I hate this time of year...

We'll, we're right in the thick of the heat.  I live in the North, but it still typically gets in the '90s during the summer.  I am still as stubborn as I ever was, so I go out in the morning to do the stuff that needs to be done.  Maybe it's a man thing.  I feel inadequate if I don't do the yard work and other things that should get done.

The problem is that I go out at 8:30 in the morning and it's already too hot.  I ruin my day and am completely worthless, but won't go and just take a nap to make it all better.  I have serious issues (that aren't related to MS.  I assume I'm not the only one.  My wife does a lot, and is a great mom, so I feel compelled to not let her down.  She isn't let down and tells me that all of the time.  I just need to take up drinking or smoking crack or something...

Incidentally, I have had some luck with ginkgo.  I imagine that a lot of you take it, but I noticed a pretty big difference when I started taking it in the morning (as opposed to with an evening meal).  Highly recommended.  As I've said numerous times, every little thing you can do to improve how you feel - or even just how you THINK you feel, gets you closer to that "feel better threshold."  What have any of us got to lose?

Placebo or not placebo? That is the question.

I would not consider myself to be a scientist, although that may well just be me being humble... it doesn't really matter because I'm going to tell you what I think either way!  I do read the occasional research study and talk to people involved in running said studies - there is always this notion that what you are seeing is a placebo effect.  You may or may not know that studies are usually "blinded" so that nobody knows who is getting the real treatment and who is not.  I'll back up a little further - a "placebo effect" is when somebody thinks they are improving because the drug is working - only they aren't on the drug.  They've convinced themselves that it works and feel better as a result.

My question to you is: is this such a bad thing?  Yes, we want accurate data so that when a truly remarkable treatment comes around, we know and can believe it, but does it matter why someone, particularly someone with a progressive disease, feels better so long as they feel better?  My point is that there is so much CYA going on in the area of clinical trials, much of it for good reason, that we tend not to recognize something as a benefit if we don't have the data to back it up.  I've said it before and I'll say it again, every little thing you can do to bring yourself closer to that feel-better threshold brings the next one that much closer.  Baby steps, people, baby steps.

discouraging day - what do you care?!

I told myself I wouldn't complain or make this blog a venue for feeling sorry for myself.  Let it be known that that isn't why I'm about to whine, but something rather strange but not terribly surprising happened to me this morning.  I was at my young son's basketball game, which is generally standing room only around the perimeter of the court.  My legs generally get pretty tired if I stand for a long time, so I crouched down and leaned against the wall.

Now, I appear to most people to be just a normal guy despite the fact that my legs are always sore, fatigued, whatever, and my balance is poor.  The "soreness" is worse in the morning and difficult to describe.  I guess it always feels like I need to stretch really bad and can't.  Maybe it feels like your legs feel immediately after the doctor hits your reflex spot on your knee - that feeling that your entire leg is ultra-tense and ready to fire again... or, the feel like they do when your feet fall asleep and are super sensitive - without the tingling.  Well...

When I decided to sit down after squatting for a while, I quickly discovered that my feet had fallen asleep.  Ordinarily that's a pain in the ass, but it is now something that apparently is completely paralyzing.  When I sat and went to put my feet out, it was as if all of the nerves in my feet were exposed and my legs jumped uncontrollably when I tried to set my feet down.  There was about a minute there where I was completely helpless and basically writhing because I couldn't figure out to just set my feet down so I could relax.  All this while trying not to make a scene... it was great fun.

Then, when it was time to go, I am really gimpy because I still get that instant "zing" every time I put my feet down to take a step.  Not quite as bad as it was, but definitely touchy.  I'm sitting here writing this 12 hours later and my legs are killing me, I assume because of that few minutes of completely seizing up...

Anyway - I know that many of you wish that was all you had to worry about and know that I don't ever lose sight of that.  I really do look at myself as pretty lucky in the whole scheme of things.  I was really just wondering if anybody has had a similar experience.  Any home-remedies would be appreciated.  I guess my days of making due without a chair are over...

Sorry for the absence - doing fine, just busy.

I'm glad to see that people have been reading the blog (at least the old posts).  I've been out for some time, and I apologize.  I've been working hard (ok, obsessing) about getting a certification to hopefully improve my marketability.  I have a good job, but am always looking to do better.  It's a problem I've had since shortly after my diagnosis.

