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

Tags: a, cause, cure, disorder, dystonia, genetics, movement, neurology, normal, research

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Replies to This Discussion

Permalink Reply by Elaine on September 9, 2009 at 4:59pm: Cris, I liked your post.

You are right. Who decides what is normal. If we were all on a secluded island and didn't know any different, we'd all think we were "normal". Chasing balls. LOL

Elaine; ▶ Reply to This

Permalink Reply by healitnow on September 9, 2009 at 9:10am: persons with dystonia do not really want to try to be pain-free or healthy from any safe new methods unless from big pharma.

Big pharma will not make cure available since they lose too much money.
They have not had cure since polio over 50 years ago but they will treat with some form of drug for next 45 years.

People then choose to stay ill and in-pain. They will not venture to find methods or offer prizes for healing themselves.

Dystonia is chronic disease, immune system loss which causes neurological condition, related added disorders, poor body chemistry, loss of body cells function and brain cell function to body cells from disease and some experience pain.

Each person with these diseases and disorders must destroy them safely first, restore their immune system, normalize their body condition, heal their body cells and heal their brain cells connected to body cells to lessen pain and allow motor skill functions. So heal it now.

Offer prize to attract scientists and inventors to find non-drug solution.

Dystonia has spent $22 million in last 20 years but no person has any improvement yet.; ▶ Reply to This

Permalink Reply by Lene on September 10, 2009 at 12:35am: Hi healtrow, What is your plan of action for this restoration of our bodies. or if I am reading this wrong I stand corrected Lene; ▶ Reply to This

Permalink Reply by Elaine on September 9, 2009 at 4:56pm: WHAT I WANT is for ME (more than anyone else) to accept me.

I have learned in the past to cope with other conditions such as asthma or arthritis and to accept the limitations.
Since I'm still in the process of dx and have been dismissed by the Neuro...I don't want to call my movements "dystonia".
Though I know I have dystonic and myoclonic movements.

With that said, I think dystonia is much harder to deal with than asthma or arthritis. Maybe not always physically, but it's right out there for every body to see. And most people don't know about it.
That was one of the hardest things for me. Also that I have ZERO control over it.

I have come to realize that I am fortunate in that I have episodes, rather than constant movements like many do.
I have come to appreciate that the day has 24 hours in it. And I'm not going to let 1 hour ruin the other 23.

A cure would be nice and I do hope for that for everyone who is suffering.
But it's not likely in the near future. So I guess all I want right now is, for ME to accept me.

If I have other conditions which cause are causing my fatigue, which bring on my movements, I want very much to have treatment. I can accept my condition(s) if I can have some of my life back.

Elaine; ▶ Reply to This

Permalink Reply by karenperalta49 on September 28, 2009 at 3:39pm: I have chronic dystonia/dyskinesia of the left side and neck. Onset was in the winter of 1997-98 due to my being prescribed and taking risperidone for about six months. Never had any such problems before then, so it's not genetic or hereditary dystonia. It seems to be from the medication/neuroleptic. I am currently being treated with botox injections every three months, which help somewhat, and also I take a medication that relieves the spasming somewhat. But I want to get permanently off such medication and be cured, so that is what I want. I am thinking nowadays in terms of deep brain stimulation, as it sounds fairly safe, and/or stem cell treatment. I'm thinking of waiting until next year for stem cell treatment in the USA and delaying DBS, as the procedure has its risks, being major brain surgery. Also, onset of symptom alleviation can take several months for someone with my condition, so I'm thinking of waiting for stem cell treatment instead. If anyone has any other suggestions, or any good suggestions as to where I could go for either DBS or stem cell treatment SPECIFICALLY for dystonia and dyskinesia, please tell me about those resources and medical treatments. And thank you very much for any such help or guidance you can give me.; ▶ Reply to This

Permalink Reply by TJD on October 18, 2009 at 3:23am: I want to know for sure that what I have is dystonia. I want to believe that not every day will be pain related. I want to think that some day the ache will let up. I want to ride horse again. I want to be young in body like I am in mind.; ▶ Reply to This

Permalink Reply by asburyparkangel on October 18, 2009 at 10:36pm: I have spent thousands of hours counseling people, praying with them, studying, reading books by amazing alternative/natural MDs, master herbalists & found out so much. Doctors DO not want us to believe that there is a cure for Dystonia, cancer, HIV or autism.I'm frustratied that my love for people and spending time trying to help them is often ignored!

