“If I were you two, I think I’d plan for the worst,” Amy, my physiatrist, said to my wife and I as we all sat in the examination room.
It was just after 11 a.m., Friday, January the 18th.
January has become one of two pivotal months in terms of my MS treatment plan, and now includes my first Ocrevus infusion of the year, the first of my semi-annual neurologist and physiatrist visits and initial sessions with my physical therapist. I’ll do the whole circuit again in June.
My wife doesn’t typically accompany me on these appointments, but Amy had relocated to another city, too far away for me to be comfortable driving myself. The two had never met, and since Amy plays a pivotal role on my MS team, I thought it would be good for them to meet. Plus, the following Monday was Martin Luther King Day, and we were looking forward to a four-day weekend together.
We had just finished telling Amy what we were planning to do to better accommodate my progressing symptoms, including buying a bigger vehicle to hold and carry the rigid-body, self-propelled wheelchair Amy had ordered for me. After months of drawing up plans and meeting with contractors, we were finally ready to pull the trigger on adding a half-bathroom to the main level of our old home in order to reduce my trips up and down the stairs and to minimize accidents — of all kinds — along the way.
Neither of these solutions were inexpensive, but it keeps getting harder for me to walk, I fell a lot more last year and the stairs in our home seem to be growing in number and somehow keep getting taller, too.
We had shared our plans with her hoping for validation or direction. She diplomatically recommended a mobility van or vehicle, while adding that if we were going to renovate our home, we should add a full bath and bedroom to the ground floor of the house. She just wanted us to invest our time, effort and money effectively, she said, and that our initial fixes might be short-lived at best.
Her recommendations were wildly more expensive than what we had envisioned. It was NOT what we expected to hear.
Like so many MSers, my diagnosis in 2013 came after years of seemingly disconnected problems followed by a couple of textbook signs of MS (foot drop, special introductory episodes of “bowel and bladder” issues). Outside of being unable to lift my right lower leg one summer afternoon, though, I hadn’t had any obvious flareups or exacerbations.
I was 53 at the time.
Initially my neurologist thought I had relapsing-remitting (RRMS) MS. I asked him the standard list of questions trying to get some — any — kind of grasp of what was going to happen to me next and when. He was always positive and reassuring, yet always somewhat evasive when answering my questions.
Anxious to end my anxiety, I spent more than a little time researching disease outcomes for RRMS patients. In my mind they appeared to be potentially significant but possibly not as disabling as the progressive forms. My symptoms were comparatively mild, my neurologist obtuse-yet-positive. Much of what I read about the disease stressed maintaining a positive attitude, too.
I began to think that I might get lucky and avoid significant progression, that my symptoms might plateau, possibly even end altogether, and that mine might be a relatively benign experience.
At the time that seemed “positive” to me and my wife and I continued trying to live our new MS lives the best we could. We didn’t have a plan for doing that, or know where to turn for help, and in the sturm und drang of the disease, we just kept going without one.
My symptoms continued to worsen. By late 2016, it was apparent I had the primary progressive (PPMS) form of the disease. Given my age at onset and the types of symptoms I had, it made perfect sense.
In 2017 I made Amy the captain of my MS healthcare team. Straightforward and funny, she was the first MS-related doctor I connected with. I knew she was devoted to helping me anyway she could and I knew she would tell it like it is.
Until recently, I’ve found the unpredictability of MS, how it develops, how it progresses — or doesn’t — maddening. I’ve learned why it was impossible for my neurologist, or anyone else, to predict my ever evolving MS. I’ve also come to realize that uncertainty can’t be easy for doctors to explain to their patients and how hard it must be for them to help their patients remain upbeat at the same time.
But that doesn’t change the need to make some very challenging life decisions. Unsettling as it was, we needed to hear what Amy said that morning. To be honest it gave me a sense of relief. Because for the first time since I was diagnosed, I finally have a better sense of what to expect.
This column originally appeared in Multiple Sclerosis News Today
I knew it was going to be one of those days as soon as I opened my eyes.
I woke in some sort of half-start, my eyelids popping abruptly open as I looked up at the ceiling.
