What is it that Persons with Dystonia truly WANT ? Is a Cure being held back ???
Lately I have wrestled with this question as I get more and more emails. More often than not, being unsure what the question that is being asked by the emailer. At times, I sincerely don't know what persons with dystonia want ? I know a CURE is what we all want . But ,in the meantime ? CARE ? Realistically ??? What are our expectations regarding current trends in research ? Is Dystonia being forgotten by science ? Is the Torsion A protein going to help all forms of dystonia ? What do you want ? Please think about the points made in this Post.
( I'm still thinking..do I want normalcy ??)
beka
( I'm still thinking..do I want normalcy ??)
beka
Tags: a, cause, cure, disorder, dystonia, genetics, movement, neurology, normal, research
Replies to This Discussion
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Permalink Reply by BDrake on -
Beka-
I know what I want is for doctors to treat me more compassionately, with much better bedside manner. I would like to be treated the way they would treat their mother,daughter,sister etc. Yes, I would like answers but I understand that they can't possibly have them all and I feel as though 9 out of the 12 I have seen have ego issues. If they can't give me an answer than I must be the problem. I must be crazy or faking it or have severe stress and unalbe to process my emotions properly and they all make this decison after only seeing me one time for no more than 20min. I have spent way too much time I'm sure trying to figure out why they treat us the way they do and I can only figure that there jobs are stressful and if they become too compassionate/attached then it would effect them on an emotional level. I don't know. I would like for these professionals to act professional and look beyond what they see in their office and try to imagine how difficult life can be at any given moment for those with dystonia. For instance, I'm still trying to figure out how to train my body to pick up the slack of other affected parts. Like when my right hand became straight and unbendable (even others could not bend it) it took a while for me to learn to use my left hand. There are several things that can be taken for granted by anyone who can function normally. And just because I'm not the most severe case they've seen it's still difficult. Then there's financial issues, family issues, the list can go on... I feel like I'm ranting here and I may not have even answered YOUR question :) But that's what I want most; for doctors to take me seriously and treat me with sincereity.
~Becky
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Permalink Reply by beka on -
Go ahead and rant - Becky.
I feel like doing that right now. People with dystonia often email me asking me tons of questions about drugs, treatments, issues with docs with the big question that keeps coming up is the one " When is there going to be a Cure ?". Or "Why cant you do something about it ?".
I wish there was there was a cure, but my logic as a person hopes for one tomorrow, anyday..but my nursing logic and intuition tell me that one really won't occur in my life time.
The brain is just too complex. I think new treatments will increase over time, but a true cure ..uhmm..not so sure about that one.
The gene for sickle cell anemia was found 50 years ago, yet these patients are still dealing with the ramifications of the disease, having their symptoms fixed when ill...sorta of like us...Symptom control..Yet at times I really wonder if symptoms for dystonia are truly being controlled ?
Anyone with thoughts on this ???
I ask myself why, why , why soo long for these patients to be waiting for a cure when the gene to prevent the disease is available.There it is sitting in a lab....Yet I can only assume that it must be incredibly hard to make that single gene work in the African American population...to transfer it into these patients...
Then I start looking at Dystonia, more than 20 forms of it ...How can we really expect things to change...Urgghhh.. I find this soo frustrating...
more later..
beka
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Permalink Reply by lissamel on -
"Symptom control..Yet at times I really wonder if symptoms for dystonia are truly being controlled ?"
Coming from someone with fresh eyes I believe taking a pill to stop muscle spams\hardening (too new to know the technical names!) is just a patch, for if it were truly being controlled than why the need, or fear of, missing a pill or injection? Just an imagery of control, to help a person feel like they have something to hold onto.
I told my doctor I would rather go through physical therapy after surgery (discussing side effects of dystonia in my neck\face), for it was something I could see, feel and understand - have control of. Muscle spams, with medication to stop it? No, that is not control, more like being controlled.
Mellissa
(the newbie - just two weeks shy of being diagnosed)
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Permalink Reply by Jonnie on
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Becky, somewhere along the line, it was realized by someone that trying to make my body do what it won't like trying to straighten a curled hand, actually caused me to lock up more, whereas doing the opposite helped me to relax faster. Does anybody else respond this way?
