By Michael Ogg, as informed to Hallie Levine
I used to be recognized with a number of sclerosis (MS) in 1996. My situation has left me a quadriplegic. I’m unable to maneuver any muscular tissues beneath my neck. However I can nonetheless converse, and my thoughts is as sharp as a tack. There’s little doubt that if it weren’t for advances in expertise, I wouldn’t be capable to reside my life as I do for the time being. It’s allowed me to reside independently and to steer a full, wealthy, productive life.
Fortunately, expertise has at all times appeared to advance simply once I’ve wanted it most. Apple introduced the primary iPad in January 2010. I used to be within the hospital on the time and was more and more pissed off utilizing my laptop computer. With restricted use of 1 arm, it was changing into increasingly more troublesome to navigate my laptop. Then, a pal of mine confirmed up on the hospital with a model new iPad. It was a lot simpler for me to make use of since I simply wanted one finger to kind over the display.
As my illness has developed and progressed, so have the instruments I exploit. Right here’s a have a look at what makes my life with MS simpler.
Wheelchair joystick. A number of years in the past, I started to seek out it too troublesome to kind instantly on my iPad. As soon as once more, advances in expertise got here by means of to assist me. I found that there have been wheelchair joysticks that would do greater than assist me get round. I ended up with one which had Bluetooth embedded within the deal with. This allowed me to manage my iPad just by shifting the stick left and proper, up and down. I may as soon as once more navigate my display and kind.
Permobil Sip & Puff System. Sadly, as my a number of sclerosis progressed, I misplaced dexterity in my arms. I now spend most of my time in my mattress. I take a sip of air right into a wand (similar to sipping right into a straw), and that sends a sign by way of my Bluetooth to my iPad’s keyboard. I can then use the machine to kind. I discovered it difficult at first, however that’s the outstanding factor about us people: our brains can adapt and be taught in a short time. I now work pretty rapidly on my iPad, and I exploit this expertise to speak with folks by way of e-mail. It is given me a a lot higher means to work together with the world.
Good expertise. I’ve been utilizing it for the final 18 years, approach earlier than folks thought it was cool. I initially began with mild switches, however because the expertise superior, I branched out to my TV, music methods, and heating. Issues that permit me to keep up a snug residing surroundings. It provides me peace of thoughts, for instance, that I can lock my again door from my bed room.
I’ve tried totally different applied sciences through the years, and proper now I’ve settled on Z-Wave. I prefer it as a result of it simply requires one app on my iPad to make use of. It’s extra vitality environment friendly than Wi-Fi. It additionally operates on a decrease frequency, which signifies that it has an extended vary and works extra successfully all through the home. Fortunately, there are such a lot of totally different sensible expertise choices available on the market now that individuals with MS can mess around a bit to seek out the one which they like greatest.
My rest room monorail. I’m not joking. I’ve a ceiling carry in my bed room that whisks me to my rest room. My human private care aids carry me into it, press a button, and I’m scooted straight into my bathe. I nonetheless need assistance washing myself, in fact, nevertheless it does give me slightly extra independence, which I respect.
My collar microphone. Many individuals with MS require assistive expertise to assist them converse. My diaphragm muscular tissues are weak, which makes it exhausting for me to talk up. It’s very exhausting for folks to listen to and perceive me. I even have slurred speech, because of the injury MS has accomplished to totally different components of my mind. Fortunately, I’ve a microphone that helps. It clips proper onto my T-shirt and amplifies every part I say. It makes it a lot simpler for my private care assistants to listen to me, particularly once I’m in mattress, because it’s just some inches from my mouth.
My feeding pump. I’ve dysphagia, or bother swallowing. It’s pretty frequent in individuals who have superior MS attributable to injury of muscular tissues that management the flexibility to chew and swallow. If I eat or drink one thing, there’s at all times the chance that I’ll choke. Consequently, I’ve a feeding pump that delivers formulation instantly into my abdomen. Fortunately, it’s small and light-weight sufficient that it may well go wherever I do. It’s additionally very straightforward to make use of. Sadly, it has taken away the enjoyment of consuming for me, however I nonetheless do permit myself the luxurious of consuming my morning espresso. There’s received to be some danger in life!
Telemedicine. It’s troublesome for me to get to medical doctors’ places of work. Whereas I nonetheless desire in-person appointments as a lot as attainable, telemedicine for routine issues — getting a query answered or doing a drugs examine — has made my life rather a lot simpler. It’s additionally been a very good choice once I haven’t wished to enterprise out attributable to excessive charges of viruses like COVID-19 or flu in my space.
There are downsides to utilizing all this expertise, in fact. The overall rule of thumb is that every part extra difficult than a brick will break sooner or later. However the excellent news is that this expertise is accessible sufficient that anybody can use it, not simply self-described expertise geeks like me. I do know loads of folks with MS who beforehand had no clue the way to program something, who’ve mastered all this expertise with ease. An excellent instance of that’s my mother. She didn’t have MS, however she died 4 years in the past on the age of 93. Over the past years of her life, she discovered the advantages of expertise comparable to having the ability to learn the newspaper on her iPad in several languages. I wish to assume that if she may be taught, anybody can.