people say folks with adhd struggle with "delayed rewards" aka long term goals and as such we tend to focus more on short term rewards. what they don't talk about is that at when we Do accomplish long term goals we don't actually feel anything proportionate to the amount of work we did to achieve it. In my head I suffered for a while and then money spontaneously appeared in my bank account.
I've not been able to stop crying for two hours, but it is tears of joy. I've waited so many years to see this news. 23 years I've waited. I cannot begin to describe what this means to the Huntington's community.
One day I'll write about what it's like to grow up knowing you might have a terminal, incurable illness, and not be allowed to test yourself because "it's such a serious decision" they don't want it hanging over you until you're an adult (as if it doesn't hang over you as you witness a parent die, and know you've got 50% chance of inheriting the same illness--as do your siblings). One day, I will talk about how, in the fear of traumatising children with the knowledge they might be incurably, terminally ill, they also took away their right to decide over their bodies to a degree that is traumatising. One day.
But today I am going to cry. Because it's over. Because no child will ever have to go through the same uncertainty, because at least they will know there is a treatment option available. A treatment option that one of my siblings might come to rely on. With all the shit things happening around us, my childhood hope and dream have been realised. That's got to count for something.
One of the most devastating diseases finally has a treatment that can slow its progression and transform lives, tearful doctors tell BBC.
This is incredible. Just absolutely incredible good news, and shocking considering how hard progressive neurological diseases are to treat at all.
It's such a terrible disease. This procedure is technically difficult and the surgery/infusion takes a long time but it is EFFECTIVE and reduced progression by 75% with surprisingly few side effects, and it's expected to be permanent.
They're looking at making it available very soon. I hope it is made affordable enough to treat everyone who has it.
Want to point out that typically going from Phase I/II (where this treatment is at) to Commercial (readily available to the public) is often years. This is a variable timeline, however there must be controls in place to ensure quality, purity, identity, efficacy, and safety of a drug product are maintained without net negative effects on a patient. It will be interesting to see if this gets an expedited approval in 2026.
Ebeneezer in 1742 wakes with a start as for some reason he has put out his guttering candle by slapping atop it ith the palm of his hand. His hand is burned and his nightgown and cap are spattered with hot wax.
when I used to drive I once walked to the front and bend down as if to start the crank. like. an a fuckin olde timey car. I never did it before or again but I will never forget how second nature it felt nor the cold breeze of 'what the fuck' that instantly followed
i once got home and tried to eat my dog's squeaky ball like an orange. thank god i didn't try to eat it like an apple, because after trying and failing to peel a small tennis ball for a couple seconds to get at the fruit, the rest of my brain kicked in.
i like to pretend i already died and asked god to send me back to earth so i can swim in lakes again and see mountains and get my heart broken and love my friends and cry so hard in the bathroom and go grocery shopping 1,000 more times. and that i promised i would never forget the miracle of being here
