The PSP Chronicles... THE DIAGNOSIS

[daddyt]

wordpressco900.wordpress.co.... I'm curious to know how others reacted when they or the caregivers reacted when given the diagnosis of PSP.

[Heady]

What can I say, I read a copy of a letter, from a private consultant, sent to our doctor, months before diagnoses, suggesting this could be what was wrong. As Google said it was rare, didn't believe a word. When the NHS consultant confirmed PSP, he told us to Google it, so although, after consulting the guru, I knew the Doctor was right, felt very let down by the professionals, that they didn't have the courage to explain PSP to us, or the implications. That's been left to the lovely folk on here to help me understand. Don't think anybody else has told me anything about PSP. Well let's face it, they don't know or care.

Lots of love

Heady

[daddyt in reply to Heady]

I remember coming home from the specialist that day and googling PSP... first thing I got was something about Play Station 4... not off to a good start. Then as I continued on, I found more information than I wanted or need to know that day.

[daddyt in reply to Heady]

Thank you for sharing that.

[pzagy in reply to Heady]

sounds all to familiar, we were given a piece of paper with a brief (2 sentence) explanation of CBD along with another appointment with him to 'monitor' the progression of my mother in law. No I'm sorry, no refferal to a councelling, no nothing. Seems like we are left with Google here too.

The director at my mother in laws home told me that if a famous person was diagnosed with a ParkinsonISM you bet there would be more support....so I guess the most famous people in our lives dont matter

[daddyt in reply to pzagy]

Thank you for sharing that.

[Debbieann]

I would say our experience was similar to Heady, saw the diagnosis on a letter we was cc'd to our GP, just spent the following year having tests, and hoping it would be something else.

But the only real information has been from googling and this site, mostly reading people's posts here has told me what to REALLY expect.

But initial reaction was devastation and depression, and feeling angry at being robbed of our future together

Love Debbie x

[daddyt in reply to Debbieann]

Thank you for sharing that,

[easterncedar]

At the first mention of it we didn't understand anything. We had been trying for about a year to find out why his leg was dragging. The young neurologist tried to explain in terms of tau proteins but basically just told us to look it up. I resented that for a while, but now I think there wasn't much else she could have said that we could have absorbed right then. We were referred a few months later to a specialist in Boston who confirmed it, and by then we knew enough to be shocked and grieved. We sat outside the office with white noise roaring in our ears and tears in our eyes, scared. As my guy said, "She didn't use any weasel words." We clutched at the straws she offered in terms of attempts at medication and patients she has who were still going into their second decade post diagnosis. Then we drove back to our charming B&B, had a few drinks, went out for a splendid dinner and made a romantic evening of it.

And we picked up and went on. That was 5 years ago.

[daddyt in reply to easterncedar]

Thank you for sharing that.

[Bargiepat in reply to easterncedar]

Just read this........ now tears in my eyes.

XXX

Patrick.

[Satt2015]

I remember the neurologist giving the diagnosis but didn't explain anything at all apart from saying progressive supra nuclear palsy and he said dad brain cells will deteriorate a 'little ' bit quicker than other people his age......

Mum dad and I went for a cup of tea at the hospital, dad cried, mum n me knowing nothing told him it's nothing to worry about, your still the same as you were before you went in to see the neurologist 1/2 an hour ago!

I came home found the PSPA and read that the lifeline is up to 7 years and at that I closed the page, refusing to read anymore, as I was bloody frightened!

After a while I found this forum where I have learnt everything from the likes of Nannab, Heady, Pat, Yvonne, Richmond, Spiral Sparkle to name but a few! I thank god for each and every person on here that shares their experiences and gives their advice, without all of you I'd be even more screwed!

X

[daddyt]

Thank you for sharing that.

[Julieandrog]

Hi

Our consultant was brutal, just said 'you know what you have don't you?' But he immediately referred rog to all the other agencies we would need both health and social so he did what he had to do I suppose. I gave up work that day, I had already tendered my resignation for three months hence , I went off sick for the remainder sod the lot of them!!!!!!

Julie X

[Satt2015 in reply to Julieandrog]

Well done you Julie!! X

[Patriciapmr]

At the beginning Keith was having unexplained falls, dizziness and a general feeling of somethings not right. He made numerous visits to his doctor who referred him to a neurologist, he organised all the brain scans and thought it was Parkinsonism. After a really bad fall needing ten stitches in his head the neurologist arranged for him to be monitored for at a specialist neurology unit. I was going home in the evening to research on the web and I came across a link for PSP on the Parkinson's site, horrified I read it and initially thought, no it can't be that, Pne in 10,000 people surely he can't be that unlucky, but I kept going back to it and thinking you know what I think it is! I told my eldest son who said don't believe all you read on the internet Mum, but deep down I knew I was right!

The PSP specialist gave us the diagnosis and was very blunt and didn't really explain it properly to us. All the help we would need was explained to us and did happen quite quickly, although I have learnt the most from the lovely people on this site more than anyone else!

