LDN for MS

2/22/13

Update and Cannabis

Just an update, although there's really not a lot to report. In a nutshell, I'm about the same. Just older (62) and tireder.

My pal Cindy sent this card for my last birthday; it still cracks me up!

I was diagnosed with MS in 2003, ten years ago this summer. I still don't have progressive MS, and am not much worse than I was 10 years ago. I developed chronic labyrinthitis during a period when I wasn't on LDN; I had been on it but ran out and couldn't get it refilled due to a fax problem at my doctor's office, and that was the first new symptom that came up since diagnosis.

What's next?

I wouldn't try to guess what to expect in the future, but I assumed MS would have me more screwed up by now. I mean, I never really thought forward about potential new disabilities, but if I had, I would have expected a good bit more drama than I've dealt with so far. I'm really not doing too badly at all. If my spine wasn't collapsed like a freaking train wreck, I'd be WAY closer to fine. As it is, I'm hanging in there, still enjoying my life but in a mild kinda way, and don't really think that much about MS.

I have the same general MS symptoms I've had for years; memory problems (including an almost total inability to multi-task), difficulty walking distances without support, chronic (but now very mild) labyrithitis, and nocturnal leg cramps, the latter of which might or might not be from MS.

I take K+ and Magnesium for the leg cramps and sometimes a common ancient herbal remedy and I do fine, at least, as long as my lower legs don't get too cool; a heating pad or hot water bottle on cold nights does the trick. I have really bad insomnia anyway, so controlling the leg craps and spasms has been essential.

Treatment-wise, I'm still on LDN and nothing else just for MS, still getting it from The Compounder Pharmacy in Aurora Illinois. I take a few OTC things which I'm now getting from amazon.com for MS symptoms like urinary retention; I've been taking 2 capsules of D-mannose twice a day for a few years now, at the suggestions of both my dear old Family Doc as well as a urologist I consulted once. D-mannose prevents urinary tract infections- it works perfectly for me.

I also take one 25mg promethazine tablet, a cheap generic prescription item, every morning for nausea, which comes with my chronic labyrinthitis. And that helpful herb, when I'm lucky enough to find some.

By the way, I'm not recommending all this stuff, I'm just telling you what I'm currently taking.

My dizziness and nausea are very minor compared to the acute stage, but I do get terribly motion sick in anything that moves. I can't even ride in a scooter in a grocery store because looking at stuff on shelves as I move long makes me sick, quick! But that goes back to childhood for me.

To be clear, some of my mobility issues are due to a spinal injury that has nothing to do with MS; my back problems predate the MS by years; I already had a walker and a small collection of canes before my first MS symptom. And some of the symptoms overlap, like numbness in the legs and weakness; severe multilevel spinal stenosis had already caused that so I don't know if MS is adding to it or not involved at all.

MS sucks, but other things, like spinal stenosis, suck pretty hard too.

Almost 15 years after the initial injury and my spine isn't any better, so naturally I have some issues getting around. But the MS does cause me to walk kinda funny on top of the spinal stenosis neuropathies; my back injury prevents my from straightening up fully when standing, but MS makes me walk funny. Slightly. I don't know how else to explain it

Not Ministry-of-Silly-Walks funny, but my gait definitely isn't normal anymore.

However, I'm still walking, just not very far because of increasing back pain and numbness when I stand, and I don't walk unaided except around the house.

MS makes it more likely I'll stumble, and my inner ear problems make it less likely I'll be able to recover my balance in time to prevent a fall, so I did fall twice this past year. I'm old enough that falling down is kind of a big deal. In fact, I'm still sore from falling last March, a solid year ago; I tripped over my own feet and landed on my side with my arm extended, so basically I landed on my armpit, and managed to hurt both shoulders. Oh well, live and learn. I pitched out the ill-fitting slippers I was wearing that contributed to my second fall and I just move more carefully.

