Saturday, October 17, 2009

Waxing Philosophical

Here we are and I haven't updated this thing in a couple of weeks. I'd hoped to be able to write of just constant improvement every week, but alas it seems that my expectations were a little lofty due to the progressive nature of my MS. What it comes down to is that I'm in kind of a holding pattern. I don't feel a lot better or a lot worse; which as I've stated before is a very, very positive thing since I feel if I wouldn't have done this I'd be writing a blog of unabated negative progression and how everything keeps getting worse. That's what you're up against here. You think to yourself "I'll do THIS if it starts up". But then you realize once you're progressive (and really to me during the whole course since it still plods forward despite the drugs) that there are some things you can do with diet and exercise; if you're able to exercise strenuously enough to make a difference. And that's your conundrum. You know what will help, but you aren't physically able to do it. So being in a holding pattern is A-Ok with me right now. There have been some improvements in energy level and things of that nature, but I'm used to them now and that initial improvement "jolt" was noticeable and my hope is that it's just so slow that it's hard to notice right now.

So that brings me to what I thought I'd write about this morning. What this does and how I've dealt with it. Even when you're disease if relapsing and remitting (RR), you still are progressing. In my case it really wasn't noticeable for about 4 or 5 years, but I obviously progressed during that time as my abilities started to go. But there is still a lot you can do, but what you CHOOSE to do becomes the mind fuck. You see there comes a time when you start to have to make decisions about how you are going to use your energy. Before all of this I would go to work, come home and work out and still do whatever the hell I wanted after dinner. And no saying "but you're in your 40's now, that was going to slow down anyway". That is true, but I was one of those guys in their 40's who had literally never been out of fantastic shape since high school. I would still be living like that for quite a while I know for sure. Work on the house, work in the yard, fix something, read, whatever. It was my choice and there were no doors closed; whichever one I chose I just walked through and did. Where I'm at now really is a weird spot. Let's take today for instance. A dear friend of ours daughter is getting married. That's a big event for someone with weak legs, a weak bladder and bad balance. So I need my energy to do that. But I also have to try and take care of myself. Which means taking a walk or doing some other type of exercise that I'm able to do. Well the thing is, I don't have enough in the tank to do both. So a decision has to be made. Take care of yourself, or meet your 'obligations'. In a vacuum, the choice is easy, you must take care of yourself as the #1 priority. But life is not lived in a vacuum. Life is about relationships, and if you don't engage in those relationships, they wither. Not that people just will turn their backs, but rather that your name just starts to not come up due to how many times you've made the choice to use your energy solely to take care of your issues. And why are you taking care of your issues? So that you can live your life! There's the rub; which do you do? It's definitely a balancing act for sure, it's just the state of my life and I'm doing it the best I can. But there's just plenty that I'd choose to do that I'm unable to do because of this. And people understand, but not really because I don't appear outwardly disabled until I get tired and the pain ratchets up. I don't suffer from fatigue, so it's really not just straight up energy, but it's that my legs will just get so wobbly they won't work anymore and I get dysfunctional dizzy. Then I can't make it to the bathroom and that's what I mean about my energy. It's more effort level that can't be achieved.

It's like the tipping point has been reached where taking care of all my bullshit has gone over into the 51% of my waking life arena and taking care of myself takes so much effort that I don't have the effort to give to "live life". That's when it sucks. I can take a lot. A whole lot. It's not like this happened overnight so it definitely doesn't feel like someone who had a major nervous system injury where their ability is gone in an instant. My heart goes out to anyone who deals with that with grace. Those people are who we should all idolize. That shit is hard. But I still can walk, just not very far, I can still hold my water, just not very long, and I can still stay upright with balance, but not after much effort. So it comes down to life has gotten to the point where I can do a little, but my family is still doing a lot. When I try and keep up is when it's just very difficult. I'm to the point now where I really can't. That's why I have flown across the country twice (still have a trip in November) and have three pieces of Nickel in my veins. I just hope this works.