Something seemed weird.
For starters, I wasn’t on the sofa. My sleep has been sketchy for some time, and I often migrate through the night from our bed to the spare bed, to the sofa, and sometimes back — a bleary night watchman on the lookout for some sleep.
I did a quick system check before I got out of bed.
Tingling, burning feet? No.
Stiff, wooden hips? No.
Medication-induced grogginess? Nope.
Zombie-like right leg, foot, and hand? Yes.
OK, three out of four wasn’t bad.
I rolled across the bed, dragging my left leg into position so that I could swing my right leg over and onto the floor. Most mornings, that process takes way more effort than it should, and I’m never quite certain if the right leg is going to be stable once my right foot touches the ground.
But it was a surprisingly smooth transaction. I bounced out of bed. OK, it was more like I lurched onto my feet and then dragged myself to the bathroom. But still. I felt more rested than normal. And I definitely felt better than normal.
By that point, I knew it was going to be a good day. The question was, how would I spend it?
In the past, I greeted this kind of day like a puppy let off its leash in the park. I’d try doing everything and anything, pushing myself as hard as I possibly could. Most of my days are some combination of managing symptoms and knitting the non-MS part of life around them. Once every other week or so, I wake up feeling like I’ve been beaten with a brick-stuffed bag.
I’ve learned — or I am trying to, anyway — that “good days” are a different type of currency than they used to be and that I need to be smart about how I spend it.
I think there are two schools of thought regarding how I invest that currency. One school is “use it or lose it.” The other is “save it for later.”
In the “use it or lose it” gambit, I go ahead and do everything and anything, even if I pay for it later. The theory is that I never know when — or even IF — a day like this will return. Better to use the good days now because they will soon be gone. And, as a fellow MSer told me, “If you could guarantee me that I wouldn’t feel awful later anyway, I’d take it easy on myself. But you can’t guarantee that. So, I do what I want.”
The “save it for later” approach urges that I be careful and (warning: tired sports cliché ahead) “let the game come to me.” I think this means I should have a plan and stick to it. I should be mindful of my reduced capacity. Perhaps if I don’t overdo things solely just because I can, I might have the energy or capacity to do other more meaningful or rewarding activities later.
On that good day, I decided to try a blend of the two, combining an ambitious and pragmatic to-do list with an eye on assessing each item and deciding how much of a priority each really was, and how valuable the outcome really was to me, my wife, or both of us.
Nothing I did that day was especially remarkable other than the pace was manageable and I was thoughtful about what I was doing and why. The plan seemed to work out well enough, but I’m still not sure how much of a role my approach to it really played in the outcome.
Sometimes a good day is just that. Twenty-four hours where nothing too bad or unmanageable or overwhelming happens. For whatever reason, everything is in alignment and more or less working in unison, and I feel commensurate to the day.
The truth is, in many ways those days may be as good as life gets for any of us, MS or not. And that’s fine. The trick is to get it — and enjoy it— while the getting is good.
This column originally appeared at Multiple Sclerosis News Today.
“Today we’re going to talk about the ‘Four P’s,’” Stefani says. “You’ve probably heard of these already, but let’s go through them anyway.”
I look at her the way a dog tilts its head when it hears a high-pitched whistle.
Kind of like this.
“No, I haven’t,” I say.
“You’re kidding,” she says, incredulously. “How long have you had MS?”
“I was diagnosed in 2013 but I think it went undiagnosed for many years before that,” I answer.
For the longest time I’ve had the nagging feeling that my MS team and plan have been missing something. This exchange only confirms my fear.
To put a finer point on it, while plenty of articles and resources recommended that I review my “treatment plan” with my “MS specialist,” up until this year I had no idea who my specialist was, and if I had a formal plan, it must have been top-secret because no one shared that with me.
Instead, my team consisted of isolated specialists and care and treatment and drugs with seemingly no eye on how I should actually live my life with a progressive disease like MS, both now and in the future.
Yes, the National Multiple Sclerosis Society and other resources have a lot of information and even people online that I can ask for help, referrals and guidance and I am incredibly grateful for all of these resources.
