Yorkshire Parky

[m-h1]

Of course it's not only about money. But the stiffness tiredness and this bloody tremors and the debilitating illness that's rob you of your health ,dignity and confidence....

More later when I get used to this site.

Martin England.

[Bailey_Texas]

No need  to post every time just reply

[M_rosew]

Hello m-h1, 

What is restricting you exactly? Could it be the shock of your diagnosis that has stopped you in your tracks? You have been an employer, so put that experience to use and start team-building. You already have a GP and a Neurologist, now you need to find your Parkinson's Nurse for good advice, and a Neuro Physio for an excercise plan. In some areas GP's can prescribe a starter course at a leisure centre gym. You have to keep busy and keep moving, you live in good county for walking.  Join Parkinson'sUK and plan some local fundraising for them!

Yes the constant tremor is tiresome, but make peace with it.

Good luck!

[JohnPepper]

Hi Martin

We are all in  this together. Some of us have taken control of our health and started doing things that help us to overcome some of the symptoms. Pd is still an incurable condition but that does not mean there is nothing we can do about it.

In 1993, an experiment was carried out in Frenchay Hospital, Bristol, in which 6 stage-4 Pd patients took part. They each had a hole drilled in their head and a catheter inserted, which was joined up by a tube to a pump, and a container and battery to run it. Into this container they placed a substance called GDNF (Glial Derived Neurotrophic Factor) which is produced naturally in the brain. This was produced artificially by a company in the USA called Amgen.

After 6 months of having the GDNF pumped into the brain, the condition of all of those patients improved beyond the placebo level of at least 30%. Some patients improved considerably more than that. That can be regarded as 100% successful.

QUESTION. Why did they have to go to all that trouble and expense, when GDNF is produced naturally in the very area of the brain where it is required to repair damaged brain cells? Surely, the money spent on mimicing the GDNF and all the designing of all the equipment to get it into the brain could better have been spent on finding out how to get the brain to produce sufficient quantity of the GDNF to achieve the same result?

In 2006, at the 1st World Parkinson's Congress held in Washington DC, the results of a study on the affect of exercise on the progression of Pd was announced by Doctors Beth Fisher and Michael Zigmond, and those results showed that many types of exercise produce this GDNF and the results showed varying levels of improvement, with high intensity walking showing the biggest improvement in the condition of the rats, monkeys and Pd patients taking part in the study.

The probabilty is that this information has never been passed on to patients, even though it happened 10 years ago.

WHY IS ALL THIS A SECRET?

Why are our doctors not telling us to do FAST WALKING instead of prescribing medication that does nothing to slow down the progression of Pd?

The answer to these two questions seems to me to be purely a finacial matter. That is my make on this subject, but I could be wrong.

However! just before the Bristol  study took place, I was finally diagnosed with Pd, having had many Pd symptoms since 1963, over 29 years befoe then. I started doing fast walking in 1994  and by 2002, had recovered from most of my symptoms to such an extent that nobody other than neurologists would ever know that I still have Pd.

I wrote a book about my experience and published the first edition in 2003. This met with a lot of criticism from our local Pd association, of which I had been chairman for five years, at which stage I was booted out of the association, being accused of misleading patients; claiming to be cured, claiming to be cured without the use of medication and using the association to sell my books.

All of those  accusations, which were backed up by two leading neurologists at an Annual General Meeting of the association, were entirely false. I have never claimed to be cured. I mention the medication I took over 50 times in the book. I was asked by the association if they could sell my book, to which I readily agreed. I asked one of those neurologists, at that AGM, where do I claim to be cured? Her answer was, "NO. you don't claim to be cured in your book but that is the IMPRESSION THE READER GETS WHEN  READING YOUR BOOK!" Now how can I respond to that?

Since then, I constantly hear patients tell me that their neurologist told them that I DO NOT HAVE PD, THEREFORE THEY SHOULD NOT LISTEN TO ANYTHING I TELL THEM!

 All this tells me that the medical profession does not want us to get better! That they would prefer that we have holes drilled in our heads and spend the rest of our lives with all this equipment in our brains and bodies, just to keep us symptom-free.

I don't believe this to be true, although the evidence tells me otherwise. Most of my neurologists have been most helpful and have encouraged me to continue doing the exercise and have willingly given my medical records to Dr Norman Doidge, who wrote his latest book, "The Brain's Way of Healing" in which he wrote a whole chapter on my experience. From his book, I expect that one day, not too far distant, the medical profession will accept that exercise can reverse the symptoms of Pd, and it wiill be part of their training. But a lot has to happen before that becomes reality.

In the meantime, patients like you have to continue to take medication that does nothing to slow the progression down and suffer the horrendous side effects of those medications.

I have started to visit every English-speaking country, at my own intial expense, to show Pd patients how they are immediately able to walk properly, by using their conscious brain to control all their movements. I have not yet met any patient - who is able to stand up on his/her own two legs - how to walk normally! I spoke to over 2500 patients and successfully walked with over 100 patients. If I am spared I would be willing to visit other non-English peaking countries as well. I do not charge for what I do!

I have not needed to take any Parkinson's medication for the past 13 years and I still live a 'normal' life at the age of 81 and was able to travel nearly 20 000 kilometres to 7 cities in Australia in one month and immediately afterwards visit 12 different cities and/or venues in New Zealand the next month, without any health problems.

You would think that Pd patients would be beating down my front door, but they are not. Not until doctors give their approval for what I am doing will others be encouraged to follow suit. I am only one man, doing all this for no reward! What more can I do?

WHAT A PITY!