Sudden Changes: I posted last week about how... - PSP Association

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Sudden Changes

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I posted last week about how dad has fooled hospice and the doctor by pulling thru from what appeared to his body shutting down as kidneys were non-functioning with labs showing no infection, high fever, low BP and oxygen. Since the episode Dad is different. Not sure how to explain other than give examples. Prior dad eyes were nearly always closed, now they are open all day. Prior dad would cough and choke thru meals, now he seems to have no issues with eating or drinking. Prior dad barely drank any fluids, now its like he can't get enough constantly indicating he wants more. Prior he would react to jokes, now he never laughs or smiles at things that previously amused him. Prior he was restless move his legs constantly and expressing frustration, now he is eerily still and silent. His voice is completely lost, if any noise does come out it is very quiet like a low whisper, prior to the incident, he verbal responses were mostly non-comprehensible however you could understand a yes/no and the occasional single word response or request (water\bed\ect). Prior he had to be given suppository to have a Bowel Movement, now he has no issues. Dad seems to also have what appears to be "spasms" in his arms, we aren't really sure what that is either. And the list goes on of the differences from Prior to the incident to now. Whatever happened, it seems to have affect him neurologically. So the confusion just keeps getting worse.

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Oh my. I have never heard of any progression like this; although no two patients are completely alike,as I'm sure you know, in all the 10 years or so that I have been following PSP issues, I've never heard of such a swapping out of symptoms all at once. How very troubling. Do you have a neurologist involved?

No Unfortunately we do not have a neurologist any longer since dad has been on Hospice.

Pleased to hear your dad is more calm.

Something in the brain has obviously changed! I wonder if tau clumps can move along the nerves in the same way as blood clots can along along capillaries in the brain.

I can only speculate that he is showing effects of whatever a "stroke" looks like as a result of a change or movement In a tau tangle.

Or maybe it is a sudden accumulation in a specific part of the brain or brain stem.

My hubby was sent off to have an x-ray after doctors saw a sudden change in him, not as dramatic as your dad's. Nothing showed up, but he was different afterwards. Different methods of scanning the brain may reveal something, but so far no-one has come across a more revealing combination.

So something of this 'behaviour' does seem to occur; I also wonder if a sudden seizure or sudden shaking could also relate to the same mechanism., whatever it is.

Maybe one day a real researcher will find some answers!

Meanwhile, enjoy the time you have with your dad while he is able to 'enjoy' some aspects of life. His body will appreciate the nourishment!

Big hug

Jen XXX

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bgentges in reply to honjen43

We have considered possible a that dad had a stroke which may be the explaintion for the "differences". We have considered the shaking as possible seizures however his eyes don't change, seems like with a seizures eyes "rollup in the head" while having the seizures.

Since we have dad with hospice, there is not much done to determine the underline issues any longer (I mean whats the purpose except to answer questions, nothing is going to cure him), the focus is completely on comfort.

honjen43
honjen43 in reply to bgentges

I used the words 'stroke' and 'seizure' as they are understood. In that doctors look for stroke indication through sending a patient for x-ray, they recognized symptoms they 'thought' could be caused by a stroke or a seizure.

I doubt anyone has coined a word for what you and I have seen occur in PSP/CBD! That is probably in the future!

I think the most revealing comment made from our specialist was that doctors are always "guessing" at diagnosis, based on what has been seen and done before. That is why a group of doctors "practise"! I found that interesting.

I am so pleased your husband has found peaceful care through palliative and hospice care. No. I agree with you. They will not be trying to look for underlying issues, just to make him comfortable. That is how it should be: an acceptance that life is limited and he should be made comfortable.

My hubby was sent to Rehab, where he struggled daily to walk, eat, communicate, etc. He deteriorated daily and their system of weekly assessments meant he needed 2 nurses and mechanical aid to care for him by next assessment when he had been assigned 1 to help him to toilet, etc. Food too was inadequate from 1 week to next, and it was a battle to persuade doctors to change that care plan sooner than weekly.

They had never seen such changes before! Always there was an insistence that he would 'recover', thus totally ignoring that his life was obviously severely limited, and no-one suggested palliative care or Hospice be called in. Insistence was that he had more than 6 months, and did not qualify for palliative care, and was not determined 'terminal' as he had Parkinsons disease according to the Dr in charge - not his neurologist.

I thought at the time the one in charge was 'marking time' rather than actively pursuing a diagnosis. The neurologist was a Canadian researcher specialising in rare brain disease. I felt lucky I had found out about him as he made the only sensible suggestion we came across for a diagnosis.

When discharged from hospital to a nursing home,it was suggested by this doctor that hubby had 12 months to live. I looked him in the eye and said I did not believe him! And that doctor probably robbed my hubby of the chance of palliative care and Hospice!

So hence our experiences are quite different -and this is a bit of a soapbox for me! - especially since my love died a week later.

I am pleased for you that his condition has been recognised and accepted and that the care package has come together for your dad. It will help to ease the trauma of dealing with a rare brain disease, and you don't need to fight to be heard to get what is needed to make your dad comfortable.

Sorry! Rant over!

Hugs

Jen XXX

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bgentges in reply to honjen43

Yes we have been extremely fortunate in many ways. From quick diagnosis, a niece who is a nurse for a neurologist, to Hospice approval. My mom worked as a social worker for 30 years in a nursing home She saw , learned and knew a lot from her many years of experience, put things in place long before they were needed “just in case”

It is a horrible roller coaster. I'm trying to ride the changes too. God bless you.

bgentges
bgentges in reply to Kmacgamwell

I expect there will be more changes and surprises. That seems to be the only thing that is constant

Just when my husband slips into what I think is our final stage, he rebounds.

I get angry with myself for how I feel about that.

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bgentges in reply to Kmacgamwell

I know what you mean. Its a double edge sword, you want the suffering to end and feel a little relief (and guilt for feeling that way). On the other hand, you also want to hold on to what is known, once its over the question of "now what" as taking care of our loved ones has consumed our lives for so many years.

Yes. Exactly.

So bizarre. Thanks for posting it. Good to know all the variables of this disease.

bgentges
bgentges in reply to Jeff166

I'm sure it will change again

Morning. Jut before dad passed away last week we noticed spasms in him. Turned out they were actually a form of cramp as they subsided after a minute or two.

Doctors did give him medication as part of his palliative care to stop them getting too bad

Ask your hospice doctors as there is medication that can lessen them

Hold in there. This is a very trying and stressful time for everyone but he’s got you all around supporting and loving him

Thinking of you

Caz 💕

They started giving dad Baclofen to help with the spasms. We have been documenting the episodes, so hopefully we start seeing a decrease.

Extremely sad.

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