Just an experience


#1
Hi guys and girls.

My name is David Thompson and I am just 52. I was given the label of 'Parkinson's Disease sufferer nearly 2 years ago now after being referred by my GP to a neurologist specialising in Parkinson's, So what led up to the first GP visit? Well, progressive left hand and right foot tremors over a period of approximately 8 years or more (probably more). progressive loss of balance, tipping to the left and also, a serious backwards fall in the bath whilst having a shower which resulted in falling so hard onto the bath hot tap (the old traditional chrome type)that I broke the entire top off of it when I landed coxic's first (forgive spelling mistakes) leaving me with a beautiful very dark blue/black bruise around the entire area of the base of my spine that lasted for weeks and weeks not to to mention the accompanying pain associated with any movement. Anyway, let me get back on track...

From the very first moment of diagonosis which followed the usual scans, I knew within the very core of my being, that I 'DID NOT' have PD and that it was just an experience that on some level I was choosing to have. The trick now was to understand, that if I could just learn how not to have this experience and put it down, then, the symtoms of the experience would also leave. and now for the exciting moment...

I think /know, that I am now on the right track to putting this PD experience down and moving forward without it. I believe, I am on the way back home to a life before the symptoms and the diagnosis. Since the 27th of July 2012 and up to todays date which is the 16th of September 2012,I should have taken; 477 mg of Ropinarol which is a medication for PD. but instead, what I have actually taken in that same period of time is; 43 mg of Ropinarol.

I sincerely do beieve, that the human physical machine is capable of healing whatever we throw at it within reason and that all it needs is the physical but more importantly, the mental space to repair itself.

Have I still got tremors?

Yes, only now, they are a heck of a lot less and, into the bargain my self confidence is returning which now means, that instead of shaking more when I speak to people, I am now almost entirely but not quite shake free. But I know I shall get there, I know I AM free I just need my body to realise aswell. I AM coming home to life before the symptoms and the diagnosis of PD.

[email address removed by moderator]

I truly do believe, your cure is in your hands and it ALL begins with your mindset. If you can start from the place of knowing,understanding and believing in the very core of your being that any diagnosis is nothing more than an experiencce you are choosing to have. Then, you leave the path ahead wide open to discovering how not to have that experience. I think, I might have just discovered one of those ways.

The greatest days for for me have so far been;

1) Handing back my prescribed PD medication over the counter to the chemist.

2) Going and telling my GP face to face that I had come off the medication and
holding my hands out in front of me to show I had no tremble.

3) Leaving the house for work for the first time in 2 long years without having
any medication for PD with me. I admit, this was purely by accident due to the
fact, that I forgot to take it with me. But on reflection I think my higher
self was probably saying 'You don't need to take it with you David'.

Everything I have told you here is fact, no fiction. I also have copies of my GP notes proving my diagnosis of PD for anyone who would like to see them.

#2
I tried this, Here is my experience

http://stoppingpddrugs.blogspot.fr/

Chris

#3
Hi Chris and anyone else looking in on this thread.

Guys let me explain something.

It's not about 'coming off the med's'!

And if you think it is, or, if that's your desired end result well, all I can say to each one of you thinking that way is, 'Good Luck With That'...

My first stage of realisation was to understand, that anything and everything that I shall 'EVER' experience in this life was nothing more than just that. An experience and separate from my actual self.

Therefore, as I knew this to be a fact for me, I also knew, that if PD was just an experience that on some level I was 'choosing' to have, (yeh I know, that's a really tough one to buy in to). then if I could just learn how not to 'choose the experience of PD, I could actually let go of it and then logically, the symptoms should also leave.

Now even as I write this I can hear all of you that have accepted the PD label as your badge of identity saying 'What a load of Bo---cks'!!! and if that is your response, well, all I can say, is; That's ok, I'm not offended or upset.

All I want is to share something that may have wider implication's then just coming off medication. The Neurologist that I am under at the hospital here in North London thinks, that I may have started the @experience (your road back starts with the language you use repeatedly) of PD as far back as 10 years ago. But for a fact and quite beyond dispute, I was given the label albut 2 years ago now and if you don't believe that, then lets meet up and I'll show you my GP medical notes.

