Someone asked what my days are like, what do I do, what helps and what not.
So I thought I would put my thoughts down, knowing that these might be absolutely useless or immaterial to others.
Things I like:
My cat Tootsie (Princess) She is a rescue cat (who Kevin says is a lovely motley moggie). She is fearful of people. When my light goes out at night she jumps up and lies on me purring to settle me down. When Kevin get's my morning coffee in bed she follows him in and jumps up again purring good morning. Yesterday I had a siesta and she gave up her afternoon nap to lie out on top of me... I think she knows I am not well and she is mothering me. She is a constant companion in this world where PSP increasingly shuts me out. Her grumpiness and stubbornness is amusing too.
Oh, and my husband who's typing (He put that in ) - We are very close and we spend more time together these days, while we can, doing things like writing this, or sitting in the garden where he planted a big flower bed with the plants I chose. I love the flowers.
I like good food. Fortunately Kevin loves cooking new and different things so that's good.
Cuddles with Kevin. Cuddles are always nice, but with PSP the world seems distant and it can get lonely inside and cuddles are close and connecting for me.
I love meeting with my nieces who are 18 and 19. Though I get stuck about what to say to them, words don't come and conversations move too quickly for me, we are close and I love to hear their news. It's time away from my struggle, time to see good things happening.
Laughing. I love comedy shows and Kevin knows just how to make me laugh too. We laugh quite a bit... more time away from sitting and waiting and sitting in my PSP world.
Having my Will, DNR, Funeral and LPA's all done and dusted is a big weight off my mind. I feel safer with the LPAs' too.
Reading this forum and learning about what is to come and seeing so many good examples of how people can, and do cope and how they struggle through. Its' do-able... We can do this.
Treatments:
We tried CQ 10 in largish doses and could not discern a slow down. We stopped it after a year and we don't discern an increase in deterioration either.
We tried Methylene Blue as well... I had blue lips and Kevin blue hands... We gave up on that after a little while... at least with that one the consultant didn't throw it out of court (like CQ10 "there is no convincing evidence that it helps"), but muttered that there may be something in it. No change before or after stopping.
Now I'm taking Turmeric, not for the PSP but because it is a powerful antioxidant and anti-inflamatory... Kevin thinks I am brighter since taking it.
I use an exercise bike daily and go to hydrotherapy weekly and have a deep tissue massage at home once a week. The hydrotherapy and massage gives me such a sense of well being and makes me soo relaxed. The daily exercise bike stops the leg twitching, which was mild, and the Physio (monthly) commented on my improved mobility when I saw her.
Bad times:
Sometimes Kevin could not cope with my behaviour, or having to repeatedly say the same things many times a day day in and day out. He would then become angry or upset. Then I would be upset. We had a year with a lot of this. Both struggling and being in tears at times. Somehow we have got past that now. Writing these posts has helped. It has made us talk about the hard things from both sides and given us a more mutual understanding.
Well that's some of my world as it is for now.
Warmly with thanks to all here for the help on this journey.
Thank you so much Liz and Kevin for writing your feelings down for us to see. My husband was never one for saying how he feels, he was always "fine" and now he can't tell me and I know he is not fine but do my best to understand.
We were all talking recently of how animals can help and your cat certainly seems to. C loves our Guinea pigs sitting on his chest or lap and it makes him calmer when he gets distressed for reasons unknown to me.
Keep post.....and keep cuddling. C can't cuddle me but I give him plenty.
Oh, I hope they were good tears... PSP brings so many of them. I have just had my sister to visit and we both sat in floods and then hugs and then smiles... Love and hugs is all to me.
My likes have had to become simple I guess.
Kevin and I have struggled through the PSP to keep our love going and that has been the big one.
I read this after I wrote my post on your other thread...I stand corrected on the thyme....maybe it's Tumeric, worms and ...?
Kevin, you know saying over and over and over is not going away, how is it you finally came to terms......in one post, MANY months ago, we deemed ourselves Queens (or King) of reiteration. "Hands to hips, so you don'[t slip or heel to toe so you can go? etc. that's when B using his walker more....Do you have any helpful ideas?
Is your physio and massage insured , or do you have to pay...and if insured how'd you do that?
