Search for a cure


#1

When my wife was first diagnosed three years ago her neurologists joked that there was never a better time to get the disease as a breakthrough in stalling or even curing the disease was achievable within 5 years. The media too was full of like type stories. Clearly with the benefit of hindsight we was just softening the blow as three years have gone by and everything has gone very quiet regarding breakthroughs. Why can't the 'expert' be truthful rather than giving people false hope

 


#2

Don't give up, Davech!

There are many promising things in the pipeline.....existing drugs repositioned to stop and reverse Parkinsons ( Exenatide),vaccination, GDNF directly into the brain, better drugs ( Rytary.)...look at the research going on, the clinical trials.

It is going to get better. 

Soon.

Love

GG

 


#3

I   do hope so GG BUT, after 17 years, and all the promises along  the way, I am very doubtful that a cure will come along any time soon. Sorry to all out there that are hopeful, but we are not holding our breath for a cure in our lifetime. OH was diagnosed aged 47,some17 years ago, and, despite all the vast amounts of money being channelled into research, we are no further forward in the quest for a cure, or even a better treatment option than we were many years ago.

Makes me wonder if all the thousands of pounds that our  branch sends to HO each year, earmarked for research is just a waste of money which would be better  spent on giving members of our group a better quality of life with trips out etc.? Just my thoughts on this now very sensitive subject for me.


#4

Many, many people are told the five year line on being diagnosed. One day it will be true. That doesn't mean that all is lost, you can live well with Parkinson's. And, it doesn't mean there should be less research. The easy approaches haven't led to success, but improved understanding comes all the time (e.g. the role of misfolding alpha-synuclein). One of the problems is that even if we knew the answer it takes many years to go from the test tube to the pharmacy.

And what of us, people with Parkinson's, what can we do? We can be proactive. We can get the most out of what is available now (e.g. try not to eat protein close to taking levodopa); we can follow leads in the research that we can safely adopt (e.g. exercise); we can support the research process (e.g. join clinical trials); AND we can do our own science.

Science is not something that just other people do. Science can be done by anyone. Indeed many people with Parkinson's were scientists and engineers before diagnosis; the skills don't disappear at the moment of diagnosis. Many of the barriers to doing research are breaking down: access to journals over the internet; cheap computer hardware; often free software [e.g. the R statistical programming language]; cheap, accurate measurement tools [e.g. sensors that can track tremor].

What of the person who claims to have no relevant skills. First, this I doubt. At the very least you have 24/7 experience of the disease. And, anyway, one of the features of Parkinson's is that in most people it is slowly progressive. You  have, perhaps, 20 years to get up to speed.


#5

I don't have positive feelings on this one.  I've had PD for 16 years, getting worse all the time.   I asked my consultant to tell me honestly if I could hope for a cure but he said he didn't think so but he wouldn't commit himself to that.

All the best

Casie

 


#6

I am very positive about Parkinson's research although I very much doubt that any cure will arrive in time to help me personally. I have seen the breadth of the research programme and I have been lucky enough to hear about some of it from the researchers themselves.

Benji makes an important point about the balance between long term research and efforts to make PWP comfortable in the short term. Donating money to research does not mean sacrificing the short term. Some of the research aims to discover a cure. This is important but it is far from the full story. Most of us would settle for symptomatic relief that worked even better than Levadopa. Other aspects of research look at ways of maximising the effectiveness of existing drugs, preventing falls, understanding different types of Parkinson's etc. and these are all relevant to PWP now. 

EF

 

 


#7

If you want to understand more about Parkinson's Research it is well worth watching this short (27 minutes) video

https://www.youtube.com/watch?v=Jt5bK9lu8w0 

It features two leading Parkinson's researchers, Dr Alastair Noyce and Dr Michele Hu, along with Dr Arthur Roach (Director or Research at Parkinson's UK) and Steve Ford (CEO Parkinson's UK)

EF

 

 


#8

Back in 2010 I predicted that a cure would be found by the end of the decade. I think that is looking a trifle over optimistic. Without committing myself to any sort of time scale I think it will take much longer than that. I would say that a cure is more likely to come as a series small steps rather than one big breakthrough. Apart from better management of the symptoms the next step will be to slow down or even halt the progression of the condition. Reversing or undoing the damage already done is likely to prove more difficult. However, I remain optimistic that much better drugs and therapies will soon be available, to better control thee symptoms. Research funding permitting. 


#9
vaccine shows promise . click on research top of page.

#10

Hi Gus hope you are ok . Vaccine does look promising . Fingers x . 


#11
Yeah not too bad just waiting for a battery change for my dbs

#12

In the 12 years since my pd diagnosis the following products of research have impacted on me:
Drugs:
Stalevo – One pill combining Sinemet Plus and Entacapone                                                                                                                                                                                                                                                  Verdict: Convenient but more effective taken separately; difficult to swallow; varying dosage means a separate prescription, the pills can’t be broken

Mirapexin CR – Slow release version of Mirapexin
Verdict: Slow release less effective than the original version.

Clinical Advice:
Behaviour changes now standard procedure to ask if affected
Verdict:  Good that they re now taken seriously but just accepting what the patient says is not enough.

Everything else that I know and implement in the management of my PD has come from:
Personal experience
Tips passed on by other pwps

I never think about a cure or a magic drug that will improve me (first define a cure). To me it’s a waste of time and energy.
If anything is available I trust my neuro will inform me.
Of course there has to be research into better drugs and treatments but i feel that the self management by pwp is not taken seriously.
In my opinion, research into why some pwp are more successful   than others and implementing the changes at clinic could have a significant impact on a lot of pwp
L