Wednesday, February 25, 2009

Reader's comment and my response...

One of this blog's readers, and a FB friend sent me the following post. She sent it to me via FB because for some reason the "comment" section was not working when she tried to leave a blog comment. My response to her comments follow.

Here is her post:

----Begin Note---
Hi Bill- This Blog is beautiful. You are such a wonderful writer but what strikes me the most is what an incredible husband you are.
One of the worst problems, as if the diagnosis of ALS isn't devastating enough, is that people do not have the love and support of their family, even close to what you so eloquently express. I wish I could secretly e-mail this blog to quite a few spouses. I am so focused on helping in any way I can, because I can. I find the courage and determination of people with ALS overwhelming, but I would love to find a way to encourage healthy people who aren't dealing with such a horrible disease to get on board and to start helping.
Yes- a lot of this has to do with raising money, but the more people who find out just what happens with this disease, may become as focused and committed as I am and their dollars will help find the cure. As we have seen with so many diseases, like HIV. In our lifetime we have seen that death sentence turn into a disease with hope. We need to be like Breast Cancer and to also have ALS Survivors. But it's crazy to me, that people battling this disease are almost alone, showing up on Capitol Hill, spearheading fund raisers and yes, writing blogs. How do we harness the healthy people who CAN,to join this fight? Thanks for sharing. I'm sure some people have bumped into it who have never heard of ALS before and maybe they'll become involved after reading your stories.
-----End Note-----

First of all, thank you for that first sentence, I am blushing.

Now to the serious business of this great note. I have a pretty intense opinion about this so hunker down, put on your metal underwear or Teflon jacket, because I'm about to go off on this topic, and remember I do this in the name of Love.

People don't care about something like this until they FEAR IT. Right now ALS - Lou Gehrig's Disease, Motor Neuron Disease...whatever you call it is a phantom to the general public. I know because 2 years ago, I WAS the general public. I had no clue as to what ALS was or what it did to people. I didn't know that if you get it, they tell you they are "sorry, but that you are going to die, probably within 2 - 5 years and there is NOTHING they, you or anyone else can do about it except maybe make it a little more "comfortable" for you to die."

Back in the late 80's hardly anyone that was heterosexual cared about AIDS because it was a gay person's disease. When did the public start caring? When the facts came out: This disease is sexually transmitted between men and women and women and women too, and Oh, by the way, not all men are 100% gay, not all women toe the line either...hmm. If you were sexually active and understand how viruses spread and could do a bit of math (or read any of the columns of the day that did the math for you) then you did learn to fear it.

Oh, and yea...if you get in a car accident or have to have a blood transfusion for any reason, um yea, you could get this from that too. And, you will die if you do.

People started to pay attention, given the fact that they could realistically die and all. Money flew at the problem. Scientists figured out at least how to prevent an HIV infection, caught early, from becoming a death sentence of full blown AIDS. I have friends that are infected living completely normal lives except for the drugs they have to take to keep the infection at bay.

Here's the problem...ALS is, as far as we know, not infectious. Only about 5% of it is hereditary, but guess what...people that have family that died of ALS tend to care about this, and for good reason. If it IS in your family, there's a decent chance that you will die from it. That being said, no one knows what "causes" it if you don't have the gene. H had emergency surgery with multiple blood transfusions about 5 months before symptoms started appearing though. That might scare people a bit...they don't' screen for anything like the ALS gene or things like Lyme disease that may "cause" ALS or at least mimic it. They don't screen for a lot of things that "may cause" it.

H didn't do anything wrong. One day she woke up and couldn't clip her ski boots. That's how it started. 95 or of 100 people that get this disease will never know why they got it. YOU COULD WAKE UP TOMORROW AND NOT BE ABLE TO CLIP YOUR SKI BOOTS, or zip your kids jacket, or turn the keys in your car's ignition on a cold day, or fumble on the last button of your shirt.

People... in case you didn't know this or figure it out from the post above...there is no cure, there is no treatment, there are no "survivors" of this disease to run or walk anywhere for a cure. If you are diagnosed with ALS, you have about a 98% chance that you will be dead within 5 years. Most die within 3 years. A few live for 10 or more years. A FEW. If you are one of them, you probably can't move anything but your eyes, are on a ventilator and have practically unlimited financial resources, holding out hope that someone will figure this out before you have to unplug your vent. These are the stark realities of this disease today...February 25, 2009.

