500 of Jason’s muscles are continuously flexed.
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I cannot see in my country.
Same.
Me neither.
When I was a sp.ed. teacher, I had a kiddo with this due to cerebral palsy. We used a giant therapy ball to roll over his body and the deep pressure evoked a relaxing response. He had intensive physical and occupational therapy as well. And through it all, he was a gem. An absolute joy to work with. I smile when I think about him to this day! What a personality! What a sense of humor!
Ah! Memory Lane…
Pretty much what happens in late-stage Parkinsons. Not a nice way to be. Could tell you stories that would break your heart if it wasn’t breaching confidentiality of my patients :-(
What cruel god would take responsibility for this?
You should look up harlequin ichthyosis sometime. Warning, it will horrify you. And yeah, what kind of god would do that to a baby?
I somehow came across the birth of such a baby on youtube. I was certain it was something from a horror film, it’s just so gruesome. Absolutely terrifying to think it is genuine, and that parents and their infants have had to go through that. At the time I was still vaguely hanging on to the idea of Jesus loving me, but this was a heavy blow to the idea that god loves anyone.
Jason is a great guy. I’m so glad to see the information about Dystonia is getting out.
I have early onset Generalized Dystonia, too, and I must answer the probably rhetorical question about what kind of god would take credit for Dystonia or allow it to happen.
As someone who has had to live with this very interesting movement disorder since childhood and whose memories are full of the craptastic benefits and challenges of having overactive muscles, I can say that the God who made the muscles and who I am so happy to know, did not make them to malfunction, even though He allows it to happen. His presence gives life and as you guys can attest, people don’t want to hang out with Him like they were made to do. LOL So cells die and genes get twisted (pun kinda intended) over time and that is that.
It won’t be that way forever.
Big picture– as someone who also believes in an evil force who is in rebellion against God — sometimes it is better to let things run their limited course. That way, everybody sees the crap the evil force’s regime brings and learns not to mess in it anymore forever.
There being a _reason_ for everything, I find it more rational to believe in the galaxy’s greatest conspiracy and a timeless storyline than to believe that with all the lovely things around us (including my super awesome wheelchair, cool people like Jason & Jenn, and the very existence of furry pets) there is no goodness outside of personal effort and group think, because all that dies when we do.
Anyway, Thanks you guys, for taking a minute to watch the video. Thanks for posting it. Thanks for telling somebody else about Dystonia.
I really have respect for your struggle. As I said, I was a sp.ed. teacher and have seen firsthand what genetic disorders do to children. That being said, I’m sure your faith gives you comfort, and I’m glad it does. But there is no way that original sin can cover genetic disorders. For one thing, they are random (even if genetically inherited- and genetics is quite complicated, especially inheritance and penetrance patterns.) Nope. No omni-benevolent god could allow such a thing. Especially since we can increasingly show “free will” to be an illusion a la neuroscience.
Thanks, LRA. It is a struggle, but it is worth it.
I have a question about your explanation:
- Did the perfect God created this “evil force” by error?
- Did the benevolent God created this “evil force” willingly, causing death and suffering for billions of people over centuries?
- Or maybe the omnipotent God has his limits when He “fights” against the “evil force”?
To be fair the problem of evil’s origin has not been completely answered by theologists for centuries, so i don’t expect you to solve it, only to think about assuming the existence of a powerfull evil entity.
Francesc, I love your questions, actually.
- Evil force ‘created’?
God created the creature, pretty, brilliant and sturdy. The creature, as free as the rest of us preferred himself to everything else and made it known. Thought he was better, because, he actually was the best of all the things that had been created so far and he had position and power. He figured he could do a little more around there, even at the same level as God. He didn’t think it was too hard to be God.
Got rebuffed. Got mad about it and just kept pushing it and pushing it until nobody was happy and there was a full out war. The creature and everybody that was on his side got kicked out of Heaven.
-Does God have limits in the fight against evil?
That’s an interesting question, because we all tend to look at things is through our own paradigm. Even the Bible says that ‘spiritual things are spiritually discerned’, which just means that sometimes you have to be open to seeing something to really see it.
That being said, I would answer the question “yes and no”.
“No”, because no outside force can limit God who really is all powerful. And “yes”, because God rules over Himself. If it wouldn’t be such a mismatched thing, we could probably compare it to willpower. We own the cookie, the cookie doesn’t own us. The cookie isn’t [necessarily] good for us or for our children, so we don’t eat the cookie or we don’t feed the cookie to our children.
On the other hand, we may notice that our children crave cookies because all their friends eat cookies, the cookie smells sweet and yummy and… well… it’s a cookie. We still know the cookie is unhealthy, but in order to prevent resentment and avoid tyranny, we may educate our kid on the health factors involved, even design consequences as a further deterrent, and let him make his own choices.
Our kid can decide to follow the good way or waste himself on the bad way.
God’s not a meanie. He’s way above our philosophical systems. In the Biblical paradigm, He doesn’t stand around and dictate minutiae. One of my favorite accounts is when Joshua (Joshua 5:13) was at Jerico and saw the captain of the Lord’s army. Joshua said, are you on our side or our enemy’s side. The creature told him he wasn’t on either side, but on God’s side.
Solomon noted that the sun shines on the good and the bad and it rains on the good and the bad. This planet has been in rebellion for a long time. Yes, our genes are messed up. We did that. Adam & Eve did that. This is why we die, because we gobble up sin and it screws us.
Would you live forever on a planet like this? There’s a mercy for you. LOL
So if you ask me if He is ‘limited’ I say no. But He isn’t going to force me into anything either. It’s like pestering someone into checking your page on FB. They aren’t doing it because they want to and they don’t like you forcing them. That’s not love.
