00:00When I was 14 years old, I sprained my ankle.
00:03I was playing capture the flag, and I jumped over a bench to escape being caught.
00:08I got caught in the bench, and I immediately had pain, bruising, and swelling.
00:13Urgent care had me wear crutches and a brace.
00:16I was never able to get off the crutches until much later on.
00:20We went to the orthopedic, and he tried to blame it on anxiety causing my symptoms.
00:26I started having trouble keeping my foot flat on the floor, and I was always on my tiptoes.
00:33My foot turned in.
00:35I started getting muscle spasms and twitches.
00:39Eventually, these symptoms spread to my left hand.
00:43At first, they diagnosed me with generalized dystonia.
00:47Dystonia is where your limbs contort and twist.
00:50We tried all the treatments, Botox, medication, therapies.
00:55Nothing helped.
00:56The only option left was brain surgery.
01:00I walked into brain surgery, but when I woke up, I couldn't speak.
01:05I couldn't talk.
01:06I couldn't walk.
01:07I spent the next 45 days in the hospital.
01:11I started having to use a wheelchair.
01:13I did speech, OT, and PT.
01:16It was hard being away from everything and everyone,
01:19but I found joy through art therapy, music therapy, and the doggy visits.
01:26Once I was out in the hospital, I started to be able to walk with the walker.
01:30Eventually, that was taken due to progression of my disease.
01:34We now knew the surgery had failed.
01:37I lost head control, trunk control, and leg strength.
01:41My arms became even weaker.
01:44Later on, my lungs started going down, and then my colon stopped functioning.
01:50That's when we realized something bigger was happening.
01:53I was diagnosed with respiratory failure.
01:56My lungs are okay, but the muscles telling them to breathe are not.
02:01The nerves in my colon have stopped.
02:04For me, what helps the most with the emotional side is doing art, building Legos, playing with
02:13my dogs, going out with friends, going to brunch.
02:18I also love to watch murder mystery shows and to play Mario Kart.
02:23As my disease progresses, we really don't know what the future will look like.
02:28Let's go to the hospital.
02:28Good to see you soon.
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