And in reference to the note above related to spouses or family of people with ALS that are not supportive...PLEASE, step up. I, of all people, know this is hard, but hang in there. Do NOT let them down. Do NOT leave them alone or at the mercy of someone else. Do everything you can possibly do to take care of them. Get help too, reach out beyond your comfort zone if you have to, but DON'T LEAVE. It is not fair, it is not right, and you will regret it forever. Please understand that whatever you are going through, they have it 10X worse than you do.

OK, that is out of me, thank God. Once again, I hope I didn't offend you. I seem to be saying that a lot more lately, which means I'm probably on the right track.

If you want to help find a cure, you can contribute on the link below or to your local ALS support group, or any number of places.



  1. Hi
    You mentioned Lyme Disease in your blog.
    I hope you have thoroughly investigated this with a Lyme Literate Medical Doctor. There is such controversay over this illness but worth taking seriously and not with your normal ALS consultant.
    Read latest post but also two posts back Today I cried and the comments about ALS.
    Dr Martz story is worth reading i think found on Can Lyme but try googling Dr Martz and lyme.
    Clearly not all ALS originates from Lyme Disease but worth a through checking out.
    Sorry if you have already done this.
    Best wishes to you both.

  2. Hi
    Sorry I have had time now to read back through your posts and see that you have seen LLMD.
    It does not seem that H took antibiotics long. I have been on antibiotics 2 years for severe arthritis/muscle weakness clearly not as ill as people with neurological problems. I can walk upstairs again now something I could not do for 3 1/2 years and ist still took so long to be so well mostly painfree but still a few symptoms and still when I stop they soon come back.
    So what I am trying to say is are you sure you tried them for long enough period.
    Best wishes.

  3. This particular post brought tears to my eyes because your comment to spouses and family to step up to the plate was so touching. I have CDC positive Lyme disease. I have experienced most of your wife's symptoms but not with the same severity. I was fortunate early on to receive antibiotics for several infections. I was first diagnosed with mono, but two years later and many doctors, I finally tested CDC positive for Lyme disease. It was the early antibiotics for these infections that I believe may have saved me from a worse fate. I was extremely weak in the beginning of my illness, and along with that came a myriad of other symptoms, but I would relapse after a few weeks of not so bad weeks. I never related them to getting off antibiotics. I thought whatever I had was causing flare-ups. I didn't put two and two together. I knew the antibiotics were helping symptoms, but I had no idea why and no physician was going to give me antibiotics based on "they seem to be helping me but I don't know why," so I never really pursued that thought much. I am not cured. I just barely began treatment with M from CTM whom I know you are not a fan of, but she is helping me, and I will write on your blog later. I'm hoping that the fact that I am CDC positive will maybe lend some credence to the fact that Lyme disease can cause these severe symptoms. I honestly feel if I had not had those early antibiotics that I might be unable to walk or that I may even be dead right now. The symptoms were that bad in the beginning. My brain fog is such that it takes me a while to write longer posts because I have to reread them over and over and take out parts where I continually repeat myself or spell something wrong (okay, so I'm a spell freak) and my thoughts are not as fluent as they should be so I have to cut and paste sentences where they really belong.

    This is such a lonely disease as are many debilitating diseases. I have already pondered my death and told my husband it's okay to date, and I'm okay with dying blah, blah, blah. A few days ago I got off the death train, and decided I had to live even if I am dying. I do have hope that I can be cured or at least I can be given more years, but I also know that for that to happen I'm going to have to allow myself to be very sick and useless and that is a hard thing to do. It is overwhelming to me what you did for your wife. Lifting more weights to carry her up the stairs? I am......can't think of the word that goes there but it's a good one. I don't think that thought would even occur to most men. She was as lucky to be married to you as you were to her. As a wife myself who knows I may be facing death in the near future, and maybe not, I know I'm not supposed to be a fatalist and I'm thinking I'm feeling far too sorry for myself, but it isn't that scarey once you accept it. The hardest thing to accept is not where you are going but what will happen to your children when you are gone. What you have done for your wife is exactly what would lift that burden of leaving my children off my shoulders. I'm sure she must have known through your actions that your children would be healthy and happy because they had a father who did step up to the plate. So from all of us suffering out there, thank you for your amazing example of what I consider as close to a disciple as you can get.