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Permalink Reply by beka on
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If there was a cure, I'm not sure I would know what to do after living so many years with dystonia. 20+ years.
Normalcy- I really don't even know what that means anymore. Even with DBS. That's a been a huge adjustment by itself...and brings on other worries...
Not having a sensory trick ?
beka
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Permalink Reply by beka on
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Still typing here and thinking...about this touchy question. All week I answerd alot of emails from several patients and took some phone calls, which often can last for more than 3 hours at a time. I listen to events, symptoms, care, reactions, etc.
I just read the following - well said...
" Potential cures are kept away from patients. A simple, inexpensive compound (dichloroacetate; see http://www.thedcasite.com/ or search PubMed) already approved for treating a rare metabolic disorder has been shown to be highly effective against some cancers, but no oncologist is using it clinically because there's no money in it for pharmaceutical companies, and only pharmas can afford the expense of clinical trials. The same holds true for so-called "neutraceuticals," natural components of foods and traditional medicinal plants that people take for their supposed health benefits. Some such products have shown promise, without apparent toxicity, against a variety of common health problems. The pharmas are trying to have the FDA declare them "drugs" so they'll be pulled from the market until/unless they're shown safe and effective in clinical trials, which won't happen unless the pharmas can figure a way to patent and profit from them.
Even treatments that don't cure, but would interfere with companies' profits, are kept out of the hands of patients. Diabetes has no cure. Insulin supplementation, no matter how administered, cannot approach the body's normal moment-by-moment response to changes in serum glucose and other physiologic signals. The anti-diabetic drugs pushed on Type 2 diabetics just postpone their starting insulin treatment, and their side effects - severe gastrointestinal upset and, for the thiazolidinediones, increased abdominal fat storage - can be more unpleasant than self-administering several injections a day. The costs associated with uncomplicated diabetes are substantial, when you consider lancets and test strips or cartridges for measuring blood glucose up to 6 times a day; patented drugs; insulin delivery systems ranging from disposable syringes and needles to pumps with infusion sets that must be replaced twice a week; and frequent doctor visits. A needle-free, air-powered, refillable insulin "pen" (with no disposables) is available in Europe, but US manufacturers have succeeded in preventing its approval here. Likewise, blood testing systems that can approximate glucose levels based on some physical parameter that doesn't require pricking the skin or use of disposable test strips have been kept off the US market, supposedly because of their lower accuracy; but they're accurate enough to warn of dangerous highs or lows, they'd reduce the frequency of painful sticking, and standard glucose monitoring would remain as a backup. If a cure were found for diabetes or for atherosclerosis (statins are probably the top-selling prescription drugs on the market), it wouldn't make it through Phase II clinical trials before it would drop out of sight. The pharmaceutical companies and manufacturers of related products couldn't afford to allow its release. "
More :
" It has been 27 years in the developed world since we started recognizing HIV as a disease. But the virus appears to have been with us and our close relatives for a million years or more. Gorillas have it, chimpanzees carry it, other monkeys have it, or rather quite close relatives of our two main strains.
Alzheimer's, muscular dystrophy, and Parkinsons disease are not caused by bacteria or viruses. While research exists trying to explore vaccination for alzheimer's, it has a basic problem called the blood-brain barrier. That barrier keeps the immune system out, except under rare conditions. We call the invasion of the brain by immune system cells encephalitis (which can also be caused by some direct infections) and usually the immune system does more damage than the disease does in the brain.
Paraplegia is caused by injury usually, and while the long term damage is partly immune system related, you would not want the treatment that would prevent any inflammation and cell death, since that would result in shutdown of the immune system and rapid death. So instead, one should focus on stem cells for repair, and prevention of damage by several days of low body temperature together with phenobarbital and piracetam. Once this early period is over, nerve cells stop dying. "
Having seen patients under the influence of phenobarb comas, that treatment is not for me...
Thoughts ???
beka
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Permalink Reply by Ellen S on -
Hmm. There is a lot of buzz about just this topic. I'm not sure exactly where I fall. The following is MHO of the day...