Helpful as they are, they can’t be with me within the healthcare my insurance allows me to have, can’t meet with the different doctors I see or knit together the plan that’s directly applicable to my unique flavor of MS.
Not long ago, I wrote about discovering that I was in charge of building the MS treatment and team around me and how I now planned on building.
Which is where Stefani comes in.
Stephanie is an occupational therapist I began seeing in early February.
Originally, I thought occupational therapy meant addressing work, or “occupational,” issues. Getting a better desk or desk chair or computer screen, things like that. I’m simple that way.
But the American Occupational Therapy Association, Inc., says it’s far more than that.
According to the Association’s website,“Occupational therapy practitioners ask, ‘What matters to you?’ not, ‘What’s the matter with you?’ In its simplest terms, occupational therapists and occupational therapy assistants help people across the lifespan participate in the things they want and need to do through the therapeutic use of everyday activities (occupations).”
Stefani has prepared a comprehensive 10 visit evaluation for me and today’s visit is all about energy conservation (and the previously mentioned “4P’s”: Prioritize, Plan, Pace and Position).
At first blush, these seem pretty straightforward and sort of um, simple, so they ought to be the perfect fit for me.
“You need to start developing more efficient ways of doing every day tasks so that you can save your energy to do the things you really want to do,” she says.
Though it’s not specifically focused on MS, Stefani gives me a handout that more thoroughly explains each of the “P’s” and we work our way through it.
Some of the recommendations are pretty straightforward and make immediate sense to me. Like when I’ve got multiple things I want to get done to prioritize them and do the most important task first to make sure it gets done. Planning not just my day, but also scrutinizing activities and tasks so I don’t waste trips or effort. To rest before I feel tired and to use pursed lip breathing in order to increase my oxygen intake and corresponding energy level.
Other suggestions, like sliding objects instead of lifting them or avoiding spray cleaners because they might irritate my lungs and disrupt my breathing (and energy level as result) seem, at least at first, a little impractical.
But the net effect of the visit — and frankly, occupational therapy’s role in my MS “plan” — is to more readily pinpoint where I am likely to face MS-related challenges throughout my daily life now, how to address those challenges and how to better prepare for the future.
In a disease that so often feels like an unsolvable puzzle, surely this must be one of the pieces.
This column originally appeared at Multiple Sclerosis News Today.
Gait and balance issues and MS go together like peanut butter and chocolate.
At least they do to me.
In one way or another they’ve been in the foreground of my life since I was diagnosed in 2013.
But more and more, I’ve come to think of balance in terms of the lowercase “b” balance and the uppercase version, too.
I’m pretty sure they’re not just related, they’re inseparable.
The small “b”
In early February I read the National Multiple Sclerosis Society’s summary of findings from the 7th International Symposium on Gait and Balance in MS held in early September 2017 in Portland, Oregon. Among the symposium’s presentations and discussions were the positive results shown by a vestibular rehabilitation program called BEEMS (balance and eye movement exercises for persons with MS). Created specifically for people with MS, the BEEMS program, “Improved balance, dizziness, fatigue, and quality of life in people with multiple sclerosis (MS), researchers reported.”
Gait problems, according to the National Multiple Sclerosis Society, can lead to “Concerns about falling and appearing impaired in public cause problems too, sometimes leading to social isolation”. In other words, gait problems can lead to anxiety, and anxiety, especially among those with MS, is a fairly certain predictor of depression..
And why not?
MS and all of its uncertainties are happy to traffic in anxiety all day long. The increasing lack of our ability to control the steady distribution of our weight while standing or walking, i.e., achieving and maintaining physical balance, only serves to highlight that.
The big “B”
Then I stumbled across “Tips to Ease Anxiety, an Often Overlooked Effect of MS.” Written by Ms. Debi Wilson, the column shares the effects that stress and anxiety were having on her during a very difficult time in her life along with some tips for coping with it.
