Technology and multiple sclerosis
Michael Ogg, as told to Hallie Levine
In 1996, I was diagnosed with multiple sclerosis (MS). Due to my condition, I have quadruple disease. I can’t move a muscle under my neck. But I can still talk and my mind is as sharp as a blow. There is no doubt that I would not be able to live my life the way I do now without the advancement of technology. This has allowed me to live independently and live a full, rich, productive life.
Fortunately, technology always seemed to advance just when I needed it most. Apple announced the first iPad in January 2010. I was in the hospital at the time and increasingly frustrated with using my laptop. Having limited use of one arm made it increasingly difficult to navigate my computer. Then a friend of mine showed up at the hospital with a brand new iPad. It was much easier to use as you only had to type on the screen with one finger.
As my disease developed and progressed, so did the tools I used. Here’s a look at what makes my life with MS easier.
Wheelchair joystick. A few years ago, I started to find it too difficult to type directly on my iPad. The advancement of technology came to my aid again. I discovered that there are wheelchair joysticks that can do more than just help you get around. I ended up with one that had Bluetooth built into the handle. This allowed me to control my iPad by moving the stick left and right, up and down. I was able to navigate the screen and type again.
Permobil Sip & Puff system. Unfortunately, as my multiple sclerosis progressed, I lost the dexterity of my hands. Now I spend most of my time in my bed. I take a sip of air into a wand (just like a straw) and it sends a signal via Bluetooth to the iPad keyboard. Then I can use the device to type. I found it complicated at first, but that’s the remarkable thing about us humans: our brains can adapt and learn very quickly. I now work fairly quickly on my iPad and use this technology to communicate with people via email. It gave me a much greater ability to connect with the world.
Smart technology. I’ve been using it for the last 18 years, long before people thought it was good. I originally started with light switches, but as technology evolved I branched out into my TV, music systems and heating. Things that allow me to maintain a comfortable living environment. For example, it gives me peace of mind that I can lock my back door from my bedroom.
I have tried various technologies over the years and now I have decided on Z-Wave. I like it because I only need one app on my iPad to use it. More energy efficient than Wi-Fi. It also operates at a lower frequency, which means it has a longer range and works more efficiently throughout the house. Fortunately, there are so many different smart tech options on the market today that people with MS can play around a bit to find what works best for them.
My bathroom is monorail. I’m not kidding. There is a ceiling lift in my bedroom that takes me to my bathroom. My human personal care aids lift me in, press a button, and I’m straight into the shower. Of course, I still need help with the laundry, but it gives me a little more independence, which I appreciate.
My collar microphone. Many people with MS need assistive technology to speak. My diaphragm muscles are weak, which makes it difficult to speak. It is very difficult for people to hear and understand me. I also have slurred speech, thanks to the damage MS has done to different parts of my brain. Luckily I have a microphone to help. He immediately pins it to my shirt and reinforces everything I say. It’s much easier for my assistants to hear, especially when I’m in bed, since it’s only a few inches from my mouth.
My feeding pump. I have dysphagia or difficulty swallowing. It is quite common in people with advanced MS due to damage to the muscles that control chewing and swallowing. If I eat or drink anything, there is always the risk of choking. As a result, I have a feeding pump that delivers formula directly into my stomach. Fortunately, it’s small and light enough to fit anywhere. It is also very easy to use. Unfortunately, it has taken away the joy of eating, but I still allow myself the luxury of having my morning coffee. There has to be some risk in life!
Telemedicine. It’s hard for me to get to doctor’s offices. While I still prefer face-to-face appointments as much as possible, telemedicine for routine matters—answering a question or completing a medication check—has made my life much easier. It was also a good choice when I didn’t want to go hiking because of the high rate of viruses in my area, such as COVID-19 or the flu.
Of course, this whole technology has its downsides. The general rule of thumb is that anything more complicated than a brick will break at some point. But the good news is that this technology is accessible enough for anyone to use, not just tech geeks like me. I know tons of people with MS who had no idea how to program anything before and who have mastered this technology with ease. My mother is a good example of this. He did not suffer from MS, but he died 4 years ago at the age of 93. In the last years of his life, he learned the benefits of technology, such as being able to read newspapers on his iPad in different languages. I like to think that if he could learn, anyone could.
Source: https://www.webmd.com/multiple-sclerosis/features/rrms-tech?src=RSS_PUBLIC