It all does seem to boil down to money. A company can't survive without being compensated for their work. People can't feed themselves if all their money is going for meds. Greed comes into play on the part of both. The Government IS the people, so taking more money from the government only takes it from ourselves.
Playing devil's advocate, and borrowing Beka as an example:
On the other hand, I'm sure Beka likes being paid for her work, even though it is humanitarian in basis and serves the greater need. She spent years in school and years more perfecting her skills. She should be paid for it. What should she say to someone who comes to her telling her that they deserve her help, her skills and her time to the exclusion of other paying patients, but without paying for those efforts?
In order for this to happen, the money has to come from somewhere to support her. Beka still has to eat, so unless she gets money from a rich uncle, she's not going to survive doing this, even if her heart tells her it is the right thing to do.
So, companies need to make a profit, but patients can't afford their products. Companies go for whatever they must, to survive. So must the patient.
Who will win this tug of war, and is there an alternative?
I'm not a fan of big government, and definitely not socialized medicine, but, playing devil's advocate again... might it be in the best interests of its people that government be in charge of the Phase 3 testing procedures so that the burden isn't on the part of the companies trying to develop the drugs? Compensation to the government for their time happens when the drugs are made available and profits realized?? What about grandfathering-in certain treatments/herbals etc so long as potency and purity can be proven?
But then who makes the decision what goes to trial and what does not, and on what criteria should those decisions be based?
Seems to make a small bit of sense to me, but what an enormous legal nightmare!
There must be more from all these fabulous brains here. Any other thoughts or ideas??
What about the novel concept (of 500 yrs ago) to simply teach patients about their medicines and conditions instead of expecting them to blindly follow orders? Shouldn't some of the responsibility for patient care be on the patient? It is the rare physician that attempts to educate patients instead of give 'orders' and expect that they will be followed. Disagree with your doctor just once and you'll quickly see where he/she stands.
Many physicians actually discourage (some quite loudly so) their patients from learning about their conditions and medications. Those interested in educating themselves about their conditions are often privately labeled with derogatory terms and phrases, or deemed to have psychiatric disorders. Many on this board will attest to this fact.
When did our doctors cease being a trusted, knowledgeable and educated friend who helped us toward wellness, to become a dictator whose decisions are final and to whom we must pay exorbitant fees or we are unable even to be tested or receive the very treatment we already know we may need to survive, no matter how basic, or ongoing? We used to be Mrs. so-and-so, or my neighbor "Frank". Now we're "My patient" or "My patient with the thyroid condition and dystonia... you know, the one with the intractable migraines." Sadly, it seems the connection and the true caring for the human being inside the body has all but disappeared. God bless those doctors who "get involved" with their patients!
In the old days, people were more knowledgeable about their bodies and health than the average patient today. Their methods of treating were much more archaic, but here we are in 2008, finding ourselves going back to methods used a thousand years ago, or herbs animals treat themselves with daily, because someone finally got around to paying millions of dollars to prove in a blind, placebo controlled test what our ancients already knew for generations...that they work. Does all this control lead to better treatment for all, or only some?
There are days when all this just exhausts me. It's like Lord of the Flies... who's going to be in charge and how is everyone going to survive thru the process of figuring it all out!
Sometimes I think we have forgotten plain old common sense. There are times I feel like I'm being assumed to be an idiot, incapable of making any decisions on my own.
ex: Don't turn my hot chocolate milk into a drug. We've been using it successfully to drink for centuries. Restricting it at this point serves no purpose.
I can use hot chocolate to help my headaches, or help me fall asleep and not call it a drug. It can 'cure' my child's inability to eat when used as a bribe at the end of a meal but that doesn't make it a drug either. It has side-effects that can include serious headache, hyperactivity and other symptoms, and you can overdose on it. (well, you can overdose on water too!) The sugar in a simple chocolate bar could send a diabetic into a coma, yet dark chocolate was proven to be beneficial to us.
Some will argue there are 'drugs' present in chocolate. Others will shout,
"So what?"
There are compounds in everything in nature that isn't found directly printed on the Periodic Table of the Elements. Do we make them all drugs and therefore patentable and restricted? Even those things present on the Periodic Table are subject to toxicity, side-effects and overdose.