To that end, I use my walker a lot more. It's a 3-wheeled walker with a big pouch and a basket. I've had it since 1999. I can cruise around the larger expanses in my house pretty easily using the walker; I feel safer and move faster and more efficiently with it, even though I don't need it for short distances. It's just easier with it, as long as there's room for it to pass. It has lovely big tires that can take bumps and uneven surfaces really smoothly and safely.

So far I can still manage to walk through a grocery store or Home Depot if I use the cart like a walker; as I walk, I'm leaning heavily on my forearms on the cart handle. I have to move through the store pretty quickly, to reduce the amount of time I'm upright and therefore the amount of back pain. Unfortunately, I can't use a scooter in a store because looking at merchandise on the shelves while moving forward makes me very motion sick; but that's not just an MS thing; I've been prone to motion sickness all my life.

Cannabis as illustrated in Köhler's Medicinal Plants book [1897], courtesy Wikipedia.

Cannabis also helps many of us with MS as well as people with chronic pain symptoms, by reducing pain, stiffness and cramps, and taking the edge off dizziness and nausea.

It doesn't always help everyone, but in general, marijuana can help you sleep, it can help you relax, it can sometimes help you focus; marijuana can help so many things but again, it doesn't effect everyone the same way. It can make some people temporarily but miserably paranoid, it definitely messes with your short-term memory, and absolutely should NOT be used before driving because it can impair judgment.
Unfortunately, I don't live in a State with legal medical marijuana and can't possibly afford to relocate to a place that does. I am stuck here in dumbass red Texas, where there will probably NEVER be approval of medical marijuana! Heck, we're lucky to get to just walk around in public without a special permit here.

Sorry to vent, but it's just so frustrating. I'm expected to either just suffer or be a criminal, a perfectly ridiculous position for a nice, peaceful 62-year-old disabled lady to be in. I don't want to be a criminal; I just want to be able to buy and take my freaking medicine without spending a fortune and without risking prison!

Doctors used to prescribe this all the time

The fact is, cannabis has been used legitimately as medicine for over 2,700 years; it only hasn't been considered medicine for about the last 75, thanks largely to competing financial interests, NOT health concerns. [Google "William Randolph Hearst and marijuana prohibition" and you'll get a perspective on why it was prohibited in the first place.]

Fortunately, some states are moving back toward a more sane approach to marijuana use, but, not surprisingly, NOT Texas. Heck, Texas is moving backwards so fast we'll soon be required to teach an alternative to the "theory" of a heliocentric Universe...

From my 9th great-grandfather, Sir Thomas Digges' book, "Sonne" in the middle, see?

So what specifically is pot supposed to do for MS, medically? Well, for me it has eased pain and spasticity and has helped greatly with depression, anxiety, and insomnia. The major downside is financial, because the prohibition makes it very hard to get and silly expensive.

That's about it, enough redundant rambling. If you don't see new posts for awhile, assume I'm status quo :o)

10/15/11

Cool is cool

I gripe a lot about heat intolerance, a symptom shared by the vast majority of MS patients, and especially about the unprecedented heat and drought we've been dealing with here in Texas. It's a really big deal for people with and without MS. Time Magazine says that "Texas' drought may have global effects".

Anyway, I just wanted to say that FINALLY it's eased up. We broke all kinds of records but it hasn't been over 100 degrees F for over 2 weeks. Whew! Some days we don't even hit 90.

It even rained. (Once.)

So I'm cool now too. I can go outside and sit. I can think more clearly. I have choices. I can do errands and not have to return to an oven-on-wheels. I'm not stuck inside like a salad in the fridge. I feel so much better.

StaCool Vests

FYI, if you are sidelined by heat intolerance, there is personal cooling equipment available (vests, wrist and ankle wraps, etc) available to MS patients. They say that wearing a cooling vest can enable a heat-intolerant person to participate in aerobics or outdoor activities involving exertion. Check with the MS Association of America; or you can call the M.S.A.A. at 800-532-7667 for information.

