For those who care for someone with Parkinson's disease
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We are 11 years since my husband was diagnosed with PD. At that time I was told a cure was 10 years away. Today an email from the Michael J. Fox team offered this update on research: https://www.michaeljfox.org/foundation/news-detail.php?our-staff-scientists-review-year-research-progress&et_cid=768226&et_rid=61623784&et_lid=Read+Moreem_cid= I was disheartened to read this. Are we still 10 years away from a cure? Is there a cure? Will it come in time to help my husband? I pray that progress is made quickly, if not in time for us than for others not so long upon this journey. |
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| I hear you Mak. in the early 1980's it was said Parkinson's Disease was the Neurological disease scientists knew most about and with proper funding they expected a cure within 5 to 10 years. Here we are now 35 years later being told the same thing. |
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I had a conversation with a someone today. He made a comment I had never considered before. "Finding a cure would be counter-productive for the researchers. The inflow of funding keeps them employed." Am I naive or is that statement cold hearted? Or both? I was shocked and didn't reply. Thoughts anyone? |
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As tempting as it is to jump to that conclusion, it's pretty short sighted. It's not like PD is the last or only chronic disease on the planet. If researchers solve one puzzle they move on to the next, they don't just quit a career altogether. That's the challenge with estimates. They're either right or they're wrong. And they're seldom right. When they first started this battle it probably did seem within reach. I feel like they've found PD to be a tougher nut to crack than they anticipated. I have an understanding of what it must be like to be charged with trying to come up with solutions. I work for a government agency. People want solutions to their problems NOW ....and who wouldn't? But there's never an easy answer to pull out of your back pocket to fix it right away. It requires work, which requires time. And in the meantime people want reassurance that you have a clear timeline. My guess is that ten years was their best estimate working with the info they had available at the time, given as an answer to people they were desperately trying to help. It's hard on everyone when the best estimates don't come true. There's a real temptation to call researchers (or government workers!) evil, but in reality most are real live people who got into their fields because they had hopes of shepherding positive change into the world. |
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| ML, I know what you are saying and the train of thought you stated. That is the "company" line of things. Then we have researchers who went along with that stand and then they themselves developed P.D. and say now they understand the sense of urgency and frustration of research not moving quicker. Parkinson's Disease is fatal it is not a chronic disease. That being so We do not have the luxury of being long sighted. Waiting several decades for them to find a cure |
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The hard part about this is that a "cure" is not like a treasure that someone hid, or a diamond waiting in the ground to be found. A cure has to start with knowledge about PD -- is it one disease with one cause, or a group of diseases with simliar causes that all impact the substantia nigra and reduce dopamine production. What is known about the disease mechanism? What is known about the impact of different treatments, and why/how they work. Basic research is the bedrock of cure-finding. Knowldge, experience, experimentation trial-and-error, careful testing etc. etc. all go into the work of discovering a cure. Any many times the discovery is just an accident. When Carbidopa was discovered as impacting PD it was an accidental finding. |
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Mak, I have heard this said about cancer, too. While this is a simplistic scenario, please consider this...my oldest brother, Bill, died over fifty years ago of Hodgkins Disease, a form of cancer. It was then a death sentence...stats were 5% lived, 95% died...Now, those statistics are reversed. All the while, NO cure for cancer has been found. Perhaps the same could be said for Parkinson's? PWP have better resources now and are given access to better meds and doctors...BUT, still no cure! This doesn't mean that research is useless. I think it is a rather unintelligent statement to say that doctors do not "want" to find a cure. One needs to consider that finding a cure for ANY disease would not end jobs, but would open new doors for occupations created by new meds, new types of physicians, etc... Remember reading that people were afraid technology would cause job losses on a massive scale? Same thing. Didn't happen. As a society, we adjust. Finding cures won't cause the loss of jobs and it is desperation that makes us even hint that it would...and that researchers or pharmaceutical companies would hold back anything that would allow so many to suffer. No one here wants PD cured more than our family...we have lost Carl's Mom, I am losing him, and just lately, his "baby" sister says she has lost her sense of smell at 52...scary to think PD might be rearing its head again. But, we choose to believe good people ARE working hard to find a cure... Try to stay positive. Try to keep hope alive in your heart. The cure is out there, waiting to be found...someone will find it and help many. If someone asks you again, tell them you KNOW there is a cure and can't wait til we all have it! |
