Tuesday, September 29, 2015

Apple Listened

According to Financial Times, Apple is the largest company in the world. They’re not some nebulous conglomerate like Berkshire Hathaway, the fourth largest company. Everyone knows what Apple makes, even those who don't use their products. Given Apple's size, when they release a product that provides functions A, B, and C, and you want a function D, it would seem unlikely you could get your idea implemented. Hold that thought.

As I wrote about in a previous post, I purchased an Apple Watch so I could, among other things, call for emergency help using voice only, if I found myself in a position where I couldn’t reach my iPhone. I was disappointed when I conducted a test 911 call, and the Apple Watch informed me that this function was only supported by the iPhone.

I contacted Apple, and they helped me come up with a workaround so that I could call 911 by pushing a couple of buttons on my watch. This was better than nothing, but I still wanted true hands-free, 911 calling. Already, I have limited use of my hands because of advanced multiple sclerosis, and I don’t want to rely on them in an emergency. The person I spoke to at Apple, a senior advisor named Melanie, said that the Apple software engineers liked my idea of providing hands-free 911 calls on the Apple Watch. She asked me to fill out a customer feedback form to initiate that software upgrade. I did as asked, and I waited for the next software revision. Would I be heard?

Last week, I updated my Apple Watch software to OS 2. Afterward, I called the local police nonemergency number and set up a test call to the 911 dispatcher. I said, “Hey Siri, call 911.”

A few seconds later…

“This is 911. What is the address of your emergency?”

“This is Mitchell Sturgeon making my test call.”

“I can hear you loud and clear, Mr. Sturgeon. Have a nice day.”

“Thanks. You have a nice day as well.”

Not only did the 911 dispatcher hear me loud and clear, but so did the largest company in the world, and I am safer today because of it. Thanks, Apple.

Monday, September 28, 2015

Big, Big News in Treatment of My Type of MS: Ocrelizumab

Genentech’s Ocrelizumab First Investigational Medicine to Show Efficacy in People with Primary Progressive Multiple Sclerosis in Large Phase III Study.

Click here to read

Tuesday, September 22, 2015

It Feels Good

I’ve written here before about how good it feels when somebody tells me that my blog has helped, that I’ve made a difference. Recently, I was able to help out in a different way.

My friend Margo’s knees are shot. They have been for a long time. She gets around with crutches while awaiting knee replacement surgery on both sides. Now her arms and hands are taking a beating from the crutches (notice her right hand in the photo to the right). She needs a power wheelchair for a couple of weeks before surgery, and then for a few months after. Her insurance company agreed to pay the rental costs. But Margo became frustrated with her attempts to find a rental chair and called upon me for help. Smart girl.

I tapped into all of my resources and came up empty. I have a backup, power chair of my own, other than my iBot. I told Margo that if we couldn’t find a rental chair for her that she could use mine. It might become tricky, however, if I need to use the chair or if the chair needs repairs. Late last week, I gave up on the rental option and determined that the only way for Margo to get a chair was to use mine, so Kim and I brought it over to her. She lives only a couple miles away, in a downtown area, in a wheelchair accessible apartment. Smart girl again.

I showed Margo how to operate the chair. That took about two minutes. She drove off into the sunset (so to speak), and we waved goodbye. The next day I emailed her to ask how it was going, and this was her response:

I just got back from my first roll around the neighborhood and it was MARVELOUS!  I window shopped and just looked at things I haven't been able to notice ever since I moved here.  And I didn't have to ice the knees when I got home!  I am so happy!   Thank you so much!

Ah, the joys of mobility!

On Monday, things got even better. I received a call from one of my contacts, and they have a rental chair available to Margo. Now she can take advantage of that option, and we’ll both have my chair as an emergency backup.

Some days I feel like such a burden, especially to my family. So it’s particularly rewarding when I’m able to use my experience with mobility issues to help someone out. I can’t wait to see Margo walking with her new knees.

Tuesday, September 15, 2015

Working Title and Cover Layout for My Book

I teased you a few of months ago when I wrote that I had a working title and cover idea for my book. I actually have four title ideas, which are slight variations on the theme pictured to the right. The only differences are the wording and the punctuation at the very top. I am soliciting your feedback on whether you like the title and cover concept at all, and if so, which of the four options you prefer. But first, for your reading pleasure, the updated synopsis and a short excerpt:


Paralysis can strike without warning – one moment you’re a dynamic and independent person and the next, a quadriplegic. That’s what happened to my late mother when she crushed her cervical spinal cord at the age of 35. But sometimes paralysis chips away at your movements, a tiny bit every day, until you become locked inside the useless shell of a body. That’s what has been happening to me since an aggressive form of MS began to ravage my cervical spinal cord. Although we followed different paths, we ended up at a similar place.

In a straightforward, irreverent, and sometimes inspirational manner, I tell the story of a mother and son’s mutual suffering and shared resilience. I revisit a childhood growing up with my extraordinary mother then take the reader on a journey through more than a decade of my adult life spent battling primary progressive MS.

