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 beka on -
Ellen - the inhaled insulin was taken off the US market because of absorption problems...plus had problems with patients who had diabetes and Lung disease... the two did not mix !
beka
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Permalink Reply by Ellen S on -
Veddy Intadestingggg.
Do you have any literature that talks about that? I have a blog post that mentions an article stating that it was from patients that essentially didn't like it. Would love to give the full story. :)
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Permalink Reply by beka on
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Agree with both of you about the lack of pain and lack of sensory tricks.
Cure, Cure, Cure...
I have some more thoughts...
-Illness is socially constructed. We are not sick until those around us agree that we are. The social construction of chronic illness and the sick role depend on a complex social structure
-Dystonia is now viewed in the Western world as a chronic, non-life-threatening illness YES or NO ????
-The redefinition of Dystonia would affect all levels of social life—international, national, local, and individual YES???People who have dystonia face the stigma of chronic illness. Stigma reflects a discredited and negative social identity YES???
-The chronic character of dystonia, with periods of crisis alternating with periods of stability, requires those with dystonia to continually reorganize their view of their life's expected course. Definitely YES ???
Most chronic illnesses carry a stigma. Sociologist Erving Goffman defined a stigma as “... a failing, a shortcoming, a handicap.” Every society embodies models or paradigms of how a healthy, normal, whole person appears, acts, feels, and thinks. An attribute that causes the person to deviate from normal is a stigma. Because the attribute violates the expectations of normal behavior or appearance, it is discrediting and negative. Deviant people are viewed as somehow responsible for their abnormality; thus, their moral character is also challenged. Moreover, stigmatized people share society's view of what is normal. They know they fail to match the model.
Chronic illness can be stigmatizing in a variety of ways—by visible disabilities and abnormalities such as an amputated limb, by limited independence or mobility (for example, the use of a wheelchair or a cane); by impairing a normal daily routine (for example, frequent hospitalizations or the inability to work full time or at all), or by the diagnosis itself and the impending complications it implies, if at all...
Even in the absence of visible symptoms, ARE people who have dystonia stigmatized once their diagnosis is known?
Reactions are rarely predictable, thus generating a great deal of anxiety in encounters with strangers or new acquaintances.
People cope with stigma in many ways. Some openly declare their diagnosis and challenge those around them to treat them differently. Some hide and retreat into a self-mposed isolation. Some may restrict their social life to people who are also only have dystonia .
So, is the stigma associated with dystonia affecting our efforts towards fighting for a CURE ? Is there a stigma with dystonia ??? Are companies affected by the stigma associated with dystonia ?? Profit loss if a cure did come ???
beka
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Permalink Reply by Joe on -
Hi Beka,
I think, to answer your question, it's not stigma, it's ignorance that's impeding progress. Most physicians, let alone most people have never even heard the term dystonia. I certainly hadn't until I was diagnosed. It's hard to stigmatize something of which you are unaware.
Companies aren't affected by stigma...they're affected by profits. Let's face it, dystonia is an "orphan disease" (regardless of its actual prevalence). As such, it receives little attention from the medical/scientific community. If there were, by some accident, to emerge a promising new thread of research as to the etiology of dystonia that eventually led to a potentially more effective treatment or even a cure, I have no doubt that those who serve to profit most from this discovery would jump on the band wagon and "champion" the cause of dystonia.
All we can do, IMHO, is continue fighting the good fight...keep doing what you and everyone else who has a personal stake in this are doing. All we have at our disposal is our own grassroots effort...dystonia is truly the "David" in the arena of competition for research dollars and projects.
Just my thoughts,
Joe
PS IMO, also, we're dealing with a fundamentally insane world...one that spends billions of dollars killing people in the name of "freedom" while simultaneously threatening to reduce the budgets of agencies that are truly seeking to improve the human condition...madness.
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Permalink Reply by lisa w on -
The % of the total population that have dystonia is very low. The drug companys won't spend billions on research because the return on investment just isn't there. Ex. Drs were told neurotin was an effective treatment for bipolar disorder. IT IS NOT. It is an antiepleptic drug. They were sued for billions because many bipolar patients commited suicide while being with this drug. The father of my 2 daughters being one of them. By telling Drs. it was effective they expanded their patient base.
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Permalink Reply by Janet 50 on -
Here's what I want
(it's my short list)
1 To be pain free--to not have to lie through my teeth when my Mom calls & asks how I feel. Lately I've felt like crap
2 Medication which has less side effects (mine are very annoying)
3 More independence--(driving again?)
4 Better quality of life---(not just to settle for less than what I can realistically have)
Number 4 is especially important to me right now. My little toe on my left foot is driving me CRAZY! It is twisted & the top of my toe is on the side of my foot. Two weeks ago I was at my foot doctor & she cut my nails (I can't)
and took off my calluses. Over the past couple of weeks this pain & ugly callus returned. It hurt so bad I could barely walk. I have tried padding in my shoes, padding the toe, wearing my fuzzy black house shoes, even tried changing the way I lace my tennis shoes....Nothing worked!
Back to see the doc yesterday, fuzzy slippers felt like sandpaper on that toe (yikes)
She took an xray & discussed the possibility of doing something to help relieve the contracture. She is going to discuss this with my neurologist before we do anything. Will it help---I hope
Will this come back? My guess is probably, but I really need to move NOW...I can't move without shoes (left leg shorter due to hip fracture).