Wilson notes an estimated 43% of people with MS experience some form of anxiety due to the disease. Citing “Anxiety in MS: Frequently Overlooked and Undetected,” an article from the Multiple Sclerosis Association of America, she writes, “The anxiety relief methods suggested are exercise, thought pattern changes, and the dissection of fearful concerns you have to make them manageable. Also, solving problems that cause fear and dealing with losses by expressing your feelings are important. A therapist can help with that and possibly prescribe anti-anxiety medicines.”
Based in part on cognitive behavioral therapy (CBT), “Anxiety in MS: Frequently Overlooked and Undetected” states, “Learning to control [emphasis mine] your reactions and quiet yourself can allow you to feel anxiety when needed to problem-solve, but not to become so overwhelmed by it. Increasing the areas of where you can have control and prioritizing activities can also help.”
The tenets of CBT and coping with anxiety seem to me to be philosophically similar to the “Serenity Prayer,” which begins with the phrase “God grant me the serenity to accept the things I cannot change [emphasis mine]; courage to change the things I can; and wisdom to know the difference.”
It’s a philosophy at the foundation of a number of coping strategies.
A few months ago I spoke with a therapist who has MS who suggested to me that, “having MS puts us 10 feet closer to everything in life.” Her point was that many of the effects of MS make us prone to experiencing some of the mental/cognitive, emotional and physical decline that every person inevitably experiences, only faster.
Many of the effects of MS — most in fact — are out of our control. MS is a troubling combination of unpredictability and certainty, the unpredictability of never quite knowing when and how badly it will trip us up or make us feel out of control coupled with the certainty of knowing that it almost always certainly will. And while often gradual, each little loss may make us feel ever more out of control, breeding even more anxiety in our lives as a result.
But her other point was that — with or without MS — so many things in our lives are always out of our control. Learning to accept that and then focus on what we can control and change is balance with the uppercase “b” in MS.
Increasingly I’m pretty certain it may be the more important one, too.
This column originally appeared at Multiple Sclerosis News Today.
Nothing resets your thinking like bouncing your head off a hardwood floor.
At least, for me.
It was about 10 p.m. on a Saturday night, and we were shutting down the house. That routine consists of turning lights off, locking doors, and plugging in phones and tablets for recharging. I plugged my iPad into its designated outlet, in a tight corner in our front room. Most of the lights in the house were out and a glass of water in hand, I turned, took one step forward, and caught the front of my foot under a footstool.
If I was an accident waiting to happen, at least I didn’t have to wait long. In my head what happened next sort of looked like this. But it didn’t at all, and in a flash, I was hitting the side of my head on the floor before broken glass and water were everywhere.
But most of all, stupid me for stupidly refusing to find a safer and smarter way of accomplishing this simple task!
Not too long ago, I ran across a page on the National Multiple Sclerosis Society’s website about MS and falling. It’s worth a visit if you haven’t seen it and you’re prone to tripping. Its main points are to assess yourself before getting up, to stay calm and in control, to try to have a sense of humor about it (if you can), and to thank anyone who has helped you.
But it doesn’t spend a lot of time explaining how to fall the right way. And nothing is worth doing if you’re not going to do it well. Right?
I asked Google to see if there’s information about how to fall better. There is. “How to Fall Down Without Getting Hurt” contains “tricks” for falling better from former Hollywood stuntman Hal Needham. Besides photos depicting the two basic moves you should take while falling, it also includes concise descriptions of what should ideally be happening before you hit the ground (or hardwood floor).
It also suggests that you practice how to fall.
It worked for Elliott Royce. Royce, who passed away in 2015 at the age of 96, estimated he had fallen 15,000 times in the previous 10 years. But those falls were on purpose. According to the Star Tribune, Minneapolis native Royce performed five “practice falls” every morning on an inflatable mattress he kept especially for that reason. He also toured local senior centers, assisted living facilities, and other places to teach the elderly the best ways to fall without hurting themselves.
Royce stressed that he had taken seven “real” falls, but outside of some bruises and aches and pains, he never got hurt. Part of that, he said, was planning to fall and being prepared for when it happened. “Once you start to fall, you don’t have time to think about what to do,” Roy said in the article. “You’re going to have about one second to figure it out, so you better have some plans.”