I am going to repeat something I said in my last thread;

I believe, truly believe that the human body can repair most damage that we throw at it so long as it is given the space to do so.

If any of you wish to ask about the process that is working for me I shall be pleased to hear from you.

Chris, I would like to direct this next few lines directly to you if I may.

I understand completely, what it's like to have this monkey on your back that you feel cannot be shaken off. A monkey that is growing in strength little by little as your own strength gets weaker and weaker.

10 years ago now, I had a job that paid me £30,000 + commission per annum and I was financially secure. Then, after being made redundant things started to take a slightly different route and as my tremors started to become more obvious so, my self confidence started to shrink and then, I was in the position of not being able to sit through a job interview because the stress of that interview would turn on my adrenaline tap and I would start shaking even more for at least the next hour or so until I calmed down. I was able to get other jobs in sales which had a 'burm em out - churn em out mentality, which clearly didn't help my situation at all. And what made it all the more worse for me was that I was shaking and didn't know why?. (This was before I was given PD as a badge)

Anyway, long story short,

I have now been working in the Westminster HQ for one of the 3 main UK political parties for nearly the past 5 years. I work as a fund raiser and I am regarded as probably the best fund raiser that department has ever had. The money I earn is less than £1000 a month net and from a financial perspective, I find life quite difficult. Add to that, I am at the end of a 10 year relationship with a woman whose house I live in who wants me to leave her house and maybe, you can kind of see the daily pressures I am exposed to.

And yet, it has now been very nearly 40 days since I took any PD medication.

I know, that daily I am making the long journey back home from my nightmare into Parkinson's Disease. Do I still experience tremors? Yes, very slightly but the space in between my slight tremors when I am tremor free is getting bigger and bigger all the time.

I have a process which is working for me and that process starts with my Mind -Set. Do I have Parkinson's Disease?

NO I DON'T AND I NEVER DID HAVE IT. IT WAS JUST AN EXPERIENCE I WAS HAVING AND THEREFORE, BEING SEPARATE FROM MY REAL SELF, I CAN LEARN HOW NOT TO HAVE THAT EXPERIENCE.

To all of you out there with the PD monkey on your back. Your road back home begins with you and what you think repeatedly and say repeatedly.

#4
I am afraid that if I have the choice between
1) pd can be cured by wishful thinking or
2) you have been mis-diagnosed
I would have to say the most probable option is #2 in which case congratulations.

#5
David

An excellent idea. I have not got the skills to think my way out of this disease. I find that, no matter how hard I try, the damn thing come back, making normal day to day things difficult.

If you have the strength of mind to be able to rid yourself of this physical disease then I really admire and respect you. I have tried to ignore it and have succeded for a while. But then it starts again.

I truly hate this condition. It has spoiled my career, my music, my physical strength, my confidence, my position in the world, my self respect and my financial abilities. If I could think my way out of it I really would do.

Best of luck mate...I hope you can sustain it.

#6
I just wish that we could wish it away!!!

Lucky old you.

22

#7
winner
my apologies if i was a bit brusque and welcome to the forum.
i sincerely hope your experiment continues to succeed but i remain sceptical.
the brain is complex and you never know.

#8
Even though we've never met, we share a commonality each with the other and so on that basis, if you don't mind my familiarity I would like to refer to all of you who respond to my threads as my friends.

My friends,

You have so seriously got the wrong end of the stick.

What I am doing is not wishful thinking and it is not, wishing it away. Also, according to my brain scans, my diagnosis was a confirmed hit right on the bulls eye for PD and my neurologist confirmed that when he officially gave me my label.

It seems to me rightly or wrongly, that those of you who have so far responded, as much as you say you hate the journey you are having with PD, you have already readily accepted it as your identity and yet, even though I have said I am now albut 40 days without PD meds, and even though I have said, my trembling is now almost but not quite yet gone, not one of you has had the hope within you to think that may be , just may be what I am doing could actually also work for you too.

Not one of you so far has asked me what I am doing and would I share it with you and I have to wonder, just why that is?

