Monday, October 4, 2010


I just published the last post since, I'm happy to say, this program automatically makes drafts like every minute so you don't lose any of your random thoughts! Well I suppose the title sort of gives it away so I'll get right to the monumental decision I'm in the process of making. I went to see my very cool neurologist today and she helped me make a decision. She didn't help me by steering me, she helped me realize that you don't have to have one foot in a nursing home to retire. I don't know what's what in the world of my progression, but I don't feel like I'm going down a hill like I did before the procedure, but I also feel like my left leg is weaker than it was six months ago. So much so that it has hindered me to the point where it's thrown everything out of whack except my eyesight. It's just now obvious that I wear out and have to help my left leg by limping at 9AM now vs. 9PM where it was a while ago. I mean I CAN still walk. I just can't walk very far. So I went up a notch on the old EDSS (Expanded Disability Severity Scale What it is is that you climb from a 4.5 to a 5 just by being able to walk less. And that's the thing about me and walking. We have a very tense relationship. I can do it, but just not very far, and hells no when it comes to walking around stuff, over stuff, in a tight space, or anything like that.

It's got me down for sure, but I know I'll get over it. What's happening is that my "load" is now taking as much time to manage as doing my job. By "load" I mean your stuff you have to deal with to actually DO the work. It started about three months ago as I started voiding less of my bladder at work. So then I obviously have to go pee more which in turn requires more walking and then the 'cascade' starts and everything starts functioning poorly. So I took a leave of absence from work. It's a wierd thing to do that knowing that you don't just have to go sort stuff out, or do some extra therapy to get back to whatever level of function you need that you aren't performing at. It's not like you go off to 'get over something'. There's no getting over this and no amount of relaxation or time off is going to improve my condition. But not taking care of myself can most definitely deteriorate my condition. And that's what's been happening. Stress, working too many hours, skipping therapy appointments to meet deadlines. All that kind of stuff. And it was making me progress again. I obviously can't say that with any kind of certainty, but I've only been off two days now and things like my bladder and bowels are already working markedly better since I'm allowing myself time to deal with my slow motility instead of just pushing it aside and dealing with things later with medicines that KIND of work.

So although I'm very anxious awaiting the approval of my disability application, I know this too shall pass and I can now manage my disease instead of trying to just blaze through the day and getting all stressed out and almost having many, many accidents, dizzy spells, fatigue and everything else that comes with pushing myself physically. The relief is absolutely amazing since I can actually sleep when I need to. Be still when I need to and all sorts of stuff that I didn't allow myself to do so I could keep working. Working is important to me. It has just gotten to the point where it was killing me to keep trying to be more than I am physically. I mean for real. The pain and headaches and weakness. It had just become too much and I'm taking a much needed break. For how long we'll see, but I have to reprioritize and put my health first. That seems so obvious since you can't do what you want without your health and in my condition it's even more important to take care of myself.

The one thing that is the absolute hardest to deal with here is to stay up for "the fight". Everyone who knows me knows I'm a fighter. I've fought this mother tooth and nail for ten years now. Here's the quandry: When you're fighting, you pull your motivation from whatever goal you are trying to achieve. In most cases, you fight to win the fight. There's no winning this fight. So I have to get up to have things suck less. Now there's a motivational poster if I ever saw one. "Exercise as much as possible despite the pain so things can suck less than if you didn't!". Totally facetious to be sure, but that's what it feels like. I'm going to be going to therapy and doing all that stuff, and I'll do it, but I dare not call it 'rehab'. Rehabilitation is to do something to get better. The therapy I'll be doing will just make things get worse slower I suppose. That's a very hard place to get motivated in, but I'll figure it out like I always do. I don't have an option and I've kind of come to a quiet calm realizing that, for me anyway, the procedure most definitely 'got in the way' of my disease progression, but has not completely stopped the disease process.

I firmly believe that is because of my type of disease; secondary progressive. My shite is not inflammatory anymore, it's degenerative. I don't even know if the same mechanism that screws you up in the beginning is even still in play anymore. I mean I haven't sprouted a new brain lesion in years despite progressing. And I'm fast approaching the 18 month mark where Professor Zamboni had published that for progressive patients at 18 months, there was really no appreciable difference. However, that could also mean I could stay stable and that's what I'm hoping for obviously, but things that have happened as of late kind of dispute that. Yes, I am most definitely in a better spot than before it all since I'm still not dependant on my cane. But I most assuredly can say that my left leg is weaker than it was. That means progression. Whether it's just aging with a screwed up nervous system (ie, things age much faster in this state), or degenerative progression I don't know and really don't care since there is nothing I can do about it.

So I WILL keep up the fight since that is the ONLY alternative vs. despair. I simply won't go there; I can't. I'm not good in that place and you all know it is paramount in my mind to figure out how to be somewhat positive and forward thinking through this. I can't say I'm not bummed fo' sho'. Who wouldn't be? I'm allowed that and it doesn't mean I've given an inch to anything. It's just a shitty situation. So now I have to go on long term disability while I figure out another way to make money. I haven't a clue what that will be, but I hope this all has opened up some sort of creative door in my engineer's brain and I can start creating stuff like books or poetry or something. I mean aren't all the good artists tortured souls? lol! So anyway, I'm getting tired of typing and am about out of thoughts for the moment so I'll sign of with someone else's thought!

"There are two classes of people on this earth; those who espouse enthusiasm and those who despise it" (Germaine deStael) I think I am an espouser....but don't tell my wife!!


  1. Lew,

    My girl friend says that she goes every where but slower than the others.

    Like me, you will be espousing retirement, great.


  2. A quick note about what has worked for me. DIET, DIET, DIET.

    Its more theory than anything else, but think about trying the following. With your physicians permission, do not eat any Legumes (beans) (of any kind), Gluten (grains) egg, dairy, tomatoes for 14 days.

    Better yet, eat fresh fruit and vegetables for 14 days. Just try it. What do you have to loose???

    Take stock in your symptoms (make a list and number them 1-10 before your diet change) and then at day 14, list them again.

    If that seems to make a difference, then try another 14 days.

    Just try it for 2 weeks. Eat fresh fruit and vegetables (not cooked) for 14 days.

    Avoid like the plague dairy, egg, legume, gluten and tomatoes (nightshades).

    Its harder than it sounds......but....
    a whole new world may await you.

  3. OK, not to beat a dead horse, but I was cruising an article just hours after I wrote about DIET above, and I couldn't help but think that perhaps this might move you to the power of diet. So many people (almost everyone) totally under-estimates the power of what you put into your mouth and the effect it can have on your health.

    Give peanut butter to someone who's allergic to peanuts and see what happens. Put a hay fever teenager in a blooming farmers field and see her reaction. Feed shellfish to someone who is allergic and watch that reaction.

    What you eat can have profound, even life threatening outcomes. Having primed you, notice that the "medical establishment" was in effect killing this girl. What did the NEW DOCTOR do??? Changed her DIET !!!!

  4. It sounds like you've made the right decision, and hopefully with the work stress out of the equation, you'll do better. Good luck and keep us posted; take good care of yourself.
    Wish you the very best.

  5. I HATE DIETS!!!!
    I have added myself to follow your blog. You are more than welcome to visit my blog and become a follower also.

  6. Lew, you have to do what you feel is best for you, only you know what makes you feel better and what makes you feel worse. With the determination that you have and the support from your family and friend will help you through this journey of yours. I feel for you and pray that this works for you. Always in my prayers for both you and your family. Tell Brenda hi and tell my beautiful Sarah that her past caretaker when she was young loves her. Love to you and your family.


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