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One of the most fascinating things about MS is that it reveals a lot about those who don’t have it. When I tell someone I have MS, their response (or lack thereof) tells me about all I need to know about them and my relationship with them. (I could have sworn I’d written a whole post about this topic, but I can’t find it. Oh, well, why not do it anyway?)

Another revealing aspect of people’s reactions to MS (and the disabled in general) came up recently in a conversation I had with a friend of mine. She generally uses assistive devices of one kind or another to get around. Depending on where she’s going and what she’s doing, she might use a power scooter, a wheelchair, or a walker. It turns out that, when she’s out in public, people have different reactions depending which apparatus she’s using.

The walker, my friend tells me, arouses pity more than anything. She sees it in their eyes: “Better you than me.” After all, who would use a walker unless it was absolutely necessary? She gets the most positive reactions when she uses her wheelchair. People smile and help as if, as she puts it, they’ve taken sensitivity training.

No such kindness is demonstrated to her when she’s in her scooter. Maybe it’s the way they’re marketed or how they’ve been used as jokes in popular entertainment such as “Seinfeld”, but people resent them. The expressions my friend sees send the message, “You don’t really need that thing.” People in scooters are viewed as lazy, some kind of freeloaders who don’t want to pull their weight.

Comparing notes, I’ve confirmed what she has observed. The only assistive equipment I’ve used are a cane, a leg brace, and an FES device, but each brings forth its own set responses from observers. The cane is the most benign. I’ve had people nearly start crying at the sight of it. Others insisted on helping me, even when I didn’t need or want it. The orthotic leg brace (*that’s the picture above, though it’s upside down to make identifying it more of a challenge) freaks people out. Most have never seen such a beast and can’t figure out what it’s for. And they never ask.

The FES device is a great conversation starter. No one wants to talk about why it’s needed, but the technology is so cool, it always draws comments. Are you a cyborg? Part of the Collective? (Resistance is, indeed, futile.)

If I didn’t want to deal with those reactions, the only alternative was to wobble around like a Weeble (except we do fall down) and let everyone think I was drunk. That can have its upside unless I’m driving. :-O

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The Doggy Poopy Fairy has left the building

IMG_20171019_154008716I ride my bike. A lot. As I’ve said countless times before in this blog and to my long-suffering friends, it’s a major part of my MS and emotional therapy. I often ride on bike paths, which I share with a diverse group of citizens: joggers, rollerbladers, skateboarders, parents pushing strollers, couples holding hands, elderly folks out for their daily constitutionals, and dog walkers, among others. I enjoy seeing all of them out there. Each one adds a community aspect to what I already consider to be an exhilarating and enjoyable experience.

But I need to talk to you dog walkers for a moment.

Sorry guys, but I can’t think of many things more disgusting than picking up dog poop, even with the semi-sterile inside out baggie method.* But it must be done. To your credit, most of you are good canine fecal stewards.

Unfortunately, some of you do only half the job. Yes, you do the dirty deed, but then you leave the little baggie on the path! For what? For who? I have news for you: The Doggy Poopy Fairy has retired. (And, yes, you do have to use the word “poopy”.) He no longer cleans up after you partially clean up. He’s no longer leaving little prizes under your pillows in return for Fido’s fetid feces.

The result is that my bike path is decorated with the most offensive ornamentation imaginable. The bags, which come in many cheerful hues, sit at the side of the path, adorn guard rails, and even, in a truly festive gesture, hang from tree branches! Fun!

IMG_20171019_154042357

What’s the point? Honestly, is stepping on a bag full of dog doodoo any more pleasant an experience than stepping on the free-range version? Unless one is at that moment barefoot (heaven help you if you are) I say the answer is no.

I know you don’t want to carry crap around with you. Who would? (Although most of us do so in the metaphorical sense.) But it’s all part of the process: You package it. You oughtta ship it.

Do us all a favor. Finish the job to its logical end. (Pun intended.)


* One thing more disgusting was the lady I saw who wiped her dog after it defecated. In public. In broad daylight. On a busy main drag. Yikes.

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Just say, “No, Doc.”

I’m my parents’ son, but it’s a different world today than the one they lived in. My parents came from a place where the doctor knew what he (back then it was a man, more often than not) was talking about and they did what he said, no question. He had the white coat hung on his shoulders, the diplomas hung on the wall, and the stethoscope hung around his neck. He knew best. They were like poor Brian Regan at the doctor.

Although I’m the child of my parents, I’m also a child of the 60’s. We learned to question authority, including doctors. The arrogance and god complex of many medical practitioners has hung in there long after they stopped prescribing bloodletting and Radithor. Here are a few real life examples of the arrogant behavior that gives me pause:

Doctor: “Don’t eat anything on this list.”
Patient (pointing to a confusing entry): “Why is this on the list?”
Doctor: “Just don’t eat any of them.”

Patient (on being diagnosed with MS based solely on a single MRI): “I thought an MS diagnosis required multiple symptoms?”
Doctor: “I know what I’m doing. I’ve been doing this for 30 years. You fit the profile.”

