Orpheus Returns



     I have posted a couple of replies on here, but I am very new to this.

I am quite surprised by the things I have read. Similarities abound. This places me in a sort of comfort zone. I think knowing I am not alone is very important.

I was finally diagnosed two months ago. The condition has existed for quite a few years I think. It finally became obvious later on, after exhaustive tests for other things. The reason for it taking so long to reach the final analysis had two main causes. 

1. No definitive test for PD. 

2. It was masked by many other problems.

My work was hard and demanding for many years, so I wrecked my body. Hence the many false starts. 

I have searched the net for a replacement body (something around 21 years old should do), but as yet have been unsuccessful.

Since joining 'the club' officially, I have been amazed by the kindness and support of professionals and many others.

On the final day of reckoning I half knew my fate because my Father had suffered PD and by this time my shaking was more pronounced. I still hoped for another diagnosis of course, as all us optimists do.

As the words were uttered I took it on the chin. I was doing fine till a nurse spoke to me on the way out and I had to reply. I choked as I tried to speak.

Do I feel ashamed?


Read what Billy Connolly said.....quote..........'it's  + + + + + + +  scary'. And it is. Anyone saying different is covering up. It may not be terminal, but it's a nasty little blighter with many side effects.

As time has passed by though, I have tried to reassess my situation. I may have seen what it can do first hand, but I am now supported in so many ways I draw strength from that. 

Learning to adjust is hard and not being fully independant is not easy after so many years of doing for others. I am working hard on that aspect with my wife, bless her, she is a great help. No mollycoddling, just helping me where necessary and not allowing me to become complacent. I do run out of steam a lot though.

In the middle of all this I was also dignosed as 'probably' having Prostate cancer. Blood tests seem to indicate this. It is 'probably' going to be confirmed next month when I go for my biopsy results. I am prepared for this. I think what has been said so far was designed to help soften the blow, but it is not yet fully confirmed. The count should be 5 or below. Mine is 10. It would seem almost inevitable. 

Add to this half my left hand is missing and has been since 5 years old. I sweat to the degree my blood goes out of balance and I dehydrate. My muscles are badly damaged in my back and good arm from RSI, working one handed all my life. I have suffered internal bleeds for the past 3 years if I strain when walking to far and you would probably say I am likely to be depressed.

Far from it. I can cope because of the help I am getting from my doctor, my consultants, my specialist nurse and Age Concern. 

The only people who are not behaving ethically or with any compassion are the DWP, who have lost all sense of rationality while tyring to stop scroungers getting incapacity benefits.

They placed me in the Employment and Support Allowance section to help me get back to work, instead of the Support group. Their witch hunt coincided with all my hospital appointments.

I am all in favour of those who make false claims being rejected, but come on.....I have two consultants who will vouch for me as well as my doctor and many other professionals. They have been well informed of all this. I did not need the distraction at this time.

It took 3 visits to get their doctor there to assess me. The first couple of times I was there, but he was not. As walking is painful this was not appreciated.

I was first assessed by DWP about 7 years ago, they agreed I was not fit then. Chiropractors, doctors and specialists all told me to stop work. I worked on well after they advised me to stop, much to my detrement.

At 63 and a half with the above conditions I am sure there must be a que a mile long wanting my services. It makes me wonder why I paid National Insurance all those years, which is on a sliding scale according to earnings......and I worked a lot of overtime, so I paid a lot extra.

After nearly killing myself on several occasions, not to mention crippling myself, I find this hard to swallow. I am of course contesting their decision, but not holding my breath.

So with the help of so many I am coping. The DWP are no longer fit for purpose so I shall consign them to the dustbin of my mind, while I come to terms with all the rest.

Always pleased to hear from others if you care to comment or share advice. 











Hello, Orpheus --

I am overwhelmed by the number of difficulties you are facing.  I'm generally an optimist, too, but I'm not sure I could maintain my positive thinking as well as you seem to under really punishing circumstances.

