Saturday, December 5, 2009

Another week in the books feeling pretty good

I noticed it had been a week and wanted to update to let everyone following know that it's been another good week. I haven't had any massive improvements or anything, but I've just been plugging along, working out every other day on the Bowflex. It's still just to keep stretched out more than anything as my shoulder, although somewhat better, will still not take any weight until the nerve heals. It's weird to work out like that. You don't keep adding weight as you get more in shape. My shoulder will take what it can take and I can't build any strength in it until my trapezius muscle reappears. But I do it to keep my range of motion pain free.

My wife wanted me to talk about how I've been feeling in a different light. You see although I am doing better than I was, and it continues, she's like "but you still come home and bitch about how you feel, you wouldn't know that by reading your blog". She's right. But she needs to realize what I try to keep conveying. I can still get myself worked up and "MS'y". However, it's so much better and that's the baseline I compare it to; six months ago. Back then I was at a point where I was hardly capable of two trips up the stairs a day. Now I go where I want to, when I want to, and then bitch about it! But those with MS know what I'm talking about. When you get steroids for three days, you can do SSSOOOOO much more, but you still have your shit to deal with. This is like that 24/7 now and I think it's great. So she's made me realize that while objectively I am doing much better (and she could give you some personal insight into that thank you very much :-)), I still do some of what I talk about back in my "A" word post. I still bitch about ability when compared to how it was when I was normal. I just haven't figured out how to work that yet, but I will.

So I had another really good week at work where putting in 45 hours was absolutely no problem and I DIDN'T GET DIZZY. That is so freakin' huge you guys just don't even understand. It takes your life over. You don't want to go anywhere where you might fall into something, you don't want to walk anywhere where you don't have something to grab onto. Imagine being in the middle of a field and being scared to move. You just don't feel stable. And while I had some dizziness, like everyone, occasionally in my "normal" life, you can't really draw a frame of reference for years of constant dizziness. It's not something you get used to and I don't know why. You just don't adapt and settle into it. It truly is a despicable symptom. One of the evil ones if you will.

So my energy is still up and my pain is down. Most of my stuff is better as I can do almost everything 'longer' and need less recovery time. Hell, before you know it, I'll be normal! Wouldn't that be nice. But I must admit to thinking there's probably a limit to my recovery, but I'm going to keep trying no matter what. I have to keep exercising and working and living. It's awesome to even think of life in that framework. I wasn't ready to give up on life, but I was at the point where I was starting to forget what day it was because it really didn't matter. Each day was just trying to get by and get to bedtime without too much pain and discomfort. I think some of you know where I'm coming from there. You just don't care anymore because you feel like if you exert any energy at all, bad things will start happening. Well now I think about what I had to do today without dread. I have a Christmas party to go to tonight and I'm actually looking forward to it instead of thinking "man I better schedule a nap in there so I can make it", and even then hoping it would actually work; because sometimes it doesn't matter what you do, you're just going to not have enough in the tank. I get to hang out with my pretty wife and have her look at me as we socially engage and think about going home and maybe even getting frisky!

I know that's too much information and probably is even in this setting. But there are things that are huge in people's lives and that was one of mine. I think it is for all men with MS. We want to be able to go on a date, and being that we're all dogs, dates are just foreplay where you use your wallet anyway! I know that's off the cuff, but guys, really?, don't you think about it somewhat that way? Maybe I'm just a perv. but I'll tell you, when that starts getting messed with, it rocks your self esteem hard. I'm in my 40's and it's still all I think about! I love that though. I'd rather think about that than MS. But I digress. Those of you that know me well know that I can say anything at about anytime and it's also true on here. It's one of my biggies and I promised everyone I was going to talk not about the science of all this, but how it affects my life, and that's how it's been affecting it. If it takes up a big amount of my time dwelling on it, then it's worth posting how this procedure affects it.

So there! I am needing to report about an adverse event that happened during a procedure. I know all the details, but what it came down to is this. Dr. Dake is using smaller stents now because of what happened to a few of our shoulders. Well one guy had a stent that was already placed earlier in the procedure come loose. It did it when one was put below it and it migrated all the way to his heart. He's doing well now, but they did have to open him up to get it out. That really sucks, but we are, after all, learning as we go. So since I have to be talk about the good and the bad, I have to report that. Now how does that affect MY opinion of all this. One answer, it doesn't. I'd have done it anyway knowing that, but that's just me. Someone else reading this may say "whoa, I need to wait until they get this all worked out." I couldn't wait. I was looking at home modification and a power chair. So I was glad I did it not even knowing what the risks were, but I can tell you with all confidence that I'd still do it again. I told one of my friends I talk to that I don't even know where my cane is. I still haven't found the damn thing and hope I just left it somewhere if you want to know the truth.

I am going to be going up to Detroit in about a week and a half as I alluded to before. Me and the person who went immediately after me at Stanford are going to get the MRI-SWI and see how much iron deposition we are looking at. If that's the culprit, then we'll see a snapshot now, and then one in six months to see if my drinking straw like jugulars open things up enough to allow some of the iron deposition to reduce. We really don't know if that will do it or not. Will it take some sort of agent/chelation to get it out, or will it just be up there and it just is what it is now? That's what we aim to find out. So I'm fired up to be going and doing that. Now that my stenosis is fixed, I'll do anything else to help us discover what part of the puzzle this is. Is it "IT"? We don't know yet, but we won't find out if we don't keep forging ahead. At some point I also want to get the doppler put on me by someone who knows the protocol as there is still a disconnect between us and Europe in the use of that technology and it really has to do with training as we have easily as sophisticated devices in the USA as anywhere in the world. Well I'm off to watch the University of Cincinnati win the Big East title by beating up on Pittsburgh (I hope!). Wish me luck in Michigan and Merry Christmas everyone, I may not post on here again until the new year. Shit's gettin' ready to get busy!


  1. Lew,

    Glad things are still going well for you on, um, several fronts.

    I'm on Dr. Dake's waiting list, but just got a letter from him indicating they are not taking new patients until their clinical trial starts next year.

    In the meantime I'm working my local docs to at least try to see if they can find any stenosis in my veins. I'll let you know.

    I posted a piece on my blog about my feelings on CCSVI. Check it out when you get a chance.

    Have a great holiday season.


  2. Lew,

    Thanks for the update, very happy so see things are still going well for you!


  3. I love reading your blog. Thank you. You give me hope:)

  4. Lew,

    Your blog is awesome! From a current Tysabri patient to a former one, I just heard about CCSVI last week at my most recent infusion. Another patient passed around an article from the Canadian paper, The Globe and Mail, which spoke about the work Dr. Zamboni has done / is doing.

    Get back one; one Google later and I am reading all about someone who has undergone this surgery right here in the US! And as a guy, aged 39, your story speaks to me in so many other ways too!

    So, thank you. Thanks for sharing your story. It is so important to the rest of us: the 400K!

  5. Hi,Lew. I have been following your wonderful blog and your TIMS posts. Here is my most recent post about the Buffalo study.

    We are all wished a HOLIDAY OF HOPE by the BNAC research team.

  6. Lew:

    I just found your blog today. Thank so much for doing this. As you know, the information available in the U.S. media on CCSVI is non-existent and it is people like you and I who have to work to put this out there for other M.S. patients. I only found out about CCSVI 3-4 days ago. I've already started a Facebook page called M.illions S.trong to Raise Awareness of CCSVI, link:
    All I do is search every day for information on CCSVI and people who have had the procedure done. I've put a link to your blog on my page today. Thanks again - this is very well written and I've enjoyed reading about your experience.


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