Some of you are probably thinking "well it doesn't sound like it's worked". That's misleading and I've come to understand it better and that understanding has come from my shoulder and what's going on with it. I'm rehabbing that dude and it's not going bad, but all I'm doing right now is keeping it from atrophying; trying to keep the range of motion so when the nerve heals I can get busy strengthening it back up. Here's my take on why this works so well on people who are RR and why it's a long time coming for us progressive folks. When you're RR, it's all inflammatory. So the surgery takes the deoxyginated, iron filled, refluxed blood and takes aways the source of the inflammation. Well since the nerves aren't functioning correctly due to the inflammation, you take the inflammation away and whatever the nerve controlled starts functioning again. Like anything you'd take an anti-inflammatory for, take it away, pain is gone. Same concept here, take it away and it works again. Well for someone who is progressive, the disease isn't inflammatory anymore. That's probably why steroids (massive anti inflammatories) work so well for RR attacks and not so much for progression once you're not RR anymore. So now we've theoretically removed the source of the damage. Only in this case, there's no anti-inflammatory response. And here's what I learned about my shoulder; nerves take about 1" per month to heal. So my shoulder could stay screwed up for about 13 months since that's the measured distance from where my nerve got banged to where the dysfunction is. In my mind anyway, the same thing holds true here. If we indeed turned of the damage, now it's going to take a long time to heal. Think about the distance from a lesion in your brain to whatever is affected. So that is why, for me and all the other progressive patients who've had this done, it's going to take some serious time. So we have to keep moving as much as we can to stave of atrophy and wasting. I'm already down to 155 pounds from a normal of around 170. And my waist is 2 inches bigger! It's like rapidly accelerated aging.

So while this is where all this progression is taking you from healthy to where you're at, you stay busy, you try to keep working and living and doing everything you ever did. For a while you succeed. In my case for a good long while (well 4-5 years anyway) and then when the stay distracted/denial thing just doesn't work because you just can't 'push through it' anymore, it comes down on you like a ton of bricks. That's when you go "Oh shit" and finally realize that the life you'd thought you'd set yourself up for is out of your reach. Maybe the home you live in is not liveable for you anymore, all kinds of things happen all at once. That's the stage I had gotten to when I decided to do this.

So this make seem a little like a negative "I don't think it's working" post. But it's not. I'm just starting to let down some of the walls I've erected to stay sane through all of this. Trying to get to a place of calm acceptance because I believe it's painfully clear I am decidedly not going to go "back to normal" if this truly does turn off the damage. And one of the ways to do that for me is to understand what's going on so I can have a clearer understanding of what to expect so as not to get too let down. There is just some stuff where the nerves are probably dead, or close to it, and may never get back to their full potential. When you pass the age of 35 or so, your brain and nervous system lose alot of what's called plasticity, or ability to heal.

So hear I sit, writing this post instead of going to try to workout and take a walk because I'm going to the wedding tonight. I've made the decision that's what I'm going to use this 24 hours worth of effort for. Mon. - Fri. it's work. That decision is easy. It's the weekends that are hard because that's when you DO WHAT YOU WANT TO DO (read: live life), or try anyway. Sheesh, I've had 3 wedding in the last 4 weekends. It's like when we were about 25 and we were all getting married. Now it's our damn kids! Speaking of kids, I want to talk about the dynamic going on with mine. When I was healthy, I was a pretty aggressive life liver. And I wanted my daughter to "do it right", which meant to me that she was supposed to be like me. So I tried to make sure she was as competitive as I was, as socially engaged as I was, all of it. That was SORT of working. Well now I've just had to loosen my grip. I physically don't have the effort to live her life and mine. So I let go; a lot. And lo and behold, she is absolutely blossoming. She is becoming who SHE is going to be. Not who I want her to be. And it's beautiful. She is so fucking beautiful and talented it's not even funny. Everything I was trying to MAKE her do well she is doing so much better now that it's her that's providing the motivation. Sports, social life, everything. So my advice to everyone who wants a pleasant teenager is this: do everything you can to control everything, and then let go at about the age of 9!! That's obviously off the cuff, but it's worked for us. She is exceeding everything I ever thought she was about and it's because I'm letting her learn her own lessons. We parents of this generation are often times like snow plows for our kids. Our kids need to plow their own snow. I could go off on this for about 10,000 more words, but I won't. It really sunk home that I was doing the right thing when I was with my host family at Stanford. They seem to have gotten that memo out of the gate, and it's an absolute joy to be around their family. They have four kids under the age of 8 and they are all just so unique and you can just tell that THEIR personality is developing on it's own. No parent clones in that family. Just kids becoming who they're going to become and who will more than likely live up to their potential. Isn't that what our job is anyway? Not to knock down all the hurdles they have to cross, but rather to support them if they need help getting over it in their own way?

