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.

6 comments:

  1. Your annual review is always appreciated; we all feel as if we know you and it's good to hear how things are going, as well as a nudge to do the same. I'm eagerly awaiting the publication of your book, and kudos to the photographer--that frozen cove shot is amazing and gorgeous!

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  2. Thanks for keeping us updated. I still see a lot of positives in your list. I would very much like to hear more about how the personal care assistants are working out. I am at that stage myself. Kathy

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    1. Kathy, I expect to be writing about the personal care assistants very soon.

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  3. I hear you Mitch. I’m at 17 years now and have to cath 100% of the time. But, like you, I see the positive in that I still have the dexterity to do it.

    My book’s out on Ocrevus also. I’ve chosen not to take it. No enhancement ever and they were not taking ‘non enhancers’ in the trial so that said it all for me.

    I’m sorry to hear about the eating. That has to be enormously frustrating at times. We’ll hang in there. Here’s hoping! I always love reading your blog

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    1. Lew, great to hear from you. Glad to know you are still fighting the good fight.

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