This weekend the right leg started to do the same jerking movement as the left has been doing for a year. His cough sounds awful, but he still doesn't want to go to the doctor. Not sure what they can do. I still need to check on the swallow study. But not sure he will go for it. He is sick of doctors and test!
Spreading?: This weekend the right leg... - PSP Association
Spreading?
Written by
AliciaB
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30 Replies
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Hi Alicia
I can so understand him not wanting further assessments!
Liz found leg exercises stopped the leg twitching, but I think there are meds. for that too. I don't know how effective they are.
We got some thickener for drinks after a swallow test. It took the nurse all of 5 seconds to do the test. She placed here fingers on Liz's neck and said, "Please swallow", a couple of times. Then announced a slightly slowed swallow reflex and prescribed thickener for fluids. Liz manages much better now.
FWIW - the dry PSP cough Liz has, occasionally, is not treatable - in her case at least.
I hope some of this is helpful.
Meanwhile, saying hello to you both.
Warmly
Kevin
Yes, very helpful! Thank you, I will call the doctor and see if they can see him.
It's interesting, Kevin, that a nurse could do such a simple swallow test. My sweetie had three tests with barium and x-rays. Interesting for me to see, but perhaps your hands-on test was just as good!
Hi ec
Yes, Liz had the barium thing too, some months earlier.
The Nurse merely felt for the ? two stages of the swallowing reflex and saw there was a delay.
Some of the old stuff still works eh?
Now, where is my computerised high sensitivity cat poop detector?
Dang, its on the front of my face where I left it.
Waiving
hilarious!!!
J has that really dry hacking cough which is getting worse. He refuses to have thickened drinks or puréed foods but is still managing to eat well. I cut out foods that are really difficult. Xx
I am not very good at the cough thing. I know Liz coughs a little and she can't explain why. She says there is no tickle in her throat or phlegm.
As for swallowing. Without saying anything I have slipped across to serving soft foods
Potato hash's - cheese garlic and onion, or finely diced meat or foul or fish
Pasta and sauces, as many different sauces based on roux that I can think of as well as tomato based ones.
Soft rice and sauces
Kedgeree - Poached Fish flaked with mashed boiled eggs in rice with pepper and cayenne pepper).
Home made soups with bread sops.
Yoghurts
Ice cream - served with soft fruits and dusted with grated chocolate.
Home made chocolate pots with a fruit base - a sure fire winner for our Liz
Soft fruit crumbles (not too toasted on the top).
You know the sort of thing. Your probably a master cook
Are these too solid for him now?
Kevin
xx
No Kevin that is exactly what I'm doing. Because he can't use his hands very well I cut up all his food and I'm cutting it into smaller and smaller pieces and he accepts that like you I concentrate on wet foods. He loves fruit but can't eat apples anymore so I'm getting pears which are soft. Xx
Nice
Sounds like you are just hanging on to the soft food thing. Our turn next I suppose.
Sorry to give you our menu - I got carried away.
The other thing I was slow on picking up on was getting Liz a bowl with a steep side so that she can scoop at her food.
This illness is adapt and adapt again. I guess I am lucky - Liz accepts food changes. Wishing you well with it.
Kevin
xx
Kevin
How did you convince Liz to use thickener? G refuses to use it. I wonder if there are different kinds and maybe I could try him with one that doesn't end up lumpy?
Marie x
We were prescribed a fairly new one:
"Resource Thicken up (Clear) by Nestle" On prescription.
It doesn't go lumpy, but some settles to the bottom like a wallpaper paste. Probably because I don't give it an extra stir after a minute.
Liz likes goo things!
Apparently it has no flavour at all.
Kevin
xx
Will try to get some for him as he has been drinking smoothies but they have not be cleaning his teeth! The result is he has lost a tooth, broken another, and the rest are an odd colour!
Having a battle with CHC too as they are refusing to pay for him to go to the Nursing Home we wanted. They actually told me he could go if I paid for it myself! Saw one which was just about acceptable. Rang today to ask when they were coming to assess G and was told they had promised that room to someone over a week ago! Felt like crying as I had just told him he would hopefully be moving there.
Marie x
Yes, there is very little room in the inns now.
