By Michael Ogg, as informed to Hallie Levine
I used to be identified with a number of sclerosis (MS) in 1996. My situation has left me a quadriplegic. I’m unable to maneuver any muscle groups 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 have the ability to dwell my life as I do in the mean time. It’s allowed me to dwell independently and to guide 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 turning into increasingly more troublesome to navigate my pc. 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 screen.
As my illness has advanced 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 straight on my iPad. As soon as once more, advances in expertise got here by 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 might 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 (similar 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 study in a short time. I now work pretty shortly on my iPad, and I exploit this expertise to speak with folks through e-mail. It is given me a a lot larger potential to work together with the world.
Sensible expertise. I’ve been utilizing it for the final 18 years, method 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 programs, and heating. Issues that enable me to take care of a cushty residing atmosphere. It offers me peace of thoughts, for instance, that I can lock my again door from my bed room.
I’ve tried completely 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 power 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 completely 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 finest.
My toilet monorail. I’m not joking. I’ve a ceiling carry in my bed room that whisks me to my toilet. 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 just a little extra independence, which I admire.
My collar microphone. Many individuals with MS require assistive expertise to assist them communicate. My diaphragm muscle groups are weak, which makes it onerous for me to talk up. It’s very onerous for folks to listen to and perceive me. I even have slurred speech, due to the harm MS has completed to completely different elements of my mind. Fortunately, I’ve a microphone that helps. It clips proper onto my T-shirt and amplifies the whole lot 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 attributable to harm of muscle groups 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. Because of this, I’ve a feeding pump that delivers formulation straight into my abdomen. Fortunately, it’s small and light-weight sufficient that it could go wherever 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 ingesting my morning espresso. There’s bought to be some danger in life!
Telemedicine. It’s troublesome for me to get to medical doctors’ places of work. Whereas I nonetheless choose in-person appointments as a lot as doable, telemedicine for routine issues — getting a query answered or doing a medicine test — has made my life so much simpler. It’s additionally been a great possibility after 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 the whole lot 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 best way to program something, who’ve mastered all this expertise with ease. 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 last years of her life, she realized the advantages of expertise reminiscent of having the ability to learn the newspaper on her iPad in several languages. I prefer to suppose that if she might study, anybody can.