At last I checked, sterile water requires a prescription, but insulin (a potentially fatal drug given incorrectly or without supervision) does not, leaving me to wonder at the wisdom of those dictating our care options.
(By the way, I'm told that inhaled insulin was tried in the US and taken off the market when there wasn't enough interest in it. That method of delivery is being tried for other drugs at this time however.)
Sorry, but I do weary of all these control issues, and begin to feel a phrase coming on I truly wish was not bouncing around in my brain, but that I may not be able to restrain.....
Oh no, here it comes!...
.
"...gimme a break?"
.
lol-sorry.
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Permalink Reply by Joe on -
I have been pondering this question for many years, and I believe it is a very complicated one. Why, I’ve often asked, are there not more effective treatments being developed for dystonia? Why are we seemingly no closer to a cure now then when I first acquired this disorder? I have come to the conclusion that there are several vital factors in play here, and probably many more.
First, being a natural skeptic, I’ve never been one for conspiracy theories. Conspiracy theories, in my opinion, are an attempt to rationalize, make sense of, and give meaning to the seemingly random and improbable events and circumstances of our lives. We want to allay our fear as to how vulnerable we really are. It just seems impossible to believe that one lone nut with a WW II vintage Italian bolt action rifle could bring down a mighty figure like JFK. No, it had to be the work of a vast, highly secretive network of (fill in the blank…mafia hit men, CIA agents, right wing extremists, Castro operatives, etc). We would rather take the leap of faith that the hundreds, perhaps thousands of people who would have to be involved in such an endeavor could remain utterly silent for 45 years. It’s the same with Roswell, the 9/11 conspiracy, the Apollo Moon landings and all the rest.
I think the notion of a conspiracy by “big Pharma” to intentionally keep cures from patients is equally improbable. I’ve been hearing for years that the cure for cancer is hidden away in some secret vault, but that the medical profession (in collusion with the big pharmaceutical companies) is keeping the cure from the public in an effort to continue “treating” patients; to maintain a stable customer base and keep in business. This idea is ridiculous on its face, again, given the number of people (assuming at least a small minority of these people to be of good conscience) who would have to be involved and still remain quiet. Whoever discovers a bone fide cure for cancer (I’m not sure there will be one “cure”, just like dystonia) is likely to become a trillionaire overnite. Despite their maudlin commercials and glossy print ads, pharmaceutical companies are driven by profits, just like any other business. The money to be made upon the discovery of a cure for cancer would be just too astronomical to resist for any “suit” worth his/her salt.
I think that the real answer lies in something we’re perhaps too afraid to face: The fact that the problem is just exceedingly complicated. When I first acquired dystonia, I was amazed to discover how LITTLE science really knew about the brain! When I asked my neurologist how DBS works, he said very simply, “I have no idea…we just know it does.” As I’ve corresponded with folks actually doing the research on dystonia, I’ve heard the same refrain time and time again: we just don’t know enough yet. That is a fact I find unsettling, but I have no choice but to live with it…it is after all reality.
I do believe, however, that there is an endemic problem with the system, again stemming from a fundamental flaw in human nature…that of greed. I think it’s much easier and therefore much more cost-effective to develop treatments rather than do the long, protracted. And ultimately very expensive science necessary to find cures. While there are a few brave souls out there staring down microscopes at flat worms, working off meager grants from under funded agencies like the DMRF, the big money is being poured into researching, for example, the efficacy of botulinum toxin. I’m of the opinion that we have enough evidence that BTX works. The companies who market botulinum toxin know they have a “cash cow” on their hands and have no incentive to fund more ambitious research. The same goes for the manufacturers of DBS hardware. It’s, I believe the “modus operandi” of most of the major private research and medical manufacturing. It doesn’t take a conspiracy…it just takes greed. Remember, follow the money.
OK…that’s a “not so brief” outline of what I think is the problem? Now, anybody have any answers?
All the best,
Joe
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Permalink Reply by Thorns on -
What I want is a cure, not more medication's or surgeries the answer is in the brain and hopefully with more research in every area of the brain there will be a cure. I know what I would do first and that would be to go for a walk without holding my head in my hand, what a wonderful thing that would be. Thorns
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