In regard to the possibility of prostate cancer, that PSA blood test was not originally developed to detect cancer and is quite unreliable, according to doctors here in the U.S.  My husband, I know, sometimes scored 2 or 3, more than once scored 10 or above, 14 being his record.  He NEVER had prostate cancer.  Because his father had it (and is now a 15-year survivor!), my husband faithfully took the test twice a year.  Ironically, though he was not a smoker, it was lung cancer that he developed without suspecting it.  So I wish you a good outcome of your blood tests and hope you have a "false positive" like those my husband had so often over the years.

Your DWP sounds about as unreasonable as our Social Security Disability group.  The paperwork involved is a nightmare in itself.  Then there are the verifications, which are questioned again and again.  I have heard of many appeals that rightly reversed original denials, however.  I do hope you succeed when you contest the DWP ruling.

My sincerest regards to you in all your trials! 


This is heartening news J.

I will not get my hopes up too high, the higher you climb the harder you fall, so to speak. But this news gives me that chink of light for a favourable outcome, when I go in a fortnight for the results of my biopsy. 

I'll buy that for a dollar.  

My wife says I have Billy Connolly syndrome and just trying to compete with the rich and famous. You will probably have seen his story on the news.

Our DWP is a shambles. Don't take my word for it, ask my MP, he will confirm it. I didn't give up work easily. I gave up because I lost half my left hand at 5 years old, which in turn gave me muscle damage from working one handed for 40 years. I was in heavy engineering for a long time.

Combine this with sweating so much I dehydrated and my doc went barmy with me for working like this, my blood tests went off the chart, I collapsed at work on one occassion and had no idea where I was.

I was shaking then, but the other problems masked Parkinsons. I probably had it well before the final diagnosis.

My back was so damaged I could no longer lift, my right arm was suffering, so I took lesser jobs. My neck locked so bad one day I couldn't drive home from work. The Chiropractor did ultra sound to unlock it, then told me give up, or I would make matters worse. Doc concurred, so did my consultant, so I gave up, I lost a lot of money doing so.

Then along came the  Parkinsons diagnosis etc. In the middle of all this the DWP reared it's ugly head.

I am 63 and a half and about as much use to an employer as a chocolate tea pot. I stand in awe of the DWP's attitude and the ignorance they have displayed. You wouldn't do it to a horse!

Never-the-less I am still smiling and have good mates around me. I thank you for your posative reply. I thrive on posativity. I like your take on things. I shall be cautiously optimistic.

Come the revolution the DWP are first against the wall, along with David(I'll make the rich richer)Cameron.



Shortly after my twin visits to the consultants for Urology and Neurology (Wed and Thurs same week), I was at a loose end. My wife was working, I was sat about staring into space debating Cancer and PD.

I live in a coastal area, so I donned my flat cap, being northern and my head buttoning up the back as most southerners think, I decided to wander down the road.

I told passers by as, I swayed when I walked, it was due to being at sea for 50 years and it was the roll of the ship that caused it. This seemed to intrigue.........I once went on a lakes steamer, but I was sea sick. 

I related tales, of massive gales, and great big whales, to those who would listen at the end of the pier.

They looked in awe, as I related and swore, I had never known any kind of fear.

The crowd thinned out, I can't understand why, so I was eventually sat alone. I reflected on my younger days when my Mother tied a pork chop round my neck so the dog would play with me.

Debating whether to jump in the tide or have an ice cream, I came down on the side of the ice cream. One has to have priorities. As I sat licking my third cone I was thinking about the old days when we were a port. Old sailing ships tied up and loaded from smaller craft which brought goods down the river to the sea.

This came into my head as I idly pondered.....

                                       And in the fading light I saw,

A ship sail closer to my shore,

And at the helm in darkened hood,

Death, the master, proudly stood.


Would he at my harbour berth?

To end my time upon this earth,

Or sail on by and let me bide,

                                         For another day, another tide.

Fortunately I am more positive now. My poems are more up beat and humorous. There is life after diagnosis. Just thought I'd share it with anyone who wants to read a load of old rubbish and pass a few moments inside my world. P.S. I have never considered chucking myself in the tide, it's polluted and I might catch something nasty.


Thanks Orpheus, that's sure brightened my day.



Hi Semele,

Lets sit and talk of brighter days,

To cheer us up in many ways,

Meadows green and seas of blue,

I would like to bring to you.