There are also numerous for-profit private businesses, like StaCool, offering self-cooling products, private-pay. Just Google "cooling vest for multiple sclerosis".

Personally, I use ice packs, or just plain old ice in a bag. But the vest would probably be better. Somebody try one out and let me know, OK?

Chill!

9/5/11

On MS and Memory Issues [or, OMG I Forgot To Reorder My LDN!]

I try to keep up with things, I really do. I hate screwing up. Carelessness pisses me off whether it's in me or in others. I especially hate wasting other people's time and resources by messing up and forgetting something- that's the worst.

I know, we all blow it from time-to-time. But for about 10 years now I've been busily forgetting things roughly from the time I wake up until the time I fall asleep. Which makes me feel like a total screw-up, but I try to remember to forgive myself each time I mess up, although it's hard and not always possible if I've blown it badly. But at least I resolve not to repeat the same mistake again if I can possibly help it.

Meanwhile, I make these over-the-top memos for myself- obsessively well-formatted signs and notes, usually illustrated to some extent, and sometimes I even laminate the silly things! But I still sometimes forget to look at them.

One of my silly laminated reminder signs- helps out on watering day

Posted on a sliding glass door, to remind me not to let Claude the Blue Lacy (my dog) out while thirsty wild critters are visiting

I used to rely heavily on my cell phone's alarm feature for reminders, but unfortunately the alarm stopped working reliably months ago, so that's that until next year when I'm eligible for a new phone. Which brings up another issue I've been wondering about; am I smart enough for a Smart Phone? Well, maybe. Just barely. I have to admit I dread learning how to use tricky new things...in fact, I avoid it; way less stress. I know, it sounds lazy, but you know what they say; no pain, no pain.

See, my memory trouble usually arises when I try to hold a simple thought or plan in the back of my mind while I attempt to do (or just think about) something else.

It's really just simple, two-layer multi-tasking, which was never a problem for me before MS. But trying to hold a thought in my leaky brain now while focusing even temporarily on something else hardly ever works, and I guess I've adapted to it by not attempting it if I have a choice. And luckily, most of the time I can still manage to recall in time that I'll probably never keep things straight if I try to do more than one thing at a time....

So what to do?

Well, my first line of defense when I realize my brain is getting overwhelmed is to stop everything and focus on just the most important thing, whatever that is at the time. (Usually simply updating my calendar takes care of it.) The rule here is relax and take one thing at a time. And above all, I don't let myself get stressed. Keeping things loose, light and easy has become the most normal, natural response for me. Life's tricky enough without riding your own back all the time, right?

Don't get stressed; keep it light

After all, I'm not on a deadline-I can afford to take a break and resume whatever it was when my head clears.

The commonest multi-tasking situation that arises in my life these days that gets me overwhelmed is on ancestry.com.

So far I've got almost 15,000 people dangling on my family tree, going back past Saint Constantine, Emperor of the Roman Empire (my 43rd great grandfather), and I've got 17 other, much less complicated trees working as well. This genealogy stuff really interests me and is a perfect challenge; for one thing, I learn a LOT of stuff.

But connecting one family tree to another on that site involves multi-tasking on a level that would have been a challenge even before I got MS, so I've found it best to work on this stuff a little at a time. More importantly, I've learned to let it go gracefully as soon as it gets too complicated. Just let it go. When I get stuck like that, typically I have several Windows open at once with info I'm trying to compare and consolidate.

Inevitably there's a point where there are more levels than I can even see at once, if you know what I mean, and I almost feel something shorting out in my head. Not literally, but that's when I know I've tried to go in too many directions at once and have, understandably, lost my bearings....at which point I just close everything and take a break. Maybe I play a bit of Tetris or something; pretty much anything off the ancestry.com site. As long as I avoid anything that demands complex multi-tasking for awhile.

