Weighing the costs and benefits of care for my aggressive MS

Despite his care needs, a columnist struggles with prohibitive costs

John Connor avatar

by John Connor |

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It’s not often that I dig into my somewhat sketchy knowledge from the Bachelor of Arts in economics I earned in 1980. Admittedly, it should really be described as ugly. Although I scrapped nearly one-third of my units of study, I still have the right in the U.K. (and perhaps worldwide) to put the official moniker of B.A. after my name — though any employer would treat such a scraped-together degree as a laughing matter.

My real problem was that the laughing bit was all I happened to be interested in. It wasn’t until I squirmed my way into comedy that I found peace, if not fame or fortune. The punchline was that I had a happy, if not always financially secure, life. What freelancer in the creative arts ever really does? The current Writers Guild strike in the U.S. is evidence of this.

Still, in the end, I miraculously clawed my way into multiple comedy careers. In the present workplace, that’s a necessity. However, at 47, I wasn’t aware that my lucrative main job was about to crash down abruptly — with me crashing down literally.

I was playing doubles in my tennis club’s annual competition. All was going well. I’d even just won my serve (something of a rarity) when I ran for a drop shot, which I was still quick enough to get to. They were my favorite shots — not the easiest, but always highly satisfying, especially since I was invariably playing against older players who stood no chance of getting to it themselves. Served them right for being cheeky!

In this case, all sneakiness disappeared as everything went weird. I’d fallen from my 6-foot height and all my body weight landed on my right shoulder. The pain was enormous. The funny thing (why does this cliché exist to describe something that’s not at all humorous, unless it’s happening to Daffy Duck?) was that I only realized I’d fallen after I smacked to the ground.

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My 5 wishes for the future of multiple sclerosis

I discovered in the emergency department that I had a Grade 5 acromioclavicular joint separation in my shoulder. The doctor informed me that of the six grades, this was one of the worst. Oh, goodie. He was spot on, as the consistent ice burns that arose from plastic ice blocks being slammed directly onto my shoulder to kill the pain later testified. I was aided by copious opioid tablets of a strength somewhere between codeine and morphine. The upside? I was immune to wasp stings for three years!

Within a week of the fall, I was diagnosed with a solitary sclerosis. That was in 2007. By 2009, I had full-blown relapsing-remitting multiple sclerosis. It turned out to be aggressive due to my age. However, at my last consultation, my neurologist said that many others who are affected by multiple sclerosis (MS) earlier still end up in the same place as me.

Hey-ho, at least I had those 47 years of an active life. And I pushed that envelope with joyous alacrity from the days of postage to the days of email, and even now in my MS dotage.

I have no facts or figures to counter my consultant’s knowledge, but since my MS put me permanently in a wheelchair toward the end of 2020, the progression has turned out to be brutally rapid. Oh, yes, I had other things to worry me during the lockdowns. Imminent death was something of a frippery.

I now seem far worse than the older people with MS I’ve met in exercise groups over the last 13 years. That subjective feeling, of course, is no scientific proof at all. Though, undoubtedly, it counts in the present worldwide politics where alternative facts are all the rage.

The high cost of living with MS

Now to the joyful economics part of this column. I’ll say goodbye to my readers here, as this might get a bit technical — though it’s also a bit juicy, so maybe hold on.

Currently, my carers come three times a day. The yearly cost of this is 34,000 pounds ($42,000). This is unsustainable. But since my recent four-month hospital/rehab center sojourn, my bottom has been behaving like the worst surly teenager. It explodes at all times of day!

Thus, it’s too much to ask my wife, Saint Jane, to deal with on top of all the bureaucracy, shopping, cooking, washing, and ferrying me about she does. See, that last bit is most typical for that surly teenager.

Saint Jane is also awaiting a major surgery, which has a six-week recovery time. So we need to keep the carers coming until then, anyway.

But, like many aspects of living with MS, the situation requires a cost-benefit analysis. Here’s the boring bit: According to Investopedia, if costs outweigh the benefits, “the business should review the project to see if it can make adjustments to either increase benefits or decrease costs to make the project viable. Otherwise, the company should likely avoid the project.”

How I ended up in a subject so sleep-inducing it could easily destroy a great chunk of the pharmaceutical industry is evidently a major mistake for anyone with future writing aspirations. Doh!

Speaking as that project, I’m not worthy!

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Diane Randall avatar

Diane Randall

Humor is great for providing relief and camaraderie. The above article, however, triggered my anxiety by its gross humor, the humor is shock-bait. I can say I've had diarrhea, or very bad diarrhea, without exaggerated description intended for laughs. I read MS News Today and other good news sites and try to ensure I'm not going to be shown something disgusting or grotesque. Blessings on your journey!

John Connor avatar

John Connor

Ah, methinks this refers to a completely different column! By rights, I should be writing this reply next week.


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