Being A Friend & Caregiver To Someone With Muscular Dystrophy
Hey Steemit! My name is Tim and I am a caregiver for my friend Ryan that has Muscular Dystrophy and we are huge crypto enthusiasts! I made an intro post a few weeks ago that I'll link below in case you all want a little more backstory into my life (don't upvote you just might enjoy the post!) Anyways I wanted to make this post because since I started working with my friend Ryan I've noticed that a lot of people have a lot of misconceptions about what Muscular Dystrophy is and I was hoping to shine a little light on this very unfortunate disease that affects 1 in every 3,600 boys (it also effects females too it's just much more uncommon).
Ryan and I at the Las Vegas Pinball Hall of Fame a few days ago
(goofing around at a comic store)
(Ryan loves his ladies)
What is Duchenne's Muscular Dystrophy
Duchenne's Muscular Dystrophy is a disorder that is a result of a mutation in the gene that creates dystrophin located on the X chromosome. Dystrophin is an important component within muscle tissue that provides structural stability to the dystroglycan complex (DGC) of the cell membrane. Due to progressive deterioration of muscle, loss of movement occurs, eventually leading to paralysis. Intellectual impairment may or may not be present (in Ryan's case it is not present). The average life expectancy for individuals afflicted with DMD is around 25 (Ryan is 36!!!). Ryan's case of DMD is very advanced and he is almost fully paralyzed but he can still talk and has pretty good muscle function of his mouth. Mentally, Ryan is 100% there and is smarter than most people I know with an IQ of 141!
(Healthy cells on left, DMD effected cells on the right. Pic taken from Wiki page)
How I met Ryan
It was July of 2014. My girlfriend and I had just moved to Las Vegas Nevada so that I could continue my "career" as a professional poker player. That summer I was playing poker at the 2014 World Series of Poker when I ran into Ryan at the poker tables. He had a caregiver playing poker for him and I started up a conversation with Ryan and his caregiver at the time. After a few hours of playing poker with Ryan the caregiver asked me if I wanted a job working for Ryan and at the time I was pretty burnt out on poker so I said yes and it was one of the best decisions of my life!
(Ryan and I at the World Series of Poker)
Working with Ryan
Working with Ryan has been incredible. I have been working with Ryan for 2 years now and it's by far the best job I have had in my life. After the first 6 months of working with Ryan I was asked to move into the house and live with Ryan full time which I gladly accepted the invitation. Living here at "Casa de Cripple" (what Ryan likes to call it) has been a great experience. We have parties, go to sports games, watch movies, go out and gamble, have BBQ's, go to nice restaurants, go to strip clubs, and he even has craigslist "honeys" come and visit from time to time (and yes he tells me it works just fine; if you'd believe what he tells you, it works better than everyone else's :P). Although a lot of my job as a caregiver is basically just hanging out with Ryan and having fun, it also comes with a lot of responsibility. Keeping Ryan alive, safe, and healthy is a lot of work! We have a total of 8 employees that rotate shifts from 12-8am, 8am-4pm, and 4pm-12 and 2 of us live at the house with Ryan full time because he needs 24/7 supervision. There is a lot to be done day to day just to make sure Ryan stays alive and I plan on making some VLOGS for Steemit so that you all can get a close look into his daily life and care! A lot of working with Ryan is managing quality of life. Ryan is obviously unfortunate to have this disease and it will ultimately be his undoing, but that doesn't mean he needs to live his life any different than you or I. This is the most important thing for me is to make sure Ryan feels happy and living a good "normal" life. A lot of what we do is "against medical advice" but Ryan would be miserable if we took away most of the things he enjoys in life. For instance one of the things Ryan enjoys the most is eating food. He chews the food then spits it back into a cup, but Ryan is stubborn and will swallow his food sometimes and ends up choking. Since Ryan is on a ventilator and has a trach when he does choke it's easy for us to get it out but it's really not good for him and the doctors tell us not to let him eat. That being said we still let Ryan eat. We take Ryan to fancy restaurants and order some of best food from the best chefs in the world because it makes him happy and we are not going to take that away from him. We take Ryan to sporting events and go on vacations when the doctors want him to stay home. We do all of this because we want Ryan to experience life the way that it should be while he is still with us and I will make sure he lives a happy life as long as I'm around.
(from left to right) Myself, Ryan, and Simon enjoying a great dinner at Del Frisco's
Ryan's Mom, Brother, and Simon at his birthday dinner
Ryan is the next Sith Lord in the upcoming Star Wars movie haha
Ryan's birthday after party. He wanted chocolate cake... XD
Ryan, Joe, and I watching the Lakers vs 76ers at this years Summer League in Las Vegas
Picture from my intro post
Plans for the future
Ryan and I both love Steemit and we are on it all the time! As of a couple days ago we started recording videos of our everyday routines that I will eventually make into VLOG's and post up here on Steemit. Also Ryan, my gf, and I have a bunch of other really fun ideas that we are working on for Steemit as well! Hopefully this post and future posts will give you all a little insight into my life as a caregiver and Ryans life too.
(A percent of the proceeds from posts that include Ryan will go to CL honeys & fine dining for Ryan once Steemit hits the moon and we have all retired early lol)
(intro link) https://steemit.com/introduceyourself/@tim-johnston/hello-steemit-community
(MD explanation was partly taken from wiki) https://en.wikipedia.org/wiki/Muscular_dystrophy