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 kiwi beaver 1 on -
lene, i have had people ask me if i had a stroke or parkinsons. the thing is i have the tremors mild or so family and doctors tell me, sometimes it feels like i am in an earthquake LOL. but other times i am quite relaxed for a person with tremor.
The best thing is though i can now say no i haven't got parkinsons or had a stoke , cerebral palsy etc, but i do have dystonia with essential tremor.
for 38 yrs all i could say was no i was born with a tremor but don't know why sometimes i'm worse than other days. Then they say oh you must be because you are stressed or nervous. and i say those emotions do make it worse but it's not the cause of it.
i am lucky as it's not constant pain, but only hurts if writing a bit much or when my leg is restricted as it fights the dystonia.
my doctors over the years would check my movement in both legs and my right would do as it's told but my left tenses up so much it won't bend for the doc, and one doctor who was really nice about it, noticed i was fighting it, i try not to most of the time, but it's those times when you really want it to stop doing it's thing and i can't help fight it, but it just makes it worse.
It's a matter of letting it do it's thing and believing it'll ease up in a minute .
but that is so hard when people are watching.
I do laugh at myself alot and that helps so much. and my fav nickname at school was shakey jakey( my surname was jacobs)
I was extremely lucky in my school years that i only had a few taunts and i owe that to my brothers and sister who backed me up in a situation.
I was the oldest in our family and always we looked out for each other.
I had good teachers who tried very hard to help me write as i am capable most of the time.
and jesus has been the most strength in my life, if i did'nt have my faith in him i don't know where i'd be today. He gave me other paths to follow that suited me. and where i am today. still along way to go in the confidence area but i am challenging myself.
as i can walk i want to walk the milford track south island nz, it is about a 4day walk and is about 50km this is my next goal.
karen
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Permalink Reply by beka on -
Remember - we all can still do something, just not what we were once able to do before.
Jen - Do let us know how you are doing ? And how Leif is handling all.
beka
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Permalink Reply by Jen on -
Thanks for thinking of me Beka. I'm Ok. Having trouble with pain and peripheral neuropathy is getting worse...weird. my new g-tube is a little smaller than the last one so I'm having a lot of pain from leaking stomach acid but doc says it will get better soon. Dystonia is worse...looking into the possibility of mitochondrial disease. Leif does great...he is a good kid and he really crease aboiut me. I think his empathey is advanced for a three year old. He will be in preschool 3 days a week this Fall. He is looking forward to it and so are we.
I'm getting some work done... working on another paper and will be starting some more dissertation work soon.
I hope all is well with you too Beka.
Peace, Jen http://www.caringbridge.org/visit/jenelle
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Permalink Reply by Ellen S on -
Hi Jen, I've subscribed to your CaringBridge page, but hadn't seen anything lately. Glad you're hanging in there.
Yes, I've no doubt that Leif will be an extraordinary man.
Good luck with that paper!
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Permalink Reply by Thorns on -
I've was thinking about this the other day and I want something that I don't feel would be so hard to find that would be understanding from everyone I meet. Something so simple but so hard to find, if I tell someone about dystonia it would be nice just for them to say I understand and if they don't just ask for more information. Understanding from doctors, from friends, from family. Thorns
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Permalink Reply by catangel49ca on -
Dear Beka: A cure would be fantasmorcial...not in our life times.We are an orphan disease.Who cares type of thing. I was 45 when I had a moderate/severe stroke,after discharge, and no councilling, i was a mess, within 2 months the spasams in toes, foot and leg started. The Dr. at Royal Alec,said it was "just a phenomen from stroke" and walked away, that is big NO NO,I was going to therapy evryday,not much improvement in left leg. i cried and cried evry day, I wanted RELIEF my doctor and I went head to head on this. I wound up seeing Dr.Wayne Martin at the U of A. I have been on every medication, even those for Prkinson Disease no Releif. I take Botox injections,they give me some releif, but do not last. i take aa lot of seditives,if I am calm the leg stays calm, I am bipolar another pressie,I have become very self mutilating, I committed myself to psyc unit aat UofA for 30 days,Saw a Psychiatrist in city, for years, was seeing a mental health councillor in Westlock 2x a week.i need releif...the self mutilation comes in, not particulary suicidal, just releif. Valerie
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Permalink Reply by robert on -
Hi Val,
Apparently not uncommon, I found these references in Wiki:
"For some self-injurers this relief is primarily psychological whilst for others this feeling of relief comes from the beta endorphins released in the brain. Endorphins are endogenous opioids that are released in response to physical injury, act as natural painkillers, and induce pleasant feelings and would act to reduce tension and emotional distress".
"Many people who self-injure state that it allows them to "go away" or dissociate, separating the mind from feelings that are causing anguish. This may be achieved by tricking the mind into believing that the present suffering being felt is caused by the self-injury instead of the issues they were facing previously: the physical pain therefore acts as a distraction from the original emotional pain".
"About 1% of the population in the United States today practices self-injury"...
Robert
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Permalink Reply by beka on
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To tell you the truth, I am not sure if patients with any disease know truly what they want - with dystonia , in particular. Even with the immense awareness created recently, pateints are still unsatisfied with the efforts and the outcomes garnered. I find this extremely frustrating, because I don't know what to do anymore. I am at a loss recently about this. NO ONE IS SATISFIED. FOR GOSH SAKES, LIVE. We say we want relief , then become empowered and take charge of your health. Evaluate all your meds. Keep a dairy or a journal. Learn about your symptoms. Stop seeing and viewing your docs as "gods ". They are not. They should work with you. Demand answers, Ask questions...Read the Moving books if you need to hear someone else talking about dystonia. Realize your emotions. Don't run away from them.
And what we want ??
beka
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Permalink Reply by sidious on -
i know it may sound harsh,but i' have been taking drugs for 9 years.doctors are of no use,they tell me i have to take them for the rest of my life.it scares me.
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Permalink Reply by Browneyes27 on -
I am not share we ever well come up with a cure in my life time. seams they no more of the oeacns or outer spac then the brian. there are to many wires and nervs all put in one little space of its own. we do no good when we dont even take cue of it as well as we could, I now the mind is a very powerful thing and somethings we can handl others we can't. But we can never give up. you never now a cure may be right in front of our eyes.
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Permalink Reply by CrookedCris on -
I want to face life with 'all' my wits about me - on my terms; not in committee with this monkey on my back.
I've had to adopt a very Zen approach to living - most of the time I'm the present and eschew notions of "fair", "right" and "normal". They are all terms that, for me, insinuate that there is something about my little bubble that is unfair, wrong and abnormal. For me, that thought process is the door to the end; been there, done that.
I'm committed to a plausible treatment that doesn't make me feel like Jack Nicholson on a bender. I'd be thrilled with the happy accident of a cure to Dystonia. But what I want are more minutes in the day that I don't think about the bits in my world that keep me from attacking life as my dog attacks the Jolly Ball in the yard - with vigor, 100% commitment and passion. I can do that with Dystonia - but I'm going to have to get better at ignoring the fact I have it.
Great thread! I now must chase after the ball...
Cris
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