A Bit About Me!

I'm 68 yrs old, male, married with 2 children and have 5 grand children.

I have also been an amputee for nigh on 16 yrs - right leg, high above knee - due to radiotherapy treatment for liposarcoma some 27 yrs ago and experience a great deal of nerve pain in my stump.

Having been treated for a lymphoma of the left eye, a year ago I have since been diagnosed as having PSP with complications, early stages.

The continual nerve and muscle pain have lead to a regime of increasingly more powerful opiates leading to a state of continuous drowsiness but with the pain always breaking through eventually - back to badly disturbed nights, etc.

Can't think any more just now - sorry!

13 Replies

  • Hello Suffolk_Syd

    Gosh you have had the rough end of it!

    You must be quite someone to get through all of that.

    There is some quality of life with PSP usually for quite some years.

    I am a PSP carer, my wife is into her sixth year since first symptoms. We talk and share still.

    Welcome the support and information here is good.

    Its a good 'safe' (no rudeness or flaming) forum



  • k1 I'm glad u still talk and share

    liol jillxxxxxx

  • Hi Jill

    Yes, we just got submerged for a while.

    re you doing?

    Liz has had a big step down. She still has capacity.

    I get a bit tearful.

    Waiving back

    Liz and Kevin


  • Welcome though I'd rather be welcoming you to a wonderful tropical island or place of your fancy. But the people are great here and like K1 said you are one tough guy to get through al this. PSP has it's own horrors but this site is not one of them. this is where you can find a bit of camaraderie . I would like to encourage you to supplement your opiodes with two things , acupuncture and meditation or biofeedback. Now I realize these are beyond the everyday pains, but it may help...

    God Bless you and may you find an answer to your pain diminishment


  • Hi AVB - I seem to be able to reply to people, but not do new posts.

    I've raised a ticket.

    I have a post which I will send when I am unlocked (as it says on the forum label!)

    Just sending waives and hugs to you and all.



  • HUH,? ok as long as you don't leave us....and your replies are like a vitamin.....you gotta have it....



  • You sound like an incredible person not to have given up at the first hurdle.

    I'm my husbands carer and want to crawl into a hole at some point most days, you've just made me feel very humble


  • welcome to the site Suffolk syd you must be tough as old boots mate look forward to hearing some of your comments on about any subject you feel like discussing including psp mate see yer peter jones q.l.d. Australia psp sufferer as well

    take care mate

  • Welcome, Syd! I'm really sorry you got hit with psp after everything else you've gone through - seems like very much more than your fair share. My guy just turned 70, and was diagnosed 5 years ago. It was a shock, and quite frightening at first, but life expectancy post diagnosis is getting longer all the time, even if there is no general treatment We are still getting about. Hang in there and keep in touch. Peace, Easterncedar

  • welcome 2 the sixte


  • Hello Suffolk_Sid. so very sorry to hear about your troubles. You've come to a community of caring and understanding people. Many are caregivers who deal everyday with all the baggage PSP carries. Some of us, like myself are afflicted with this difficult disease. Visit often if you need answers to questions or you just need to rant. Daddyt

  • Suffolk Syd

    Welcome to this site. Sad you have a need to be here just like all of us. You have been through such a lot it makes you wonder why do some really bad people sail through life and others get all of this dumped on them.

    Please feel free to add your comments whenever you feel like it. I am a relative newcomer here but everyone is great and will give you advice if you ask for it and they have experienced something similar.

    Take care of yourself and don't be sorry if you don't type lots of words! I am glad you have made contact as PSP is a lonely place without the other complications you have. So please keep in touch.


  • Welcome and lots of hugs

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