Sun to warm and raise the soul,

Repair the spirit , make us whole,

Like children who would sing and dance,

In our minds we have that chance.


So Semele, just for you,

I paint in words, my sea of blue,

And meadows that are emerald green,

The like of which you've never seen.


Take this gift and make it fly,

Within the realms of inner eye,

A guardian angel comes for free,

With my best wishes just for thee. 


I have had my moment of doubt and pain. I am in the hands of good and dedicated people. I just hope I never doubt my inner strength again. If I do, I am relying on you good people and my friends to kick my a*se into gear. I'm not miserable, I have no wish to be miserable, I refuse to be miserable.

Yesterday my wife made me laugh till I cried. She could hardly speak for giggling. These are the moments to treasure while we still can. You can't think about negative things while you are laughing. Humour is by far the best medicine and has been proved to aid healing. It certainly fills the hole in my soul.

Regards, Orphy.










For anyone who hasn't read this. I came across it in my hippy years about 1966. I don't favour any particular religious sect. I am neutral, but do believe we are here for a purpose and something beyond the understanding of any man, woman, or child, formed the universe. I think it helps to put things in perspective. 
Go placidly amid the noise and haste, and remember what peace there may be in silence.
 As far as possible without surrender be on good terms with all persons.
 Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.
 Avoid loud and aggressive persons, they are vexations to the spirit.
 If you compare yourself with others, you may become vain and bitter;
 for always there will be greater and lesser persons than yourself. 
Enjoy your achievements as well as your plans.
 Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.
 Exercise caution in your business affairs; for the world is full of trickery.
 But let this not blind you to what virtue there is; many persons strive for high ideals;
 and everywhere life is full of heroism.
Be yourself.
 Especially, do not feign affection.
 Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth.
 Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.
 Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.
You are a child of the universe, no less than the trees and the stars;
 you have a right to be here.
 And whether or not it is clear to you, no doubt the universe is unfolding as it should.
Therefore be at peace with God, whatever you conceive Him to be,
 and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul.
 With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy. 
© Max Ehrmann 1927


Thank you Orpheus for reminding us of Desiderata. I remember it from when I was a student. Personally I find the words profound but simple and very moving.


thank you again and all the very best 




Orpheus, I enjoyed seeing "Desiderata" again.  Near the beginning of my teaching career, I had a copy of it posted on one bulletin board in my classroom.  I was a high school teacher from 1969 to 1998.  Reading Frank McCourt's book "Teacher Man" now, I find a lot of memories resurfacing.

In your October 22 post you say you were "debating cancer and PD."  Do you indeed have both?  Or are you still awaiting biopsy results?  I've been hoping you'd be spared another disease to treat.

Best wishes.


Hi J,

I had the biopsy a while ago. Under normal circumstances I would have had the results by now. Due to other considerations I went to Ireland, which delayed the appointment. I get my results in a couple of weeks. The way the consultant spoke I thought it was going to be a forgone conclusion. In the light of your information maybe not.

I am used to being in difficult situations, but I freely admit for a while after the two diagnoses in two days I was a bit under pressure. I was not going to do anything stupid, but it had a sobering effect on my plans to live forever.

I did sit on the pier, despite the flippant story I posted to lighten the mood and I tried to put everything into perspective. I was taught psychology by a very clever man when I worked in EBD schools at the end of my working life.

We have beautiful scenery and by the time I had finished I felt a lot better. I have the ability to self analyse and to realise there are people in this world worse off than me.

I decided to do this forum to keep my mind active. It is working well.

Thanks for your good wishes and taking time to correspond. 

Orphy x


To Samdog and J

One thing that can never happen is our past being destroyed. Our memories might fail, but others will remember and remind us.

Have either of you listened to 'Keep me in your heart' by Warren Zevon, or, Lionel Richie-'Just for you'.

They are both on you tube. They may not be the most uplifting of songs, but they are quite prophetic.

As Jethro Tull once sang, 'let's go living in the past'. I'll give it a go if they invent a time machine. Till they do and my memory holds I shall re-run my greatest hits. We all have them. They get me off when sleep is hard to come by.




