Jade O'Connell "Baking with Tourette's and Family"
This is the same young lady that I discussed in my previous blog. This is the first video of hers I watched; my daughter showed this one to me.
This is Jade's lightheartedness and ability to laugh at herself. She even stated in another video that she's gained more confidence after posting to YouTube, Tik Tok, and the like.
**NO POLITICS**
That was tough to watch, one of my "SIL"s had mild turrets but was 'functional', but he liked beer and was bad when he drank.
Another cousin had MS and declined slowly, this film reminded me more of her, trying to be normal and the family allowing the mess,
but like the vid, lot's of family fun while she could still attempt it.
Sad.
On a video that she posted with her and her friend "Uncle Tics," she says that alcohol dulls her tics a lot. She also states that everyone has different triggers though and that what helps one person may make the tics worse for another.
I don't know if it's sad; I rather think that people like Jade O'Connell are trying to inform the world about Tourette's through social media. She [and others] are trying to get people to understand the disease, sometimes through humorous ways, like baking and applying makeup. The one that was extremely tough for me to watch was the one she posted where she had what she calls a "tic attack" and it was excruciating. By people that suffer from TS posting videos like this, it gives them the courage and strength to be in public. They're recognized because of the videos and rather than getting dirty looks, negativity, or isolated by those that don't understand, they're asked for photo ops or greeted with kindness. This was also stated in the Q&A with "Uncle Tics" video.
To me, saying it's sad is like saying that someone with bipolar disorder, hypersomnia, depression, autism, or any other uncontrollable neurological disease or disorder is sad. TS doesn't usually get worse like MS. A large portion of those that are diagnosed with TS as a child [which most are diagnosed between the ages of 8-18], have fewer tics in their 30s or 40s; or they may have the same / similar tics all along. However, tics usually don't get worse. Jade's TS is far worse than the one I know with the disease. It's by educating people that don't understand that makes people aware and it helps drive further studies and various treatments.
There is currently an experimental treatment in which neuro-surgeons place electrodes in the brain that will disrupt the parts that are causing the tics [similar to a pacemaker for a heart] and there's promising results in a few patients; however, insurances won't cover it and it costs more than my house to have done. If there's enough awareness and more proof that this treatment works, then insurances may be willing to at least cover a portion of something like this and I think that's why people like Jade and "Uncle Tics" post videos... to educate and create awareness where there's little understanding and I don't find that sad at all.
This was a lot like what I saw with my friend's son, but she does a bit more of the cursing thing (he didn't unless he was around his brother). I think that her family is amazing and that is what gives her the confidence to do an adventure like this.
I love that she is helping provide awareness to a disease that little is known about. And yes, her family is awesome. She's starting to develop "merch" for her fans, like t-shirts that say, "Excuse me," or "Not on the carpet!"
I watched that video and counted my blessings.