Well, we all know of the problems PSP can bring and we learn bit by bit to cope with each of them but for us it has brought a couple of gifts with it.
First off, we are getting on with each other better than we have for years. The reason, I think, is to do with the fact that I have always tried to change him. Mostly into a tidy person who would clean up after himself and put things away after using them. (His most annoying trait was being so careless with his own tools that he'd lose them and help himself to mine and lose them too. Same with keys). Anyway, sadly he doesn't do much these days and if he does these same sort of things I just put it down to PSP. So gone is the constant irritation and I'm free to love the man as he is. Fortunately he is equally affectionate in return
Another gift is inappropriate laughter. And I know there are many of you who will be going "Gift? She's joking surely". I can see it can be awful to cope with but for us, so far, it's just infectious and can end up with us both helpless with laughter. It first happened when I had to apply eye ointment. He's always sweaty so his skin is slippery and it's hard to pull his eyelids apart. But in addition, from being helpfully wide-eyed at the start, when the tube approached he would clamp his eyes shut and I'd tell him off and the laughter would start. I was cross at first but then couldn't help joining in. As the days of treatment went on, it got to the point when he would be trying to contain the laughter but got this irresistible look that you do in that situation where you know you really shouldn't laugh but are having great difficulty containing it. That would set me off too.
So, two little gifts from PSP. I'm grateful for anything.
Written by
Richanne
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My husband also has this infectious laugh. It's impossible not to laugh too. Our visitors put it down to his normal sense of humour and laugh along with him. Luckily he has kept his good humour which is what keeps all of us sane. There was always laughter in our house and it's nice that it has not all gone. Have a happy day.
We are in Tasmania at the moment near our son who has not seen his Dad for over a year. There's been a big change in Jon since then but the "naughty" laugh is a great counterbalance to other deterioration for our son to witness.
How lovely to speak to someone on the other side of the world, Richanne. We live in the west of Scotland. The deterioration in one year is alarming especially for people not in regular contact. I hope your son will be supportive. Good luck.
We live in the Midlands but out here for two months. Makes the journey worthwhile. Husband and son were/are both doctors which in some ways makes it easier. Son is in ED in Hobart and Jon was a GP. Unfortunately he has dementia too but a lot of medical talk still very much on the ball. On the long journey out Jon became delusional and slipped back into medical mode wanting to order catheters for other passengers! We're able to laugh it off as he doesn't often act things out!!
The laugher is a gift, my dad suffers from that but in his case it is called PseudoBulbar and the result of many strokes. we go with the flow in my dads case and when he is done his episode he laughs along with us.
We dont have the gist of laugher with my mother in law, but somehow I make her laugh at other things, those too are becoming rare.
Nothing to admire GW. It's obviously a different experience from what you and many others suffer. I've read about it in your posts with great sympathy and our situation may well change, but for the moment I'm enjoying how it is.
That's sweet ......I wish I could see it your way.Its a hugh struggle for me, it truly has been the straw that's broken the camels back. It's driven me to tears and he has laughed even harder . I KNOW it's unintentional , I've tried all sorts to cope. The medication prescribed for it does nothing. However I do agree with others ...it has to be better than crying. It's such a shocking cruel illness for sufferer and carers. Xxx
You're not kidding. I'm sure I would be beside myself in your situation but mine is so mild comparatively. Jon acts just like a naughty schoolboy which is endearing. He never appears to be laughing at me.
Keep soldiering on and finding some consolation through this wonderful forum.
What a great story. It's wonderful that you've been able to relax and just go with what's happening. The spontaneous laughter is definitely a gift. My dad laughs sometimes, but he has quite a few times that he cries. I wish he had more times of laughter and less crying. It's horrible to watch my dad cry. Enjoy everything that you can.
We have not yet received this gift maybe one day who knows. From a happy and outgoing man to an agressive and hugely impulsive man who can explode in paranoid anger and frustration.! Though I do treasure the occasional glimpse of the wonderful man I married. Isn't it strange how PSP varies so much. I deal with the physical deterioration so much better than the personality changes. So fingers crossed for a sense of humour and the ability to laugh again. Though I should be careful what I wish for .....
I imagine we're all the same in finding physical symptoms easier to deal with than personality changes. I've not really been challenged yet so we'll see how I cope when the time comes. Luckily this forum gives you a fair idea of what may be in store. I'd rather be prepared than unknowing.
I feel exactly the same. I suppose it's easier to understand the physical problems and there is help. Either exercise or equipment to help overcome the deterioration.
The personality changes, I had to deal with straight away. S had a stroke at the beginning, woke up one morning a different person. I am convinced that PSP bought it on. Although his AF didn't help. The one consolation, before he was having two year old tantrums, at least four times a day. That stopped immediately. Knew straight away, that meant it was serious. Still took me three months to convince the doctors.
Know what you mean bout two year old tantrums they still happen in our house on a regular basis and it is not me having the tantrum though sorely tempted at times!!!
I have to admit it sets me off because bruce laughs at me....usually when I seem to need him most....but I do like it when I can make him laugh then we are in tears for happier reasons. I am glad you are such a positive person who can see the gifts among the garbage. I pray that this good feeling never leaves you.
Thank you for your kind wishes but I'm sure it is just that Jon is not in such a bad way as many others on here. I don't think it's so much my positivity as being less challenged ....... So far!
I'll tell ya for me in the begginning was the denial and he'll get better or it wont get worse...then comes the anger and that he's doing it TO me....just knock it off!....then comes the ok its not going away how can I fix it .....then its I cant fix anything but I did have a good day today" " intermingled with I can't fix anything I cant take it anymore; oh my God what do I do" ......and then finally the resolution that "oh I can fix that" and it's ok if all he can do is sit there , I will sit with him and come to life on his terms.....and be ok .......Except for the denial part (Ithink), I still go through the other stuff daily or so...so when my boat starts to list too much to one side, I come here to get some wind in my sails
Sounds like you r boat is pretty upright....good for you
Yes, we're pretty lucky compared with many posting here.
The latest laughs are about bed sharing. Jon goes to bed earlier than me. He has two methods of getting into bed. One is to launch himself forwards which always results in him lying right on my side of the bed and drooling all over my pillow. The better way is when he sits on the side of the bed and just kind of falls sideways onto his own pillow.
Tonight I had to "adjust" him and it started. He seems to think I measure the distance by the inch to ensure I get my exact half a bed and when I started to explain that No I just need enough room to be comfortable he got that naughty face on, trying to suppress his laughter. I can only manage a straight face for so long. He's just like a naughty boy, laughing at me for being too bossy.
You are so cute! For us the getting-in-the-bed regimen is much like yours. I have to convince him to lie so that his head will be on his side and when he is lying down , his body is parallel to his side of the bed and his bum is not down where his knees ought to be.....once he's in , he's in.......hahaha
Good for you! My husband and I haven't got as far as you have, probably because in the past I've been too sensitive about the loss of authority, dignity etc to accept him seeing anything about my condition as amusing. But this is changing as I have come to a sort of acceptance of my condition. The problems I have with walking are too great to be amusing to anyone but when tired my speech becomes problematic and sometimes what does out causes both of us to laugh.
At the Hospice which I attend once a week as a Day Patient, the place often rings wth laughter, and it is always the patients who make the most noise! And it always lifts the spirits.
Lovely to hear from you Patie. As many have noted on here the majority of us posting are carers. It's very instructive for us to hear from people such as yourself who are actual sufferers from PSP.
In fact it is my husband who has PSP and it is he who starts the laughing. He finds it amusing if I get exasperated with him. His efforts to hide his amusement set me off.
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