I talked a number of months ago about needing to find focus in order to improve your mental state, and subsequently, your physical state.  Ironic as it seems (I say ironic, but I think many of you will say I'm stating the obvious), MS has improved my focus.  I think it took a while, maybe a year, to realize it, but once I got past the "whoa is me" stage, I started thinking "ok, I'm not sure how long I'll be effective and marketable, so I'd better work hard and fast to get as far as possible while I can."  I think about little else.  Anything that doesn't somehow qualify as self-improvement seems like a waste of time.  I am not endorsing that attitude and find myself envious of those that can manage a few hours to go fishing or sit at some little coffee shop.  I just obsess about proving myself to... someone.  Me?  I'm totally OCD.

One big motivator for this better job thing is related to a previous blog.  The new governor.  Here goes the anonymity, but I want to impress upon you how irritating and big this is and show you that it's more than a simple republican vs. democrat thing.  I live in the city that has been in the national (and even international) news for the past month due to the outcry and protests against this governor that is trying to give himself executive power, kill unions, screw with health care, destroy public schools, and vilify public employees.  He's doing all of this with loopholes and backroom deals.  Yes, THAT is the place I'm talking about.  I'm a public employee.  Not in a union, but somehow I don't think that matters.

I wouldn't say that I've ever been a political activist but have been at the capitol and seen the peaceful protests.  When I saw the FOX news footage from the protests showing Teamsters fighting and palm trees in the background - there's still snow on the ground at my house; no palm trees - I totally felt like the wool had been pulled over my eyes for the last 20 years.  There is a FOX news truck right outside of the capitol.  The correspondent was actually there but the footage was file footage from a teamsters rally in Sacramento.  It was so clear that they wanted to swindle the American public into thinking that the opposition is full of bullies and otherwise unreasonable people.  Nice.

I gave a talk a few weeks ago to an MS support group about research participation and a woman with MS and diabetes was telling me how many medications she's on.  She's a single mom and a public employee.  In addition to the pay cuts, she was worried about health care changes that could include mandatory medical evaluations (presumably to make people with a pre-existing condition pay more) and increased co-pays.  She said she had been crying for several days.  I know that you aren't all on my side of the political spectrum, but I've got to tell you, I looked at the bill.  I saw a section that is written very ambiguously and uses key words like "may" so "they" can say "it says no such thing.  Just another bed-wetting liberal making false accusations, blah, blah, blah."  BUT, it does make a reference to "may decide to require medical evaluations..."  It bothers me when people have to decide between paying rent and buying meds.

Sorry for the rant.  I'll try to keep up with the blog now that I passed the certification I was going for.  It's a two-parter, but I'm going to take a little break before studying for the next one...

Be good, keep it real, all that hip stuff.  Oh yeah - GET OFF YOUR ASS AND STOP FEELING SORRY FOR YOURSELF!  Baby steps add up.  help yourself feel better.

Out

Who the heck are you, anyway?

I haven't been overly inspired to write, lately.  I guess I'm sinking into a deep depression... NO - it has nothing to do with my feeling sorry for myself (at least not directly), but due to the recent elections.  I live in Wisconsin and am employed by the state (notice I didn't say "work" for the state).  We just elected a governor that has essentially promised to cut my pay and screw with insurance and retirement benefits.  Excellent - I have THAT to look forward to.  What the hell are people thinking?

I'm not going to get overly political because all it does is to get me worked up.  As the sole breadwinner in a house with a wife, two kids, a dog, a mortgage, student loans, etc, etc, I've got to stay positive and recognize that this will pass... probably when I'm living under a bridge, trying to survive on oatmeal and bugs.

Anyway, I decided I would just write about me - then I don't have to think too hard...  I had an earlier request for "my story," so here it is.

I am in a relatively unique situation in that I still see a lot of my friends from high school.  We mostly went to college, everybody moved away (except me) and got their experience before moving back.  It's a nice neighborhood/city, so it makes sense.  They are all pretty successful, thanks to their own hard work, which is probably part of the reason that I am the way I am... I refuse to be a victim in all of this - I'm going to do what I can to help myself AND try to get others to do the same.  It's an accountability thing...