The article includes a video and description of part of Royce’s secret: Bend at the knees so you’re not falling quite as far (or as hard), twist at the waist and shoulders to spread out your points of impact along your body instead of just one spot, and then roll as you hit the ground to distribute the impact even further.
But part of Royce’s secret, it seems to me, is that he kept a positive and practical attitude throughout his life.
My fall on that Saturday night was the second in the last six months, the fourth in the last 18 months. One was in public, foot drop helping me catch my toe in the crack of a sidewalk while we were on vacation. I sensed it was coming and kind of stopped, dropped, and rolled, and then a very nice young guy helped me up.
It all happened in the blink of an eye, and I only had a minor scratch on my knee.
Another fall happened when I foolishly tried to carry a pizza and salad into a carpeted room. (Pro tip: Place the salad container on the pizza box, then, while falling forward, hold on to the pizza box until you’re about one foot from the floor. At that point, scoot the pizza box across the floor. It won’t be pretty, but you will save your dinner.)
Frankly, I’m sort of amazed by how little I’ve been hurt. My latest fall left me a little shaken and with a nasty bruise on my forearm, but otherwise, nothing. Still, falling is a sharp, sometimes frightening, reminder of how thoughtful and purposeful I must be if I’m going to continue walking. Plus, I want to avoid scaring my wife when she sees or hears me hit the ground. I want to do both.
We’ve used an inflatable mattress for houseguests before. I guess I better find it and add practice falls to the list of exercises and routines I do to manage MS. It’s a long list, and it just keeps getting longer. Stupid MS!
This column originally appeared at Multiple Sclerosis News Today.
Like a lot of people with MS, I took part in the “Great Ocrevus Rush of 2017,” with the fanfare surrounding the release of the first therapy in the United States known to have some ability to stem the advancement of primary and secondary progressive MS.
I wrote about it, did the first two infusions, and received the same hopeful inquiries and support from my friends and family. And I’m scheduled for my third infusion in just a few days, on Jan. 8.
I also recently completed my first 12 months taking biotin.
Ocrevus (ocrelizumab) and biotin play important roles in my approach to dealing with MS; the former hopefully serving as a firewall against progression, and the latter ideally playing a role in re-myelination and possibly even restoration of function and capacity in some of my central nervous system.
For as long as I can remember, I’ve thought of the end of the year as turning a corner from one year to the next, thinking — perhaps hoping — that somehow whatever narrative I stitched together and hung on the prior year might positively inform the new one.
Yet the year’s end made me think about what — if anything — either drug is doing for me.
The disease’s very unpredictability seems to me to make much of an assessment difficult at best. My symptoms continue to gradually worsen. I’ve never had a lot of identifiable flare-ups, so there haven’t been many to reduce or eliminate. To be honest, so far, I’m not sure either has done much for me.
Or have they?
There’s an argument to be made that my symptoms might be even worse without one or both of the drugs. The only way to find out for sure is to stop taking them. Given the disease’s unpredictability in progression, even that assessment seems dicey. It’s a confusing dilemma, one that lots of people with MS encounter.
Curious about what others are experiencing with the drugs, I stumbled upon “Scientists are seeking new strategies to fight multiple sclerosis,” a November article in ScienceNews that’s helping me build a little bit of a framework that makes sense — at least to me, and at least for now.
For starters, there’s this:
“Multiple sclerosis is arguably the most complex disease ever described,” says Sergio Baranzini, a geneticist at the University of California, San Francisco, in the piece.
While I didn’t necessarily want to read that, the affirmation that everyone else finds dealing with this disease confusing seems somehow reassuring.
Part of it, Baranzini says, is that MS involves our autoimmune and central nervous systems, two of the body’s most complex systems. And part of it, according to Ashley Yeager, the article’s author, is that we still don’t know what MS is.
“Scientists aren’t even clear whether multiple sclerosis is a single disease or a multitude of maladies,” she writes.
