MITCH STURGEON
Author and Blogger Living With MS
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Seventeen years is a long time to have had MS. Unimpressed by the number seventeen? How about the fact that I’ve lived with MS for upwards of 5 billion seconds? That’s a lot of seconds to have had MS, and I haven’t taken a single one of them off.
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.
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 countless 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. That’s never a comforting exercise.
So, how did 2018 treat me? Could’ve been better, much better. Could’ve been worse, so much worse. Let’s start with the bad and work toward the good.
2018 Negatives:
Again this year, the negatives column is largely about increased difficulty getting food and drink into my mouth, due to arm and hand weakness. If a year ago I needed assistance with 75% of my bites and sips, now it’s 90%.
Other than eating, there are a million little things that are more difficult this year than last. Here’s a sampling:
Although I can technically operate my computer, tablet, and phone with my voice, life is so much easier if I can incorporate a pointing device such as a mouse. Throughout 2018, mouse control became more difficult for me. At times, my right hand was relaxed and limber enough to operate the left mouse button. Other times it was too stiff and weak. I was rarely able to operate the right mouse button.
I could no longer blow my own nose, remove a stray eyelash from my eye, or scratch an itch on my face or head.
I couldn’t open or close doors except automatic ones.
Although I’m still able to control all the features of my wheelchair using buttons and the joystick, in 2018 it got harder all the time.
I couldn’t brush my teeth without assistance.
I could no longer hold anything in my hand to read from – a piece of paper, a greeting card, a menu…
2018 Positives:
Physical therapy continued to help maintain some strength and flexibility in my arms and shoulders.
I consulted with Mobius Mobility about the next generation of iBOT. More to come about that in the next few months.
I added significant accessibility improvements to my house, most notably automatic door openers. I will post about these additions in detail soon.
I published my book, ENJOYING THE RIDE: Two Generations of Tragedy and Triumph. I will discuss this more in a separate post.
I continued 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). To date, I have not noticed a benefit.
Kim’s home business continued to be profitable. Most hobbies cost money. Her hobby makes money. Because of these profits, we go on cruises. Here’s the link to our February, 2018 adventure. Here’s the link to Kim’s home business.
Started employing home healthcare assistants. Very expensive, but a big load off Kim’s responsibilities. And, I’ve come to understand the African immigrant population so much better.
Another year above ground – still preferable to the alternative.
2019 Potential Losses (if my disease progression continues, this is what could happen next):
Assistance needed 100% of the time for eating.
I will stop “getting help” brushing my teeth and will just have others do it completely for me.
I will encounter 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).
2019 Potential Gains:
More writing success.
Seven-day cruises in February and April, thanks to Kim’s home business.
I will be dabbling in public speaking, and may actually enjoy it.
A few positives I can’t even imagine.
Here’s the bottom line. 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 name for a blog or a book. It’s my mantra, my truth.
38 Replies to “2018 Annual Report”
Mitch,
Thanks for the update .. haven’t seen you and Kim as much so, we must organize a get together. You peaked my interest relative to the speaking engagements. Any more info on those I would love to hear about them .. your message, audiences etc. Say Hi to Kim for us.
Enjoy your cruises!
Bob
Bob, thanks for dropping by and commenting. Let us know next time you’re in the big city.
Mitch, I enjoy reading your updates, they are very eye opening. I have great respect for you and Kim. Looking forward to maybe a “new” read and hearing about some of your public speaking. Have a wonderful time on your cruises.
Stay safe and say hi to Kim for me.
Wanda
Wanda, thanks for your support all these years!
I’m inspired by your positivity despite all else. All;; the best.
Thanks, Roland.
Very inspiring. Thank you as always for sharing.
Thanks. We hosted our favorite couple from Harmony, Maine this weekend. They are, of course, doing well.
That’s wonderful. We’re hoping to get together with them soon. I think it’s been since August that favorite couple!
Mitch, you continue to inspire: awe and dread. I love the positive outlooks; I cringe at your losses. Keep rolling, keep posting, keep enjoying the ride! Hugs to you and Kim both. Maybe I’ll run into you at CIA sometime.
Mrs. Reed, you are too kind. You’ll have a better chance of running into me at CIA if you tell me when you’re going there 🙂
Mitch, you are a wonderful, loving person and the way you inspire all of us is remarkable.
Keep the writing coming; looking forward to the next book. Our best to you and Kim.
Love, Gail & Wayne
Gail, I always love to hear from you. Thanks for stopping by and commenting.