I was always the physically fit one; the one that didn't gain a lot of weight after high school and the one my friends referred to as "pretty boy."  This, in some ways, is a curse.  When you establish yourself as that person, you think of yourself as invincible.  When you have problems (such as the early warning signs of MS), you are not likely to complain or see a doctor about them because that would make you weak.  Essentially, you are not likely to be your own advocate.

When I was 29, a friend called me about 2 weeks before a local half-marathon (13.1 miles) and asked if I would do it with him.  Now I was in decent shape, but had not been running...  I agreed.  I went into it wondering how far I would make it.  I went the whole way and realized that it was as much a mental battle as it was physical... do you see a connection?

Delighted with my success at doing the half, I signed up for a full marathon the next year.  I started training 4 months prior and made it the entire way, not at a blistering pace, but I made it.  This was in 2001 and in 2004 I signed up for another marathon and ran it.  I was not running consistently, but would train for them for 4-5 months and then see if I could finish.  Again - I was basically just confirming that I could still do it and was still bullet-proof.

In 2005, I entered grad school while continuing to work full-time.  In the second semester, spring of 2006, my speech became so slurred that my wife was worried I had a mild stroke.  This was not quite so obvious to anyone else because I was, of course, putting a tremendous amount of effort into enunciating and selecting my words carefully.  Ultimately, I did go to the doctor and they ran me through a barrage of tests (ECG, etc) and eventually chalked it up to the fact that I was in grad school, working full-time, sleeping 4 hours a night, and stressed.  Seemed reasonable, although it just made me less likely to go the next time since having the doctor tell me I'm imagining it was my worst fear.  I now know that this was a relapse; one of several as I look back.  This wasn't the first time I suspected something was wrong, but I figured many of you can probably relate to the situation.

As a side note, I had been experiencing debilitating fatigue, particularly at certain times of day.  Remember the buddies I was talking about earlier?  Well, we've all been on a softball team since we were teenagers.  During the games (particularly in my 30s) I would literally be falling asleep while standing in the outfield and I was having a lot of trouble tracking the ball when it was hit in my direction...

In February of 2008, I decided I would train to run another marathon.  I ran on an indoor track that was close to work, so I'd go at lunchtime.  The first time I ran, I had to stop after about 5 minutes and was staggering - grabbing railings for balance, nearly peeing my pants, not able to turn off my ipod because I had lost fine motor control.  I sat for around 10 minutes to recover and then headed back to work.  Being stubborn (and, did I mention, "invincible?"), I chalked this up to being out of shape and went back the next day.  Same drill.  I kept it up for around 2 weeks until one day I fell on my face in front of a couple of college coeds.  They ran over "OMG, are you OK?"  I, of course, was so embarrassed that I said I was fine and stumbled away as fast as I could.  After that, I didn't go back.  I still hadn't mentioned it to my wife or my doctor.  A couple of months later when I was coaching my son's tee-ball team, my wife would comment that she knew how I was feeling based on my stance.  There were no trees and it was HOT.  I would have to use a really wide stance just to stay upright.  We both knew something was wrong at this point...

Around this time I got up the courage to tell my doctor about it.    Our first thought was maybe low blood pressure or a heart problem.  I had an obnoxiously low heart rate at the time - around 45 at rest - so it seemed like this was a strong possibility.  After a slew of tests (24 hour halter monitor, ultrasound, stress test, etc) I was told I had the heart of a teenager.  I was then referred to a neurologist.  The neurologist wanted an MRI before they would even see me, and the rest is history.  That was in the summer of 2008 when I was 37, and I had entered into the relapse that would change my life.  My speech is not great, but much better and most people don't notice (I am hyper-aware of it, so it seems worse to me), I spend a lot of time making excuses to my co-workers for why I can't walk somewhere that's more than a few blocks away, my legs ache and are growing weaker (although I have found ways to manage that), and my balance has gotten much worse, although I really do think that D3 has helped significantly.

I would never claim to have it as bad as most of you but I can see the writing on the wall.  My goal in having this blog is to promote self-advocacy, educate a little on what works anecdotally and what there's evidence for, to provide resources, AND TO TALK SOME SENSE INTO THE PEOPLE WHOSE GOAL IT IS TO BRING EVERYBODY ELSE DOWN!