My mother prepared me for challenges we could never have imagined I would face. And through the writing process I grew closer to her by finding new meaning in the legacy she left behind.

Excerpt from Chapter 1 – The Birch Trees

Parents raised their children differently in 1969. At the beginning of the summer, Mom told me, “You can go anywhere on the street until suppertime.” It was a big street for a five-year-old. 

One day, I grabbed a hatchet from the garage, went to the far side of the field behind our house, and chopped down a medium-sized white birch. It dropped into the field. I placed the hatchet back in the garage and burst into the house, more than a little pleased with myself. Mom had already seen my handiwork from the kitchen window.

With arms folded across her chest, but an amused look on her face, she said, “Oh, Mitchy, you can’t do that. It’s not our property.” This detail concerned her more than my having brandished a sharp instrument and felled a tree without gloves, safety goggles, hard hat, adult supervision, or a Forestry degree from an accredited university.

My shoulders slumped, and I wondered how much trouble I was in. Mom said, "Don't worry. I won't tell Dad about the tree, and neither should you." She patted me on the head, but I still felt awful for what I had done.

My parents served these opposing roles in my life – disciplinarian and protector. As a child, I didn't like to try new foods, and my mother accommodated me. Once, Dad became so fed up with my fussy eating that he pointed his finger at me and declared, "You will sit there until you eat those green beans. I don't care if it takes you all night."

Nothing in this world could have made me eat even one of those slimy, green snots. I remained closemouthed until Dad went to bed. Mom picked up the beans, threw them away, and whispered, "We'll just tell Dad you ate them all, but you still don't like them." As an adult, I enjoy a wide variety of foods, but I won't touch green beans. Dad is long gone, but I refuse to capitulate.

Book Title and Cover Design

The title and artwork idea came to me in the middle of the night. The next morning, I asked Kim if she could draw it for me. She said, "I can't, but I know a sixth-grader, Devan, who probably can."

Devan did a great job producing the basic sketch, which I modified only slightly and added the captions to in Photoshop. I have a professional artist ready to go with this idea if I like it enough. I need your help to determine if I do.

Please respond to the poll on the top right of this page, entitled, Which Title Do You Prefer? But also give me your thoughts in the comment section or in whatever way you prefer communicating with me. If you are receiving this post as an email, click here to go to my webpage where you can vote on the top right.

Here are the title/cover ideas:

Option 1

Option 2

Option 3

Option 4

Option 5 – none of the above

The editing of my book continues in earnest. I expect to finish the manuscript in the first quarter of next year and then begin the long process of shopping it around. It’s conceivable that I'll publish in 2016, but it could slip into 2017.

Wednesday, September 9, 2015

Memories: Watching TV with My Mother

note: for those of you receiving this blog post as an email, click here to go to the original post to view the embedded videos.

As most of you know, my mother became a quadriplegic due to a spinal cord injury when I was five years old. She lived forty more years. Mom never complained, and she lifted the spirits of anyone who spent time with her. One of the ways I spent time with her as a child was watching television.

There were three shows that she loved, and they shared the common thread of a talented, funny, leading lady. It started with Lucille Ball, and the I Love Lucy show. That show ran from 1951 until 1957, before my time, but we could find it in reruns through most of my childhood. Lucy got herself into a hilarious predicament every episode, and my mother never failed to laugh at her. Neither did I. Perhaps her most famous scene was at the chocolate factory:

The second program my mother loved was the Carole Burnett Show. This comedy-variety ran from 1967 to 1978. Carole was the leader of a troop of comics such as Harvey Korman, Tim Conway, and Vicki Lawrence. They would perform skits each week. Some of them were one-of-a-kind’s, and others were of the serial variety. Again, Mom and I would laugh throughout. Our favorite part was an unrehearsed question and answer segment with the audience at the start of most shows. Carole was quick on her feet, essentially performing improvisational humor. She also had a nice voice. Below is a video of how she ended each episode.

And finally, my father joined my mother and us kids to watch All in the Family, which ran from 1971 to 1979. Here's the opening song:

This show was different from the other two, in that it was a mixture of comedy and serious political and social satire. Archie Bunker was the lovable bigot. He was a right wing conservative before they were called right wing conservatives. His wife Edith, who he referred to as Dingbat, was the quiet and submissive wife, except for those few times when she wasn’t. Archie’s nemesis was his son-in-law, Michael, who he referred to as Meathead. Michael was a bleeding heart liberal before they were called bleeding heart liberals.

Dad’s outlook on life was similar to Archie’s. Sometimes I overheard my parents talking to their friends about the show. Dad would often take the position, “Everybody laughs at poor old Archie, but if you really listen to what he says, he’s right about almost everything." I think my mother loved the show because she sympathized with the Edith character, and although she would never laugh at my father, she felt free to laugh at Archie.

These shows were each groundbreaking in their era. The time our family spent in watching them together was quality time. Does anyone still do that with their family? Do people still gather around and watch TV shows together, or does everyone retreat to their separate corners of the house and watch their own personal “content?”