A Newbie Realisation


#1

As a new Parky, coming to terms with the diagnosis and trying to absorb information from all of you, one remarkable point (that you'll already be aware of) strikes me, and that is... 

The road to disability (of any sort) with PD is a very long one. Many people, like myself report symptoms years before diagnosis (loss of smell/stiffness/sleeping problems etc), in some cases 10 + years before there are any obvious symptoms. On nearly all those occasions, we're dismissed by our GPs or Neurologists and told to get back to our lives. Only when we're presenting such obvious signs that a trained monkey could diagnose it, are we given any attention. 

What really irritates me, as a former health professional, is that this disease was identified in 1817 and here we are 200 years later, and there's still no algorithm of symptoms or presentations- not to mention a clear diagnostic test, for the disease. Ebola, HIV, Smallpox and many more awful illnesses have come and 'gone' in that time, yet we and many other neurology patients are left to languish. I know you can't hurry progress and that the brain is a little understood organ, but f*ck sake! 

I feel better now. :) 

Me. 

 

 

 

 


#2

What about the millions of £s Parkinson UK has spent on research over the last 50 years! I suppose Parkinson patients have always suffered in silence (their speech being affected in the later stages, often intelligible) Maybe now that for  most people the fear of dementia(Alzheimer's)  has  pushed cancer off the top of their list, brain research really takes off.. Neurological diseases are pretty devastating.. I remember thinking when diagnosed : I would have preferred a cancer diagnosis, at least you stand a chance of remission.


#3

I'm beginning to think the reason why not much progress is being made, is because no drug has been found that can help symptoms better than natural products. In India, they have been using Mucuna Pruriens, the Velvet bean, for centuries, with positive results. In trials, the natural wins out over the manufactured, every  time. The drug companies are not going to be interested in these results though, are they? No money in it for them!

I agree it's frustrating there is still no cure, after al this time.

 

Twinks.


#4

Call me cynical but Parkinson's is seen as an old person's disease (despite plenty of us on here not even near retirement age). The powers that be won't spend money prolonging the lives of older people who - in their view - are just a burden.


#5

Thanks for your responses, everyone. I think you've hit the nail on the head;

Firstly, PD doesn't present the potential of a global pandemic, so why invest money in it.

Secondly, it affects the older generation who aren't always capable of being vocal about their discontent and before too long they'll die off anyway. 

I think if Michael J. Fox hadn't been diagnosed with it, we'd be even further behind with research. 

 


#6

Twinks, 

If only it was that clear cut ! Large(r) scale trials and long term monitoring have still yet to be done. There was an interesting research paper on MP ipublished in2004 ( with a.o. the participation of Professor Andrew Lees), which said in its Conclusion: " Assessment of long term efficacy and tolerability in a randomised, controlled study is warranted". Why did it not get a follow-up? We are waiting !

I am sure if Mucuna Pruriens had been so successful through the ages in India it would be used all over the world. Natural plants (-extracts) have and still are being used for the treatment of many diseases. (but do not be impressed purely by the "natural" label, there are some lethal "natural" products, like (Hemlock) plants  and (Amanita Palloides) toadstools about, of which some, after intense (i.e..expensive) laboratory work can be used in the treatment of diseases. You can not say that natural sources have been completely rejected by Big Pharma, they can still make a profit out of enhancing these products. The "alternative" market is as rapacious as their regulated much maligned ugly step sister. The difficulty at this moment is knowing how much to take and the strength of the different Mucuna P products available as only Zandopa is regulated in India..