Ocrevus, Yeager notes, isn’t a cure. “In fact, none of the 15 FDA-approved drugs for MS, which all modify or suppress the immune system, actually stop the disease. The drugs only reduce the number and severity of flare-ups and, in some cases, slow the visible marks of brain damage.”
Ocrevus “offers no relief for 30 to 40 percent of patients with primary progressive MS,” she adds.
I’m still hopeful about the drug and its efficacy, as is my neurologist, along with plenty of others. Yet my flare-up-free history feels like it’s flying in the face of the drug’s sweet spot, and I’m keeping my hope in check.
The same goes for biotin. I haven’t noticed any type of improvement and can’t say if it’s effective or not. On the other hand, who knows?
What Yeager’s article helped me better understand going into 2018 is that MS is an inextricable part of my life’s narrative and will probably always be. The sooner I’m OK with that, the better.
It’s possible, of course, that neither of the drugs will help me with the disease. It’s also possible that perhaps scientists and researchers will learn from why and how the drugs failed me and others and how they could be improved, and in doing so, take one step closer to figuring out “the most complex disease ever described.”
My experience with MS — good or bad — might somehow inform that.
That’s a narrative I can live with.
Happy New Year’s and best wishes for 2018!
This article first appeared in Multiple Sclerosis News Today.
According to a 2015 report, there are 43.5 million caregivers in the United States today, roughly 6 million more people than live in the entire state of California. And according to a recent column by Ed Tobias, caregiving can be a hard and thankless task.
You can help change that!
November was National Caregivers Month and of course, there will be lots of gift giving opportunities as the year comes to a close. But getting out, especially in the holiday traffic, can be tough, especially if you have mobility issues. That’s where online shopping comes in. Here are some ideas — most available at the click of a mouse — for showing your gratitude to those who do so much for you!
Sometimes, it’s the little things
Here are some “self-care” items from the New York Times Holiday Gift Guide 2017 that caught my eye (and that wouldn’t break most budgets).
Sockwell Elevation Firm Socks, $25. Comfortable, stylish and available for both men and women, these socks are made for people who do a lot of standing, walking and running around, making them perfect for your favorite caregiver.
Urpower 300ml Aroma Essential Oil Diffuser, $20. Featuring a nice clean design, this diffuser provides mist for up to seven hours while performing roughly the same as models four or five times its price, making it a nice gift for just about anyone (especially with winter’s dry weather coming).
Green Tea Water Bomb Mask, $7. Pre-loaded with a “hydrogel”, this sheet mask helps refreshen the user’s face, leaving it all tingly and glowing. That’s a lot of value for $7, plus it’s cool looking, too!
The write stuff
According to dailycaring.com, “Writing in a journal is a surprisingly effective way to reduce caregiver stress. Gifting them [caregivers] a beautiful or inspiring journal is a great way to encourage this therapeutic activity.” The site recommends the Instant Happy Journal as well as other journals found here.
Kick back and say spa!
According to Trip Savvy, a spa is “a place to receive massages, facials, body scrubs and other services in either a day spa or overnight setting.” In other words, it’s basically time devoted specifically to being cared for and pampered, making it an ideal gift for your caregiver.
Many nicer hotels offer on-site spas and if your budget allows, consider the gift of a weekend getaway with a spa for your caregiver. If you’re in need of care while he or she is away, consider professional in-home care while they are gone. And if your budget doesn’t quite allow, check your frequent flier points, hotel rewards and this list of great, affordable weekend getaways.
New to booking spa days or massages, or want to increase the chances of your caregiver having a great spa experience? Read this and this. And if you’re looking for a spa, try Spafinder. Just type in your ZIP code and the site will find spas (along with their ratings) near you. Buy your caregiver a gift card online, have it sent to your door and off they go!
Maid to order
Though these services may not be available everywhere, many house cleaning companies — especially the big, nationwide ones — offer gift certificates and gift cards with which to buy their services. Much like a spa day, who wouldn’t like someone else to come over and clean her house from top to bottom? No one, that’s who. No. One.