Since then I have hardly met any professional who new about PSP, I feel I know more and could probably write a book or give s lecture about it!

Thanks for sending us your posts!

Pat

[daddyt in reply to Patriciapmr]

Thanks for sharing.

daddyt aka Tim

[doglington]

We had an apt. with neurologist. I knew there was some- thing going wrong in his brain. I thought mini-strokes. He listened to me describing the symptoms, did a few tests and said Chris had a rare disease PSP, which he specialised in. He said he would need a scan to confirm. He then linked it with other symptoms and it all fell into place. I knew it was right but so shocked. I said to consultant that the 5 to 7 years he assessed for Chris wasn't so bad as Chris was just 80. I was concerned as to how he would die.

He was empathetic and a lovely man. Unfortunately he is now moving to Torento.

Love from Jean x

[Pjgil]

Mum went with dad for the majority of the tests. I took them for the dat scan and been as I knew what the dat scan was looking for I went with the parents for the dreaded diagnosis.

The neurologist talked to Dad about what ithey wasnt . ie mnd etc. I wanted to shout at him "sorry but we don't care what it's not. get on with it man"

He then went on to say it's psp. I wrote down what psp was and he told me off. Said that he would be writing to us so I should not do that. I told him tough I will make notes. So glad that I did as when we left the room none of us could remember what psp was short for! also it took 3 weeks for the letter to arrive!!

He did not explain what was involved with psp, He did not want to discuss life expectancy, only mentioned about weight loss and try not to fall. The parents liked him but I am not a fan. Certainly not looking forward to his 3 month review. I will know more about the damn condition than he will by then.

[Ratcliffe]

David was initially sent to a falls clinic before finally being incorrectly diagnosed as having Parkinson's.

A while later He came home from an appointment and said I have PSP, but he had no idea what it meant. I had to google.

With me moving him in with me, we seem to have slipped through the net for support, although he has his first appt with neuro almost three years after diagnosis next January.

[daddyt]

Unfortunately many patients that are diagnosed with Parkinson's have later been diagnosed with PSP. This is through no real fault of the doctors, as PSP and Parkinson's share similar symptoms. It's not until they start having the eye issues that they re-evaluate the first diagnosis. Thank you for sharing.

[shasha]

WHEN I WAS FINALY DXD I JUST SAID WHEN MY NEURO SAID WHAT DID I THNK ABIUT THE DX ... I JUST SAID I THINK ITS SHIT AND EVEYONELAUGHED !!!

[daddyt in reply to shasha]

I'm pretty sure that I've said that on more than one occasion (:

[honjen43]

My husband was pretty Ill by time we got a dx that I felt fitted in with what I was seeing happen in front of me.

He had been diagnosed with Parkinson's a year before and had got gradually slower with shuffling feet, one leg more dragging than other, but no tremor and no effect with madopar. Sinamet made him very ill! In previous few years he had got less able and came in from garden after falling a couple of times. I never gave that a thought! Except he was getting less able and thought his brain was not working properly. He was fitted with a pacemaker and later got diabetes. He was very remiss in taking meds or checking sugars, and raided my dried fruit and bought a secret stash of sweets! Ignored all symptoms! He also woke frequently to toilet at night and daytime outings required toilet stops. He then had several instances when he had 'accidents', major ones!

All this came to a head after the Parkinson's diagnosis when he got to a point when he found extreme difficulty walking and could not sit up unaided. That happened suddenly and was main reason we went to hospital.

He seemed unphased by this and was more concerned when meds were removed. He didn't seem to have a clue! I insisted on having a neurologist involved in consult. Others were adamant it was a Parkinson effect! We met a lovely Canadian intern who was obviously specializing in rare brain disorders and soon came to conclusion it was a frontal temporal lobe disorder. He explained this to us both and the MRI brain scan to me, most of which I forgot. He then pulled a page from him notebook and wrote down his diagnosis - has Parkinson traits but is not: has dementia but is not Altzeimers: is CBD. I did not question his diagnosis as it fit with everything I had been seeing, and explained all.

Sadly, my husband was too sick and confused to fully understand. Ward Dr still classed him as Parkinson's so treatment did not change!

I was the one who watched the disease progress and I was certain he did not have long - certainly not 6 months as was suggested! Dr rounds were first thing in morning at breakfast when my husband was at his perkiest, eating cornflakes, drinking and interacting well. Couple hrs later he was asleep, and behaving quite different.

There was a day when he was sent for an xray as dr thought a stroke. I had seen some-thing similar before and guess that tau protein tangle can produce a similar effect to a mini stroke. But no medical confirmation to me.

I can understand why drs don't want to be drawn into giving a timeline.

I can sense that he changed around 6 yrs before CBD was diagnosed, but only in hindsight.

So, all of you! Live each day as it were your last whatever your state of health, and laugh and enjoy!!!

[daddyt]

Thank you so much for sharing X