RESEARCH the internet and keep searching for a doctor that cares about you getting healed & PRAY HARD!!!

THERE ARE CURES ALREADY!

I'm a minister, musician/songwriter & artist. I believe in the God and His ability and design of our bodies to heal themselves. There is a government conspiracy to weaken this people with pesticides in foods, growth hormones & antibiotics to weaken us, etc. We must WAKE up & live purely. God will give us the wisdom & the ability to purify our lives, bodies & spirits, but it will take great discipline.

DO you truly want to be healed. Whatever you ask for will be yours. Just believe.; ▶ Reply to This

Permalink Reply by Rebekah on October 19, 2009 at 12:27pm: You mean, like, "There is a cure for everything. It just hasn't been discovered yet."?

I want them to treat me like I matter. I want them to stop shading the thing with doubts on sanity, when there is no legitimate question. I want them to make resources available and maintain patient dignity. AND THEN study the thing until they come up with something that really works.; ▶ Reply to This

Permalink Reply by Lizzy Holder on November 2, 2009 at 1:14pm: Hi,
I understand your frustration in trying to help everybody. You've been a name, that has been associated with dystonia for twenty years, that I know of.
About "normalcy," I haven't met what I would call a normal person in 54 years, in one way or another.
I feel a change coming and hopefully for the better.
Lizabeth; ▶ Reply to This

Permalink Reply by Stace on November 8, 2009 at 1:52pm: Hello.. Wow. I'm sure some days (for all of us) are filled with questions in regards to how to make life easier.
I have small breakthrough situations from time to time. For instance, I am scheduled for a colonoscopy.. which , at first, was scheduled to take place in a clinic.. Once the nurse realized I had Dystonia, she imedietly re scheduled me for this to take place in the hospital. Why? Jen answered that by telling me that we MOVE, More than "most patients, so we require a higher degree of care during procedures like this one. At first I was a little upset, i HATE being in the hospital for ANYTHING.. But the fact that The Rule Is... for Dystonia patients.. more care is given. They recognized Dystonia.. those are the rules, and thanks to Jen.. I got to see the good in the situation. Baby steps.. Take care all.. Stacia; ▶ Reply to This

Permalink Reply by Stace on November 8, 2009 at 3:07pm: Hi.. me, again... My List.. First, I'm a former Broadcaster..That should make an IN for me to write and have someone else or myself broadcast PSA,s on radio.. or TV.. I can however use today's technology to write and POST 60 second PSA's about Dystonia.. So.. my list,
EDUCATE Medical Personel
I want to (Just Once) walk into a public place And see a little coin jar for DMRF... Or for Financil and other resourses for low income Dystonia Sufferers.
I want to be able to live my life around something other than my Botoxx treatments, and other meds.
I want my smile back..
I want to KNOW that I Can get through an evening out (or at home with Loved ones)
I want to say "I'm well" and MEAN IT.
I want my tummy to not look like target practice from all the JG and peg tubes. Vanity.maybe but. I think not.. I'm 50.. not dead!
Last, I want to be Respected and understood.( A good day is just that.. I can't put that on my to do list); ▶ Reply to This

Permalink Reply by noelv on November 8, 2009 at 8:54pm: Stace,

On behalf of the group, I've started a new foundation for Dystonia, American Dystonia Society, which will be powered by fellow Dystonians. Our web site is not yet up but we have a rapidly growing group on Facebook. Being dystonia patients, we all share the same hopes and goals. Your skill set would be very valuable to us if you would like to join us in this worthwhile endeavor.

Change is coming and we are it.; ▶ Reply to This