It may not be easy, but be sure to express your gratitude directly with a thoughtful note and/or a hug. I come from a non-huggy family, but have learned how good a hug from someone who cares can make me feel. According to the Good Men Project, here’s how to hug like you mean it, and here’s what you’ll both get when you do: “A hug is this fascinating human gesture that has us press another person’s body into our own as a way of saying, ‘I so deeply value your presence that I’m taking this exact moment to feel you, smell you, breathe with you – essentially stamp your being into my cellular memory so that even though we may be soon apart, you will in fact always be with me in the living fabric of my existence.’”
Now get out there and be grateful!
I have every single malady associated with MS. I’m absolutely positive. Because whenever I find out about new one, or a new study that says we don’t sleep well, or we twitch or tremble, or suffer from this deficiency or that, I’ve got it. Got it, got it, got it. Got. It.
Or at least I think I do.
Somewhere in my info stream I ran across a story (Multiple Sclerosis May Affect Ability to Read Social Cues) about how those who suffer from MS may have difficulties reading social cues and interpreting what others really mean in conversation. The story and report isn’t all that recent (June 2017) so I’m sort of late getting to it. But I’ve got multiple sclerosis and I’m pretty sure habitual tardiness is a symptom of it. Isn’t it?
I was kind of delighted by the story and the study because it could explain so much in my life and might be an indicator that I’ve had MS far longer than I suspected. Those times when bosses, coworkers, spouse, family and friends seemingly asked for my opinion and I then shared it? I’m beginning to suspect that they didn’t really want one, and if they did, that perhaps I misread the level of directness and diplomacy they were wanting. I think it is actually called the “curmudgeonly cue” and wonder if it’s not an affliction that affects a much broader base of the population, perhaps mostly writers and anyone over 50. A half-century of living or more will get that for you.
Most kidding aside, I’m not quibbling with the study or its findings, but I do wonder how much of this is related to the stress of toting around the disease of the central nervous system and never quite knowing what that disease has in store? How much of it is a subconscious decision to not waste time and effort suffering fools gladly? How much of it is just me being a know-it-all jerk? I can tell I don’t process information and situations as quickly or as well as I once did (and so can my wife, which seems unfair, as I am even more flat-footed and defenseless when we have a disagreement).
In a greater way though, I get more than a little bit of MS related content in my info stream weekly if not daily. Lots of times when I read about a new manifestation or symptom I think, “Oh, I’ve got this, too. Crap!”. I spoke with a woman with MS last week who suffers from the same thing and I’m guessing lots of others with MS do, too.
The hell of it is that sometimes we do suffer from these issues, though my gut suggests many times we don’t. Likely it’s just fear of the unknown, and I think we in the MS community can give ourselves some forgiveness around that. Most days I feel reasonably levelheaded about all of this, some days I don’t and sometimes the ongoing progression of the disease and how it is affecting me is frightening. But I think I can be my own worst enemy, too.
Because I am the only one who controls my info stream, I set the preferences, I create my echo chamber. The constancy of the input, the research and studies and possible cures can be hypnotic and alluring, and it can become all too easy to lose my self in it and become a sort of disability diva that’s all disease, all the time. And I’ve got to be bigger than that. Not just for my own good, but for the good of all of those around me who are trying to help, care for and love me.
Like everything about MS — and life in general — I think it’s a matter of balance. I want to be informed, but not overwhelmed or constantly panicked. The balancing is finding, reaching and maintaining that fine line. Many times I have to share that I have MS, but it doesn’t have to be, and shouldn’t be, an ever-unfolding blanket that suffocates the life out of me or those I care about.
Unless, that is, a study comes out reporting that people with MS are prone to being funnier, taller, thinner and better looking than the rest of the population. I’m definitely gonna want to get some of that.
This column was originally published at Multiple Sclerosis News Today.
Footwear and shoes and journeys have been in my info stream (and on my mind) a lot lately. First I stumbled onto a very fine column about shoes and MS written by Jennifer Powell (Exchanging a Sole for a Soul). Her essay resonated with me; like Ms. Powell, one of the early manifestations of progressive MS (and foot drop) I experienced was the weird inability to keep a flip-flop sandal on my foot (not enough “toe grip”). Which was a drag, because I had only recently purchased a nice leather pair — far nicer than any others I had ever owned, bought only because they were drastically marked down — and it was now obvious they would soon become obsolete, at least for me.