You say that conversations move too quickly? Do you feel that you are able to understand all that was said. It's one thing to hear ...a tv show... and understand it. Its another to hear it and repeat it...do you feel like you can understand whats being said? Would your ability to respond be any more initiated if given more an opportunity ie conversation with longer pauses in between? would you rather have an alternative way of speaking...ie tablet where you could write it big letters and prespelled words like pronouns, he ,him or words like it's , the ,etc or atablet that is predictive like your text on the phone ? Do you feel like you want to be a part of the conversation? Even early on, I found B not really wanting to be a part of the chat , and when asked a question, might answer with a cop out, "I don't know" cuz I know he did!
Have you done much research on specific sites such as Mnd0vrMnky has gone many places and come back with lots of info...check out his site....If you are in the UK ok I just went to your profile anyway was getting your end of life information easy or hard to attain. Do you have any helpful hints for those in the UK in these matters?
You have probably answered many of my qs already. Forgive my dulciosity ! P
Please continue to write a day in the life ...maybe compare life now from 6 months ago ; a year; all the way back til you remember when you had symptoms....
I hope its alright to reply like this. It keeps it simpler for me and Kevin and I have to talk quite a lot before he can type a reply for each part.
I read this after I wrote my post on your other thread...I stand corrected on the thyme....maybe it's Tumeric, worms and ...?
Worms, not tried them yet... let me at'em.
Kevin, you know saying over and over and over is not going away, how is it you finally came to terms......in one post, MANY months ago, we deemed ourselves Queens (or King) of reiteration. "Hands to hips, so you don'[t slip or heel to toe so you can go? etc. that's when B using his walker more....Do you have any helpful ideas?
This bit is from Kevin: Someone in a post said to me in the nicest way possible, "Get used to repetitive." Our issue was highly irritating repetitive stuff. Much of that has stopped now and we are back to everyday repetitive which is OK. Much of that has stopped now and we are back to everyday repetitive which is OK. Much of that has stopped now and we are back to everyday repetitive which is OK.
Is your physio and massage insured , or do you have to pay...and if insured how'd you do that?
Were in the U.K. We hope it will be included in our NHS Community Health Care Budget which is under discussion now. For now we are paying. We never bothered with private health insurance as the NHS covers just about everything you might want. Every pay packet or salary has a levy on it to pay for the service which is delivered free on demand.
You say that conversations move too quickly? Do you feel that you are able to understand all that was said. It's one thing to hear ...a tv show... and understand it. Its another to hear it and repeat it...do you feel like you can understand whats being said? Would your ability to respond be any more initiated if given more an opportunity ie conversation with longer pauses in between?
I think I understand everything. But I need time to find words and help to get my ideas out. That's what Kevin does for me here. (Kevin: Liz laughs at quite complex political or social jokes. Understanding complex humour is a good indicator of underlying cognitive function.)
would you rather have an alternative way of speaking...ie tablet where you could write it big letters and prespelled words like pronouns, he ,him or words like it's , the ,etc or atablet that is predictive like your text on the phone ?
I have trouble remembering how to use a computer now. I call Kevin who sorts things out for me. Fine motor co-ordination is a big problem for me. I had to give up my smartphone recently. My eyes have trouble converging and focusing and they get sore. I don't know how much longer I can keep watching T.V. or read a screen.
Do you feel like you want to be a part of the conversation? Even early on, I found B not really wanting to be a part of the chat , and when asked a question, might answer with a cop out, "I don't know" cuz I know he did!
I have always been one to listen to a conversation and only to add things later. I still do that. Conversations are tiring. Everything is tiring! Could that be why he says he doesn't know... It takes so much effort...
Have you done much research on specific sites such as Mnd0vrMnky has gone many places and come back with lots of info...check out his site....
I don't know that website, do you have a link? I used to do a lot of reading about PSP... Kevin usually asks me what to do if there is an issue.
If you are in the UK ok I just went to your profile anyway was getting your end of life information easy or hard to attain. Do you have any helpful hints for those in the UK in these matters?
No, I knew exactly what I wanted (remember I worked in a care profession) It was just a case of the Hospice asking a lot of questions and me answering them. So they knew that we were all on the same page and I knew what they could do.
You have probably answered many of my qs already. Forgive my dulciosity ! P
It's not a problem, I'm not sure my comments help much. PSP varies from person to person.
Please continue to write a day in the life ...maybe compare life now from 6 months ago ; a year; all the way back til you remember when you had symptoms....
Thank you so much K&L,
I remember not having symptoms and I remember earlier stages, what I could and could not do. But not exactly where I was on the long step down six months ago.