In circumstances when I have to manage to juggle two things at once, I employ what I guess you'd call a "memo-mantra", sort of a chant I literally mutter to myself unceasingly ("the water's running, the water's running, the water's running, the water's running") until I can, you know, turn off the water or whatever.

It's like the back of my mind has this very steep, slippery shelf off of which things always tend to roll... off into a void. I have to work hard to hold that extra thought on the shelf and it doesn't always work. Usually I find it best not to attempt multi-tasking in the first place. Like I said before, one thing at a time.

Along with my inability to multi-task, I also noticed (starting almost 10 years ago) that I'd become a klutz; all I've really figured out to do about that is to move very slowly and deliberately so as to avoid wrecking things. It doesn't always work by a long shot, but it's all I got.

And OMG the most frustrating thing is that I lose things all the freaking time! I spend a huge amount of my time looking for stuff that I swear I just freaking had! It's maddening!

And I'm always forgetting what I was saying, which is just more multi-tasking FAIL.

I often wish my life had TiVo, so I could push a button and go back to find out what the heck I just thought of and so quickly forgot. (Uh, what was I just saying? Crap. I know it was important...oh well...)

In fact, memory problems were the main thing that motivated me to get a head scan in the first place, the results of which led to my MS diagnosis.

I was doing medical coding in a family doctor's office when all of a sudden I found I couldn't remember the code for hypercholesterolemia (it's 272.0), an ICD-9 code I'd used countless times every blessed working day for years, but all of a sudden I couldn't think of it.

I felt so freaking stupid.

I was pretty sure about the numbers involved (I thought there was a "7", a "2", and a "0", with a decimal point after 3 digits and then one of those numbers repeated after the decimal), but I had no idea about the order of the digits.

Finally I actually had to look it up, which was on par with forgetting how to spell my own name. It was, "OK, I want a head scan and I want it now!"

Anyway, if all else fails, a sense of humor helps immeasurably as your marbles slowly roll under the fridge where you'll probably never be able to find them again....

My most recent screw-up involves my LDN. I was taking my bedtime meds night before last when I came across a little card in the slot that said "Need LDN".

Shitshitshit! I was supposed to order a refill on the 1st when I got my check, but I totally spaced it out. (Insert more cursing...)

Obviously I should have thought to put that little "Need LDN" reminder card in a slot that I would have seen several days before I ran out, in time to get a refill, instead of on the night when I'd be out already. Oh well, another lesson learned.

Anyway, as of two nights ago, I've been off LDN because I'm out, and I won't have any to take until at least Thursday or Friday, maybe later. The compounding pharmacy I use is closed until tomorrow because today is Labor Day. They'll send it (Priority Mail) because Aurora Illinois is too far from Austin Texas for a routine road trip to pick up a refill....(duh)

Well, hopefully my immune system won't notice the oversight. (Ha! Good luck with that, right?)

The only other time I couldn't get my LDN for a week or so was back in '05, and I wound up with an exacerbation involving a world-class case of labyrinthitis. I literally had to hold my eyeballs still with my fingers! I was left with chronic dizziness.

I'm hoping this week's brain fart won't lead to any permanent drama; meanwhile all I can think of to make more endorphins while I await the refill is to exercise- so I'll go to the gym later to work out....if I can remember to go...

Oh crap, I just realized that they're closed for Labor Day too! (Insert more superfluous cursing referencing feces)

Oh, and speaking of meds (well, I was, remember)....obviously it's important to remember to take them, and I have to remember to take a small handful of meds and supplements twice daily. So I've found that the simplest, surest way is to set up two weeks' worth of my meds at a time, which I store in two clearly and heavily labeled, slotted trays; one tray for morning, the other for bedtime.

This is not a foolproof system, but at the very least I can say that every screw-up has led to a new innovation and fewer mistakes afterward.

For example, I found it helpful to make little cards with the days of the week on them to put into each little slot, so I can tell at a glance whether or not I've taken my meds yet; otherwise I have no idea. None.