In a funny and powerful way, Powell’s shoes led to a cathartic experience and she shared what can be a sneaky benefit of MS: “Self-actualization came at a cost, the price being multiple sclerosis.” I’ll be honest — self-actualization prompted by MS is a work in progress for me, and I found the piece to be a very inspirational read.
Then came Searching for My Summer Sole Mate, a story on Slate about the pros and cons of shoe shopping with a podiatrist along with the podiatrist’s recommendations for smart summertime footwear. The long and short of that story is the podiatrist (shockingly!) recommends shoes with some structure and shares her current preference for Stan Smith sneakers made by Adidas. The tennis-playing Smith won two Grand Slam tennis titles in the early 1970s, quite an accomplishment, but not necessarily the stuff of legends (I’m old enough to remember him playing). The tennis shoe-Stan Smith, meanwhile, has had a longer lasting impact, selling 50 million pairs of the “saltine cracker of tennis shoes” by 2016.
The truth is my shoes and feet are never far from my thoughts. Progressive MS and related foot drop have transformed my right foot and leg into a slow-rolling, outward-turning, heavy mess. Shoes with any kind of stiffness or structure are hard to wear (my ankle rolls to the outside as does my foot, cramming my toes against the insides of my shoes). Plus, my balance is sketchy, so I prefer shoes with some give that let me “feel” the ground more acutely. A barefoot existence—at least where subzero winter temperatures are common—simply isn’t practical.
I own maybe 10 pairs of shoes, most either long-retired running shoes (my last run was in 2010 or so), a couple pairs of chukka-style boots and some general-use sneakers including a couple of old Nike Free running shoes that I bought to wear to the gym. Slowly I’ve retired most of my old shoes because they’re not comfortable anymore or don’t do enough to help me feel the floor, or both.
Two years ago I bought an ankle foot orthotic (AFO). Useful devices for addressing some of the effects of foot drop, AFOs also demand significant real estate inside the wearer’s shoe and seem really uncomfortable to me. When I was originally fitted with the AFO my orthotist told me I’d need to experiment with shoes to accommodate it, noting that I might need shoes 1/2 or full size larger to make wearing the device a bit more tolerable. Over time I’ve purchased newer, larger-sized shoes for use with the AFO, but now my right leg isn’t strong enough to lift the AFO anymore.
Somewhere along the line I repurposed an old pair of Nike Free shoes to wear in our garden where I wobble and try to water our flowers without falling down. Walking in the yard or dirt is especially hard and I customized the shoes by removing the shoestrings and insoles to make them easier to get in and out of, to make them slightly more forgiving and to heighten the tactile sensation between the bottom of my tingly feet and the inconsistency of the ground.
Like so many other lessons I’ve learned in my life, I’m kind of embarrassed by how long it took for me to see the obvious. About six weeks ago I purchased a new pair of Nike Free’s, hoping upon hope they’d help my balance and be comfortable enough to wear for long stretches of time. I’ve barely taken them off since I received them; in fact, all of the recent content around shoes and footwear has come while I await a new, “dressier” pair of the shoes that might be slightly more appropriate for “business casual” wear.
By no means am I recommending anyone run out and buy this shoe or that, and I sure don’t receive compensation from Nike. Only that MS — for me anyway — is a constant battle, but one that does yield victories and benefits and some very real silver linings.
As Powell aptly notes, “Upheaval in life is inevitable, but until you meet it with an openness to change, stagnation will perpetuate. I was ready for change and the shoes were but a symptom, the multiple sclerosis the storm. Amid the deluge, I stood still. I let my vanity wash away and intrinsically felt whole. I felt both a sense of calm as well as the desire for action.”
The truth is, with or without MS, we’re all on the same journey in life in so many ways. How we take it is up to each of us. I’m just grateful that for the time being at least I’ve found the right shoes to wear while I’m making mine.
Note: This column was originally published at Multiple Sclerosis News Today