Welcome New Readers!

O hai.

Today is my last day of work, before a three week vacation and then MLOA. I sent out an email to my coworkers with a link to this blog, in case they wanted to keep up with how I’m doing. I got a lot of questions asking how they can help, and so I was brave and gave out this link. You can help by listening to my story, by learning about ALS, by becoming part of the Death Positive community, maybe by sliding a few bucks to my crowdrise fundraiser on the left there.

Thing is, yesterday was a Very Not Good Day and it required a verrrrrrrry swear-laden rant, and I didn’t want that to be peoples’ introduction to this blog. So here instead are a few of my favorite positive entries to get you started.

My diagnosis story:

The Road to Diagnosis, Part One

Death Positivity:

Death Cafe

The Walk to Defeat ALS:

This is What A Lucky Girl Looks Like

How Intel can improve the lives of people with ALS:

Talking the Talk

What an ALS Clinic Day is like:

Let’s Get Clinical! Clinical!

So, if you’re new here, welcome. I hope you find this somewhat educational, maybe entertaining a little bit. There are a lot of useful resources on grief, death, and dying up there, too. I hope you like it here.

6 thoughts on “Welcome New Readers!

  1. When did you stop taking prednisone? July/Aug 2014? Would you consider retrying it at a lower dose? I personally know PALS who stabilize on corticosteroids, and being that you were stable March – July 2014 on prednisone makes me think you may too.

    1. I stopped taking it in 2004, it was a last-ditch effort to see if it maybe was not ALS after all. If I responded to the prednisone, then what I had wasn’t really ALS. Unfortunately, not only did I not respond properly to the prednisone, it made me actively suicidal. So yeah, I was taking a pretty low dose to begin with and I won’t be going back to that particular drug.

    2. I don’t think it’s so much that I was stable in March through July, is more that my progression is so slow there was no measurable difference in that time. I definitely have ALS currently, and there was no measurable difference between my last clinic and the one before. There is definitely decline happening, but there was no measurable difference. I don’t think we can call that stabilized. I really wish the prednisone had helped.

      1. I know you’re sick of hearing people recommend potential therapies but I love your blog and even if there’s a chance this works, it’s worth it. There’s a lot of research and anecdotal reporting or corticosteroids helping stabilize/improve ALS. It seems like you had a bad experience with prednisone, but high dosages of prednisone can be toxic over long periods of time — Reports of psychosis like you experienced aren’t uncommon. That’s why the people I have spoken to are using Dexamethasone at low doses.


        This link is for hydrocortisone, another corticosteroid.


        Im also corresponding with a couple people who are responding to modified versions of Nadirs protocol (lower doses and less toxic). It may not work, but I think the low doses of Dexamethasone are worth a shot. It’s inexpensive and your doctor should have no problem prescribing it to you should you wish for a trial run. Please reach out if you decide to try, I am soon experimenting with this protocol myself and would love to hear feedback.

        1. I’m always excited to hear about what might work for other people, as long as it’s actual science! I’ve got Clinic in two weeks, I’ll ask my neuro about this studfy. <3

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