Bedtime Med Tray


Inside the bedtime med tray

Morning med tray

Inside my morning med tray

I've shared all this silly minutiae not because I imagine it's interesting to anyone, but in case you're dealing with similar issues. At least know that you're not alone if it's any consolation, and that there are ways to manage things if you try. Hang in there, and hey, if nothing else, work on developing that sense of humor!

Sometimes in life, whether you have MS or not, whether you have memory problems or not, it helps to think creatively and to be ready to improvise, to let go and go with the flow. I've learned that I can't afford to be too attached to things the way they are; attachment brings even more suffering to MS patients than to most people.

Be flexible. Make plans, but make 'em in pencil.

Coping with a Long Hot Summer

Eight years ago when I was diagnosed with MS, I was living about a half hour west of Austin on 10 acres with a beautiful view, lots of wildlife, wildflowers, woods, fresh air and quiet....but no running water and no a/c or heat.

I was 52 and roughing it was getting old, MS or no MS. I dealt with the summer heat and the ongoing lack of running water partly by showering at my gym every day. And swimming in Barton Springs Pool, a sacred swimming hole in Austin that's a brisk 68F year around- very refreshing. I was still rehabbing myself from a back injury, and was a fanatic about working out and swimming laps. My exertions were slow and steady, never intense (a turtle literally passed me in the pool one day), but it felt so good and kept me moving, and cooled me down very effectively.

Out-of-towners tend to shriek when that icy cold spring water hits 'em...

Elevated body heat - sometimes even a fraction of a degree- can be a real problem for MS patients. Most of us do best when kept cool.

Here in Austin we're experiencing the hottest summer on record, as well as a truly brutal drought. The average high temp in August was 105, 9 degrees above normal.

Personally I suspect we're being punished for electing Rick Perry, the phony-baloney jerk....

I check the National Hurricane Center every day, looking for signs to hope that something might improve; this time of year we look to the tropics....

And the drought...my parents lived through the Dust Bowl and my own childhood memories are set against the Drought of the '50's; "drought" was the first grown up word I remember hearing and fearing .....

....but it was nowhere near this hot back then. Temps have reached as high as 112 this summer, and it's been 106F almost every week, sometimes hotter, and over 100F almost every single day.

If this is the new norm, we're screwed.

Desperation brings a grey fox to South Austin backyard for a drink; cat wisely decides to share

As I count down the days to October (25 days, 5 hours, 15 minutes and counting) when the 3-digit highs will surely be gone for a few months, I have my little strategies; they're not much, but it's all I got...

First, I stay inside (duh). Between 9am and 10pm, unless I have no choice, I stay inside where the climate is controlled to about 75 degrees or less. The cooler it is, the better and smarter I feel, but I can't afford to fully indulge my love of frost.

You know, this Thanksgiving when we go around the table listing what we're thankful for, I really must remember to mention air conditioning, ever though the holiday season makes it easy to forget. I really am truly thankful that I have the luxury of living in a house with air conditioning. Now if I can only think of the right Lotto numbers, I'll move about 1,000 miles north in a New York minute. Seriously. It's not only too hot here, but Texas gets stupider with every election.

Second, I use ice packs (I keep several in the freezer) and drink a lot of icy cold water. Popsicles are a major food group for me this time of year too, and I have a little snow-cone machine for the shaved ice. Love that shaved ice!

Third, I NEVER get into a hot car. That takes planning and sometimes sacrifice (in that I have to decline invitations that would involve my melting.) Sounds silly I guess but it's a good rule for me.

Fourth, I inspire myself with images of cold things. My computer wallpaper features icebergs and glaciers. Hey, it can't hurt.

8/24/11

MS Patients and Others Against Global Warming

The Earth is getting warmer, a fact that has never more obvious than in the last few months here in Texas.

In Austin the average daily high temp for this month (August 2011) is averaging over 104F; that's not normal here. Or at least it wasn't. The reality of breaking heat and drought records on a daily basis wins us nothing, not even a plaque; it just sucks.

