By Michael Ogg, as instructed 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 muscle mass under my neck. However I can nonetheless communicate, and my thoughts is as sharp as a tack. There’s little question that if it weren’t for advances in expertise, I wouldn’t be capable of dwell my life as I do in the meanwhile. It’s allowed me to dwell independently and to steer a full, wealthy, productive life.
Fortunately, expertise has at all times appeared to advance simply after 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 annoyed utilizing my laptop computer. With restricted use of 1 arm, it was changing into an increasing number of tough to navigate my laptop. Then, a good friend 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 screen.
As my illness has advanced and progressed, so have the instruments I take advantage of. Right here’s a take a look at what makes my life with MS simpler.
Wheelchair joystick. A couple of years in the past, I started to search out it too tough to kind straight on my iPad. As soon as once more, advances in expertise got here via 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 transferring the stick left and proper, up and down. I may as soon as once more navigate my display screen 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 (identical to sipping right into a straw), and that sends a sign through my Bluetooth to my iPad’s keyboard. I can then use the gadget to kind. I discovered it difficult at first, however that’s the exceptional 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 take advantage of this expertise to speak with individuals through e-mail. It is given me a a lot better capability to work together with the world.
Sensible expertise. I’ve been utilizing it for the final 18 years, manner earlier than individuals 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 enable me to keep up a cushty dwelling setting. 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 over time, 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 good expertise choices in the marketplace now that folks with MS can mess around a bit to search out the one which they like greatest.
My lavatory monorail. I’m not joking. I’ve a ceiling carry in my bed room that whisks me to my lavatory. 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, after all, nevertheless it does give me a little bit extra independence, which I admire.
My collar microphone. Many individuals with MS require assistive expertise to assist them communicate. My diaphragm muscle mass are weak, which makes it arduous for me to talk up. It’s very arduous for individuals to listen to and perceive me. I even have slurred speech, due to the harm MS has performed to totally different elements of my mind. Fortunately, I’ve a microphone that helps. It clips proper onto my T-shirt and amplifies every thing I say. It makes it a lot simpler for my private care assistants to listen to me, particularly after I’m in mattress, because it’s only a few inches from my mouth.
My feeding pump. I’ve dysphagia, or bother swallowing. It’s pretty frequent in individuals who have superior MS resulting from harm of muscle mass that management the flexibility to chew and swallow. If I eat or drink one thing, there’s at all times the danger that I’ll choke. Consequently, I’ve a feeding pump that delivers method straight into my abdomen. Fortunately, it’s small and light-weight sufficient that it could possibly go anyplace I do. It’s additionally very simple to make use of. Sadly, it has taken away the enjoyment of consuming for me, however I nonetheless do enable myself the posh of consuming my morning espresso. There’s received to be some danger in life!
Telemedicine. It’s tough for me to get to docs’ places of work. Whereas I nonetheless desire in-person appointments as a lot as doable, telemedicine for routine issues — getting a query answered or doing a drugs examine — has made my life quite a bit simpler. It’s additionally been choice after I haven’t wished to enterprise out resulting from excessive charges of viruses like COVID-19 or flu in my space.
There are downsides to utilizing all this expertise, after all. The final rule of thumb is that every thing extra difficult than a brick will break in some unspecified time in the future. 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 individuals with MS who beforehand had no clue learn how 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 realized the advantages of expertise reminiscent of having the ability to learn the newspaper on her iPad in numerous languages. I prefer to suppose that if she may be taught, anybody can.
