I have had a number of step downs since I last wrote here.
My eyesight is worse, but I can still manage T.V.
One of the new symptoms is 'Dead' Hands and feet.
I can feel them, but they won't respond to me properly.
When I am transferring I will my feet to move and eventually they move a little. Kevin rocks me on my feet a little and prompts and that does the trick, just.
I am having trouble holding my toothbrush and spoon as well. My fingers just won't hold them the way I want.
I speak quitely now because of breathlessness and Kevin is deaf in one ear. So communicating is a little tough at times.
Little by little I loose the ability to do things.
I can't throw things now either... So at least Kevin is safe... 'till he get's close
Its very frustrating!
I am determined to see the garden in bloom next spring.
Aww Liz, I'm so sorry, it's heartbreaking to read from a Psp sufferers point of view! Literally so bloody sad!
All I will say Liz take one day at a time, sometimes one hour at a time!
In the meantime please keep sharing, I love to hear how you are and equally I'm interested to hear all about your daily life and how you get through these shitty days.....big hugs to you and K x
Its really useful to get your perspective, Liz. Chris has just started freezing and I prompt him to move again. He is also less nimble with his fingers.
Its a depressing disease, isn't it ? Sometimes Chris won't talk to me and says he doesn't want to. I felt so hurt and then thought there's not much he can do to throw his weight about !!!
Don't know if you and Liz know this Jean but when the Psp patient freezes you can try saying left, right, left, right....slowly and this can help the patient register to move their feet or you can try saying 1,2, 1, 2
I remember dad doing that freezing when walking, very draining for us and tiring for him x
SAME HERE . MATE REMINDS ME OF MY ARMY DAYS MRS KIWI HONGEN43 AND WHO WANTS TO BE REMINDED OF THAT MATE HOW YER=DOING HONGEN 43 GIVE MY REGARDS TO YOUR HUSBAND FOR ME MATE
Dear Peter Jones of Queensland, Aussie! You seem to be my nearest contact so we must stick together! I am pleased to see you still making posts and look forward to reading them!
I can't seem to leave this sight although my husband died in June. I empathize with all of you who are still 'fighting the good(?) fight' and feel I may have insight into CBD in particular that may be of help to others - so I keep on watching.
So sorry to hear your husband passed, my mother in law is going into a home this weekend, we cant do it any longer..she is tremendously anxious, she just started coughing when she drinks and eats and has to take thickeners for liquids while she eats. Her mobility is non existant, new to the list is her breathing at night she wont sleep for fear of dying....dont kow how long she has and hate to think of the end but I am tired to seeing her this way, it kills me
hi mrs hongen43 welll first of all let me say I'm sorry that youj lost your huisband only short while ago, I'm very sorry to hear that matey onl the last em I made a mention of him I m very sorry if my last em caused you any pain I never knew and I think I made a mistake in my last em peter jones q.l.d aus see yer mate.
Hi peterjones . No harm done. I understand how difficult it is to keep track of all the posts. Some are easy to remember, like you, and NannaB. AVB, abirke, and others!
I have immense respect for all on this site, especially those like you who write of your personal battle with PSP.
My own fight with these horrid brain diseases is over!
Oh sweet Liz....How do I say "don't feel that way" but honey....take one moment at a time. Cry feel sorry for yourself and then remember sometining happy find some words of comfort from an author;poet;musician;friend;spiritual advisor...You are not alone though that does'nt make your feet go or your hands pick up your spoon....I'm sure you have PT and Ot (occupational therapy which teaches you alternatives to solving things like feeding yourself)
B's pt told him to visualize a soda can in front of him inwhich he had to step over...."Step over the can" was the verbal cue to pick up your foot...It helped/helps B to get his foot out of freeze mode////his heal will go up but his toes are "frozen" to the floor.....and with much patience we get where we need to go.....
I did something I have VERY rarely if ever done. I told my husband of your laments, the greatest being the pain of going on in this physical body and the giving up thereof.
