I can feel it starting as I lay there in bed. A full leg cramp is coming on. In a few seconds my right leg will become rock hard and unusable.
Fortunately, there’s little pain; it’s more just a matter of discomfort. It also helps that these leg cramps pretty much just happen when I’m in bed. Typically, I’ll have five or so cramps each night, usually just after going to bed and then when I’m waking up.
I hide these cramps from my wife as best I can (as I do with any physical issues I have with MS). I’m not being dishonest with her. She knows about the cramps and everything else that involves my MS. Before we got married two years ago I even had her speak with my MS doctor so she fully knew what she was taking on in my having MS. Fortunately, she looks at the glass as being half full (i.e. focusing on what we can do together rather than on what we can not do together).
Nonetheless, I try to make my MS issues be as unobvious as I can. I don’t want to look infirmed in some way. Infirmed is not sexy.
Now an occasional leg cramp is hardly “infirmed”. But that’s just the start of a list of MS symptoms.
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By far the most frustrating MS symptom I have is what’s called dropped foot syndrome. It never goes away. It only gets worse over time (as with all my MS symptoms). For me, it’s my right foot that “drops”.
A dropped foot means your foot “drops” when you walk. What happens is your toes drag the ground as your leg swings forward when you take a step. Your mind is telling your foot to pick itself up. But your foot just doesn’t fully respond. Your toes are pointing down a bit such that they’ll catch on anything that’s not totally flat on the floor and trip you.
But calling it “dropped foot” only partially describes the condition. More broadly, having “dropped foot” feels like your foot is attached to your leg with a loose ball and socket joint that you have little control over. In other words, your foot mostly just dangles. it’s not just a matter of your toes dropping (front to back). Your foot can flop sideways also. For example, I wouldn’t dream of jumping up in the air even for just a few inches. I’d be afraid of landing on my “bad” right ankle sideways and breaking it.
This “dropped foot” condition is how I first knew I had a problem (some ten years ago now). I went out for a jog and I kept tripping on every little damn crack in the sidewalk. I ignored it at first. But after a few months (and a fair amount of my skin being left on the pavement) I couldn’t ignore it anymore. I went to the doctor. After two years (and seeing some six doctors) they finally figured out I had MS. MS is not an easily made diagnosis.
This tripping has gotten worse over the years. A bit over a year ago I managed to break three toes even though I was just walking on a smooth carpet inside. What happened is I was walking barefoot. I took a step with my dropped foot and caught my toes on the carpet. The toes curled under my foot as I landed with all of my weight. That one hurt.
Fortunately, wearing a foot brace helps my dropped foot syndrome. I actually wear two braces. One is just a standard ankle brace (mostly helping with lateral support). The other one is a cleverly designed simple device (called Foot-Up) that — you guessed it — holds my foot up. The heart of the device is just an elastic cord that goes between my ankle and my shoe (thus holding up my foot). The elastic cord is held in place by an ankle wrap and a small plastic device that goes under your shoe laces. The elastic cord snaps into place between these two holders. … But the braces are not a cure all. I can still trip.
Also helping a bit is a drug (Ampyra) that helps lessen the dropped foot syndrome. I started the drug three years ago. At first it helped quite a bit. But now I’m back to where I was. I don’t know if I’ve built up a tolerance to the drug or if my MS has just gotten that much worse.
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But “dropped foot syndrome” type problems are not just limited to my foot. I have similar problems with my whole right leg. My leg is weak and spastic (i.e. uncoordinated).
I could almost win a patent from the Department of Funny Walks (referring to an old Monty Python comedy skit). When I walk I pick up the whole right side of my body so my right foot can safely clear any hazard.
My “bad” right leg, aside from giving me a funny looking walk, has more direct undesired results. For example, if I’m walking by something (like a chair) I often accidentally kick it. What happens is my “bad” right foot and leg both flop out sideways by a few inches as I’m walking. That’s enough to catch the chair with my foot. It’s a little weird. My mind is telling me I gave the chair enough room to easily walk by it. But it’s false information. I kick it.
But the most serious problem with my “bad” leg is how it makes it hard to catch myself if I trip. Normally, if you trip you quickly put your leg out to catch yourself. My right leg just doesn’t shoot out quickly. It tries. But it’s slow and weak.
The worst incident I’ve had so far was when I tripped and took my wife down hard when I went over. I was walking with her on what looked like a smooth sidewalk. But one cement slab was slightly slanted. When I stepped on that uneven slab with my “bad” right foot my ankle unexpectantly rolled under me. In an instant I went flying down to the ground on my right side. My “bad” leg couldn’t move quickly enough to catch me. Nor did my “cane” (a rolled up umbrella) do any good.
Unfortunately, my wife was right where I went falling down. Worse, she saw me going down and turned towards me to try and help me stay up. She took a direct hit just above her knees. It was as if I had made a hard football tackle on her (and I weigh almost twice as much as her). Everyone on the sidewalk immediately ran to her aid. A car going by on the street even screeched to a halt and the guy jumped out to see if she was all right.
