Another step down: In the last few weeks... - PSP Association

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Another step down

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In the last few weeks Larry has been having more trouble walking with the rollator. He is freezing and claims his feet stick to the floor. I’m sure they do. Getting him to lift them is a major undertaking. I started to use a transit chair on the first floor and an office chair with wheels in the second floor to move him from the stair lift to his bedroom. He walks when he feels up to it. He knows it is use it or lose it.

The last few days makes me wonder if his walking is coming to an end. By my estimates he is in year 7 or 8 with his decline. He is well into PSP. So far there have been no major health issues. He will tell me he feels fine. I’m sure he does.

When we are doing transfers I fine I am losing control of him. At some point I will drop him. Will see how he does over the next week or so before I assume he isn’t going to improve.

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So sorry to read this darling, I remember those days with dad, so bloody scary!! I suggest for now you take day by day and sometimes hour by hour. Do you have a neuro team with physio? And carers? Be careful of yourself too!! You absolutely don’t want to injure yourself x

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Hidden in reply to Satt2015

I gave up on the neurologist. Those were pointless visits. The physical therapy stopped as well. He did what he could when they came to the house but that’s all he did. No follow up even when I tried to get him to do things. As for carers coming in. Not yet. I do make a point of taking care of myself but this is relentless.

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Marie_14 in reply to Hidden

Jeff I think you have to acknowledge that things are going downhill fast. When this happened to my husband I used to say Left, Right, Left, Right and it worked. The carers were amazed but I had actually read it online! Not clever enough to think of it myself!

I really think you are at a stage where both of you could have a bad fall. The L,R,L,R is OK on flat ground but I would be scared to do it otherwise.

Take care of yourself but realise you can't cope alone. You are human after all?

Marie x

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I use rocking to get him moving. A physical therapist showed me that. Will try the left- right.

Thanks

Dad had the same issues with feet sticking to the floor. It was maybe a few months later and it became to unsafe for him to walk, even with assistance.

Transfers can be tricky, lot depends on size relationship. I placed whatever dad was going into at a right angle to what he was coming out of, reached under his arms and placed my hands around shoulder blade area. I lifted, pivoted 90 degrees and sat him back down. That way when I lifted I brought his body mass closer to me so I could control him better. It's a matter of trail and error till you get a system you're comfortable with.

At the time dad was a few pounds heavier then me and about 6 inches taller. Now he is 50 pounds lighter then me and stooped so much he barely comes to my chin.

Ron

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Hidden in reply to Dadshelper

The last time Larry’s father was here at age 84 he only stood as tall as my chin. That was a year before he died. He and Larry use to be 6’ 1”. Now Larry is below my chin some of the time. That was telling the first time I noticed that.

Larry also has lost weight this summer. I started to feed him dinner. He would get frustrated trying to get the fork to his mouth and give up with half the food on the plate. My feeding him speeds up the process as well.

Sorry to hear this, it is tough when we see another step down. Hope Larry will regain a little ground as things settle.

We have just purchased a U Walker it is making a difference- significantly less tiptoeing and stumbling. Like you I am of the use it it loose it mentality!!!

Take care

Love Tippy

So sorry.

On the PD site, when feet freeze a flashlight is used to shine ahead OR tapping on the top of the foot. Larry may be too far advanced in PSP for those to help.

Prayers...............

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I hold his hands and walk backwards when he walks. When he gets stuck I rock him gently to get him going again.

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Lillipilli in reply to Hidden

Your story about Larry is my story about my husband Jan. I find it hard not to lose my patience when we have just practiced how to walk and it does not work. I know it's his illness, but it's hard for me to accept. I get into a kind of panic because I am afraid that if it continues like this he will no longer be able to live at home. I'm afraid I'll lose him.

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Same here. For me it’s the uncertainty of it all. Right now I know he is health enough. With this step down I wonder how much longer he will be. When mobility goes so does everything else.

Dear Jeff,

Yes...a downturn always leaves you with a (even larger) lump in your gut.. Often they recover - somewhat - but you know it's a stairstep down to the end. We just never know how long that stairway goes...

On a practical note: our Neuro physio had hubby point to the foot he wanted to move when he started to freeze. Amazingly it worked!

Best wishes xxx

Anne G.

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Hidden in reply to raincitygirl

It’s another adjustment for me to make.

Jeff I psp stinks I hate it so much. I hope Larry improves, and is able to still walk a bit, you need to look after yourself as well. George seems like every week we have a really bad day and night, just feel it can’t you when things are going to turn? Had that day today, seems like you are running every where very tiring, sending you a hug Yvonne xxxxx

Sending love and a big hug to you Yvonne. Hope tomorrow a better day for you both

Love Tippy

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The bad days seem to be coming more often now. Closer together. Will see what today holds.