He said "read to her John 3" And what would you want me to tell her how this helps her besides John 3:16? He said that it is the it was John 3:6...."That which is born of the flesh is flesh, that which is born of the spirit is spirit...." he went on to say that our flesh is failing, but it does not take away our spirit which we must keep going ....it is the gift that gets us to heaven...continue on now in the spirit....even though the flesh is weak......focus on your spirit....do not give that up to death ...your spirit can still be strong though your body isn't"
Well dear Liz, I was amazed (I am trembling) at this beautiful words my dear husband who is going through every bit what you are, told to you....I am not trying to admonish you only give you words of comfort.....You still have the gift of life through your spirit; hold on to it; feed it; let it continue to thrive ....pray, scream, cry, yell at God. He can take it; but do not give up on Him and the gift that is greater than the flesh....
When I read this I was moved by John 3:27 John was told there's another one (Jesus) who is baptizing and all are coming to Him. John said "a man can receive nothing unless it has been given to him from heaven"...You see John knew who Christ was and that he , John, was not Christ.... God has given you this life my friend , take heart that God has not abandoned you but awaits for your spirit to believe and follow and be with Him in heaven one day......
Forgive the sermon if I offended you . Know that even Bruce Birke whom I usually shield from this site, has empathized with you....If ever you want to just talk to Bruce...go to messages and I will convey your words....
Not a sermon Andrea, a lovely understanding piece of prose. I wish I had your faith as it would help us but unfortunately we don't. It must be wonderful to believe in God and his bible as I am sure it must help. However we struggle on - each in our own ways and find help where we can. Thank you for your reply to LizAB, I feel as if I benefited from your reply as well.
Thank you showdaddy...My husband has pulled me out of many a despair oft times just by standing firm to his beliefs while I slip and fall. But even in my depths I understood God was there for me. And that's the beauty of God....He is always there, no matter where we're at....We can be a free radical ever searching or like a carbon atom from which everything living is made. God's love is ever reaching out to both "items" ... I pray that you continue to search , ask questions and find answers....no sense being a free radical when you could be a most valuable element in this world....
I was deeply touched by your wonderful post which was so full of numanism (old usage here not the new religion), or perhaps I should just say spirit? Though that does not do it justice.
How wonderful of you to reach out like that Bruce. Deep thank yous.
Thank you K_1. Bruce is a great guy raised up are kids in this way and like I said , kept me going spiritually as well...He even used to be song leader and Bible study teacher........
It seems my earlier reply was lost, Liz, just noticed. Sorry. I wanted to thank you for sharing. I feel you often speak for my sweetheart as he can no longer do for himself. His intermittent responsiveness is very hard on us both, as it does seem that his ability to cooperate comes on for strangers and is lost for me. I am too impatient with that. I need to feel it more from his perspective, and you help me so much with that. He also seems able to live for the good moments, and I need to make more of them! I plant the tulips all for myself now, though, as he doesn't seem to care much for the garden. Always glad to hear from you. Love, ec
No offense taken here. I am a sorry for your spiritual life which is driven by your choices. I think we can all appreciate each other's candidness. We are just trying to help get ourselves our loved ones; our carers through this experience. It was good for B to talk about what he feels going through this. And I pray others might consider his experience as they go through their own!
Love you Liz and I hope you continue to find good days even in the bad....
She did not pity your want of having one, she respected the difference between you.
She did speak from the heart... reaching out to thank you for the way to used your world to reach into hers with comfort and care.
We all have differences here, but we have a commonality of suffering and though we explain our life experiences and form our beliefs so differently, we have that.
Your posts are treasured in or house, by both of us.
Personally I really value the way we can accept different views of the world.
Chris and I don't have the religious beliefs, I envy those who find comfort in god and respect their beliefs. I do appreciate their prayers, Its the tolerance I value so much.
We all support each other in the ways we find meaningful. I value that.
A very moving post Liz, Ben is slowly loosing a lot of basic skills and he hates it, he has said he isn't afraid of dying and difinately doesn't want to prolong his life with medical intervention. I to having been planting bulbs ready to greet the Spring and am sure that Ben will enjoy them with me. I love my garden and treat it like an extra room and spend every minute there in good weather, it is a sanctuary and helps to de-stress, that is why I dread the winter months trapped indoors.
I got up early. The cat came and said "hello and wheres my breakfast treat?" Everything very quiet and the house feels a little empty.