Attitude is everything

I've touched on this in pasts posts, but I think important enough to justify a post of its own.  I've been reading a lot of other blog posts and it's hard not to notice how bitter a lot of YOU are.  I realize that I'm a "newbie" both in the blogging world and in the MS world and that's probably more for you all to be bitter about.  That said, I pulled myself out of a funk and quickly started analyzing not only what I was doing, but what other people were doing and how that affected their well being and how others treated them.

I have no social science background, so I'm a self-proclaimed expert.  Whatever, I've read some and I over analyze everything.  If you choose not to even consider what I'm saying, that's up to you but I think it's weak not to at least consider that some of what I say might be true.

It started with my diagnosis (2008) and the decision not to immediately tell the world, or at least the people I work with.  I made that decision under the advisement of some nurses and my physician, although I didn't know why at the time.  I should say that 1) I was having a pretty tough time with the diagnosis, and 2) I like to talk (which you have probably figured out), so it was hard not to talk about it, but it got easier over time.  I did tell friends eventually, but kept it to myself at work.  I figured everything out when I was put into a high-pressure situation (spoke about it in a previous post).  I figured out that what I was worried about wasn't that I would be discriminated against and lose my job due to my illness.  Quite the opposite, I didn't want to be overlooked because people were worried that I wouldn't be able to handle the stress, etc.  THAT NEEDS TO BE MY DECISION, NOT SOMEONE ELSE'S!

I remember thinking that if the guy who put me in my current position would have known my situation, he might not of given me the opportunity because of the other things I was dealing with in my life.  As it turns out, it was the best thing for me because I was engaged and other people were depending on my success.  I didn't have time to think about what might happen.  I've talked to other people who have let their employers know about their situation and they were subsequently overlooked.  This is NOT discrimination in the way many people think of it, but it has a similar result.

My thought is that people will likely figure it out eventually either because I won't be able to disguise it anymore or because word will just get out since I don't keep it a secret anywhere else.  If that's the case, fine.  I would think/hope that at that point they'll say to themselves, "he's had MS for 5 years?  I never would have suspected" and they'll go about their business.  When I'm really feeling idealistic, I tell myself that if they do find out, they'll probably be saying "man, he's really resilient.  I thought I had it bad, but I guess I shouldn't complain."  Maybe not, but I think it's better than labeling myself early and never giving them a chance to see that I'm just as if not more effective than I would be had I not been diagnosed with MS.  I've been handed this disease - I didn't get a say in the matter, so I'm going to try hard to turn it into something positive.  You can give up if you want, but you still have a long life ahead of you - you might as well do what you can to improve the quality of that life!

My point?  hmmm... what was my point... oh yeah - If you're worried about what everyone else is thinking, why give them more ammunition/fodder?  DON'T LABEL YOURSELF!  If your worried or upset or frustrated that people look at you different - GET OFF IT!  That attitude perpetuates the cycle.  What's the difference between them looking funny at you and you responding in the same immature fashion?  Be the bigger person - but don't wish that they'd sympathize, or empathize, or feel sorry for you.  It's human nature not to know how to react when someone looks or acts different than average. 

How do you act when you see a burn victim in line behind you?  How about when someone has a limb that is much shorter than another?  Don't give me the idealistic, post disability answer that you want to hear or that you think is PC - be honest with yourself.  How were you raised to react?  I know what I teach/have taught my kids... DON'T STARE!  Apparently this offends some - Well, GET OVER IT!  Sure, we'd feel better if they'd just come out and ask, but people don't think that way before they have first hand experience.  Or, maybe I'm the only one who thinks that way and am a bad person...

The message here, whether you want to hear it or not, is not to label yourself.  I'm sure some of you will construe this into "you should hide your disability and be ashamed of it."  If you are that much in denial, more power to ya - I hope that's working for you.  My point is that you already know that people don't know how to react, so why set them and yourself up for failure?  As I get further down the page, I come up with new points... DON'T BE SO INSECURE!  If you are visibly disabled, just enjoy yourself and stop obsessing about how others react to you.  I don't know - have fun with it... tell them your drunk or that you got into a fight with a rival gang member, or that you OD'd on paint fumes.  Like I tell my kids: do you really want to be friends with a person like that, anyway?

We're talking about baby steps, here...