So sorry to hear this. Dad also took a downturn in movement around last Christmas and then had another serious fall in June which meant we now have carers come in. Mum also ended up with a trapped nerve in her neck from trying to grip him all the time

We find the Sara steady a good piece of equipment for the house. It was offered by the OT. Also physio did help after his last fall. It’s very hard to keep up with the changes but it’s important to keep yourself injury free too.

Xxxx

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Hidden in reply to Halftimeoranges

Thanks for the Sara Steady information.

Hi Jeff

Sorry to hear Larry is slipping a bit.

Your probably aware of rota Stands for transfers. We found them to be very helpful.

shelden-healthcare.co.uk/ro...

Good luck to you both.

Best

Kevin

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Hidden in reply to Kevin_1

Thanks for the info Kevin. People have mentioned these aids. I haven’t thought about one until now. This house is beginning to look like a medical center.

Hey..Kim here. My Baz is the same. The only way to get him out of the freeze position is to get behind him and the rollator, wrap my arms around his tummy and use my knees to make his knee bend and he then moves. His right side is almost completely stiff now and we struggle big time but get there in the end. He often stops and sits on it and I push him the rest of the way. He is close to being wheelchair bound..

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Hidden in reply to Allan924

I find getting in front and holding his hand then rocking to be the best for me so far. Sometimes it can’t be done.

We also used a rota stand for Ben, I made full use of the strap that secured him always having that control when he stood. It was brilliant for getting him from bed to chair or wheelchair with doing too much damage to me. I carefully watched and advised carers, especially the non regulars, to ensure they were also making sure he was safe during transfers, they are supposed to be trained in using them but I'm not sure just how much training and practise they had. Hope that helps.

Love Kate xx

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Hidden in reply to Katiebow

It’s good to know there is another gadget to use for this.

Hi Jeff,

My B is getting to a similar stage and like you I’m quite concerned as his freezing is getting more frequent, so thanks for sharing.

I do use the left, right and tapping on this foot, and sort of a “tango” dance drill with him and it seem to work BUT for how long I wonder.

I will certainly look at this rota stand.

Best,

Mx

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Hidden in reply to Megabrew88

It’s something in my mind now as well.

Good luck. It could be just that he is unwell at present but I am having to accept that Nigel - who has CBD - has gone down a step and finding balance and walking much harder and more tiring. I am so glad that he tells you that he is fine though. All the best AliBee xx

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Hidden in reply to AliBee1

After an extraordinarily long night’s sleep he seems better today. For how long I don’t know. The down days are coming closer together.

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AliBee1 in reply to Hidden

Big hugs xx One day a time x

Hi Jeff,

we're also in a similar situation. It's usually worse in the afternoons and evenings. I had to accept a couple of weeks ago that i can no longer cope on my own so we have nurses in morning and evening to get hubby washed, dressed and up. They tried showering him once but said it was too dangerous. We'll see once we move house in a few weeks time if it's possible there, if not then sponge baths on the bed again, or as one nurse jokingly said we could try with a hose pipe in the garden but, could be a bit nippy ! Even if he does have a bit of russian blood mixed in with his french blood.

Bon courage and a big hug to you both

Dawn

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Hidden in reply to patch33

Thanks.

I'm so sorry to hear about Larry's decline. I know how disheartening these can be. Another venture into the unknown. I suggest looking into a stand assist device like Lumex makes. It is much safer (no need for belts, etc.) and will serve you much longer. They are about $500 US and I found it to be a godsend. I was able to continue transferring my husband through my broken back (upper) with this device. It requires very little effort on your part and will help Larry maintain some upper body strength.

Hang in there,

Pat

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I suppose some kind of assistance device is going to be needed soon. I happy he seems to have bounced back today. For how long is the question.

To handle tranfers, there is a thing called a hoyer lift. There is a prefered sling that is needed. The insurance companies here in the USA prefer to provide a cheap sling. I had to fight in order to get the one used by most hospitals. I don't recall the name of the sling, but if this is something of interest for you, I have all the information on my PSP website supportpsp.com. Not to worry, my site only contains free information. If I remember correctly the page you want will be either: Additional Things From The Insurance, or Odds and Ends. Forgive me, but the site contains information I have learned over the last 3 years. A good deal from trial and error, and what I was able to learn from my local PSP support group.

As for the foot sticking, the U-Step 2 Walker has a module to help fix this problem. Its an add on to the walker. The page with that information is named Walker. One of the best things about the U-Step 2 Walker is unlike the standard walkers, this one is always in brake mode. It requires that one or both levers be squeezed for the walker to move. My wife hasn't had a fall since we got this walker. The problem with most walkers is those with PSP the walker gets a way from them causing falls. With the brake alway on, when my wife has a problem there is no need for her to think about applying the brakes. It's there automatically. I hope this helps. I'm just a spouse and caregiver, and I understand living with a loved one who has PSP. Get as much help from others as you can. Burn out can and will happen. We may be caregivers, but we are also human… I wish you the best…

Andy

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Hidden in reply to grafixapn

Thanks for the information.

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