Tuesday, January 23, 2018

My Top 10 Rules for Interacting with a Wheelchair User

I am overwhelmed by how helpful and pleasant most people are when they encounter me in public. Just last week I was zipping through a crowd of people rather quickly in my power wheelchair. My friend remarked, “You could hurt somebody the way you drive.”

She was right. “But,” I rationalized, “even if I run over an innocent bystander and knock him to the floor, once he realizes it was a wheelchair guy that did it, he would be more likely to apologize to me than be angry with me.”

Without further ado, here are my top 10 rules to follow when you meet a wheelchair user in public (at least if the wheelchair user is me):
1.    If you've read my earlier posts, you know that I can sometimes be seen in my high-tech wheelchair, the iBot. If you'd like to know how it works, and I'm not in a big hurry, I'll probably tell you everything I know about it. However, please don't yell out in the middle of a busy shopping mall, "Earl! Earl! Get over here! You've got to see this! This chair is the freakiest thing I’ve ever seen!" This really happened to me.
2.    If you are so inclined, feel free to offer me assistance with tasks. However, if I decline the offer, please respect my wishes. Just because I’m sitting by the door doesn’t mean I want to go out through it. Just because I’m in line for a beer at Fenway Park doesn’t mean I want you to buy me one. Bad example — I do want you to buy me one.
Also, please don't take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to make the offer if it feels right to do so, but be prepared to step away if I decline.
3.    I don’t mind if you ask me why I’m in a wheelchair. It’s killing you, right? You just have to know, and I don’t blame you. I feel the same way when I see someone in a wheelchair. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
4.    On a related note, please resist the urge to give me advice on how I can be fixed. I don't know how many people have, upon learning that I have MS, blurted out the fact that they know the cure because of a friend or relative’s experience, and here it is!
And it’s almost as bad to utter, “I’m not saying this is a cure, but you should try it anyway. What have you got to lose?”
My mind. I’ll lose my mind if I try all these potential cures. I pick and choose the ones I’m most comfortable with.
Now, if you are a close friend or a medical professional, and especially if you’re one of my close friends who is a medical professional, an acceptable conversation starter would be, “Did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. Probably I already did, though.
5.    Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, don’t go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. Be cool.
6.    Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. "You poor thing. I feel so bad for you," is not good.
7.    Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is beyond annoying.
8.    When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
9.    If your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile, I’ll get one right back.
10. Do not, under any circumstances, make the “beep – beep – beep” sound when I am backing up. I cannot stress this enough. Under no circumstances.
I hope I haven’t made it too complicated for everyone. Now, laminate this list, place it in your wallet or purse, and go make me proud. 

Tuesday, January 16, 2018

Home Invasion

One morning, a couple of weeks ago, Kim refused to get me out of bed, showered, dressed, and ready for the day, like she always had. Instead, she fed me a piece of toast and poured a glass of juice down my throat. She then wished me luck and headed out the door, leaving me helpless in my bed.  
Forty-five minutes later I was startled when someone opened the front door. I heard footsteps coming toward my bedroom. There was nothing I could do, other than scream out…
Bonjour, mon ami.
Bonjour, Mr. Mitchell.
It wasn’t an intruder after all. It was my new personal care assistant, who hails from The Congo, where French was his first language.
Taking care of me, 24/7, can be overwhelming, so Kim and I had decided to hire some help. I began my research trying to determine if the state government, federal government, or medical insurance would subsidize in-home personal care. It turns out I have too many assets and too much income to qualify for assistance—a mixed blessing if ever there was one—and medical insurance simply does not cover this service.
Quite a number of businesses provide home care assistance for elderly people who are trying to avoid the dreaded nursing home. I targeted those companies. They have rules. One company required that two assistants be present, for safety reasons, if the attendant needed to use any kind of lift system to transfer the patient from bed to wheelchair, for example. At the hourly rates they charge, this was insane. Eventually I found a company which didn’t have that restriction for my type of lift equipment.
Like most of these companies, the one I hired has minimum hours requirements. To get the best rate, I need to have the helper here at least four hours per day, two days per week. They spend about an hour and a half getting me up, showered, dressed, etc., and then they spend the rest of the time doing light housework, helping me with some exercises/stretches, and feeding me lunch.
These first few weeks have generally gone well, with a few bumps. The attendant might ask me, “Where do you keep the broom.”
“I have no idea.”
“How do I start the dryer?”
“I have no idea.”
And so on…
This is the first house where I was so disabled when I moved in that I’ve never done any of the cleaning.
I hadn't realized how long it took Kim and me to perfect our morning routines. Trying to explain each little step in the process to my caregiver is tiresome for both of us, but we get a bit better at it each session. 

