Worried: Yesterday I was about to take my... - PSP Association

PSP Association
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Worried

Yesterday I was about to take my husband home from rehabilitation at hospital ( he went in on Dec 10th and transferred to rehab. On 16th, but did come out for Christmas lunch). He was doing well and his PSP symptoms did not seem to have got worse. However we were waiting for medication and lunch arrived. I noticed that he was showing signs of confusion and i had no idea what he was saying at all. His voice does vary but this was exceptional. He did not eat much , very unusual, and was hallucinating. He then started jerking his legs spasmodically. Needless to say he did not come home and was transferred to another hospital. When he has these jerks it seems to frighten him and as he is trying to sleep wakes him up. He is still hallucinating and restless but knows when I am there, and my son, who came with me. He probably won't see a neurologist until Monday. Has anyone else experienced anything like this?

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Hi Linda

I’m afraid I think it’s just another horror of Psp

My dad experienced all of the above

They can give your husband medication for agitation if he seems distressed

Just go with the hallucinations and don’t disagree unless it is making him anxious, in which case just reassure him that everything is ok

Big hugs x

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He won't see a neurologist until Monday but already I'm wondering if I'll be able to cope, if these symptoms carry on. Makes me feel very guilty.

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No no no no!!! Ditch the guilt!!!!

Are you a qualified nurse or carer?

Have you experienced the horrors of Psp before?

We all experience guilt through this bloody process and sadly afterwards too but PLEASE try not to let the guilt eat you up!!

Your doing your best!

Unfortunately none of us can fight this shi**y illness! X

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Thankyou. It's so good to have somewhere to post your feelings to people that understand PSP

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We all understand that’s for sure Linda! Just keep doing as you are but try and ditch the guilt, this won’t help in fact it’ll only make matters worse! X

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Another of the "side effects" of neurological diseases, especially the PSP group that little Science still knows, is that the feelings and sufferings of the primary caregiver are only understood by other caregivers who have lived the disease closely.

As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.

Reproducing the phrase of Anne Heady: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"

Hugs, courage and luck.

Luis

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I agree with Amanda, what are you feeling guilty about???? Your job is to love and care for your husband. Let others worry about medication. I am afraid nothing helps with PSP, except love. You have to make sure you are always fit and well rested to make sure he getting plenty of this. That means getting lots of help and respite. Guilt will only distroy the little strength you have available. Don't forget you too are under the influence of PSP and it doesn't take prisoners. So DITCH THE GUILT!!!

Sending big hug and much love

Lots of love

Anne

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No need to feel guilty, you're doing the best you can given the situation. Dad did all those things at times to varying degrees. It may be medication(s), UTI or just a complication of the disease. You're his advocate now so make sure the doctors explain things to you so you can make sense of it. If something seems odd about what they are doing, ask.

Ron

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Hi LindaK12!

It is interesting to rule out abnormal levels of electrolytes in the blood: calcium, chloride, potassium, magnesium and sodium.

In our case and after 6.5 years living with PSP we have not observed the symptom of jerking in the legs.

In drinks we add thickeners to drinks (soups, water, Aquarius (*) orange or lemon or similar without gas, etc.) till obtain a bit glutinous liquid.

(*) Isotonic drinks are interesting to help maintain blood electrolytes at the correct level.

Hugs and luck.

Luis

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lost my husband almost 6 months ago, ok when my family are here not so good when they arent,tell myself ill catch bus into town , even decide what time ill go,then i decide no i wont .lots of things i want to do but just cant be bothered, have done the dentist and got myself sorted there, hadnt been for years, have done the doctors as well been told i need a hysterectomy,seeing consultant this week, so getting myself sorted , the caring for brian came before anything for myself, so now its only me.and slowly getting there.even tidying up is hard , its easier when i know my daughter is coming. (i have to do it then). we will get there in time ,xxx

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lindaD_ sorry for your loss. It's time to focus on you now, although I understand your pain. I'm sure your husband would want you to be happy. x

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