"Hope is desperate in Parkinson's" - an insignificant misconception or a serious hindrance to innovation?

[CPT_Tom]

"Hope is desperate..." is a phrase I saw in a commentary about the willingness of people with Parkinson's to enter clinical trials.I found myself becoming quite animated by the suggestion because I suspect that this is a commonly held belief by those in the scientific and medical sectors.

This perception is, I think, quite a damaging one and widens the gap between the scientific community and those of us with serious chronic illness. The idea that people with Parkinson’s are desperate and that this is the reason they will join any trial even if there is only a slim hope of therapeutic benefit is one which needs to be nipped in the bud.

While I accept that “desperation” is in the eye of the beholder, desperation also implies that decisions are made without considered thought and without having regard for the risk/benefit ratio. This is simply not the case. Participation in a clinical trial is far more likely to be on the grounds of the following:

1. For altruistic reasons

2. For therapeutic reasons for which the risk to benefit ratio has been carefully researched and considered

3. In blind faith of the medical profession's advice and guidance on whether to enrole in a specific trial.

For me hope is rarely desperate. Hope is hope and desperation is desperation. The sooner the medical profession and those who regulate it realise that their perception of risk has absolutely nothing to do with the perceptions of those who suffer from serious conditions, the sooner medical innovation will come. The fact is that unfortunately people with illness are unaware that no one is representing their interests in medical decision making. We assume that those in charge of policy and regulations are informed and guided by those who have a real appreciation of our illness.

This is not all the fault of the medical community. If hope is often blind through an ignorance of the facts then we need to encourage better information, better education and greater involvement. We must bridge the chasm of understanding between real life experience and the development and regulation of new therapies.

I am intolerant of those who try to label my hope saying that it is "false" or "desperate". It is neither of these. Hope is, by its very nature, uncertain - therefore it cannot be false. My expectations of my future life were managed the day I received my diagnosis so that any talk of false hope is absurd. "Hope ignites a fire in the soul and rekindles the dying embers of ambition and purpose. When you accept there is the chance no matter how small, that you are not doomed to a life borne out of your own nightmares, then you start to gather information and you start concentrating on what you can do, not what you can’t."

Hope is a positive thing. It can only be a positive thing. It is not a precursor to making choices out of desperation.

[carolineb211]

I am currently taking part in a research trial to study the progression of Parkinson's disease.So is my husband who does not have PD. I hope that by taking part in this trial, Scientists can gain a greater understanding of the disease and help ,eventually, to slow the progression for future generations. I do have hope for a cure in my lifetime but accept that the likelihood is slim, I do not let hope dominate my life however. If we, the sufferers don't participate in these trials, there will be no cure, no greater understanding of the disease, no new drugs to help reduce the awful, and painful symptoms of the disease and yet another generation of people will have to go though the same as us. We do it for us and we do it for them. Without some hope, what else is there, resignation? Never!

[Lindylanka]

With or without treatments hope is one of the things that keeps us going. Desperation on the other hand is a lot more personal. The idea of false hope isn't one I can equate with. I am always a little baffled by trials. Especially ones who ask for 'de novo' patients. I always think that alongside these there ought to be parallel trials with people who are 'de longterm'! Okay so maybe not cost effective, or maybe not practical. I just imagine what it would feel like, still in the first hit of diagnosis, to be asked to opt into a trial that involved brain surgery, .... and what it would be like to realise at the same time that there were, as yet no answers. That would be a real fulcrum for hope and desperation.

By the time most of us understand enough about PD we are ineligible for a lot of trials. Perhaps that is when hope trundles off and we replace it with a kind of stoicism, an 'I'll get through this somehow' attitude. I would love to take part in a trial that looks at the differences between us, and why they are there. I'd be far more likely to use the 'altruistic' reasoning than the others, blind faith simply does not come into it, though I realise that for some that is where it starts.....

The statistical studies are interesting, especially the ones that are based on genetics. We can opt ourselves in to things like that, and I think they offer a lot of hope in terms of prevention, and/or early recognition of PD. There is still a need for many more people for 23&me's PD initiative.

'concentrating on what I can do, not what I can't' - that resonates more than anything.

But I am not without hope, it is just something I reserve more for others than for myself.

Good articlel! Desperation put's us into a active/passive position, what we need to be in is active/active! Yea to better education and information....

[pkell]

Of course we're desperate. How could we not be after years with no significant progress, years of watching our friends slowly lose one important ability after another, years of experiencing one disappointment followed by another? I think, if we were not a little desperate, we would be delusional, after all, we know the time each of us has left is finite. Hope is what stands between us and the cliff.

While the two, hope and desperation, coexist they do not depend on one another. If we are desperate without hope we have reached the end of our tether, if we are hopful without desperation we've only just begun the journey. Desperation motivates us while hope consoles us, but more importantly we motivate and console each other. That, I think, is where real progress will come from, out of the willingness and desire to sacrifice what ever it takes to make all our lives better..

[DavidGreaves]

For some, hope is no more than a passive dream couched in optimism with no real expectation of a positive outcome. They are the 'wouldn't it be nice if' brigade.

For others, hope is an illusion that colours their dreams and paints an unrealistic expectation. These disillusioned hopefuls are found among lottery winner dreamers. These two groups could be seen as passive hopefuls but their dreaming provides them with a warm comfortable positivity

The much quoted French philosopher and mathematician Rene Descartes said "Cogito ergo sum", I think, therefore I am. Hope is effective, when what you think determines what you become. Hope becomes the driving force, hope makes you strong, hope helps to motivate, hope makes you fight. This kind of hope is positive and turns dreams and illusions into beliefs which drive forward towards the goal. The word becomes flesh. The hope is transformed into action and the action becomes self-fulfilling. Dreams become hopes, hopes become plans. plans become actions, actions find solutions, dreams are fulfilled. Plan for a miracle

[paulaw]

I don't feel much these days, I think eventually our ability to feel strong emotion kind of deadens with the illness. Perhaps that's why I like studying science, It's a process that stays roughly the same but the variables change all the time.

A neurotalk poster said recently that the research is looking at such minute sections of our biology and it's true - they are. Is this the right approach.? will they ever connect all the dots?

Why should a person, especially a younger person, risk his life for humanity? Non-threatening trials - agree - are worth joining if you can . But the bigger ones,like GDNF and Neurturin, Pro-Savon and Neurologix are done in attempts to get really much better. And it could be the one and only attempt we ever make. I'm sorry but first I want it to work on me...and then humanity will have it too

.Bottom line is logic - there is nothing else we can do. That's not desperate,it's practical. Putting emotional requirements or explanations to it don't seem to mean much to me, I love the science of it and cell biology and the brain, neurotransmitters - I eat that stuff up,

I seek to learn and found this in the bible just a few days ago. i'm going to quote it not as a reiigious statement but because of its' logic.

Proverbs 3:19

The Lord by WISDOM hath founded the earth: by UNDERSTANDING he established the heavens.

Wisdom and understanding are powerful to say the least.