Friday, April 30, 2010

Thoughts on exercise and MY MS

I capped MY in the title because we all know each of our own conditions is unique. I mean when you think about it, it makes perfect sense. Random location of lesions in your CNS, and peoples' Central Nervous Systems are totally unique to each individual. So anyway, my personal thoughts on the value of exercise in progressive MS is sort of against temporary conventional wisdom based on what's going on with me. The conv. wisdom is that exercise is nothing but 100% positive for MS. That is mostly true, but not completely I'm convinced now. Allow me to elaborate (I hate elaborating...).

When your CNS is already "under a load" dealing with MS, I'm not so sure it is really good to push it past its' capacity. By that I mean that just doing mild exercise like light weights and walking (maybe it's just low impact that's the key) makes me feel markedly better than trying to exercise strenuously. I know, I know, I have a tendency to push that shit. But this time I really have not. Ever since the infamous roto-tiller incident, I've pretty much learned my lesson. I have taken it slow and worked up to trying stuff at what I consider a snail's pace. Maybe my definition of a snail's pace sucks, but I'm talking slow. But when I do it with much lower effort but for longer periods, I feel better, I can function the rest of the evening and all that good stuff. It was, of course, utopia when I was temporarily unemployed, but we couldn't have that while I'm still able to work, so that vaca. was way too short! I mean exercise is not a 'building activity' anymore. It may be cardio, but I haven't pulled the trigger on something like an elliptical or stationary bike yet so I haven't foud that out. Since that's a system and not a muscle, I imagine cardio can be improved, but everything is controlled by, in my case raggedy-ass, nerves.

Quick sidenote: I just snuck into the hall and watched my daughter through a crack in her door jamming on the bass. It's amazing how good she's getting; it's freaking me out in a cool way!

So I feel much better than I did a few weeks ago. I just only have so much energy and work is a must, so, for now, I must do that. It doesn't feel like it's at odds with taking care of myself 100%, but it just makes it harder. That's what this shit really is right now. Through no fault of your own, life just becomes hard as hell. I know why, sure, but it sucks eggs. It is a decidedly eggsucking activity this crap is. What it comes down to mainly for me is that my knees end up hurting so bad it makes me limp, which makes me tired, and so on and on. So as I'm writing this I'm talking myself into an elliptical machine. I've been saying that for a while now. I just need to do it but I hate to spend money right now. Putting just one kid through Catholic High School has put a dent in my budget, well actually it's the economy stupid!, but I digress.

I just needed to talk about that as I promised to blog about my adventures in exercising and I haven't, so now you know. I was getting discouraged, but I just do what I'm able and need to quit guilt tripping myself. That's probably why I'm writing about it. I seem to need to write it down to take it in when it's a self taught lesson. Well in the words of Forrest "that's all I have to say about that".

Saturday, April 17, 2010

The weekend

Well the weekend is here and I did keep up my exercise like I wanted to. I did not jog my 1/4 mile last night as I was scheduled to, but I did other stuff. The jogging, while very 'soul satisfying', may not be the best way for me to exercise...yet. As I explained a week ago, it's not my muscles so much now that won't go. It's the damn knee. It is killing me! Also my hip to a degree and I'm 99,9% sure it's because of an irregular jogging gait. Just too herky jerky, and thus too much of a pounding to my joints. So I went out back and picked up all the huge pieces of lumber from the tree that got hit by lightning the other day. That was a trip let me tell you. The tree literally exploded and sent wood all over the back yard. About 1/2 of it's still standing, but that dude has to come down! Then I mowed the back hill. I could not mow the back hill before the procedure. Parts of it are quite steep whereas if you are cutting in one direction, your hands are literally up at eye level as you are pushing it uphill. Well I did it ninety degrees opposed to that, but it's still a bitch, and as I've said, something I was incapable of before.