LOL Infinite dialogue is the fun of the big issues. For a while anyway. Everything for us it stuck on rhythms.
I have Cerebral Palsy, and can attest that when muscles “lock” — even for a short period of time — it is very painful.
@LRA — My personal favorite is being “burritoed”, or rolled up tightly in a blanket. It’s physically and emotionally calming for me.
Kudos to Jason for making a life for himself despite his dystonia.
:D *LIKE*
It’s interesting how people often have misperceptions about CP. They often assume that a person with CP must have some form of mental impairment involving intelligence– but people like the comedian Josh Blue help dispel that myth.
Hey, just because one part of the brain is damaged or miswired, doesn’t mean the rest of it is! (Though it really does depend on the severity of the damage.)
What galls me, though, is this pervasive assumption that all disabled people are asexual. LOL It’s funny to watch people’s faces when I dispel THAT one!
To be sure! I did an internship in a high school developmental class, and the sexual rights of the individuals in the class were taken as seriously as any other rights!
woo hoo! :D
This. A million times over.
I’ve a problem in my bones, not my naughty bits :p
Haha! Exactly!
I had a very, very handsome friend in college who was paralyzed from the waist down and I worked up the nerve one day to ask him if “it” still worked– and he said it was a reflex and yes, it worked fine. We never slept together (not for reasons other than we weren’t boyfriend and girlfriend), but I sure thought about it!
Yes, he was quite handsome indeed!
*drool*
That’s… an incredibly useful thing to know ;)
I just wish people would stop being shocked by the fact that yes, I do indeed have a libido >_<
Miss Siberia is in possession of a libido? I’m shocked, shocked I tell you! :)
We actually had half a day of lectures and a two-hour film at university dedicated to hammering home the message that differently able people like boom-boom too (I’m doing a nursing degree as most of you know). Quite a lot of it was interviews with paraplegics; was hilarious watching students’ reactions to people injecting their penises with drugs to get erect. But still, I can’t think of a better way of getting it into students’ heads that people with long-term and/or chronic health needs or physical impairments are human too than to have a man in a wheelchair tell just the *funniest* stories about sex :-)
I’ve always wondered about paraplegics. What of girls? Would they feel anything?
That probably depends on the level and severity of the spinal cord injury. (cervical, thoracic, or lumbar.)
That god fellow sure is clever! I’d never have thought of creating a gene that could do this to people.
I have dystonia in my right hand. It only strikes when I attempt to write with a pen/pencil/etc. and when I’m eating with fork or spoon. In 2003 it got so bad I finally had to teach myself to write with my left hand. I can still do many things with my right hand, just not writing, and there is the small chance it could worsen. I just hope it will never get worse. So far, so good.
It’s NOTHING compared to what this poor fellow has and many, many others. I can only fathon a teeny, tiny portion of the frustration they must experience constantly.
I have worked in research in Movement Disorders for years. The number one use of Botox is not for cosmetic purposes – it’s to treat dystonia. The person with “writers cramp” can be treated quite effectively using botulinum. If you haven’t already see a Movement Disorders specialist (a sub-specialty of Neurology) consider it, they may be able to help. We have a clinic once a month that combines PT, OT and our neurologists in helping kids with CP using botulinum.
Cannabis also helps with spasticity.
/dave’s… not HERE, man…
I believe that Hypnosis treatment – programming the mind should work to improve the situation because the subconscious mind is like a manual guide for our body and especially in Jason’s case , his brain (subconscious) still remember the normal healthy way of functioning from his early childhood. The brain doesn’t know if situation is real or in his imagination /dreams that’s why when he is a sleep his condition is better because when we sleep the subconscious mind is in control and it can also get suggestions-commands of how to function the body properly.
This, right here, is one of the dumbest things I’ve ever heard.
Disabilities don’t WORK THAT WAY.
Have you ever tried it or even educated yourself on the power of Hypnosis before you dismiss the idea? Isn’t he in a situation that should put the ego away and try anything that can’t hurt but might help.
Your attitude is definitely is not on the right path to healing.
You obviously have NO EXPERIENCE with movement disorders.
Jog on, alt-med concern troll.
Oh, good gravy. Please take your nonsense woo and go visit HuffPo or some website run by a “soul coach” or some such other woo-peddler. That is, unless you have something in the way of evidence of your claims. You know, like scientific studies that have been vetted by reputable scientists.
Hypnosis is a science and part of the most recent researches of the brain running in the best universities around the world including Harvard in Boston. Many neurologist and brain researches already know that by Hypnosis you can change your physical body.
Obviously you are not educated on the subject, so you better learn more about Neuro- feedback.
This is the kind of shit we have to put up with every goddamn day.
Yup. Every goddamn day.
Yes, because I can’t POSSIBLY be educated about my condition, no, some woo-head knows better and has some magickal “cure”. Drink this tea. Eat this herb. Try this exotic mold spore (no thx, I’m allergic). Get hypnotised. Blah blah blah.
I’ll stick with the tried and true, plzkthx. Which reminds me, it’s about time to sit back and toke up.
Leah… Explain to me exactly how hypnosis can prevent demyelinisation of nerve axons and promote regrowth of myelin sheaths? Because, you know, it would be sweet if we could take everybody with Parkinsons and related conditions and get their nodes of Ranvier working again so that ion and neurotransmitter exchange can take place properly in their axons and dendrites and they can all have, you know, working limbs and stuff. Can you give me some contact details of people who’ve had severe, chronic, physical impairments like muscular dystrophy treated by hypnosis please? I’m fascinated.
/sarcasm.
I knew a guy who used hypnosis to grow back an arm that he lost in a freak shaving accident …