Don't want to just exist---life is passing by cuz of a stupid foot, a stupid toe, and a stupid disease.
Thank you for allowing me to express myself
Janet
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Permalink Reply by beka on
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Janet -
What's on your LONG list ?? You bring up good points.
To reduce the calluses -
Corns and calluses are the most common conditions on the skin of the foot.
A corn, which is a thickening of the outer layer of skin, usually occurs on the tops of the toes.
Calluses, which are the same condition on the bottom of the feet, are caused by sheering pressures.
In severe cases of calluses on the bottom of the foot, an IPK can develop.
Corns and calluses are the foot's defense against friction and pressure. These conditions are usually painful but can respond to conservative care.
Treatment:
The first line of defense for this condition is a good supporting shoe that has a wide toe box and a low heel.
Over-the-counter items such as pads, lotions/creams, pumice stones and callus removers, foot baths, and scrub brushes are also helpful for these conditions. Regular use of a paraffin bath also helps reduce callus build-up.
Other useful treatments for corns and calluses are orthotics, a device to realign the mechanical disturbance of the foot. Although you can purchase orthotics over-the-counter, this device is usually made from a cast of the foot and is prescribed by a Podiatrist.
If corns and calluses persist then professional treatment by a podiatrist and/or an orthopedist who is trained in these areas is indicated. A severe form of callus is considered an IPK (Intractable Plantar Keratosis)and may need surgery.
Usually a doctor will obtain x-rays to ascertain whether or not there is an underlining bone spur. If the condition is painful enough and non-responsive to topical medications and debridement, then surgical correction is indicated.
Link : http://www.forfeetsake.com/faqs.htm
beka
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Permalink Reply by Jen on -
As a researcher studying basal ganglia function and dysfunction I must say that I have seen a major boom in research on dystonia in the last few years. Each year I attend the Society for Neuroscience annual conference for researchers studying neuroscience. The amount of abstracts for dystonia and basal ganglia research has gone up tremendously in the last few years. I first attended in 2004 and found a few abstracts and researchers to talk to about dystonia and research. This year there were so many abstracts that there would be no way for me to see or attend all the posters and talks about dystonia and basal ganglia function. How wonderful!! I think this is due to a significant increase in advocacy on the part of patients (ie: going to Washington D.C. and talking to senators and congressmen etc...) including myself. I have really enjoyed talking to other researchers and observing this tremendous increase and excitement over learning more about this area of the brain and dystonia. So from my personal perspective I would say a resounding NO... dystonia has not been forgotten by science. In fact it is just beginning to be really recognized and known as a disorder that will help us learn so much more about movement and how the brain functions for optimal motor control.
There are many wonderful, knowledgeable, and productive scientists out here including myself who are working to better understand basal ganglia function and dysfunction and are making progress that will lead to better treatments for dystonia, movement disorders and neurodegenerative conditions. One of the great things that has happened in the last few years that has spurred dystonia research is that patient advocacy has led to the funding of R01 and R21 grants by the National Institute of Neurological Disorders and Stroke specifically to study dystonia. These grants only recently became available to researchers in July of 2007. Before this there were no governmental grants available to study dystonia. All money for dystonia research came only from non-profit organizations who decided on what research to fund. This research previously was mainly funded through the Dystonia Medical Research Foundation and The Bachmann Strauss Dystonia Parkinsons Foundation These new grants from NIH that became available last year are the primary way that researchers get paid and are able to do research rather than through non-profits. When grants become available for certain conditions that are funded by NIH/NINDS then many more researchers will be able to do more research on dystonia because the money is finally available. Since this money has only been available for a year I think that in the next few years we will see a big increase in dystonia research.
You can read about the grants here:
http://grants.nih.gov/grants/guide/pa-files/PA-07-397.html
The other thing about these grants that is so helpful to us as patients is that they encourage translational research. Translational research is that which helps bridge the gap between discoveries by scientists to applying therapies or "cures" to patients. Thus, translational research will help a discovery of a therapy that perhaps helps a mouse with dystonia more quickly become available to patients with the disorder. More and more translational research is being funded through NIH so this is great news for patients who are waiting for better treatments and ultimately a cure.
I also have to stress that "cure" is not something that will come quickly for any diseases and disorders of the brain. Neuroscience/brain research is really in its genesis and it will
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Permalink Reply by faith on -
for me I want .....
to live forever and
to never grow old
Thank you for this nice web page
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Permalink Reply by Jen on
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The rest of my post got cut off so here is more:
I also have to stress that "cure" is not something that will come quickly for any diseases and disorders of the brain. Neuroscience/brain research is really in its genesis and will take many years to get to the point where "cures" will be found. The great news is that neuroscience research is on the cutting edge and is growing more quickly than any other field. Because many new discoveries are being found many new therapies are being applied and tried in patients with brain diseases and disorders. It just takes a lot of time and patience.
So what do I want in the meantime? Well like Beka said I want CARE...compassionate doctors...optimal treatment and better understanding of dystonia. More awareness and better treatments. I want the best health and life that I can have despite dystonia and my other chronic illnesses.
Cure will come but it will be many years from now and maybe not in my lifetime. In the meantime let’s do what we can to find better treatment and support.
Peace,
Jen
http://www.caringbridge.org/visit/jenelle
http://neuronswithdystonia.blogspot.com
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