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 question that if it weren’t for advances in know-how, 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, know-how has all the time 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 annoyed utilizing my laptop computer. With restricted use of 1 arm, it was turning 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.
As my illness has developed 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. Just a few 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 know-how got here by to assist me. I found that there have been wheelchair joysticks that might 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 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 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 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 take advantage of this know-how to speak with folks through e mail. It is given me a a lot better capability to work together with the world.
Good know-how. I’ve been utilizing it for the final 18 years, approach earlier than folks thought it was cool. I initially began with gentle switches, however because the know-how superior, I branched out to my TV, music methods, and heating. Issues that permit me to keep up a cushty dwelling atmosphere. 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 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 totally different good know-how choices available on the market now that individuals with MS can mess around a bit to search out the one which they like finest.
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, however it does give me a bit extra independence, which I admire.
My collar microphone. Many individuals with MS require assistive know-how to assist them converse. My diaphragm muscular tissues are weak, which makes it arduous for me to talk up. It’s very arduous for folks to listen to and perceive me. I even have slurred speech, because of the injury MS has executed to totally different elements of my mind. Fortunately, I’ve a microphone that helps. It clips proper onto my T-shirt and amplifies all the pieces 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 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 as a consequence of injury of muscular tissues that management the flexibility to chew and swallow. If I eat or drink one thing, there’s all the time 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 will 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 permit myself the posh of ingesting my morning espresso. There’s acquired to be some threat in life!
Telemedicine. It’s tough for me to get to medical doctors’ places of work. Whereas I nonetheless favor in-person appointments as a lot as doable, telemedicine for routine issues — getting a query answered or doing a drugs verify — has made my life rather a lot simpler. It’s additionally been a superb choice once I haven’t needed to enterprise out as a consequence of excessive charges of viruses like COVID-19 or flu in my space.
There are downsides to utilizing all this know-how, in fact. The overall rule of thumb is that all the pieces extra difficult than a brick will break sooner or later. However the excellent news is that this know-how is accessible sufficient that anybody can use it, not simply self-described know-how geeks like me. I do know loads of folks with MS who beforehand had no clue easy methods to program something, who’ve mastered all this know-how with ease. A great 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 know-how akin to having the ability to learn the newspaper on her iPad in several languages. I wish to suppose that if she may be taught, anybody can.