I’ll write more about the fascinating immigrants I have met already, once I get their permissions. Suffice it to say, they are first rate individuals, and they are making Kim and my lives better.

Wednesday, January 3, 2018

Annual Report 2017

Sixteen years is a long time to have MS. Sixteen is not a big number, however. Let’s think of it as 5844 days or 140,252 hours. Now the numbers are getting impressive. Why stop here? I’ve had MS for 8,415,130 minutes or upwards of 504,907,776 seconds. That’s a lot of seconds to have had MS, and I didn’t skip a single one of them.
Welcome to my annual post where I take a moment to consider what I’ve gained and lost in the past year, and what changes may await me in the coming one. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I focus only on the negative. And I reserve the right to inject humor no matter how serious the topic.
So, how did 2017 treat me? Could’ve been better, much better. Could’ve been worse, so much worse.

2017 Negatives:
  • Again this year, the negatives column is all about increased difficulty getting food and drink into my mouth, due to arm and hand weakness. If a year ago I needed assistance with 50% of my bites and sips, now it's 75%.
  • Having more difficulty operating the computer mouse and wheelchair controls, operating general buttons and knobs, opening doors, or holding items in my hands.
2017 Positives:
  • Physical therapy continued to help me maintain the strength and flexibility in my arms and shoulders.
  • Obtained an OBI robotic feeding assistant.
  • Published my 500th blog post.
  • Began treatment with a very expensive drug called Ocrelizumab. Although it is the first drug ever approved for primary progressive multiple sclerosis (yeah), it probably won’t work for people with advanced disability like me (boo).
  • Also began treatment with an over-the-counter antihistamine called Clemastine Fumarate, which showed some benefit for progressive patients in a phase II trial (yeah). However, many drugs look good in phase II but end up not being effective for the larger population (boo).
  • I made great progress on my book throughout the year. I now have query letters and proposals out to dozens of agents and publishers. If none of them bite, I'll be ready to self-publish by summer.
  • Kim's home business continued to be profitable. Most hobbies cost money. Her hobby makes money. Because of these profits, we went on two cruises.
  • Children are all out of the house, and we are empty-nesters again.
  • Another year above ground – still preferable to the alternative.
2018 Potential Losses (if my disease progression continues, this is what could happen next): 
  • Assistance needed close to 100% of the time for eating and grooming
  • More difficulty operating the computer mouse, wheelchair controls, etc.
  • Eventually, my bladder is going to stop working, and that will suck. This could be the year, but I’ve been saying that for a few years now.
  • Something I can’t even imagine (the devil I don’t know).
2018 Potential Gains: 
  • More writing success at the blog and elsewhere.
  • Find a publisher for my book or decide to self-publish.
  • Caribbean cruise in February, thanks to Kim's home business.
  • Personal care assistants, who began on January 2, 2018, will make Kim’s life much easier.
  • A few positives I can’t even imagine.
I conduct this thorough review only once each year for a couple of reasons. First, it takes that long for me to determine if certain changes are the result of permanent disease progression or are merely the normal ups and downs from aging, seasonal affective disorder, phases of the moon, or a million other variables.

Second, I only do this once a year because it can be a harrowing process. As I contemplate my losses and gains, I tend to extrapolate – envision what my life will be like down the road if the disease progression continues at this rate. I am concerned for my future health and fearful for my future happiness. But, at this moment, Enjoying the Ride is more than just a clever blog name. It’s the truth.
Photo credit at top: my brother Andy took this picture of the ocean cove behind my house, frozen solid, on New Year's Eve 2017.