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 mass beneath my neck. However I can nonetheless converse, 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 to stay my life as I do for the time being. It’s allowed me to stay 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 tough to navigate my pc. Then, a buddy 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 sort over the display.
As my illness has developed and progressed, so have the instruments I take advantage of. 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 tough to sort straight 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 might as soon as once more navigate my display and sort.
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 sort. I discovered it sophisticated 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 shortly on my iPad, and I take advantage of this expertise to speak with individuals by way of e mail. It is given me a a lot higher skill to work together with the world.
Good 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 techniques, and heating. Issues that enable me to keep up a cushty dwelling surroundings. It provides 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 vitality environment friendly than Wi-Fi. It additionally operates on a decrease frequency, which implies that it has an extended vary and works extra successfully all through the home. Fortunately, there are such a lot of completely different good expertise choices in the marketplace now that folks 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 raise in my bed room that whisks me to my rest room. My human private care aids raise 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 a bit of extra independence, which I recognize.
My collar microphone. Many individuals with MS require assistive expertise to assist them converse. My diaphragm muscle mass are weak, which makes it onerous for me to talk up. It’s very onerous for individuals to listen to and perceive me. I even have slurred speech, due to the harm MS has finished to completely 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 after 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 resulting from harm of muscle mass that management the power to chew and swallow. If I eat or drink one thing, there’s at all times the danger that I’ll choke. In consequence, I’ve a feeding pump that delivers formulation straight into my abdomen. Fortunately, it’s small and light-weight sufficient that it may go anyplace 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 enable myself the luxurious of consuming my morning espresso. There’s obtained to be some threat in life!
Telemedicine. It’s tough for me to get to medical doctors’ places of work. Whereas I nonetheless choose in-person appointments as a lot as attainable, telemedicine for routine issues — getting a query answered or doing a medicine examine — has made my life rather a lot simpler. It’s additionally been possibility 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, in fact. The final rule of thumb is that every part extra sophisticated 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 the best way to program something, who’ve mastered all this expertise with ease. A superb 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 equivalent to with the ability to learn the newspaper on her iPad in several languages. I prefer to assume that if she might be taught, anybody can.
