A bitching post.

Larry is getting on my nerves. Helping him move around I am nearly losing control of him. He isn't any help. We are going to fall one of these times. Last night in transit from his bedroom to the bathroom and back we nearly went down three times. The maddening part is if a physical therapist were here he'd have no problem walking around. He performs for her. I feel like he's putting his movement all on me. I can't do it by myself. He has to help. Enough for that bitch thanks for listening.

[easterncedar]

I know, I know, but he really likely can't help. There is some level of subconscious attention that kicks on when we are with strangers that relaxes with loved ones. I saw it all the time with my guy, which is why I loved going to PT with him. So nice to get him moving. I blamed him a lot for not trying with me at first, when I believe now he was doing all he could. We did fall. He fell. It will happen. So you have to come up with strategies for moving him that will save you both. I'm still dealing with the damage I did to myself...forget all the smashed furniture!

And bitching here is always encouraged!

Best, ec

[Flemingc in reply to easterncedar]

Such a good reminder, EC. My guy finds words for family and nurses, swallows his pills for them, and more, but not for me. Have to remind myself constantly that it's not personal. Easier some days or hours than others.

Chris

[Heady]

Have you got a walker or similar? If not get a wheelchair. It will save some falls and it might wake him up a bit, to actually try for you. Steve was exactly the same, could and would do anything for someone else, but never for me. It's because they feel safe and relaxed with us, that the adrenaline doesn't kick in, which stimulates the movement.

Don't worry about losing your cool, we have all done this, numerous times, when this sort of situation happens. Steve would try occassionally, after having a good ear bashing, but it never lasted long. Try and remember it is PSP not Larry. Very hard at times, I know!

Sending big hug and much love

Lots of love

Anne

[Hidden in reply to Heady]

We have a rollator which I've noticed he does better with then me walking backwards holding his hands. It's on the first floor. He uses it to get to the kitchen and back to the living room. He has his problems with that as well. He tends to not freeze as readily using the rollator.

If I got to my exercise I would be in better shape emotionally. It's finding the time and energy.

[easterncedar in reply to Hidden]

I hear that!

[Clarkbill12]

Hi

I had this problem with my wife, it ended up both falling on the floor and getting bruised. Tried her with a walker, no use, because her coordination was shot she kept bumping into walls. The only solution was the wheelchair in her case.

[Hidden in reply to Clarkbill12]

I bought a transit chair for his neurologist appointment last Friday that we canceled as he couldn't do it. I'm not using it in the house so far. It is use it or lose it with this disease. I'm trying to keep him mobile on his feet as long as I can.

[carehope]

Just a thought Jeff : a rollator didn't work too well for my sister as it was too lightweight after her balance, vision, and coordination issues worsened. On the advice of the physical therapist at A's neurologist's , we purchased a "U Step" walker which A. had first tried out and received instructiin on at PT. Even though the " U Step " is bigger and heavier, these are actually characteristics that are helpful for the user . The handgrips/brakes also work in the reverse of rhe standard ones found in the rollator type walkers. When squeezed, the U Step ones allow it to move. When your hands release them, the U Step stops.The deep and wide inverted 'U' shape of this walker also gives it much more stability and allows the user to move more as one with the walker. My sister is much more stable and confident with this than she was with the rollator. You can check them out online if interested. I had actually first learned of them from a post that I saw here .

[Hidden in reply to carehope]

Thanks for the suggestion. I did see a video mentioning the u step and did check it out. The thing about Larry is he is really terrible making use of everything he's been taught or appliance suggested he use to help him move about. Even now I'll get him out of his chair and he will start to walk around the rollator like it isn't there.

[carehope in reply to Hidden]

Hi Jeff ! Just another cruel joke of living with PSP, right ? ! What might be helpful for one person might not be at all workable for another ! Hang in tbere !

[Kevin_1]

Hi Jeff166

What you are reporting sounds oh, so familiar to me.

My Liz would be collaborative, sweetness and light with the carers and the moment hey had gone she would be the 'patient from hell.' She crashed me emotionally so badly I was dragging myself around barely able to function for months.

Our solution was to get a lot more care in.

Thankfully she doesn't do this much now.

I would add that she denied being passively aggressive for a year and a half... Now that she has more or less stopped she says that she knows she was, but could not help it. She has never been an angry or emotional aggressive person... We didn't have one argument in the first ten years of our relationship. Its that damned PSP thing.

Wishing you the best with this

Warmly

Kevin

[Hidden in reply to Kevin_1]

There are so any variables with this disease. So far I've been fairly lucky with him.