Yesterday we reached the all-time record for most days over 100 F; the previous record, 69 days, stood since 1925. We'll break that record in a couple of hours, and tomorrow we'll break the record we'll set today, and it goes on and on.

Huge trees that made it through decades of storms and droughts are dying in record numbers, grass and ground cover are turning to dust, farmers can't grow anything but debt and ranchers are as desperate as their cattle.

Doomed Texas cow

We all hope this hellish summer is an anomaly never to be repeated, but it really doesn't seem so when you study historic records. It's a strong warming trend, and the rate at which things warm up is increasing rapidly.

So what does this have to do with MS patients? When you consider that about 80% of MS patients suffer from heat intolerance to some degree (no pun intended), the connection is obvious. We're more negatively affected by heat than most people are; when our body temp rises as little as a fraction of a degree, we tend to experience an increase or worsening of our MS symptoms, particularly weakness. Simple everyday things like getting into a hot car can completely take the wind out of the sails of an MS patient for hours.

The remains of a typical Texas fish in the remains of a typical Texas lake.

As a matter of fact, at this very moment I'm recovering from too much activity in the morning heat. We have water rationing here and today's our watering day,

...so I'd been outside dealing with the sprinkler, adjusting a soaker hose, and hand-watering when it gradually got too warm. Or I got too warm. So I decided it was time to call it a morning (outside activity-wise) and tried to come back inside to cool off but found that I was accidentally locked out. After much banging on windows and doors, my usually flawless roommate finally heard me above his headphones and let me in, absolutely mortified and guilt-ridden, bless his heart. Anyway, I've been back inside with the a/c for about 30 minutes, and as I write this I'm sitting with a large ice pack on my back, fans blowing on me from three directions as I drink ice water. I've stopped sweating and feel much more comfortable now, but I'm as literally limp as I've ever been without general anesthesia. In a few minutes, I'll turn off the fans and set the a/c to a warmer temp as I get on with my day. The thing is, getting overheated like that leaves me limp for hours; I feel like taking a nap but I'm not exactly sleepy, just profoundly weak; my fingers feel weak and stupid as they stumble all over the keyboard; writing this is taking forever.

None of this is a big problem as it used to be since I retired on disability; when I was still struggling to work there was more stress as I tried to fight the effects of Texas heat and MS in general.

Anyway, it occurred to me that those of us who are especially affected by the heat might as well get together and make our voices heard in the fight against global warming.

And yes, I totally get the irony of depending so heavily on air conditioning when it's use indirectly contributes to global warming; it sucks. I don't like needing a/c but dammit I do. I grew up without a/c but that was in the'50's when I was young and healthy and didn't have MS. And although we were in a drought then too, it wasn't this hot. It's never been this hot. But we're doing what we can to conserve energy....and water.

Our current governor, Rick "Goodhair" Perry, who seems to be the leading GOP candidate, says that global warming is a hoax and he will have none of it. (Did that make you feel any cooler? Not me.) He said last Wednesday in New Hampshire that global warming is “a scientific theory that has not been proven.”

In his book, Fed Up! he called it “all one contrived phony mess that is falling apart under its own weight.” (Hey, takes one to know one!)

Of course, Perry also denies evolution and other proven facts supported by not only science but the fossil record, yet ideologically inconvenient to evangelical Christians. He's cast his lot therefore cannot and will not acknowledge anything with which his Tea Party base isn't on board. And many if not most of them are of the belief that the flat Earth is 6,000 years old. (And the Dumbening of America proceeds at breakneck speed.)

How do they manage to make themselves believe the nonsensical in the face of overwhelming evidence against it anyway? Twenty years ago I would never have thought that the mainstream of one of the major political parties in the US would be so proudly dedicated to ignorance and superstition, but there it is.

So as the temp rises and we break yet another record (ta-dah!), Perry brushes his hair back as he waves from his Humvee limo, thinking all this fuss about global warming is all very funny.