By Michael Ogg, as advised 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 tissues under 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 know-how, I wouldn’t be capable to stay my life as I do in the meanwhile. It’s allowed me to stay independently and to steer 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 pissed off utilizing my laptop computer. With restricted use of 1 arm, it was changing 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 kind over the display screen.
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. A couple of years in the past, I started to search out it too tough to kind immediately 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 regulate 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 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 kind. 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 rapidly on my iPad, and I take advantage of this know-how to speak with individuals by way of electronic mail. It is given me a a lot better potential to work together with the world.
Good know-how. I’ve been utilizing it for the final 18 years, means earlier than individuals 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 snug 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 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 completely different good know-how choices in the marketplace now that individuals 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 elevate in my bed room that whisks me to my lavatory. My human private care aids elevate me into it, press a button, and I’m scooted straight into my bathe. I nonetheless need assistance washing myself, in fact, but it surely does give me a bit of extra independence, which I respect.
My collar microphone. Many individuals with MS require assistive know-how to assist them converse. My diaphragm muscle tissues are weak, which makes it laborious for me to talk up. It’s very laborious for individuals to listen to and perceive me. I even have slurred speech, because of the harm MS has executed to completely different elements of my mind. Fortunately, I’ve a microphone that helps. It clips proper onto my T-shirt and amplifies all the things 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 result of harm of muscle 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. Consequently, I’ve a feeding pump that delivers formulation immediately into my abdomen. Fortunately, it’s small and light-weight sufficient that it could possibly 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 permit myself the luxurious of ingesting my morning espresso. There’s received to be some threat in life!
Telemedicine. It’s tough for me to get to docs’ places of work. Whereas I nonetheless want 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 once I haven’t wished to enterprise out as a result 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 final rule of thumb is that all the things extra sophisticated than a brick will break in some unspecified time in the future. 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 individuals with MS who beforehand had no clue tips on how to program something, who’ve mastered all this know-how with ease. A very good 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 know-how equivalent to having the ability to learn the newspaper on her iPad in numerous languages. I wish to suppose that if she may be taught, anybody can.
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Michael Ogg, 68, a number of sclerosis advocate, Princeton Junction, NJ.