And the great part was that I was absolutely drenched in sweat. I loved that part. When you are used to a soaking sweat on a daily basis for probably 20 years, not sweating for a long time makes you wonder whether you can still do it or not. I mean really. So overall I'm keeping my effort up and working the upper body and running all over the place in little jaunts like to the port a john at my daughter's soccer games! The grass is more forgiving and I only go about 100 yards or so, but I do jog it, and that feels really good. I just can't road run until I get a steadier gait. I hope it happens, but if not, I'm doing other stuff now like yard work. That kicks ass. Yard work is something I totally enjoy, but haven't done for a while. Regular readers of this remember the 'roto tiller incident' right after I had my procedure. I think I could do that now just fine. It knocked my dick in the dirt right after my procedure, but I wasn't even recovered from the surgery yet, so it was a dumb move as it was really pushing it. But I just love being able to make plans and get excited about DOING stuff. Going out, things like that which I had quit doing.

So a quick update, I didn't want everyone to think something had happened and I had slipped back. Not able to keep up with jogging, but that's only because it's murder on my knee. So I'm simply exchanging jogging for other stuff! I'll update in about a week if I think I might actually be getting back into a little bit of shape.

Tuesday, April 13, 2010

2 days later

I decided to post again every other day for quick updates. I know my last two posts have been chock full of positive news. I'm still feelin' it but for fellow MS'rs, I wanted to keep it going. You see running (it's kind of funny to call it that, I'll make a video once I borrow a camera) sounds impressive, and from where I was a year ago, it is. But the caveat here is it needs to stick. In other words, running a 1/4 mile one time and then not being able to run again for a week is not what we're after here. With MS, everything is a test; everything. Did getting up from that chair make me dizzier than yesterday? Did walking down the hall at work make my eyes go foggy yesterday? You are always on the lookout for things to get worse so you can go get 'roids, or you are looking for things to get better which means maybe you're stabilizing.

Well now after the procedure, I'm also looking for improvement. So running Sunday means I have to try and go at least as far as I did then on Tuesday and keep it up every other day. If this happens, I'll put a notch in my own belt. Well I did run the same 'course' again today plus about 100 extra strides. I actually could've kept going muscle wise, but my feet weren't coming off the ground very far and I thought I better stop less I fall. When you're foot is scraping the sole on the stride bringing your foot from back to front, that's a sign you need to start lifting your feet higher if you can. Well I'm not coordinated enough to do any high stepping, so I walked about another 1/4 mile and then did 10 sit ups and 10 push ups and 10 jumping jacks.

The report after just one tiny, little run on Sunday? Sore legs and ass for starters! BUT, and this was huge for me, my dizziness was basically gone all day Monday and today. That's what I'm talkin' about. That's what used to work, and it worked again despite not getting all hot and sweaty.

So I'll post for a while every other day. It's hugely significant if I can keep this up. Hugely. I would start to exercise last year, and I just couldn't maintain any of it. It was just too hard and too depressing to just keep failing on doing such strenuous things as, oh, a few deep knee bends. I'm definitely past that point so I think I can say I'm most definitely at a better baseline. I'm not healed or not "MSy" by any stretch, but being able to string two exercise sessions with my lower body together is just awesome for me. I hate to say it, but it is sort of a panacea for what ailes me. Anything that can take dizziness away and doesn't say "Antivert" on the bottle is A-Ok by me. That antivert sucks. Sure you might not be dizzy, but what good is that when you can't keep your flippin' eyes open? So I'm off to make dinner (we're having Chinese takeout, mmmmmm) LOL! I'll post again on Thursday whether I could do it or not. And I do know someone with a Flip camera, so a video of me running will be on here soon. It ain't pretty, but hey, I'm OK with that if I can keep it up and keep the dizzy monster away.

Sunday, April 11, 2010

A couple weeks out-still hanging

And I think it's because my old friend dizziness/vertigo slipped back into the picture about a week ago. I'm still feeling good enough to go out and watch live music on a Saturday night until midnight (big stuff for me), but vertigo kind of makes you feel like everything's out of whack. You just want to close your eyes and sit there. It's especially bad for me right now since I have the energy and leg strength to want to do more. It's just that when you're really dizzy, activity makes it worse so you try to 'hang on' and not make yourself dizzy. I mean it takes so little you're even cautious about turning your head too fast. Well my answer to literally everything in the past (especially dizziness) was to "push past it" with physical activity; specifically running. I'd start my jog and I'd get dizzier, but then it would start to abate as the sweat started to pour.