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| Well I'll have to get some of those rose colored glasses I guess. It might be a simplistic scenario but I wouldn't say it is unintelligent. Pharmaceutical companies won't hold back anything that would allow so many to suffer? No of course not as long as you can pay for it. First thing that popped into my head was the epi pen (sp?). If you look there are many more I'm sure. I'll be back later gotta scoot. |
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We were told, 11 years ago, that a cure was 5 years away. I follow PD research pretty closely and have not seen any real breakthroughs since then, and the "new" drugs that I've seen come out are pretty much sinemet variations-on-a-theme/"me too" drugs....or require invasive surgery which not every PWP qualifies for (DBS-not every PWP meets the symptom criteria) or can afford (the duodopa pump). I do believe there are some incredible, and incredibly dedicated, researchers and scientists out there-but those people are going up against industries that are massive and have powerful motives to keep the money rolling in. Pharma makes billions off of PD drugs currently-anyone really believe the possibility of losing those guaranteed billions each year doesn't factor into decisions about what PD projects get funded and which don't? After reading countless research papers and articles over the years, it seems that research is supported if it is highly likely that if successful, it will result in a drug that will generate at least as much as, if not more, money than the currently available PD drugs do. I understand the company finance angle, but it doesn't exactly bode well for the meaningful advancement of PD research...at least not in time for many already diagnosed. Then there is the care industry-how many PWP are in assisted living, rehab, nursing homes, care facilities? Those patients represent a significant portion of the residents: the financial impact on these places if their PD patient population were to be cured would be huge. What about all the people employed there? The same thing can be said for hospitals, where PD are routinely taken for falls, MRIs, evaluations, episodes of psychosis, etc., pharmacies which dispense countless PD meds, and many others. This really goes beyond PD, as the same motives are present for research for Alzheimer's, MS, etc. I would also go so far as to say that doctors are now not really trained to find the cause of a symptom: only prescribe a drug to treat it. I have read that pharma actually helps design the curriculum for many medical schools: how biased do you think that might possibly be? Until we know what causes a disease, and it could be many causes, I don't see how we can cure it. And when was the last time a cure was found for anything-was it polio, in the 1950s? It's hard to be optimistic when we see our loved one consistently lose ground and there is nothing to change course. |
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Good conversation, but being optimistic isn't looking through rose colored glasses, My Friend. We just choose to HOPE and with that hope we realize that there is no certainty...our family is counting on a cure for PD and cancer, but until then, we don't place blame...we just keep plugging along. Hope your New Year brings you all happiness. |
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| Looking for a cure, your comments perfectly echo the statements made to me the other day. Of course there are dedicated people trying to find a cure. But, the giant pharmaceutical industry may overshadow altruism for profit. Nevertheless I'll keep a smile on my face and hope, in my heart. |
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| Well said Lurking. |
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If they found a cure tomorrow, I believe it would be too late for my husband. Of course I hope for a cure for others now and in the future that can be helped. But hope for my husband? No way. I am sure he will die of this horrible disease. |
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| OK.....so I have read this thought provoking dialog. I have read the ideas of the optimists and the opinions of the realists. And the last post.....well.....everyone with PD is going to die....and so am I. Is big Pharma holding a cure back? Not likely. The Researchers....nooooo. Their next funding is not awarded because they failed this time. How worried am I that the beds in the care homes will be empty? Not a speck. There is a waiting list for every single bed, and the better the care, the longer the list. If it is not someone with PD, someone with dementia, cancer, MS, diabetes, stroke complications or COPD will be the occupant of that bed. So we all have waited for a cure for a long time. Some have changed their ADL with new drugs, surgery and exercise, and other therapies. Comptan was not offered to us until 10 years ago. We paid dearly ($1570 monthly) because it worked and was not on Medicares formulary or on Kaiser Permanente's either. Weirdly, Obamacare rolled it into their language. That and another drug dropped our RX expenses by $2250 a month. And they worked, and still do. Is he losing ground. Of course. But I am not blaming anyone, nor do I have no hope. The only thing I have learned (from this forum and others) is people like Al teach us more than the best neurologist ever will. Suggestions from the caregiving spouses have lightened my load many many times. And the beat goes on. |