Are you so attached to your badge of identity that you are now too afraid to hope that you can live life without the PD label

Guys whether you choose to believe me or not that's entirely up to you. But I'm telling you, I am recovering from the label I was given and I am returning home from my nightmare into the hell which could so easily have been the rest of my life had I accepted my label as my identity.

I will meet with anyone of you so that you can see for yourself, that I am not lying or exagerating. Hell, I'll even bring my GP file notes with me if you need further proof.

Remember what I said previously, the human body can recover from most things we throw at it if we only give it the space to do so.

The most important space is mental calm so that your adrenaline trigger starts to turn off instead of constantly being in the on position and guess what, I think I may have just discovered the trick of doing just that very thing. I will be happy to help anyone of you who wants to start believing that you too can make it back home. I don't know how long your journey back might take you or even if, you will actually make it back but they say, the longest journey starts with the first step.

#9
Hello David,
I find your story very interesting. I'm glad that things are turning out well for you.
'For You' is the key in your description about what's been happening this last month or two.
As far as I understand, our condition cannot be diagnosed by scans alone. There is a collection of symptoms which gradually , sometimes over a period of years , manifest themselves and it's often only when looking back , can one see the progression the disease has made on the individual.
I feel a little hurt about the judgement you've made on the way you perceive many of us have just accepted our diagnosis.
To many, it's been a relief following a long period of knowing something was not working right in our bodies, and then finding an explanation.
No-one wants to carry 'a monkey 'on their back, as you describe.
I feel that saying that is a disservice to those who daily walk a difficult walk.
I don't know your medical history, and if diagnosis was mainly through the scans you've had, then perhaps this is the explanation- you never had P.D. in the first case.
I hope this is true, I really do.
Good luck in your resolve to get better. We , who are sure of our diagnosis, would be very glad if you did not have this flaw , which challenges us everyday of our lives.
All the best.

#10
Ok ok, Winner1......At the risk of dodging all the bullets that'll surely come my way, I'll ask the question that you undeniably want asking!

How much is this miraculous 'formulae' going to cost us? :fearful:

Peter

#11
i had a similar experience.

I had just returned from the shops having procured a rhubarb pie (made like scotch pie only filled with stewed rhubarb) a bottle of buckfast tonic wine. my prescription and a scratch card - just the usual.

So anyway, I unwrapped the pie and found that it seemed to give off a golden light and bore an uncanny resemblence to mother teresa of calcutta. As I held the pie I found my symptoms were waning, I was getting better.

I ran to tell my wife, tripped on the rug, the pie went flying straight into pack of hungry westies who, because they didn't know who mother teresa was, wolfed down the pie.

My symptoms retgurned imediately. But and this is the spooky bit none of my westies have developed parkinsons. Its as they are somehow protected from pd from that day to this.

Along a similar line I once wished myself invisible, but moments after entering the ladies changing room at the local swimming baths I was immediately apprehended by security and arrested.

Who knew I could have been so feeble as to allow myself to been enveloped by this disease, when all I needed was to adopt a positive mental attitude.

Anyway that is why it is strongly recommended that rugs are removed from the homes of people with PD.

E,

#12
You just made my morning, Eck!
Thank you.

#13
Ms Lorna, M Pokermind and M Eck, and Benji,

Whilst I have pondering and fretting upon a response to David's suggestions (and of course he is quite entitled to his own opinions), you have said it all. Thank you.

But Eck, some other PD nurse person has recommended rugs in the homes of pd persons because apparently it makes you pick your feet up. Who to believe, who to believe? And does the rug have to be removed so that the pd person can put their feet down? Please do not advise me to Google, it will only confuse me further.

#14
sorry Pokermid to have made any suggestion that you are poker minded

#15
Looks like that PD nurse is on to something AB

I just installed my dogs agility course in my living room and i can confirm, yes, it does encourage you to lift your feet. The set includes

A teeter board
Tunnel
Collapsed tunnel
Standard Jumps
Tire Jumps
Weave poles
Pause table
Dog Walk

I threw the rug into a neighbours skip following the pie incident. The dogs showed their derision at their present by constatly peeing on it. (Oh, maybe should have washed it first).

But why bother with all that, just imagine hovering, and levitate across the room. easy.

