable summer with lots of cloudy, rainy days. Best wishes.
Dear Nader
I hope it helps to have a better idea of what your father went through.
Dignity pretty much goes out of the window, but that sounds so unnecessarily so.
Despite all I expect he was so grateful for the care and love you gave him. PSP is such a lonely illness.
Thanks for your good wishes.
We are in the summer-less U.K. too.
But when the next shines I will be out in the garden amongst the flowers. I like that.
Liz and Kevin thank you both also, helps to see things in a clearer way. George is not to bad st the moment, coughing a lot and making funny noises, George has also no empathy really hard to deal with, when I talk to him, he just looks right through me, sometimes I feel like giving up, now I have read your post, will try and look at things differently. Big hug to you both. Yvonne cxxxxx
Such an insightful post Liz, thank you so much. I look at my mum who has nearly lost all forms of communication and literally weep for her. I think this is one of the hardest things for us, we have lost her even though she is still there. I can see the despair in her eyes by not being able to communicate. Your post has given me an insight into how she must be feeling. I wish you and your lovely husband Kevin all the best, stay strong.
She is not able to gesture, use a keyboard or even use the pictures that we have laminated for her to simply point to (toilet, water etc). She just gets very frustrated and tearful when she can't get her point across. It really is very hard.
Thank you Liz and Kevin the author and the editor! I am going to read this to my husband tomorrow and ask him if this is how he feels. I know, I always have to remind people B is quite cognizant...he just can't respond...one lady who is a psychiatric nurse none the less, talks real loud as if more decibels makes it more discernable ....he can hear and discern...but thank you for at least talking to him in the first person...most just give an uncomfortable smile and ask ME how he is doing....I usually turn to him and repeat their question in matter -of-fact way, he can nod and say hi and ok So he responds thusly.
How long do you believe you have had PSP and how long ago were you diagnosed? Are there any particular exercises, diet , meds that seem to help you with specific parts of your life. Have you ever been in a study, What activities are you and Kevin involved in together or separately that help you both relax? Forgive all the questions It's not so much nosy as it is curious and wanting to find combinations of meds diet exercise and even modes of relaxation that keep PSP at bay even for a little bit.
Thank you for writing . It would be very interesting if you wrote on here your own
Day in the Life as a PSP Patient You know how you feel not just generally but how you feel at that moment...like " I found myself not being able to stop crying, though even though I didn't feel like crying ...." or " I answer in my head but when I try to speak..."
Ok Liz and Kevin you can answer if you want . I hope you have many happy moments together. and remember we are always hear if you need us.
This'can't respond' thing with PSP is so very terrible for both. We dread that coming and posts like yours help us focus on getting the best of each other while we can. It's grim isn't it?!
A day in the life of me? - (Embarrassed smile).
I tell you what. I'll start another thread of things which I like and things I find difficult in the hope more folk might see it and find it useful.
I read your posts and am awed at the love and hard work you put in to caring for B. You are one of the ones preparing us for the way it will be for us too one day. Thank you for that.
Thank you Liz, what a sweet thing to say. If I can give anyone a piece of advice on how physically to help your mate its "be creative" . I think we can all agree Theres many things in our houses not being used for their 'intended purpose' from tubes to tape to to pillows....little songs to help the patient remember walk....or For instance in your house, you have author and an editor/publisher! Keep mind open when looking at the how to solve a problem...who knows you might have the cure right there in your herb garden... You know, thyme and worms mixed with CoQ10 ! Now there's some thyme in a bottle for ya...boo...yahooo
Oh and to be honest with you, I haven't had the chance to read that to him cuz well uhm I forgot....and though I have been very busy! And today I;ll be with my daughter as she gets all 4 wisdom teeth pulled....alot of bouncing from her house to mine...she wants to stay home and a friend might come and stay . but if I get back to the computer today , I will definitely read it to B.
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