Though I feel sad and miss Liz, I have time to concentrate on something for more than just 10 minutes. I feel calm for the first time in a year almost. Its good
In a moment I need to make a few phonecalls and then I am going to sit and read... Bliss
What are tonight's plans? Where are you going tomorrow?
Enjoy the peace and quiet Kevin, I know it's lonely, but try and make everything a treat, which, by the way it is(!!!) This time next week, that book will remain closed and you won't know which day it is again AND you will be nagging someone in need to do exactly the same as you are doing now!
I know exactly what you mean, I am experiencing the same problems with controlling my hands and feet.
It's not a nice feeling, is it, when you get stuck halfway across a room, just standing frozen in my walker, apparently, from un-initiated people's stand point, for no good reason.
My eyes are often stuck closed, making me appear asleep, and all the time I'm silently shouting, "Move for God's sake, you silly sod!". And, like you, I've often experienced a troublesome toothbrush or spoon, which simply will not co-operate.
And I know that my darling, Trish's, patience is well and truly stretched to breaking point because of my mega stutter and very quiet speech - like Kevin, Trish is partially deaf in one ear.
Still, as Winston Churchill would, I believe, have agreed, "When the black dog comes calling, just keep buggering on until it buggers off!".
But thankfully, Liz, I have a very loving, truly patient and understanding family as do the majority of us.
So, it's peddle to the metal, Liz and keep on trucking.
It helps me feel less alone to know others struggle with the same things, spoons, freezing and all. You describe it so well.
It's odd, but Churchill's black dog does not visit me. Sometimes, very occasionally, I have a good cry and then pick myself up and keep going. I have been spared that at least.
Kevin might be my carer, but I need to keep an eye on him. Unsupervised men are liable to get into difficulty in the domestic world. (He's typing and it was fun to get him to type that ) .
Strength to you and I hope to read more of your posts.
So Sorry. Its heartbreaking but all of the PSP sufferers are in their "cave" and can't get out. Though you all hear us. I'm proud of you Liz, for continuing on and letting us know.
I am sorry. I am glad you want to see the garden in bloom in the spring and I hope you will. My sister has PSP. She is 51. I do not know if my sister still has fondness for me. It seems she only relates to me and others as if we are all there for one purpose: to serve her needs. Do you have a sense of this? Do you think she could have lost the understanding of what empathy is? She once had it beautifully. Does she not remember who we once were as sisters? I feel so all alone. I can't say any of this to her because she cannot handle emotions now.
Hello Pages
She may not have lost her sense of empathy. I haven't and I am now well down the PSP road.
Personal care is embarrassing. So I wonder whether she is being a little distant because of that. Being dependant on others is horrible. Particularly great, but it is better than having a stranger do it.much greater then.
My husband, Kevin, who is typing this for me, says that PSP makes me present as a little distant and 'flat' in terms of my personality. This is what PSP does. Though I know I love him very deeply. It just does not show so much. Having PSP is a bit like being imprisoned in yourself. Sometimes your thoughts and feelings just never make it to the outside world.
Caring is very lonely. Both those with PSP and the carer can become isolated. This forum is a good place to reach out.
Do you get time off? That is very important. There will be agencies locally who will provide a sitting service. Usually f.o.c.
Well Liz, if we have any more days like we had today....26*C (79*F) in February....things will be blooming in no time at all...In fact we never got much below 0*C So last yewars bugs will be added to this years bugs I'ms sure....
26 degrees C in winter? Is that anywhere near normal for your part of the world?
Yes, Kevin tells me that all of the critter chewed vegetables he grows are 'pre-tasted for quality.' Without a few frosts he would be bringing me cabbage stalks!
I am so looking forward to the warm weather. Kevin and I are going to sit down and plan the flower borders today. They have always been my responsibility so he has to do it my way
I get by - the food here is pretty good so I have extended Kevin's probationary period again. He's doing OK - He's been on probation for 16 years, so he might get a permanent position here with me.
I hope you both are managing. Kevin reads me your posts.
Make sure he knows how to mani-pedi.....I am horrible at cutting Bruce's nails.....I usually just yank mine off so haven't had much practice with the clippers..hahaha
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