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.

        https://nadirakinci.com/nadirs-amyotrophic-lateral-sclerosis-remission-protocol/

        This link is for hydrocortisone, another corticosteroid.

        https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5383939/

        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.

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