Doctor: “No more trips to Haiti.”

Doctor (to patient in wheelchair): “Why don’t you have a power chair? I guess you just like to be pushed.”

Dermatologist: “Put on SPF15 sunscreen every day. And if you go outside, put on SPF 30.” (Sunscreen indoors? What world are you living in, Doc?)

Neurologist: “MS doesn’t cause pain.”

Neurologist: “MS isn’t the cause of your clumsiness.”

Doctor: “You can’t disagree with me.”
Patient: “Why not?”
Doctor: “Because I’m the doctor.”

It doesn’t take many encounters like those before the naiveté of my parents melts away altogether, replaced by the cynicism I now subscribe to.

Never has there been a better reason to question doctors as there is when dealing with MS. They’re just flailing away at this beast the same as the rest of us. As my doctor once said, “MS keeps you humble.” (That’s why she’s my doctor.)

I remember standing up to my (former) neurologist. I’d been on one of the interferon drugs but had developed the nasty NABs (neutralizing antibodies). Who knows how long I’d been plunging  a needle into myself for no reason? This being before the advent of oral meds, my options going forward were limited:

Tysabri – Hmmm… It kills about 1 in 1000 people who take it, 1 in 100 with certain risk factors. Yeah, I think I’ll pass on that one. I don’t like the odds.

Copaxone – A shot every day? Not sure I want to lower my quality of life that much, thank you very much.

That’s when I dropped out of the DMT scene. By the time newer, less perilous options became available, I was doing so much better under my PB&J regimen, I decided to stick with that.

The lesson here isn’t (necessarily) to give up the drugs, it’s to stick up for (not just stick a needle in) yourself. Don’t be bullied by doctors, the medical establishment, or advertising. It’s your right (dare I say responsibility?) to ask questions. You know your body and your condition better than any doctor. You are your own best advocate.

If you don’t do it, who will?


It’s safe to say that this blog will never get an endorsement from pharmaceutical companies or MS organizations with such counter-cultural views, but I have to practice what I preach: Advocate for myself. If someone else is helped, so much the better.

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MS Years

I ate lunch today at one of my favorite local spots, Cafe 12. Great food, great desserts, and the best apple turnovers I’ve ever had. And that’s saying something. It’s also a cool place to linger for the purposes of conversation or writing.

I was with a relative from out of town who asked how long the cafe had been around. Amazingly, it’s been four and a half years in a location that had previously been a black hole for food purveyors. He commented that, the restaurant business being what it is, its age was equivalent to about 75 human years. That’s a perfectly apt comparison.

When I got home, my inbox contained an email notification that the very-young-looking-for-her-age Yvonne deSousa had just published a new post in her MS blog. In that typically clever post, she comments that her “body feels like it’s aging at the rapid rate of two years every day”. That figure might be an exaggeration, but the sentiment is right on.

Having MS virtually speeds up the aging process.

Look, you’re gonna lose your vision, your strength, and your bladder eventually, but MS pushes you into it a lot sooner than anyone would expect or desire and usually faster than we can mentally and emotionally adapt to it. You’re fully justified in feeling cheated if, unlike me, your world view contends this life is all there is.

To make matters worse, the process can’t be accurately quantified because it isn’t consistent across the disease’s targets. If you want to find the human equivalent age of an animal such as a dog, cat, or iguana(!), you can use a handy chart like the ones on these pages. (It turns out that the classic 7 dog years to one human is a myth. Who knew?)

Not so easy with MS. One person in a progressive stage might advance a decade in a single year, while someone with a more benign course might add no more than a couple of weeks in the same span. And that could change year to year. Heck, it could change day to day, person to person! It all brings to mind something I wrote previously:

…to paraphrase the immortal Joaquin Andujar, MS can be described with one word: you never know.

That statement feels as true to me now as it did when I wrote in one of my first posts over seven years ago.

I don’t know what that is in blog years.


(NB: Cafe 12 is not handicapped accessible. As an advocate for accessibility, this annoys me. Under normal circumstances, I’d avoid a place like this but I know it’s not the owner’s fault. Her landlord doesn’t want to make the investment. I don’t want to punish a quality local business because of a landlord’s greed and insensitivity. Besides, I’m hooked on the apple turnovers.)

 

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One more thing I hate about you (MS)

There are plenty of reasons to hate MS. No need to go into all of them here. If you have MS, you know. If you don’t have it, you don’t want to hear about it. Anyway, I’m not sure there’s enough space on the internet to note everything bad about MS. But I want to write about just one more.

Doesn’t it stink that some of the triggers for MS attacks are also symptoms?

It just ain’t fair. Think about it:

MS is a very stressful disease. Worrying about the future. Battling insurance companies to get coverage for tests and meds and all that other crap MS requires. Anxious about money problems caused by all the simoleans you gotta spend to pay for all that crap insurance doesn’t cover. Worried you’ll look like a fool tripping and/or peeing your pants and/or dropping your coffee… And what does all this stress do? You got it: It brings on another exacerbation.

MS loves to cause UTI’s. It seems every person with MS gets one at one time or another. So what happens? You run a fever. What does that do? Puts you flat on your back until the temp comes down.

