George's Poem!

[Heady]

Hi everyone, especially GeorgePa! Beautiful poem George, so painfully true.

One thing I would like to share with everyone, is the result of S's recent Neuropsychological assessment.

He had this done back in June, a four hour assessment, we had the results last week! It was fascinating, never been into physchology before. It amazing what they can determine. Some how they could measure his intellectual ability, before PSP and what it is now. Being a clever clogs, he scored 97th Percentile (I didn't know what that meant either!!!). Mere mortals like me, would probably score between 40/60%. It's worked out on a bell graph of averages! His intellect has gone down, but not by much. Apparently, your intelligence is the last thing you lose. His executive function has crashed, but that's in keeping with PSP.

The main thing I wanted to express. OK, I know this is only S's results. They checked his anxiety levels and considering his condition they were only very mild. This is our main worry, that our loved ones are locked away in this awful world, where they can't communicate, feeling very frustrated and in distress. With S, this is not the case! He does suffer with huge apathy, which must be taking care of his inner feelings as well as the ones he can show, or not, as is the case!!!

Not everyone will be like this, but I suspect the majority of our loved ones are the same. They really aren't suffering in the way we all worry and suspect! The other day, when he could talk, I asked what it was like, locked in, not being able to communicate, the question was too hard for him to answer, but what I could determine, that he was not at all concerned, when he couldn't talk. It just seemed normal, if that makes any sense! He certainly wasn't in a rush to tell me anything, or complain!!!

The assessor, explained to S, that this was because, I was providing a safe and secure place and he knew he was loved and cared for.

So my conclusion, we are right in what we do, our love is getting through, our hard work is worthwhile and most importantly, S is not suffering deep down inside. PSP is obviously doing one decent thing for our loved ones!!!! I know for lots of you, this may sound completely wrong, I am sorry if I have upset anybody. But if I have given one of you a bit of comfort, like this report as given me, then thats what this site is about!!!

Lots of love

Heady

[Hidden]

Thank you, Heady, for sharing this with us. I do feel some degree of comfort.

[Heady in reply to Hidden]

Thank you!

Lots of love

Heady

[easterncedar]

Thanks, Heady. That is all very interesting, but also comforting. Yes, I have been hoping that the apathy is curbing his unhappiness, hard as the apathy is to deal with. Hugs, big ones, Easterncedar

[abirke]

No upsets here , Heady. In fact it is reassuring for me to know that B is ok. I have been wondering , esp. after last neurologist appt. Another thing which may be diminished is physical pain sensation. If he gets hurt, he may not fully feel it, and with his apathy he may not cry anyway. We mates on the other hand seem to take on what they have 'given up', maybe now we can take a calm breath knowing that they feel safe and happy .

Thank you Heady for that info. That is REALLY interesting...might have to delve deeper into the mind of the PSPer.

AVB

[Amilazy]

Hi Heady

How did you get the neurophysiology assessment? Was it through you Neurologist or GP?. Would be interested in M's state as I am worried about apathy and depression setting in. Anyway thank you for sharing, I have always known M is still all there but locked away from interaction so your comment that intellect is last to go is comforting.

Thanks again Tim

[Doglinton]

That's really interesting, Heady. I have realised that is true for a lot of the time. C. often talks very little to me. He loves me and wants to talk but can't think of anything to say ! He has always been a great talker. When we are with others, although they are very patient waiting for him to find the right words, he tires and often says " I'm a wet blanket " He says he feels saddened and frustrated by not being able to join in.

I often think he suffers more with fatigue than apathy.

Love, Jean x

[Heady in reply to Doglinton]

S switches off regularly. Too tired to bother with the effort of communicate. Again, that is their choice, we mustn't see this as negative or they are feeling frustrated or unhappy. I know when I am that tired, I couldn't care less what is going on, or what I am missing! I now know S is feeling the same!!!

Lots of love

Heady

[Katiebow]

Thanks for posting this info, helps to make sense of things that PSP sufferers are feeling. The lack of communication is so difficult to deal with, makes life feel very lonely but hopefully Ben doesn't feel the same way as he knows he is being loved and cared for. Xx

[Heady]

Hi, yes, I agree the loneliness is ONE of the hardest things to come to terms with. I have just completed a Carers course at the Hospice. A lot had husbands with Cancer, while no life limiting disease is nice, I did feel that loneliness was not a problem for most.

Lots of love

Heady

[myjual]

I know the feeling well. I have just come out of hospital where Seem to Have heard Of it letter loan seen anym one with it n. Trying to make yourself understood when your voice is half gone And you can't shout so you are treated the same as the dementia and alzheimer's you are in with on an older persons Ward Ward I have already arranged power-of-attorney for my daughter so already she comes with me to every appointment. Yet no one actually spoke to me. When I looked it up I hoped it was not motor neurone disease. Now I am not sure that there's much difference between them. Although my voice recognition what a certain extent be long before I can no longer make,myself understood yes it is Lonely trapped in ones head but I have lived on my ownnow for over 15 years since my father who I looked after died. Now home thewifi is easier now I just have to regain a bit of weight and strength I until our miracle occurs

God bless you all carers and sufferers xx

[easterncedar in reply to myjual]

Thanks for telling us what it's like from your side, myjual. It must be beyond frustrating. I can really only try to imagine how it feels for my guy. I know the communication problems are really alienating for him, but they make me feel a bit lonely, too, since we can't share our thoughts with each other easily any more. I have to do the talking with the medical staff, but I find most of the folks we deal with address him directly just the same, and I so appreciate that. You go on and gain that weight, and take care of yourself. Miracles happen, and hope lives on. Love and peace, ec

[myjual]

Thank you

[kryste]

Hi you My Aunt Bev is the same exsact way you just described her hope things are going well hugs

kryste

[Robbo1]

Heady, I have been reading your posts of two years ago and as we are coming up to CHC assessment have found them useful. Also your notes on intelligence and how a person with PSP feels. Thank you for this . It is so reassuring to get help through your experiences. X

[Heady in reply to Robbo1]

Thank you. It's nice to know that I have been some help. If I can help in any further way, just message me.

Lots of love

Anne