#16
p.s. Off to A&E. Tripped up on the teeter board, impaled myself on a weave pole and collapsed in collapsable tunnel where I was consumed by ammonia fumes. So it's a Freetime thumbs down from me.

Wow, this really is an experience. How exactly do you get out of a collapsed collapsable tunnel while impaled on weave pole? Its like when I stuck a pencil in my mouth sideways. I know, a jig saw. dont worry its chargeable. As if I would plug it in while lying in a puddle of puppy pee. I only look stupid!

#17
Why, are you offended by someone who is trying to show you what may be possible?

As regards me being misdiagnosed, well, that's something you'll need to take up with my neurologist who is also something of an expert in the subject of PD.

As for cost, what cost?

I am walking a path that I am happy to share but if, you want to start your own journey filled with cynisism then, may be you need to ask yourself, 'Rae you ready yet to start your journey which could take you back home?

#18
Winner, please dont be offended by my warblings. I have taken things too far. I am only relating things that have happend to me. I am all about posirve mental attitude. I practice yoga and meditation. I couldn't be more delighted that you have rid yourself of "PD". You may have been misdiagnosed, as was I.

You could argue I rid myself of benign essential tremor.

What I don't know is any mechanism of brining dead dopamine producing neurons back to life or regenerating new neurons by the power of thought,Anubis, Greyskull, etc. So by all means tell us how its done.

I will continue to look for mother teresa in my pies (both sweet and savoury).

By all means tell us how its done, I've got a very open mind, plenty of fresh air.

#19
ECK,

good afternoon and how are you today? Exceptionally well I hope.

ECK as I sat here this morning in this Westminster political office which over looks the treasury building opposite, I again read your response to my thread. Initially in disbelief and then, with curiosity. And I wondered, what could be the possible motivation or indeed, your vested interest in trying to stop if not totally destroy my thread?

But then, after a little while of pondering as to whether I should respond or not I thought better of it and just put your negativity down to the fact that you have possibly had your own hope crushed somewhere down your particular path and I tried to rent it no more room in my thoughts. But then, I noticed your latest addition to my thread and I now feel the need to ask you directly the following question;

Why ECK are you trying so hard to ridicule my thread with the obvious intention of stopping it?

What is your vested interest in doing that and why, are you trying so hard to crush the hope that others who have the PD diagnosis might have in coming to the end of their own personal nightmare??

Humour is indeed a wonderful thing when, it is given freely and positively. However, your particular brand of humour appears to have just one motivation behind it and that is, to be distructive.

If, you have negative feelings against what I am trying to do with regards offering help to others with NO FINANCIAL BENEFIT TO MYSELF, surely, rather than destroy any hope others might have, it would be far kinder of you to keep your very obvious negative and bitter thoughts to yourself since, they do not appear to have any helpful quality within them.

To anyone who has been reading my threads if you want to contact me via my email address I shall be happy to respond to you. But let me make this clear, my experience of the journey back from PD is, in its early stages and it involves no medication and no magic bullet. It does however changing aspects of my day to day life.

#20
I am sure all of us who suffer and we who care for the sufferer would love Parkinsons to "go away" but it won't and it will not disappear. I don't know where you have got your facts from but I will just paste a print from Parkinsons UK front page where it tells you it is a nuerological disorder and Parkinsons causes Dopamine cells to die. The medication helps stop anymore from dying from what our Neurologist told us and I tend to believe what he says.

Parkinson's is a progressive neurological condition.

One person in every 500 has Parkinson's. That's about 127,000 people in the UK.

Most people who get Parkinson's are aged 50 or over but younger people can get it too. One in 20 is under the age of 40.

People with Parkinson's don't have enough of a chemical called dopamine because some nerve cells in their brain have died.

Without dopamine people can find that their movements become slower so it takes longer to do things.

The loss of nerve cells in the brain causes the symptoms of Parkinson's to appear.

There's currently no cure for Parkinson's and we don't yet know why people get the condition.

Parkinson's doesn't directly cause people to die, but symptoms do get worse over time.

It would be nice to wish it away but I think you will be waiting a long time. As for stopping your meds thats fine if you can manage without them I wish you luck but think after a time you will be on them again.

Just my thoughts and opinions no one elses