Orpheus, I subscribe to your idea of rerunning one's "greatest hits."  When my husband of more than 40 years had died of cancer and, less than a year later, my mother was on her deathbed, I had an experience that I am still rerunning, one of the best experiences a former teacher can have. 

During my career I taught over 2,000 high school students.  That total included lots of wonderful young people as well as two who went on to commit murders and one drug dealer who was fatally shot at age 20.  But one of my students became a noted scholar, then a best-selling author (#1 on the New York Times list!) and TV consultant as an expert on the Middle East.  When he was the keynote speaker at an event at Seattle University, he invited me as his guest.  He began his speech by honoring me with a classroom anecdote, telling the story of how I had "inspired [him] to live a life of learning."  I was even included among the notables at the dinner after the event.  So I reran that experience and others during the most stressful of months.

Memories can hardly be overvalued.  One of my husband's favorite sayings was "Buy the memories."  He believed in spending not on things but on experiences.  Thus, we did a lot of traveling together, creating memories that helped sustain us both during his last illness.

Again, my best regards.  


Orpheus, what a magical screen name if you dont mind me saying, Your post mirrors my own almost to the atom,I have PD , Prostrate , severe depression at times , and well lets be honest here, life can be a complete b,,t.?rd  I think you will agree sometimes  the depression is so bad I fear it  more than death, so it is a very dangerous form of depression, the worst kind, however! it doesnt hang around and dissapates when PD gives me a break , also I am becoming less and less affected by it as the Duodopa improves my life , even so I do not know which of these two mortal enemies I fear most both are terrifying adversaries and kick lumps out of me when they decide to attack and I have no choice but to use all my defence mechanisms to subdue them, by far the most potent of my armoury is this Forum, Its a similar amazing defence that the giant seqoia trees in California use when forest fires threaten, they send out chemicals into the air  , this chemical is picked up by trees downwind and they secrete a substance which is fire retardant , this communication between the largest living organisms ever seen on our planet has allowed them to survive for thousands of years ,enduring the searing temperatures of massive fires which destroy every other living thing in their path, Indeed one of the species the Great basin Bristlecone  Pine is over 5000yrs old ,it would have been a youngster when the Egyptians were at the forfront of humankinds existance I know you are probably thinking I  am shaking a few screws loose, but I think  the comparison is realistic, whenever I have been at my lowest ebb I tell my friends here on this effacacious supportive  most benificial  organisation and the word filters through, the result is very like that of those giants of the forests  I am lifted and gain strength from all who reply its wonderous and very much appreciated,I hope I havent  bored you to death,  but thats me I tend to do this.

                                        Kindest Regards   Fed



Hi J,

         That's a lovely anecdote.

In similar vein I once had responsibility for a young man who actually wanted to succeed, in among a lot of very difficult children. When it came time to part company he came up to me, grabbed me and said,''if I had a Dad, I'd want him to be like you.''

If someone told me I could swap that moment for a knighthood, I'd tell them where to shove it. So I can fully empathise with your feelings regarding that young man you mentioned. In true manly fashion I just leaked a little......we don't cry.

We may now face an uncertain future, but back in the day we did it. It was a life worth living.

Due to redundancies and closures I have had a very varied working life.

Care came near the end, it didn't just help the children, it taught me a lot about me. I am trying to use that experience.

As far as teachers go, I recall Mo Mo Morrison. He taught me Maths in the lower set. I may have been in the lower set, but I came top several times. It was due to Mo Mo, he had the gift of teaching. It came in very handy when I went to college to study engineering. From there I went on to have an interesting and well paid working life. It was hard at times, but I regret none of it, despite R.S.I. I owe Mo Mo a lot.

I was once challenged about restraint reports when in care. I had so few logged. That's because the head teacher I worked for first taught me a lot about psychology. He took time to do this, in his, and my, own time. The reason for the lack of reports was simple, I used humour and distraction rather than restraint where ever possible. I also owe that head teacher a lot.

My wife(second marriage of 21 years) has lost both her sons. Like you she is a very brave lady.

We had a sit down talk today about where we were. Just when you think things aren't going too well, things start to fall into place a little better. I owe her everything.

