Ten Obscure Activities I Miss Because of MS

There are obvious things I miss: walking, driving, taking care of myself in so many ways. But here are ten more obscure activities that I wish I could still do on my own.

Breaking a sweat — I can no longer get my heart rate up high enough to break a sweat. I can’t stand to sit in the sun, so I don’t break a sweat that way either. I used to like that feeling once in a while.

Blending in — Just once, it would be nice to blend in with the crowd. When you’re in a wheelchair, you’re either overlooked (not the same as blending in), or you stick out.

Sitting in the stands at a sporting event — I love to go see the Red Sox and Patriots play, but I can’t just tag along if friends have tickets. I can’t purchase tickets on the secondary markets such as eBay or Ace Tickets. I either get wheelchair accessible tickets through the ticket office, or I watch at home (or, there were those three times I got myself into a luxury box).

Pondering the future — I can’t imagine what life will be like more than a year or two in the future, so we don’t make long-range plans other than having our home as accessible as possible and our finances ready for any eventuality. We don’t talk about what we will do when Kim retires, for example.

Swatting flies — Luckily, I live in an area without many nuisance flies. But once in a while, a housefly or a mosquito torments me, and I have little recourse. Bastards.

Removing credit cards and paper money from my wallet — It’s not a big deal, because clerks are glad to help me out, but it sure would be nice to use my credit card or handle cash on my own.

Cleaning my sunglasses — Some people are perfectly content to wear sunglasses with smudges all over the lenses. I don’t fall in that category, and my glasses tend to have more smudges than normal because I handle them so clumsily.

Wiping or blowing my nose — I don’t get many colds, but when I do, it gets messy.

Sleeping alone — I hesitate to mention this one, because I know there are people out there who are tired of sleeping alone. My point is this. Because of my disability, Kim can’t sleep away from home. She can’t go on business trips, weekends away with friends, etc. I wish she could.

Flossing — You know that wonderful feeling you get after flossing? I wish… No, I can’t do this. I can’t lie to all of you. I never flossed before MS, and I never floss now. Don’t tell my dental hygienist. What she doesn’t know…


For having read this far, you get a bonus list:

Five Activities You Might Be Surprised I Can Still Do

Taking a nap — My mother was in a wheelchair, and she didn’t have any way to comfortably take a nap during the day. But modern wheelchairs recline at the push of a button. To prove it, I’m going to take a nap before I get to the end of this…

Going out alone for lunch — Because I live in such a busy neighborhood, I have a choice of places I can go for lunch. It’s getting more difficult to get the food from plate to mouth, but I still have a few lunch items that work for me.

Controlling the lights, audio/video/computer/cell phone in my house, with ease — If you’re not aware of how I do this, read my blog post here.

Meeting people — I meet so many people online or in my neighborhood, I have trouble keeping track of them. I’m not lonely. Not even close.

Sitting by the ocean — In my neighborhood, I have at least five awesome places where I can sit by the ocean.

Feeling good about my life — I’m not in denial. I’m not happy I have MS. But when I compare my life to the lives that people have lived for thousands of years, or the lives millions of people are living at this very moment, I’ve got nothing to complain about.

On My Own

My daughter and son-in-law moved out this summer, with our blessing and best wishes. This left Kim and I empty-nesters, which changes things.

I didn’t feel the effects until Monday, when Kim went back to work as a middle school guidance counselor after having a couple of months off. My disease is steadily progressing, and my abilities are only declining at the same time less people are around to help me. The challenges resulting from this living arrangement will require a combination of financial investment, ingenuity, and organizational skills. You know — stuff an engineer does.

Financial

I’m going to invest in items like automatic door openers, at least for my front and back doors.  Also, I’m going to hire some help — home care professionals — to stop in a few hours a week.

Ingenuity

Kim and I are brainstorming ways for her to prepare my lunches in such a way that I can feed myself. Another problem we haven’t figured out yet is how I can put my coat on and take it off once the weather gets colder. If we don’t solve that one, I’ll be stuck in the house during Kim's work hours in the winter — inconvenient but not catastrophic.

Organization

I put together a checklist that I’ll look over before Kim leaves for work in the morning, to make sure everything is set up as well as it can be for me. Here’s a partial look at that list:

• Lunch items all set up for me
• a drink with a straw in it set up at the table
• a couple of snacks ready to go
• eyedrops where I can reach them
• sunglasses where I can reach them
• accessible scissors for opening packages
• remote controls
• windows open or closed according to the weather
• make sure I can reach the device I currently wrestle with to get back door opened and closed
• medications ready
• dog and cat fed and watered
• dog has on her invisible fence collar
• my cell phone in good position and coupled with computer
• several more items, some of which modesty prevents me from detailing

Note that all these items are addressed only after Kim gets me out of bed, washed, groomed, dressed, and otherwise presentable.

The good news is that Kim is only a few minutes away at work. My goal is to not bother her, but it’s comforting to know she can be home quickly if she needs to.

I’ve managed considerably more complex engineering projects over the years. This should be a piece of cake.

Ocrevus—My Latest Attempt to Stem the Tide

Ocrevus probably won’t work for me. It's best suited for younger patients with less disability, and it's more effective for people with active lesions, which I don’t have.

But I’ve got nothing else to try.

And, if it does work, even a little, wouldn't that be a wonderful thing?

Ocrevus is the first drug to gain FDA approval in the United States for the treatment of primary progressive multiple sclerosis, my variety of MS. Its predecessor, Rituxan, has been used off label for years with some anecdotal evidence of success. In 2005 through 2009 I participated in a clinical trial for Rituxan, and I used it off-label afterward until my insurance company refused to pay for more. I experienced some reduction in the speed of disease progression. But I was younger, and I had less disability, so I don’t expect to pick up where I left off.

There’s a bit of controversy surrounding this drug. Some people speculate that if the patent had not run out on Rituxan, the pharmaceutical company, Genentech, would have run another trial of that drug years ago, and it might have been available sooner and at a lower price than Ocrevus. Company officials counter that the differences between Rituxan and Ocrevus are the reason why one drug failed a clinical trial and the other passed.

If you want to get into the details of this argument, I recommend reading this article from my friend the Wheelchair Kamikaze.

I had my first 300 mg IV infusion of Ocrevus on July 19, and my second 300 mg infusion today, two weeks later. I was at the clinic for about five and a half hours each time. Every six months, for an indefinite period, I will receive a single 600 mg infusion. The side effects are minimal.  The nurse had to stop my first infusion for about 20 minutes when I started getting itchiness around my head. The second infusion had no incidences. The drug is not without risks, but given my level of disability, I scoff at its risk profile.

The cost? I will be responsible only for a co-pay and possible deductible, but my insurance company will be on the hook for about $65,000 a year.

When will I know if it's helping?  Ask me this time next year. It takes that long to notice changes in my disease progression.

Ocrevus probably won’t work for me, but I'm a desperate man.  I'll be carrying my 99 pounds of skepticism and 1 pound of hope with me to every infusion. Well, actually, Kim will carry a large share of the load. It's too much for me alone.