I really wish you both the very best of what there is.
To "like" this, Liz and Kevin, is way too weak. I am deeply grateful for your taking the time to share your experience. I am still too often in the nagging and being upset phase, although less than last year, and it helps so much to get your perspective. I was getting impatient last night with my guy constantly popping up like a jack in the box while I was trying to feed him supper and trying to eat my own, and he couldn't tell me why he was doing it at all. I kept asking what he wanted, and he finally said "for you to have more understanding." That hit me.
I feel your words sinking into my heart. They came at the right time for me. Thanks to you, I do have more understanding. More laughing, more cuddling are in our future. Thanks from both of us.
Lots of cuddling for us today, thanks. Very nice for us both! And friends just came by with their 10-week-old lab puppy just now, so we've had some very happy moments. It helps to be reminded of the important things!
We are at my sweetie's place in the mountains for the weekend. Some extra excitement: a bear apparently came by while we were away during the week and bent into a U the iron "shepherd 's hook" and ripped open the steel birdfeeder hanging on it.
We are having a drought, and they say the bears are getting a bit desperate. I will be paying attention while I go out blueberrying tomorrow!
Hugs back to you and Kevin, Liz. Honestly, this site and all of you folks have saved my life more times than I can count!
Well I hope you didn't use all of your shot gun shells on the G.P.! You might find yourself picking blueberries with a big furry neighbour
Puppies: they just charm me... such a great reminder of what life is about... lovely
Sitting here in my little English House with my small (for Canada) cottage garden... I'm imagining you half way up a mountain and fighting over berries with a bear whilst popping back to do caring!
I'm still at the stage of being angry with him when he isn't co-operative. Can't believe it when he says he doesn't know why. I struggle with recognising that him being completely co-operative means him being less independent but one of the reasons we fell in love was because he was a free spirit, a loose cannon. This disease is such a test, isn't it ?
I will focus on cuddles though and tell our children. They do cuddle him but perhaps more !!
"I'm still at the stage of being angry with him when he isn't co-operative. Can't believe it when he says he doesn't know why."
Ohh, something like this has been a painful one in our household too.
Kevin says he recognises this completely.
He would suddenly be angry or rant because of something I did. He would say things like "that is the tenth time today" and "I have said this three or four times a day for the last year... Please! It's driving me crazy."
He would try to explain why what I did got to him so badly, but I thought it was just him loosing the plot unreasonably. (He always used to be so calm and this behaviour was soo not him."
I still get upset when I think back to those times. Despite his explanations I just cannot see that what I did could make him so angry.
I don't know what happened, but somehow we are in storm free water now. Kevin says my behaviour has changed and I think he is just more relaxed.
"but one of the reasons we fell in love was because he was a free spirit, a loose cannon. "
He is probably just the same inside. He probably loves you just as he always has. PSP can be such a heartbreaker for both.
At the same time we do tell each other we love each other and show it. Mostly I resent his not responding to me. It feels so lonely. Then he stands up and I say " now what are you doing !!" He says, " I want to give you a kiss ! "
Thank you sooo much Liz and Kevin. Your posts allow us, as family and carers to begin to understand what you and our loved ones are going through. You are both very brave to have shared your inner most feelings on the forum. I can't thank you enough.
Thank you everyone, but especially Liz and Kevin, for this thread. I have only just caught up with this for some reason but I am sitting up in bed (annoyingly not asleep given that it is 6 in the morning and D IS asleep!), and it has really made me smile as everything you describe is just like what we have gone through here. I especially like Jean's description of getting irritable about Chris trying to stand up only to be told it's because he wanted to kiss her - doesn't it just make you feel a worm when that happens!
Many thanks Liz for telling us how you feel. It is so helpful.
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She is a rescue cat (who Kevin says is a lovely motley moggie). She is fearful of people. When my light goes out at night she jumps up and lies on me purring to settle me down. When Kevin get's my morning coffee in bed she follows him in and jumps up again purring good morning. Yesterday I had a siesta and she gave up her afternoon nap to lie out on top of me... I think she knows I am not well and she is mothering me. She is a constant companion in this world where PSP increasingly shuts me out. Her grumpiness and stubbornness is amusing too. 
) - We are very close and we spend more time together these days, while we can, doing things like writing this, or sitting in the garden where he planted a big flower bed with the plants I chose. I love the flowers.
The things I have learnt!