This site helps to focus thoughts and formulate opinions. It is proving useful distraction.

Happy days, Orphy.


Hi Fed,

I like mythology.

You may (or possibly may not) recall the story about Orpheus.....

Orpheus and Eurydice got married, Eurydice is bitten by a snake and dies. Overcome with grief, Orpheus travels to the Underworld to bring her back to life. He convinces Hades and Persephone (with his beautiful music) to let Eurydice go, but her release comes with a proviso: Eurydice must walk behind him as they ascend to the upper world, and Orpheus is forbidden from looking at her.

Unfortunately, Orpheus is overcome with passion just as they reach the upper world. He turns to look at Eurydice and she is immediately sent back to the Underworld – forever. Orpheus is devastated. He is eventually ripped to shreds by Thracian Maenads.

I also believe in fairies at the bottom of my garden, Mars bars help you work rest and play and the Booger man comes to get you if your naughty (I blame my Dad for that one).

I have a lady friend who uses this phrase frequently....life's a bi**h and then you die.

Life is what happens while you are busy making other plans according to John Lennon. I had just made plans for a career as a Shopping cart reallocation technician when the wheels came off. It's so sad.

I found the Sequoia tree defence interesting. I just had an E-Mail from my friend in Australia. he is very close to those fires you may have seen on the news. He is packed and ready to go if things get worse.

I don't find your comparison strange. If you read into it, I come to the conclusion that whatever the disaster, somehow there is a way of getting round it. This steps into the realms of solution focused therapy.

Human Givens says you only change what you really want to change. My advice is really want it.

In my life I have been bored rigid, but never to death. Being bored to death sound like the final frontier.

"It's life, Jim, but not as we know it."

Through humour, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it..........Bill Cosby.

I worked with young adults who had cerebral palsy, trust me some suffered far worse than we ever will. At first I was out of my depth. Then one day a young male carer asked for my help. As we worked together he got the young adult laughing, just like work mates do to relieve boredom. You would be surprised how it lifted them. I went on to learn a lot.

Don't look at death as an opition.....it's a dead end solution. If you can wring one more good day out of life it is one more golden moment.

Like you I am obviously down about PD and have bad days. Only a complete idiot would enjoy it. I strive for better things. This site is a valuable distraction.

Here's a few of things I do.....

Put on head phones and listen to music in a comfortable chair. Close my eyes and drift away.

Correspond by E-Mail if I'm up to it.

Take photos.

Pass the time of day with check out ladies at supermarkets/local shop, when I go with my wife.

Read a book..... I just read the wind in the willows again after 50 odd years and really enjoyed it.

Watch a good film. John Wayne is still knocking down the bad guys.......True Grit.

Swear at politicians on the telly when you know they are not being honest....gets rid of frustration. Not too loud it upsets the neighbours.

Look at my surroundings and realise what a beautiful world it really is.

Look up at the sky at night when it's clear and a full moon......wow are we small or what.

Write simple poetry.

Read poetry.

Read stuff on the net.....type in questions about the universe etc.

Make friends with next doors rescue cat. It takes time and patience to win confidence.

Talk to the postman. He is eternally grateful for me taking in next doors parcels. We chat and it makes for good neighbours.

Talk to the bin man. Ours is a great guy when you get to know him.

Talk to other neighbours. I just lost one of my best friends and neighbour. I really miss her.

Go to a coffee morning. I went in the WI one day and an elderly lady insisted I danced with her. I explained my condition and all she said was 'I'll hold you up'. I literally staggered about and she never once complained. We then sat and chatted. She was a good 20 years older than me.....but did she show it.....not on your life.

Hide behind the door and pounce while barking like a rabid dog when your wife comes in....makes me laugh anyway.

Phone friends. Get the one hour free anytime deal with BT.

Not all are possible if it's a bad day, but most are possible some days. I lie on the bed and read on bad days.

Daydream....invent a surreal life.

Think of something you once liked.....ice cream, sticky bun, fish and chips in a paper, whatever and have it. I had a bag of Cadbury chocolate eclairs today. I drooled like Homer Simpson. Last week it was torpedoes.

