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WindsongMoonChild

"With enough $ and..."

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At the time of my diagnosis, I was told by so many people--everyone from healthcare professionals, to family members---that, (they had heard, read, or whatever)  "with enough funding and stem cell research, we should see a cure for Parkinson's in the next five years!"  What  a relief that was to hear!  So, things were not as bleak for me as I had thought.  There was a chance--a good chance--that a cure would be found in my lifetime. This, usually well intentioned information, was, I imagine, given to me for the purpose of providing me with a little hope... to make it seem like we were just on the very brink of a big discovery and, if I could just hold on and, if we could just raise enough money...

 

But, that was twelve years ago and I've learned a lot since then.  For one thing, I've learned that this is the standard pablum given to most PD patients--even if it is said with the best possible motives at heart.  It implies that, if we could just be patient and throw enough money at the problem, we could solve it once and for all very, very soon   The first harsh lesson I got to the contrary was, when I talked to other Parkie's in the days following my diagnosis who said, "Oh, yeah... they told me that too... twelve [seven, ten, whatever] years ago."  Oh my.  

 

The fact is, I needed hope then.  Still do.   I needed to believe that I might not die with PD, that I might not get worse and worse, day after day with no hint of a cure in sight. Still do. But, not enough to be fed, "with enough... blah, blah, blah... and... blah, blah, blah... we could have a cure... blah blah blah..." which, I believe, is actually so far from a matter of absolute fact--as to be, frankly, a lie!  There is no genius scientist, waiting in his or her lab, poised on the brink of a huge breakthrough--and, sufficient money to throw a switch or fill a test tube or something--to effect a cure!  

 

But, how close is a cure then?  O.K., so there wasn't enough money (for a cure in five years) twelve years ago, but, surely by now--had the five year thing been true--they should have pulled it off?  Yes?  No?  What say you, my Parky compatriots?!  Is a cure years and years away, or just around the corner??  Here's one opinion from The Wall Street Journal to start the ball rolling:

 

http://www.wsj.com/articles/a-new-attack-on-parkinsons-disease-1443827360

 

I await your wisdom.

Kim

 

 

 

   

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I agree with you Kim, it's a big lie. Best I can tell, the "experts" don't even know what causes Parkinson's Disease, let alone have a cure just around the corner. This same lie is told to patients of many diseases. As you said, I think the doctors like to dole out a little hope with the bad news, and that may not be all bad.

 

Our best hope is that the researchers will accidentally find a drug to slow the progression of the disease. That might buy us some time.

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If we give up hope, then we might as well all jump off a bridge. Personally, I'm going to allow myself to have faith that good things are around the corner (but I DO have a very high bridge all picked out, just in case...)

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I was Dx'd about a year ago. Every new doctor, nurse, or PA say the same damn thing, A cure is right a round the corner. Well it has been one long ass corner. First thing I learned doing research is we are a long ways away from a cure. How long, I will not even venture a guess.

 

I do belive that the treatments and symptom controll are going to get better and better. I would not be surprised that by the time I celbrate my 12 year, there are treatments that will help me live pretty normal like a diabetic person. Why do I feel this way? Because big pharma can make more money of a long term treatment then they can off of a cure.

 

I might be jadded, but I might be wrong as well. I still hope for the best. I still raise money for research, and I am not ready to give up.

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Yes, PD and other neurological diseases are on the rise, and there is big money to be made by big pharma on drugs and treatments

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"They" can say what "they" want, I'm not giving up. I've got a new grandbaby to see. I want to take a drive the length of Route 66. Actually it is Route 66. I want to  learn to keep my mouth shut when I don't really have anything positive to say. (This is very hard to do sometimes.) Sometimes I totally miss the mark. Partly that's why it takes me so mush time to answer these topics. Yes, I saw that miss use of a word.  :oops:  Is mush a breakfast cereal? 

 

I want to wear that pair of pants that has been lost cause I forgot where I put them. I actually have figured out how to find misplaced things. I put everything in a logical place where I would put them if I were looking for them. Believe it or not this works. 

 

I'd like to actually lose that 10 last pounds. Actually more than that but I don't want to discourage myself. 

 

I'd like to know that all the mistakes I've made are for nothing. 

 

I don't want to leave earth yet. 

 

I want to see if my son actually does take his cats back.

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I allow room for hope, but when you realize that the state-of-the-art, top of the line drug for treating Parkinson's, Levodopa, was discovered fifty years ago--let's just say, Musicman, I have a few high bridges in mind myself, just in case.

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No medical professional ever told me this, so I went straight to suicidal depression. I spent three years feeling like a victim of PD and the many changes that occurred as a result of my diagnosis. Not merely physical changes; also a divorce and refusal of assistance from my immediate family.

 

Then, in January of 2014 I began to grieve all the painful experiences of my entire life. Working with a spiritual teacher, feeling every stuffed feeling and letting go of resentments saved my sanity. I learned to be at peace with life on life's terms. It was a messy process and an uncomfortable one. I persevered. It didn't change my diagnosis or the progression. It made it possible to enjoy my life again. I no longer spend time each day monitoring my every symptom. The less I focused on having PD, the more I had the energy to focus on love, peace and joy.

 

I continue to practice non-resistance to PD or to anything life throws at me. I let whatever I can accomplish on any given day be enough. So far, so good.

 

Dianne

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 I no longer spend time each day monitoring my every symptom. The less I focused on having PD, the more I had the energy to focus on love, peace and joy.

