Plateau

Hello, has anyone else experienced a plateau with PSP. My husband had a bad fall and went onto morphine, he was so ill and since he has come off the morphine he is even better than awhile back before he started the morphine. Swallowing is much better and he is very determined with his walking. He had a brain haemorrhage in 2014 so the symptoms from this are all muddled with the PSP. I am just feeling so anxious 😩 😢

Thank you all

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The 6 years I nursed my husband consisted of plateaus and troughs, ups and downs, a very long roller coaster ride. He would be on an even keel for several weeks, leading me into a false sense of security only to take a dive. He would improve very slightly and we would get used to the new situation but when I got used to it he would dive again, and so it continued. I had to learn to go with the flow and take what hit us next. I also learnt to anticipate the next move so everything was in place when the next dive occurred i.e. Getting the wet room fitted before he needed it.....he could no longer shower upstairs 2 weeks before the room was finished so only had that time when he couldn't shower. I got the wheelchair while he was still walking and he would push it and sit in it when he got tired so he was used to it by the time he needed it permanently. I ordered the standing hoist before he needed it and it meant I didn't hurt my back helping him out of the chair. After many months of using the standing hoist, he suddenly became unable to stand. He was bedridden for 7 weeks, the amount of time it took to get a full hoist delivered.

Go with the flow and anticipate the next dive.

Best wishes.

XxxX

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Thank you for the reply NanaB. We are going to see the specialist in a couple of weeks so here's hoping we can get some idea of what is going on. He sees a geriatrician but I think he should be seeing a neurologist who specialises in PSP so fingers crossed we will be referred. Xx

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My sweetheart had some good long plateaus, and even a few periods of seeming improvement. That yours is determined with his walking can be a good opportunity to build his strength up to slow the next decline. Physical therapy, even just a few little exercises that you can make a daily habit, can be of great benefit, especially if started early. I loved the LSVT Big program. His insurance covered it for a time. There are videos online. The exercises were something we did together, and were rather fun. The decline is inevitable, so enjoying the present is key. Try not to worry. I never got around to renovating the bathroom or making a bedroom properly downstairs, after all my fretting about the contractors who were so unhelpful. I got very good at sponge bathing him, and just learned to cope with each new challenge as it arose. One adapts. I'm sure you already know that!

Welcome to the community. Folks here saved my sanity many times. Peace and best wishes, ec

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Thank you for you reply Easterncedar

We are going to see the specialist in a couple of weeks so here's hoping we can get some idea of what is going on. He sees a geriatrician but I think he should be seeing a neurologist who specialises in PSP so fingers crossed we will be referred. Can I ask you what is LSVT Big programme. Xxx

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Lee Silverman Voice Therapy was a program developed to help Parkinson's patients speak up. Then a movement program called LSVT Big (for making big gestures) grew from that, so the speech component is often called LSVT Loud. Check it out online. Most physical therapists know something about it these days.

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Thank you for you reply Easterncedar

We are going to see the specialist in a couple of weeks so here's hoping we can get some idea of what is going on. He sees a geriatrician but I think he should be seeing a neurologist who specialises in PSP so fingers crossed we will be referred. Can I ask you what is LSVT Big programme. Xxx

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So so agree with nannaB, it's hard putting in place equipment etc. Before needed, but it is accepting it ain't going away or get better! Also these things take so much time, it took ten weeks forCHC to agree funding for the single carer hoist, so by the time it was fitted we needed it!

I am most of the time very pragmatic with this nightmare, sad, angry, uncompromising as well, but this long long journey has taught me many things , one is that these emotions destroy what you have left of your time together and acceptance is the key to survival,

What ever am I droning on about!

Have a good one

Julie

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Hi Julie, yes, you got in one! Acceptance IS the only way forward. The time and energy I spent fighting this blasted evil disease and all the equipment that I finally had to give into, was stupid and total waste of our precious time together. I know I did what I thought was best, so not beating myself up about it, tooooo much!

Equipment helps someone to LIVE, get out, even enjoy life that tiny bit better. It does not take away their independance, that unfortunately, exited stage left, the second the consultant said PSP.

Wish I had appreciated that at the time, but yes you are right, I would exactly the same, if put in the same situation again!!!

Lots of love

Anne

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I am happy your hubby is doing better, a helmet is the best to protect thier heads my brother had a nasty fall couple years back and had a serious bleed so after got the helmet no mores head trauma,

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