Life's a gas. In our case its just a bit slower and more painful at times. I could do with winding up.




dear Ophy oh wow!

Can totally relate to the DLA thing as just been turned down! Strangely just seen the Neuro and the Urologist and those immortal words ' can you just lie on your side and draw your knees up' tip for the uninitiated 'just say no I can't ! ' Oh our lives are so full lol  !! Keep your chin up bud.





I laid on the bed for my biopsy and the consultant stuck his nibbler up where the sun don't shine. I don't know what happened, but as he nibbled I suddenly had a shaking fit and thought I was going to pass out. I had to ask the attending nurse to hold my legs down. We got through it, but I can't recommend it for a pastime. I had to catch the train back home. I had a paper towel soaking up leaking blood and have never felt so uncomfortable in my life.

When I was 5 I was in Manchester hospital. A man came and asked me if I'd like to go for a ride on a trolley. I came back after the ride with half my left hand missing. This is why I support Liverpool while most of my friends support Man U. Devious these Mancs.

As for the DWP (DLA I think you call them.....department of lunatics and airheads? ) I think they have employed a bunch of sadists. They obviously wish to inflict more damage on already suffering people.

Try Age Concern if you are still fighting the case. If you don't hear back form me you will know they sent me to the salt mines.



Orpheus, sorry to hear of your medical ordeal.  A few years ago, when my husband was having 12 biopsy samples  taken from a cyst in his scrotum (aargh!!), he had the same experience you did.  He went into violent shaking, felt he was having a blood pressure problem and told the doctor so.  The idiot of a doctor left him unattended on the examining table; he started to sit up, went into vertigo, and fell to the floor in a faint.   We were told the medical term for that reaction to bodily invasion is vasovagal syncope.  Whatever one calls it, it's highly unpleasant and, if the doctor is a dolt, also dangerous. Needless to say, we found another doctor to do the surgery when it became necessary.

Good luck with all things medical!  (And non-medical, for that matter . . .)


Hi J,

You have described exactly what I went through and given it a name. Except in my case the nurse held me down to stop me shaking and falling off. I have never been a wimp, but this was one of the worst feelings I have experienced. I can boast 15 nibbles.....if one can call such things a boast.

I didn't go prepared for a biopsy (there was no mention in my letter) and when I was asked if I wanted it done there and then I inadvisably said yes, to get things moving.

Two things stick in my mind, I should have had my wife with me and I should have had some pads to soak up the bleed.

I had no mobile phone and tried to walk back to the train station, which was about a mile away. So much for my bravado, I nearly went down half way back. I did eventually manage it and was lucky enough to only have a 20 min wait for a train.

I would seriously advise anyone going for such treatment to take note. Have a car and someone to drive you back and take some pads.

Today I went out with some friends. For the first time in a long while I ended up laughing like I used to. I don't drink very much, trying to walk sober is bad enough, and my friends understand this. I have not been out in company for quite a while.

My best friends partner was there and she insisted on driving us home. She doesn't drink either. I was glad of the offer because the hill from the train station is long and steep. I was quite tired by home time.

It was a great afternoon and it lifted me. At one point my best friend (we have been friends for 58 and a half years) was crying with laughter as we recalled some of our many exploits for the benefit of those with us.

He phoned me an hour after I got home to make sure I was all right. I find it very touching that my friends care so much. I don't want sympathy, but I do appreciate the acceptance. Not long ago I felt somewhat alienated by this horrible condition.

Lots of people want to ride with you in the limo, but what you want is someone who will take the bus with you when the limo breaks down.
Oprah Winfrey

Orphy X








I tried Liquorice tea today. I do not wish to put off those who are braver than me,  just in case it has beneficial effects.

However.........the last time I tasted anything like that was in the mid seventies, when power cuts had us on a three day week.

We brewed up at work in an empty paint tin using an oxy-acetylene burner to boil the water. The sealing solder in the paint tin contaminated the water and it was pure luck we didn't poison ourselves.

It galvanised our teeth and we looked like Jaws from the James Bond movie. The clang when we sneezed scared the living day lights out of the works cat.

I bought some liquorice in the form of pontefract cakes instead and ate them. I'll try that instead.