That quit working when I lost my ability to work up enough cardio to even make myself sweat. Not coincidentally, that's when the dizziness really kicked into high gear. So now what do I do? Am I experiencing progression? I don't feel like it, but I can't say no for sure. However, none of this is new stuff. It's just old stuff re-appearing. So what did I do? I tried to run! And I did go about .25 miles doing something that sort of resembled a running stride. It wasn't pretty let me tell you.
Besides the South Park shorts, I probably looked like I was doing the "Thriller" monster dance, but I really don't care. I could do it, keep it up for more than three strides, and it actually did help to abate the dizziness somewhat. It's not 100% gone like it used to when I really could work hard, but maybe, just maybe if I keep it up, I can get to a full mile. .3 is next up. The only thing that really blows about doing stuff like this is that it's not just how strong your legs are that comes into play when you want to start running again when you have MS. It's the leg pain, the foot pain, and everything else that goes on with your legs. If it was simply being weak and not having muscle development, I could push past that. The other stuff at times will make it hard to walk let alone run. So I'm very pleased I could go that far (a whole quarter mile!), but now I really hope in two days my knee won't keep me from continuing. I'd love to be able to make this part of working out. I'll sweat yet this summer from something other than laying in the sun and overheating.

So it's not like the good times just kept on rolling after my last post. I have pretty much stayed right there, but I have to note that the dizziness returning like it has, has got me disappointed and upset. It's not like I can just say "I wonder if my veins re-stenosed?" and just go down to the hospital, get checked and my veins cleaned up. That's the pisser of doing this so early. So glad I did since this all seems to be a process of people starting this, seeing a small number of patients, and then stopping again as they get paranoid since this is not a proven fact yet. Well guess what? Neither are the MS meds. They are far from proven fact in their efficacy as well. Watch this TV special

it's very telling. I mean people will let us pump ourselves full of, let me say it again, UNPROVEN drugs that are toxic, yet they won't let you open an occluded vein? That's just not right in my opinion as they've been ballooning veins that are stenosed for years and it's extrememely safe. Now the stents I have in are not considered so safe, but people are stopping ballooning because of newspaper articles. This pisses me off because when the MS "wonder drug" (eye roll) Tysabri was first put out, it killed a few people. Patients clamored and it was put back on saying that it was done "for compassionate reasons". Well you can do this surgery for that reason too. The one guy in the video doesn't think you should even be checked, but all you have to know is the loose connection with the efficacy of these drugs to know there's not much of a connection there either.

So it's perplexing that I'm getting dizzy again. BUT A) that's not a new symptom, and B) I flippin' ran a little bit and it helped. So once again, I have to note that with secondary progressive MS there is damage. So I may just be stuck in this kind of limbo where I almost really feel solid, but I can work myself up to feeling pretty bad with not much effort; still exhibiting many MS symptoms. That sucks, but man oh man does it beat progression. I can walk and go out and even run (well it looked almost like running) for a little bit. So that has me on the upside of down and the dropped toast is butter side UP today. I've got a lot to be thankful for, and pragmatically, not much to be sour about when you think about where I could be right now had I not had this "unproven and untested and only supported by anecdotal evidence" procedure done (like I give a rat's ass Dr. Freedman). I'm glad he (the skeptic in the video) has my best interest and safety in mind. However, that argument really only holds water on dangerous procedures and drugs. It doesn't hurt to go in and baloon these veins. Just watch the video and you'll see the vascular surgeon talking about the safety. So him being skeptical would not nearly look so smarmy if he said "I totally do not agree that there is any connection to MS, but if you want to balloon your veins, go ahead, it's your dime". Instead he looks like he has an agenda since it's not dangerous to test and balloon and he is cautioning against people doing it, but he'd give you a prescription for a known dangerous drug in a heartbeat. Oh well, he probably thinks he has to save us dumb masses from our uneducated selves!