She wasn’t alright. She ended up in the emergency room with what at first was thought to be a broken ankle (but was “just” a severe sprain). It’s amazing how much an ankle can swell up to the size of a grapefruit and turn all sorts of colors.
To wife’s great credit she never got mad at me for hurting her so badly. She’s rational enough to know that it was just an accident. But yikes! I almost wish she had unloaded on me. I’d then have at least felt like I was properly punished for having hurt her as badly as I did. Making me feel even worse about it is that I only had a slightly sprained ankle from my fall (and no skin abrasions). And that was in large part because she had cushioned my fall so much. Yikes again.
At any rate, per my suggestion, she now usually walks with me on my left side (the side of my “good” leg). If I trip (or roll my bad ankle) I’m probably going down on my right side. So stay on my left.
Using a cane can also help. A cane — especially a real weight bearing cane (not an umbrella) — gives me better balance and thus helps prevent falls. A cane also lets me walk with less of a lurch. But I don’t like using a cane because I think it it makes me look like an old man. Hmmm … pride vs. practicality. I should let practicality win out. I more and more am.
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Another frustrating MS issue I have is lessened hand dexterity. It’s just a problem for my right hand (going along with my right sided bad leg and foot). The symptoms are similar to dropped foot syndrome. Basically, my hand flops. I have limited control. You’d think I was doing a bad imitation of a gay person the way it flops so much.
I used to enjoy using chop sticks and prided myself on being able to easily pick up individual grains of rice. That’s impossible now. I can’t even pick up a whole piece of sushi. I’m better at chopsticks with my left hand but not good enough to eat a whole meal going lefty. So I (embarrassingly) ask for a fork whenever we go out for sushi. So much for being sophisticated Mr. Cool.
It’s not even that easy to use a knife and fork anymore either. Utensils too easily just fall out of my right hand. As a result, I’m more and more going lefty. If I need to cut something tough I’ll use the knife in my right hand like a four year old (with all four fingers wrapped tightly around the handle) and then saw back and forth. This lets me use a knife without it coming out of my hand. It looks like no one taught me good table manners. But what the hell. It works.
Also a problem is trying to button my collar button on the occasion I have to wear a tie. I dread it. It’s amazing how much dexterity you need to do it. When my wife isn’t around I’ve even had to leave it unbuttoned and then find someone I know to button me up once I get there.
And a last problem from having less dexterity in my bad right hand is I write much more slowly now. Typing is also slower (fortunately not as bad off as my handwriting) and more mistake prone.
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The above physical symptoms limit what I can do for fun (and exercise). I can’t jog anymore (something I used to really enjoy) much less play the occasional round of tennis. Nor can I play basketball anymore (not even h-o-r-s-e). With my “bad” right hand it’s hard to even hit the backboard with the ball from just ten feet away. I used to have a decent shot.
Nor can I go on any kind of hikes involving rough terrain. If the path isn’t reasonably smooth (few roots or rocks) I’m simply unable to walk it even with a cane (or as I prefer to say, a “walking stick”). I’d just fall down at some point.
Up and down terrain is also a real challenge. Going uphill is difficult because I can’t easily pick up my right leg (and my dropped foot then more easily trips me up). But in going uphill I can at least easily catch myself with my hands if I fall.
Going downhill is harder and far more dangerous. If I trip going downhill I can’t readily catch myself with my hands (the distance before you hit the ground is much farther). My bad leg also has even less of a chance to catch myself. The result is I could take a serious fall. So far so good though.
The same problems I have in walking up and down hills applies to steps. Going down steps could also lead to a serious fall. Thank god for hand rails. They’re essential.
But MS limitations on what I can physically do still leaves a lot. I can still work out at the gym. Elliptical cardio exercise machines are a big help (you don’t have to pick up your leg or foot). I can also play golf. An electric golf cart makes it doable. I can even walk a short (and flat) par three nine hole course if I use a push cart to hold my clubs. A three wheel push cart makes a half-way decent walker. Using your putter as a cane also helps (just take care to not to dig the handle it into the green).
(That’s me on the golf course. MS, while a pain the ass, doesn’t stop you from doing things you enjoy, not all of them anyway.)
Now if I could just break 100 in golf as I could back when I was a young teenager … But no excuses. Hell, a month ago I played golf with a one armed 70 year old guy who was randomly added to our group to make a foursome. He shot in the upper 70’s and out drive everyone. Just amazing. (2017 update: I usually break 100 now. Hope to do even better.)
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But the frustrations that come with having MS aren’t just physical. There are also psychological frustrations.
I worry a bit about where I’ll physically be down the road. MS just gets worse with time. My type of MS — primary progressive — is a more rare type of MS (often cited in the press as the worst kind to have). My symptoms never go away. My type of MS just steadily gets worse (hence the term “progressive”). The more common type of MS (relapse-remitting) can fluctuate quite a bit on a day-to-day basis (but still the secular trend is it gets worse).
MS can affect people in so many different ways. It all depends on what nerves the MS damages. Some have MS so badly that they end up in a wheelchair. MS can even cause blindness. Others have considerable pain from MS. More commonly, people with MS are easily fatigued (I have a touch of that). Another common MS symptom is “fog brain”. I want none of the above thank you very much.