 

 

Good for you! I just go thru life as if I don't have an incurable disease.

I considered going to PD groups and meetings, but thought, "I don't want to be surrounded by all that negative energy", so I hang out with healthy people.

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I want to be optimistic here but can't. My younger brother was born with cerebral palsy along with other complications. As a child I thought what could I do to help. I personally helped to raise money for MDA, as it held its annual telethons. Looking back the sums of money raised during those years must be staggering. Yet I don't believe we are any closer today than we were then in finding a cure for it. I see that as a model that doesn't work. Same goes for our disease. Nice idea, and yeah they'll make some progress, but nothing to speak of verses the enormous amounts spent. Meanwhile, I'll continue to try to be the change I want to see in the world everyday.

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Well there are three drug companies now working on one new discovery.That is promising to say the least.I do think more money should be spent so that all the PWP get the best possible care today.I heard that same message at a NPF moving day event.The facts are many do not get the best of care regardless even if their insured.Many people who came had only a general neurologist or a primary for care.

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20 years ago I was told the very SAME..." So many new meds out there now that a cure is sure to be within 5 years".

 

It is really up to us to keep pushing for those that will listen. Find the cause or causes and start there.

 

Pharma will always have a drug that helps, will also cause side effects.... oh, but there is a drug for that too. So don't count on them for the cure. A cure for PD or other diseases would put them out of business....don't get me wrong, we need them until someone figures this out. Hopeful for a pioneer to come up with that vaccination!

When you think back over 50 years, there have been very few cures for any diseases. But many new drugs that help symptoms.

 

I'm not giving up at all, never will.

 

I personally think many of us with PD, not all of course, that had bowel issues ( leaky gut) is where they should be concentrating.

Our guts rule....

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My Doctor never said anything about a cure to me. He did however tell me that he and his fellows were working on a promising cancer drug that looks like it can slow the progression of the disease down and even reverse some of the symptoms. He just completed a phase 1 trial with end stage Parkinson's patients with very promising results. He is supposed to be presenting his findings at a conference in Chicago sometime this month.

 

Dave

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When you think back over 50 years, there have been very few cures for any diseases. But many new drugs that help symptoms.

 

 

Yikes! That is a damn good point....

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A cure for Parkinson's? yup, and world peace will break out this Saturday.............  Oh, and I'll win the lottery next month as well..............  Good things to hope for, but in reality, I don't think any of the aforementioned will actually happen.............. Hope, is just a warm fuzzy feeling...... doesn't do much, but it's nice..........

 

As a dear friend told me so long ago.......... if you pray? why worry?, and if you worry? why pray?.............................

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I have said this before...I think it is more likely now a cure will be found because brain neurological diseases are blending and expanding...making a larger market...which will incentivize research and development. Sadly, the increase of market equates an increase in sorrow for a lot of people. Pharmos and investors base R & D on market size. That is my reality check. Good thread.

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This is interesting, but it is dated March, and no news since then. Wonder why MJF hasn't picked up on it and isn't throwing $ their way? Usually they are pretty good at highlighting breaking news and research.

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I think there have been a number of disappointments in PD research in the 10 years that my husband has been diagnosed. I also think the recognition about PD progressing through the brain stem has helped me see how hard it is to do PD research. It seems to me that people in the studies may be in very different places in the course of the disease so what may help one may not help another because different parts of the brain are affected at that time. I think the best book summing up PD research has just been published: http://www.amazon.com/Brain-Storms-Mysteries-Parkinsons-Disease/dp/0374116172/ref=sr_1_1?ie=UTF8&qid=1444225668&sr=8-1&keywords=parkinson%27s+disease. My sister (she also has PD) is going to hear the author speak! 

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I am, generally speaking, an optimistic, in fact, very hopeful kinda person--but, not for a cure for Parkinson's in my lifetime.  I guess I would say I'm more of a realist and, realistically, I don't think doctors should be telling patients that a cure is to be expected soon!!

 

LOL... just saw this, when researching something else...

 

 

ABSTRACT

Fatigue is a common but poorly understood symptom in Parkinson's disease (PD). Using previously validated scales, we asked 58 nondemented PD patients and 58 controls to fill out questionnaires assessing fatigue and depression and found that PD patients were more depressed and more fatigued than age-matched controls. Although fatigue correlated with depression but not with disease severity, many nondepressed patients had significant complaints of fatigue.

  • © 1993 by the American Academy of Neurology

NONDEMENTED??!  NONDEMENTED??  OK, so it seems to me that we have a greater chance of becoming demented than cured any time soon--and, neurologists know it!!

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When I was DX at UCSF, I was told then(2013) by one of the professors and my MDS that until they know the causation of PD they will not be able to find a cure. He said anyone that says there is a cure is a snake oil sales man. He did say that maybe sometime in the near future there may be better treatment options that will slow the progression or possibly even almost stop it. But he said those are a long time off as the FDA takes a long time to approve anything.

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Well dan, that is the first I have heard of a doctor telling the truth when it comes to a cure. Sounds like you have a good one. You will need to keep them around. 

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Dan a friend of my second cousin knows this guy in Thailand....  LOL.   There is a snake oil salesmen on you tube that is also a well known author.   Oddly enough he claims to have had every disease possible, but cured himself with some magic supplements. Ahem...  I've written and invited him join us, but for some odd reason he hasn't responded... but I get 50% off coupons to try his miracle cure!

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