There is so much to cry about with this illness and then the frustration of trying t sort things out on top can be too much,
I feel it too.
Kevin
xx
Have you been able to arrange some respite? You need it you know? You can still ring to see how Liz is? The problem is getting a Nursing Home that is half decent as I am finding! I have a haridan of a woman ringing me and trying to bully me from CHC!
Discovered that if CHC have sent patients to a Nursing Home before they can't refuse your request! So it says in Black and White. Unless I am misinterpreting it?!
By the way I am impressed with your culinary skills! You have given me a few ideas. Thanks for that...even if you did get carried away. ☺
Marie x
Hi Marie
I was going to post our trials and tribs. to you, but when I had finished writing it I thought to make it its own post...
There is no limit n the Nursing Home you can use as long as you can get a place at the price the CCG pays. Unless your CCG has a weird rule.
Around here that is £800.00 per week. Each CCG sets its own rate depending on the local market. They block buy bed spaces and get a low rate which can be as much a £300.00 - £400.00 below what we get charged.
I expect that that is what is limiting your options.
Can you tell me where you found the rule bout choice of home? I am sure you have not misread it.
And... More culinary writing than skills My Mother trained as a Domestic science person and started us off just as soon as we could stir a sauce. Its amazing how that sticks with you. I guess you know.
Hugs
Kevin
xx
I'm so sorry, AliciaB. It sounds awful. I can only suggest that if he doesn't want to go, you can't do much but comfort care. Is there any way you could get a visit from a doctor or nurse who might check for pneumonia?
Our doctors don't do house calls and he can still get around. Even if it is slow. He is just tired all the time.
I know we are lucky to have a GP who will come out, but we also have home health care agencies with nurses locally; my guy was referred to one when he was sick, and they sent occupational and physical therapists, a social worker and nurses to the house for a few months. The doctor referred him and I believe it was covered under his medicare. We live in a small town in Maine.
George coughs all the time , it is very distressing for him, but it is all part of PSP, he won't have thickener in his drinks, I don't make him, it is his choice, I suppose, see the doctor, get a swallow test done, this PSP is a horrible horrible illness xxxxxx
Thanks! He keeps saying it's a cold.... I don't think so 
Strange because John is always too hot since the illness began. Annoying as he doesn't like the electric blanket on and I'm a chilly soul! Xx
My husband, who has CBD, is always cold. Although he can't tell me, he sometimes just nods yes to being cold.
His hands and feet and even his ears go ice cold.
I have a lovely warm blanket that I keep over his legs and a cardigan that I keep around his shoulders and back. And he wears thermal slippers on his feet.
I on the other hand, am always hot!!!!! But at least I can pop outside.
Hey, AliciaB,I just reread your post and realise that you said that your husband says that he HAS a cold, not that he IS cold!!!!
Oh well!
Denise X
Hi Denise, yes he keeps telling me that he HAS a cold. He has been hoarse for about 3 weeks now. I'm wondering if he is about to loose his voice. I have taken him to the doctor and his chest x-ray was clear, and no sign of sinus problems.
He does have cold hands and feet. Maybe poor circulation? He doesn't move around as much as he use too. He use to be very active.
Thanks,
Alicia
George says all the time he is cold, sits with blankets on him in his chair, must be part of the PSP xxxx
My dad always says he is cold, he has CBD though.
Strange thing i always remember him complaining of the heat when i was a child,never wearing a coat when he went out...another symptom i guess.
Love to you all
xx
It's the same with my husband who has CBD!
My mum has the same jerking movement in her leg. We give her regular light massage, pain killers and Beclonfen to help reduce the stiffening. We started on a low dose and then slowly increased dose. This has helped a great deal to reduce the discomfort she was in. It was of particular concern as with the leg jerking she would elevate the leg to almost an 80 degree angle (my mum is bed bound) and there was a risk of her long term catheter being pulled out.
Crazy few days... Took hubby to the doctor, then had to go for a chest x-ray. Good news it's not pneumonia! Chest congestion only. Have new meds for the congestion and reflux. Then today a filling in his molar fell out. So we got to spend time at the dentist. I'm exhausted! & Thankful for a place to vent!
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