Another back of the head worry I have is concern about how much my MS could harm my marriage. Let’s face it; having MS makes me less “fun”. Also, my wife sometimes ends up being in the role of a nurse to me. For example, with no fanfare, she automatically helps me down stairs that don’t have a rail. (She goes down one step ahead of me and lets me put my hand on her shoulder for balance.) That’s a big help and most certainly appreciated. But still … a “nurse” role? I’d prefer being such a robust guy that she is physically drawn to me on a primal level.
Another latent worry is if (when?) MS will make me unable to safely drive. My right leg reacts more slowly (and its only getting worse). I often assist my right foot on the brake by also using my “good” left foot on the brake to make sure I stop. Also, my “dropped” foot doesn’t let me smoothly push on the pedals. As a result, my wife usually does the driving. Hmmm … “nurse” role again.
But I still have to count myself lucky. I really do have a relatively mild case of MS. My MS is also not that noticeable. All that people see is a little bit of a limp (and my ankle brace if I’m wearing shorts). It’s all mild enough looking that people often feel free to ask “Oh, how did you hurt your ankle?”.
Also to the good is that the progression of my MS is remarkably slow. As a result, I don’t really notice it getting worse. I mentally get used to whatever the current status is with my MS.
And besides all that, it is what it is. Why take yourself away (mentally) from enjoying all the good things in life by spending your time being a worry wart?
That doesn’t mean I’m Pollyannaish about it. I try to also make things turn out for the better. I keep myself in decent shape. I also do some volunteer work in order to stay involved. Further, I don’t let my day-to-day conversations be about my MS ailments. If you’ve ever been around a relative who never stops complaining about their bunions, hemorrhoids, or whatever you know just how much such a self-centered conversation is a real put off.
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Another issue I have with MS is how to handle people’s inquiries about my limp. It can be problematic.
My response has evolved to saying this in response: “I have a mild case of MS and it gives me a bit of a limp.” That reply is honest, short, and tends to close out further conversation. I think that’s a better response than when I used to say “I have a leg issue”. That response just seemed to invite more questions (invariably, “what’s the issue?”).
But even my “I have a mild case of MS …” reply can sometimes be a real problem. For example, I was recently at a large party. A nice white haired lady (seeing the brace I wear on my ankle) asked me what I did to my ankle. I gave her my standard response (mild case of MS). She immediately (a bit too loudly) said how she was sooo sorry and went on to say how she had a relative who had died from MS. She went on to add awful sounding details.
This conversation (more of a monologue on her part) was in front of some dozen people sitting at the table including my wife. I couldn’t get her to stop. Even when I assured her (loud enough for the table) that people don’t die from MS (as my expert doctor has told me) she went on at great length to tell me I was wrong.
I found the conversation very painful. The thing is she was a perfectly nice lady and well intentioned in her concern for me. But she was just clueless (not just about MS but also socially). As far she was concerned, all MS was the same and it was basically a death sentence (and I was thus someone to be pitied).
I really don’t have a good answer for how to deal with such situation. I guess I’ll just have to be glad it’s a rare occurrence. And it helps for me to remind myself that the concern people show (even if off base) is coming from them being a caring and empathic person. But that doesn’t preclude someone from being a social idiot (in not knowing when to just shut up).
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But not having my MS be that obvious can be a double edged sword. The fact that I look fine (just a bit of a limp) lets most people largely dismiss my having MS as mattering. And usually that’s just fine with me and is how I prefer it.
But not having my MS difficulties be that obvious can also work against me. Take the case of my divorce five years ago. Having MS should have been at least a little bit relevant to my divorce settlement. After all, MS can affect one’s future earnings ability and will most certainly increase future medical costs. The relevance of the above (to a divorce) is that I would have less money going forward to pay alimony (as indeed has been the case). Further, my MS arguably cast me in a sympathetic light to the court given the coincidence(?) that not long after I was diagnosed with MS my wife chose to divorce me.
But visual “data” (my looking okay) apparently overrides all else (even a letter from my MS doctor). I had to pay out a large settlement in my divorce (a nine year marriage with no children). The one time I could have used my MS to actually be of help to me was a total strike out.
An example helps to show how the dynamics worked. I told our divorce mediator about how the last time I had traveled into N.Y. City the “dropped foot” from my MS had caused me to trip on the stairs coming up from the train platform. I tripped despite being as careful as I could. I ended up sprawled face down on the floor with my papers flying everywhere. My point was that any job that would involve commuting to work (by public transportation at any rate) would be difficult for me. … In response, the mediator just laughed. He “jokingly” said how he trips all the time himself. I felt mocked and my having MS trivialized.
Now arguably the mediator’s perspective was valid enough. After all, if I can still drive and play golf I can also work. But, given how he just laughed my MS off I know he didn’t have any kind of real understanding of the difficulties that stem from MS.
And the judge had a similar view of my “so-called” MS difficulties. I suppose I can understand it. It’s hard to feel but so much sympathy for someone who looks just fine (again, just limping a little) and thus seems to only be crying wolf about their physical difficulties.