I got to do my mini workout today which always helps me let off stream. As short as it has gotten it is enough to smooth out the irritations.

[Kevin_1 in reply to Hidden]

Great - we went much further than irritations.

Having said that this evening was all hugs and warmth - which is the norm now.

I'm glad it is not so bad for you both.

[Althea-c]

I know the feeling. When we have visitors Barry pulls himself together and when they leave all hell breaks loose. It's about pride.

I feel so much has been taken from him so albeit if he musters some pride.

You are going to need extra help shortly as he will walk less.

Much love, Althea 💛🙏

[VronB]

John performs for physics too. I say to him you're performing and he agrees! As you say infuriating. Xx

[kryste]

Hi his helping will get no better and he is most likely doing all he can step back and put your self in his shoes what if that was you. That's what I have to do because like you I would like to pull my hair out slice my wrist and say a lot of cuss words. But his walking is going to progressively get worse they have what they call a transfer chair that is slim enough to get through the bathroom door and get a gate belt to put around him to help lift him to get to the pot. Me I'm no dummy and said screw it and put the tolit next to the bed and just transfer her there its much safer and a hole hell of a lot easier and will help with not falling.

Lots of hugs Kryste and Aunt Bev

[aliciamq in reply to kryste]

I just got a gait belt so I wouldn't risk breaking my nails grabbing Jack's shirt😆😆😆 I like the bedsheet the best for getting around the house added to the walker🙂 Jack helps by using the doorbell system when he's ready to get up.

[Katiebow]

I tend to use the wheeled shower chair to transfer Ben to wet room/toilet now that he can't walk. He is still able to weight-bare so the standing board is mega useful for getting him out of his recliner chair or bed safely to the shower chair, always making sure tha t the strap is securely pulled around him before I move it. Ben used the u-step walker for a year when he was still able to move his legs and it proved very stable although heavy to lift into car, I was always in attendance to prevent falls so that is a problem if you have to work. I do hope you get something worked out so that you don't have to get too stressed with each other, best of luck.

Love Kate xxx

[Katiebow]

Ps, I never left the walker too close to him in case he tried to get up himself when I wasn't in the room. That's not a problem now as he can't move by himself. xx

[doglington]

This disease is so variable. Chris was able to walk with my help until 5 weeks ago. Then he was hospitalised with a chest infection and is now bed bound. We seemed to miss a stage !!

He always amazed me how he could speak or move for others.

Not now - how I wish he could amaze me again !!

love, Jean x

[Hidden in reply to doglington]

He might. There is no way to know what will happen next.

[doglington in reply to Hidden]

So true. I live in hope.

[aliciamq]

My husband is peeing in the plastic thingys at night and I thank him every morning when I empty them for a nights sleep...i keep two at hand beside the bed resting each in a big coffee can. WE are doing well with it so far ~ it's been a month now.. He was not given a choice - btw🙂 He appreciates a well slept woman in the morning😆

[Hidden in reply to aliciamq]

I have plastic urinals in his bedroom, the bathroom, the living room to be ready for when he has to go. It's immediate when it happens.

[aliciamq in reply to Hidden]

Jack also wears "panti-liners" as he calls them😆Even if you have to wake up to help with the urinal - you wouldn't need to change location and risk a fall ~ and you'd get back to bed sooner ~~~~ of course as it has been said a million times what works me may not work for you😑

[Hidden in reply to aliciamq]

Larry uses them but takes them off in the night when they get wet. Then he sit on the edge of the bed to pee. He holds the urinal up to make sure the opening is closed. Needless to say the pee runs out. I put a pad under the spot he sits up. That catches it but I have to change the sheets most every day.

[aliciamq]

The U-Step is a wonderful machine but impractical for us in our small house and sadly, the last few times out, Jack could not move with it - when someone holds the door for us which is always, he freezes right up. Opposite of performing well for others😕

[Lacey23]

When did your loved one begin to have symptoms? Looks like we joined about the same time. Paul started with being off balance 2 years ago. Diagnosed 9 months ago.

[Hidden in reply to Lacey23]

Looking back I think the first major fall was in the Fall of 2011. Then there was another in 2012 almost a year to the day of the first one. In 2013 his cousin was telling us his speech was slurred. His aunt said go see a neurologist. He was diagnosed in 2015 after a year and a half of tests and no answers. Took all his test results to another neurology department at a different hospital and got a Parkinsonism diagnosis on the first visit. We may be starting into year 7. It's hard to know. He told me he had been falling before Fall 2011. He's not in bad shape if this is the start of year 7.