So I'm done waxing. I'm feeling strangely serene here lately because I think I've accepted the fact that just because I had this procedure doesn't mean I'm going to wake up tomorrow without MS. However, I do think this is the biggest part of the puzzle to MS. It might not be all of it, but I suppose it might. Since I'm 'dialed in' to what's going on with this CCSVI model, I can tell you that it is getting some serious traction. I'm going to put two links of news stories that have come out of SUNY (State University of New York) just in the last week. I think that it's, at least in the world of MS, going to shake the ground.

Until next time

That's the local news story link. There's a press release somewhere of just text, but I can't find it! It comes off sounding much more "professorial", but since I can't find it just trust me that this is getting a foothold, i.e., can't be ignored by the MS community (who is very heavily funded by the drug makers).


  1. I just founf ur blog, so I have catch up teading yo do, but from first post, you seem to be on simialr path as I. I am working on regaining my ability to walk/stand. I started around March and it is going rally well. My readers want to know more, hear each days small success, but there have been so many set backs and start overs, all needed/all good---I have beem abamdoned by the medical system and got pissed off and decided to go it on my own. I and mt disabled partner are amazed and thrilled at how far I've come. My READERS don't get how bad I wsa/am...most are DX under 5 years and grabbing for a new Dr, or drug, with every relapse or new symptom. I can't crush their hopes, so I ease into it, but it does make it hard for them to understand. I see how I can do this and IF I do I will write a book. I applaud your goal. I believe it is the only way back. We must figure it out. WE know OUR own bodies best. I too am VERY interested in latest findings, narrowing of veins, cooling, my MS was triggered by head trauma----it is all starting to fit for me.
    LOL Yeah, funny thing about kids, they really CAN "become" when we step back.

  2. OMG, my fingers are being worked on too--sry for typos.

  3. Thanks Diane, I have been following your blog as well.

  4. Lew,

    I have to admit you are an inspiration to me, you have so many ups and downs, but people don't realize it because you never show the side that says, "is it ever going to get better" I thank you so much and your family for coming to our daughter's wedding, I know it couldn't have been easy for you. Seeing Sarah and noticing how grown up she is and how remarkable she has become is just down right invigorating. You have a wonderful family and you are a great friend. I pray every day for you and only wish you the best. I, for one, don't know if I could be as strong as you have been. God Bless. Cindi

  5. I just learned about CCSVI and have spent the last 2 days researching, how I found your blog. The procedure sounds so promising but like many other advancements, the benefits seem distined for those in the RR stage. I am secondary progressive and haven't worked in over 2 years. I just want to be able to halt progression which is why this new treatment is so exciting. Your experience sounds very similar to mine, including your hope of recovery and shall I say your initial lofty expectations that don't seem to be panning out. You have the right attitude so keep moving brother!
    I went to China a year ago for stem cell transplants with similar results to what you've seen. I'm doing pretty good but most importantly haven't seen any real progression in the last year. My blog is if your interested. I live in Canada so my investigation is just starting but I don't think anyone up here is looking at treatment for CCSVI and I'm quite sure I would not be accepted into a program like Stanford. Time to rattle some cages in my MS clinics and research programs! I'm looking for any info I can find on this treatment so anything you can offer up is much appreciated. Good on ya for taking control and trying to find your way through this disease.
    Take care,

  6. I enjoyed the read & was glad to hear you chose to attend the wedding. Hope you had a good time. I also have some 'catching up' reading to do.

    I guess I'm lucky that my denial process (started May of this year) is coming to an end soon. I think I've already accepted it but haven't heard if for sure yet. Now I'm stuck at, "How do I treat this?".

    I have no idea what pharmaceutical road to travel on. Right now, diet and exersice is looking like the way for me but if there's something that can nip this in the bud now, I think I'd like to know more about it.

    Maybe it's time to really read those CCSVI threads.


I've figured out how to get everyone to be able to post on here.