Involuntary body movements or spasms, often in the legs, sometimes painful, are a common symptom. I don’t know about others, but they get worse as the day wears on. By bedtime my leg (or legs) is so out of control I look like Elaine Benes trying to dance. What are the odds I’m going to fall asleep in that condition? Yeah, somewhere south of zero in a million. So I don’t sleep well. So in addition to being fatigued by MS, I’m wiped out from lack of sleep, which of course can… say it with me… cause an MS attack.

This was driven home when I read a paper from an MS meeting. It said:

Severe cognitive fatigue and anxiety were found to have an effect on MS patients’ visual learning. Specifically, cognitive fatigue had an effect on visual learning, such that cognitive fatigue had a significant effect on Trial 2. When controlling for severe cognitive fatigue, anxiety had an effect on patient’s learning for Trials 1,2, and 3. Anxious MS patients and those with severe cognitive fatigue on average scored lower on all three visual learning trials than those without the aforementioned symptoms.

My MS-addled brain has all sorts of problems trying to parse that message, but what I deduce from it is this: Anxiety, fatigue, cognitive problems, and learning are all wrapped up in this incestuous relationship that’s just one of the factors that make MS so “interesting”.

I didn’t need a study to know this. I experienced it aplenty in my work life. Sitting in a class trying to learn a new technology, I’m not sure which was the most dominant problem: the fatigue, the failure to understand, or the stress at knowing I couldn’t learn the stuff I needed to do my job. In the end, it was a dead heat.

I got so stressed, I… I forget.

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It’s not easy (or cheap) being green (or good)

`I try to do right as much as possible. Call me old-fashioned, but I believe there are some things that are “right” and some things that are “wrong”. That puts me out of favor with popular culture, but I’ll keep dancing with the dinosaur, as Steven Curtis Chapman sings.

One thing that’s right is reducing our footprint on this world of diminishing resources. So I recycle (only after refusing, reducing, and reusing, of course). That can be a hassle and it can cost a bit more to buy recyclable products*, but it’s worth it for the sake of my children and grandchildren. That’s another belief that has fallen out of favor: Living for the benefit of future generations. It flies in face of the Veruca Salt culture in which we live.

It’s also not cheap to eat well. All the MS diet advice we get involves consuming organics and specially processed (or unprocessed) foods that are more expensive and harder to come by than the run-of-the-mill offerings at your local grocery store. So you race around to Whole Foods (not called “Whole Paycheck” for nothing), Trader Joe’s, and farmer’s markets to get the Good Stuff. Just one more way MS is an expensive disease.

Yup, doing right for yourself or others eats up more money, time, and energy. But I wouldn’t want it any other way. Doing good should involve sacrifice. (Ask Jesus. He knows first hand.) One of my favorite stories in the Bible is a brief episode about King David buying some land from a guy so he can make an offering to God on it. In a blatant attempt to suck up to the powers-that-be, the land owner tells David he’ll give it to him for free. David wants no part of the deal. Instead of going for the freebie (as most of us would), he responds:

No, but I will buy it from you for a price. I will not offer burnt offerings to the Lord my God that cost me nothing.

David gets it. If he gives something that costs him nothing, he’s giving nothing. It’s not the thought that counts, it’s the sacrifice.

Do good because it’s good, not because it’s easy.


*  An excellent case in point is the ubiquitous Styrofoam. It’s almost impossible to avoid and even more difficult to recycle. And it’s forever. Why are we still making/using this crap? And what am I supposed to do with it?

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Bag the bags

[The worst thing a blog can become is a vehicle for venting. Nobody wants that. Occasionally, though, I have to let loose and channel my inner Andy Rooney. Sorry.]

What’s the deal with all the bags at grocery and other retail stores? Yesterday I bought a quart of milk in a plastic bottle at a convenience store. (Wicked convenient. I can walk there.) The guy reaches for a bag to put it in.

Let’s be clear: These bottles have handles. The handles are for carrying. Why on earth would I need to put it in a bag? Some bags don’t have their own handles, so they’re actually counterproductive. But even a bag with a handle is superfluous. I’ll buy a bag of chips and they want to put it in a bag. THE CHIPS ARE ALREADY IN A BAG!!! I don’t even want to think what would happen if I bought a bag. They’d want to put it in a bag.

Get a grip.

I’ll be in line at the grocery store. (It should come as no surprise that I have my own reusable bags.) The person in front of me has six items and the bagger puts them in four different bags! How can that possibly be justified??? Even one item per bag isn’t unusual.

Like the woman in front of me who bought a single roll of Scotch Tape and insisted she needed a bag to put it in. She had a handbag the size of the Hindenburg. I closed my eyes so I wouldn’t see her stuff the tape, bag and all, into the blimp. Oh, the humanity.

So our landfills get choked with plastic grocery bags, which never (as in, never) break down. Do any of those people with the bags have children or grandchildren? What kind of world are you leaving them?

It’s time to bag the bags.

There. I feel better now. Even though the problem still exists. Blame Andy Rooney.

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