As a person with ALS and a writer, I am inspired by you Mitch. Keep writing! – george smith
George, I am humbled to have earned your admiration. It goes back to you tenfold.
Thanks for this honest post, but I especially love your attitude. You inspire me to be happy with what I can still do even if it’s not much. I am 10 years ahead of you, 27 Years with MS and similar disability to you and a similar attitude. Yes, like you the future is scary and I do think about it often. But somehow I’m still quite happy. It really is the relationships in our life that sustain us. Family, friends, care givers, could not do it without them and their love and support.
-Kathy
Kathy, you give me hope! Thanks for sharing.
Hi Mitch, I too have ppms but in the earlier stages. I really enjoy reading your blogs. Your writing is like listening to an old friend – comforting yet truthful. Isn’t it strange that illness like this can open up doors to new parts of us we never thought would emerge? I’ve started painting and enjoy it tremendously! Best wishes for a healthful 2019!
Louise, thanks for writing. You are so correct. I hate that I have MS, but I don’t hate the person I have become, on the inside, because of my struggles.
It’s a tough accounting job. As you say, it is hard (impossible?) to know what is MS and what is aging. A therapist of mine once called it “aging plus.” I can recall symptoms – spasticity – back to early childhood, so I often wonder if my learning difficulties, my speech problems, and my lifelong struggles with depression were MS or just the usual slings and arrows. I guess it doesn’t really matter why.
you’re right, it doesn’t matter, but I can’t help wondering about those things. Sounds like you can’t either.
Your strength inspires all of us to not take anything for granted; moving a mouse, blowing our nose, scratching an itch, etc…
But more importantly, you inspire us to live each day with gratitude for what we have and not lament over what we don’t. We’re all here for you as you continue “Enjoying the Ride”… and we’re sure to have fun again in 2019! Love you both.
Lynn, your friendship continues to buoy our spirits. Thanks for all you do.
I’ve been looking for door openers I can connect to Google Home at a reasonable cost, but haven’t found any. I look forward to hearing about what you’ve found.
Ted, I will blog about this soon. Unfortunately, the ones I installed are unreasonably expensive.
Yes. I’ve seen one or two in the $300 range (don’t know how good they are), but most are closer to a thousand. I have an additional problem: at the most important door (bathroom), there is no electrical outlet nearby.
Mitch,
You Kick Ass! In other words, you are my hero. Thank you so much for your honesty. As I’ve mentioned my husband had PPMS and lost the use of his right arm and leg and was in a wheelchair for the last year of his life taken not by terminal cancer (which he also had) but by a heart attack. I know first hand the realizing the current status as changes creep in and considering the future and while you stay focused, task oriented and positive, you are also realistic and in my opinion bravely taking it on with Navy Seal style bravery.
Shari, man, you are good for my self-confidence! I don’t feel like I’m doing anything remarkable, but I don’t mind hearing that I am helpful to people. Feels good.
As always, I am so grateful from your power perspectives. And the fact you remain so impressed with your wife, who, now having met her, I can safely say kicks royal ass.
I am always a huge fan of your writing and think it’s AMAZING you wrote a book. With compromised hand editing abilities.
I adore you my friend. Keep going!
Kate, thanks so much for stopping by and brightening my day. You have that effect.
Mitch, hello from Sydney, Australia. I always look forward to your posts. I find your self assessment and the honesty of your annual report quite confronting as it challenges me to do the same at the beginning of the new year. You are an inspiration not only for those of us with MS, but for all disabled persons and those facing their individual challenges, whatever they may be.
Gail, I’m so happy that anything I do helps people cope. Warms my heart. Thanks for writing.
Thank you Mitch for having the courage to lay bare your your hopes, insecurities and opinions. There are many people dealing with inward struggles who will find strength in your strength and be able to voice theirs better.
I wish you and Kim all the best in 2019. X
Jane, thank you so much for your kind words.
Your blog continues to be my most valuable resource on the internet so I thank you ever so much! You were the person who introduced me to the surehand lift and introduced me to other improvements for my life.
Dennis, I’m so glad that I’ve been helpful.
Yep Mitch,
Been following your blog for more years than I can remember (hence your favorite friendly stalker____ heehee)
You and Kamikaze Marc hold a very special place on my favorite’s bar.
Thanks for helping make this ms journey a little less lonely.
You do inspire many of us.
Prayers headed your way …… And God Bless (yeah, I know) but God Bless anyway.
Dee\OH
Thanks so much for your kind words and for being a long-time reader. And, as far as your sign-off, I accept and appreciate terms of endearment in any form, from any faith tradition 🙂
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