Larry’s ever so slow decline continues. This morning he got me up at 1. I had just been up for the bathroom. Going in he had a urinal in his hand with urine in it. Took it from him. Put it on the floor then went back to bed. He called me again. He had to have that urinal back. There are 6 hanging on his headboard. Took it into the bathroom and dumped it into the toilet. The urine plus his glasses came out. Fished his glasses out of the toilet and cleaned them. Took everything back. He was sitting up. Looking for the yard stick. No idea what he was thinking. Might have been having a waking dream. Sat with him for a while. He finally said I should go back to bed. Told him he should do the same and he did. With a diazepam and two ibuprofen I slept well for another 4 hours.
When OCD and PSP collide.: Larry’s ever so... - PSP Association
It's not funny because you must have been exhausted but I did laugh at the glasses.
Sending you a big hug Jeff one for Larry too with wishes for a peaceful night
The great thing about this website is no matter how bizarre he acts I know it’s “normal”.
Can you help me understand " normal" my son is newly diagnosed and scared and we have no idea what it is all about
Your son is diagnosed with PSP?
If he is all kinds of things can happen. If you read this site regularly you will find out what potentially could happen. No two people have the same symptoms.
Some type of palsy in his right eye common to Parkinson's, stage 4 - how is it I wonder that it got to stage 4 without anyone recognizing stages preceding the end. He is very concerned about going blind and broke my heart when he said, "I don't think I want to live if I am blind, Mom." He is 38. He is struggling with a lot of health issues at this time.
I am going to pick up two copies of a book I have learned about called Grieving A Chronic Illness. I have been chronically ill for some time and find myself doing "catch-up mourning."
So sorry to hear your news I have a son that age but it’s my husband that has PSP no 2 people are the same and if it’s any consolation I have not heard of anyone going blind with it my husband wears dark glasses sometimes the light affects his eyes
A year ago we got his catteracts done in both eyes he has 20/20 vision
God bless you hugs to you and your son
Thank you, I will pass your encouragement along. Where could I get more info about this palsy?
Hi PN... Your son should be diagnosed by a neurologist or a movement disorder specialist if PSP is suspected. Has he been diagnosed by a specialist? Is further testing scheduled? At his young age and that eye symptom - it's unlike anything I've heard of on this site (but I'm no specialist!!). I hope there's more exploration going on....
Yes, he is undergoing extensive testing by two different hospitals and three moving disorders neurological specialists who have actually recorded his neurological exam for ongoing study and review. They do say his many symptoms are rare and have done extensive blood work and will be ordering an MRI.
They have diagnosed the palsy in his eye and we are just waiting on test results and trying to adjust to all the news.
He has other medical problems as well and is scheduled for a double surgery in July.
I hope it isn't PSP, but if so, you will find sympathy from one of our members, Enjoysalud whose son was diagnosed at an early age.
Best of luck! I'm sure it is a very anxious time. Hang in there and keep in touch.
XX Anne G.
I laughed but I know I shouldn’t have!! I feel your stress!!!!
Hugs honey x
You have to laugh to survive !!
Well done for keeping your cool. It must be so confusing for him.
I well remember the up and down all night for various reasons, I can totally relate. Broken sleep, lack of sleep will have a toll on you so try to get rest when you can.
You are amazing! I don't think I would have been so calm! It is so hard to keep reminding yourself that it's normal?
Marie x. Hugs to you.
Oh Jeff -this did make me chuckle !! But I feel the pain of sleepless nights. The tales we all have of PSP are unique almost bizarre even a creative writer would not think this one up!!!
Sending lots of love and hoping the confusion settles a little
Keep on smiling, Jeff! And I thought we had enough urinals with two! Hmm, should I learn something from this?😂😂
I’m so glad to hear that I’m not the only person who thought this was a little funny. I read it twice to make sure I understood what happened in the “wee” hours of the morning. Maybe not funny for you right now but please cherish the moment anyway. Times like this will help us smile when or if the journey becomes more challenging. I hope that you can get some much needed rest or maybe someone who could come over and give you a break for a few hours.
I left hubby alone for twenty minutes today and took our two dogs for a sprint/walk in between sprinkles. The air was so fresh and clean and when I returned home I felt so much better. Hubby was right where I had left him and he wasn’t aware that we had even ventured out. No harm came of me being gone, but it did make me feel like I was being naughty. He was fine and I didn’t go very far so it worked out this time. I just needed a breather.
Thank you for painting a picture of your experience. Sometimes it’s enough to share.
Sweet dreams from I SewBears
I thought it was funny which is why I shared it.
Today Larry’s cousin Diane will ride me around to do errands. I will be out of here for two hour and he will be fine for that amount of time. Diane and I have a weekly bitch/therapy session about what is going on in our lives.
Your wry way of telling the story made me smile, you have such patience and strength. Now if he had said he couldn't find his glasses would you have thought of looking there? Bet you will in the future!
Hope you get some quieter nights.
I remember nights like those as well. Glad you got some rest. Their minds like ours ha ha go on strange directions which we can’t understand. I commend you for your patience. I hope wasn’t.
I asked my husband who has CBD “why would Larry put his glasses inside a urinal?” Hubby’s reply; “I’m sure he had a reason!” 😂