I would like to write a brief follow-up to my last post and to Diane's comment.  Let me say first that Diane had a bad experience but it didn't drive her to not try again using a different approach (i.e. a smaller dose).  Honestly, 50K seems like a lot to me... I've heard of that amount per week - were you taking that daily?  Holy Crap!  (I have no medical background, so take for what it's worth).  You can't really dispute the data, so I think it's an avenue you all should explore if you haven't yet.  Keep in mind that I'm getting what I think are good results with 4,000 per day (which I thought was a lot).  As I mentioned in my last post, you should always check with your doctor before taking something like that on.  Heck - you're probably getting labs done every 6 months anyway, right?

The bigger picture, though, is something you've heard me harp on a bit already.  THERE'S NO SILVER BULLET - so don't hold your breath waiting for it.  By now you've certainly figured out that MS is caused by any number of risk factors, environmental and genetic, that happened to align in our favor.  Lucky us!  Is it so hard to believe, then, that the solution may not be any one approach, but rather a combination of things that attack the disease and it's symptoms from various angles.  Also keep in mind that this concept is fairly universal, particularly with the progressive autoimmune diseases.

This is what I was driving at in the "science experiment" post.  Keep trying stuff and figure out what works for you.  I'm convinced that MANY PEOPLE WITH CHRONIC OR PROGRESSIVE DISEASES don't have the discipline to try something new or branch outside of their comfort zone.  It's a lot less work to sit around and feel sorry for yourself and be a victim than it is making an effort to improve your situation.  We're talking about BABY STEPS, here.  Every little thing that you can do to slow the progression or at least your loss in function/mental capacity/whatever, buys you time. and improves your quality of life.  Sitting back an doing nothing is basically like painting yourself into a corner.  If you can improve in one small area, suddenly tackling a different area doesn't seem quite so daunting a task.  STOP LOOKING FOR SYMPATHY AND TAKE SOME RESPONSIBILITY FOR YOURSELF.

A lot of people don't know where to start.  Try a diary.  Write down everything you do in a day and, after a week, try to identify patterns and start making adjustments.  Don't change everything at once or you won't know what worked, and give each one time.  Remember, you're looking at many different aspects about how you feel (fatigue, balance, strength, speech, concentration, or whatever your particular symptoms are).  I find that most things are linked to fatigue (i.e. everything gets worse when I'm tired), so that's where I started.  Think about things like sugar, caffeine, other simple carbs, proteins, how often you eat and what times, when/if you exercise, how long you sleep, etc, etc.  Also, note the time of day that you do things - for example, I can handle a sweet treat much better in the evening than I can in the morning or afternoon.

I'll tell you what has been working for me, and this is by no means the end of it, but I am going to try and stabilize a bit before moving on.  I have cut caffeine almost completely out of my diet, cut the carbs (at least simple carbs) between meals, increased my vitamin D3 intake to 4000 iu/day, ride a recumbent exercise bike (so I don't fall on my face) for 10-15 minutes 4-5 times/week, and increased my sleep (to 8-9 hours).  The other thing I do is to take one of those 5-hour Energy shots at around 11 or 12.  Yes, this has some caffeine, and it seems like hocus-pocus, but it works for me.  I don't take it every single day, but I typically crash in the afternoon - not as bad since I eased up on the coffee and sweets, but I drink one when I first feel it coming on.  This carries me pretty reliably through the end of the day.  I can read at night - something I don't think I've been able to do for most of my adult life, and am much more attentive at work.

Again, this is working for me, but you have to figure out what works for you.  I feel mentally stronger than I have for as long as I can remember - long before my diagnosis.  Physically, I'm not even in the neighborhood, but I'll take what I can get.  FIGURE IT OUT AND STOP WAITING FOR SOMEONE TO DO IT FOR YOU!  You know how you feel and the best neurologist can't tell you what's making you feel better.  I'm a believer in medical research (obviously), but the tools aren't good enough for them to know how you're feeling.  "What's your pain on a 1-5 scale?"  Ummm, doesn't that depend on my pain tolerance?  What's baseline?  I also always love the test where I move my finger from the tip of my nose to their finger.  I guess I'm fine if I can hit the finger.  Apparently it makes no difference that what's the equivalent to hitting the broad side of a barn to you is like threading a needle to me.  If I hit your finger, it's all good...

The moral of the story - it's all on you.  Figure it out.