ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Thursday, July 17, 2014

And There Are So Many Books That We Would Love To Finish

A few weeks ago there was a list published of the books we start to read and never finish.  Thanks to e-readers, we are caught in our tracks.

In 1996 on the day that Mom was diagnosed with ALS, I went home and started the research that every family member does.  I got out the old Merck Manual and the Dorland's and didn't like what I saw.  I used the then state-of-the-art dialup modem and got online at Prodigy and Compuserve and searched. Blogs weren't invented yet, but I found a couple of message boards that served a similar purpose.  There was a woman on one who gave a continuing stream of some very helpful nuts-and-bolts information about dealing with ALS.  I knew the outlook wasn't good and that we would need all the help we could get.  I read her posts in chronological order for nearly an hour. She had a gift for being helpful.  They suddenly, there was a post that she died, surrounded by family.  No!  Out of the blue the stark reality of ALS hit me.  Bright, helpful, productive people who are able to write one day are stopped in their tracks by a disease with no mercy.  I went back and reread looking for a better ending.  There was none.  Her story was ended long before its time by ALS.

Over the years blogs have arisen and it's not unusual for people with ALS to blog their journeys. Some are warm and hopeful, others are edgy and dark. Some are pleasant and cooperative, others are outraged and demanding change. Some are all about ALS, others speak little of the disease itself.  They all are important for understanding some courageous people who are facing an outrageous disease.

The big problem today is the same I experienced that night in 1996.  The blogs all end before the author is finished.  ALS stops it all.  Tomorrow the next person starts a new blog.

Fortunately the internet preserves some of these valuable writings long after the blogger has died.  The endings are often abrupt.  The work is not finished.  That's ALS.

There are many blogs from living people with ALS and you can find those with a Google search.

Here are some oldies that are part of a valuable archive of how much really hasn't changed in the world of ALS.  They will give you painful insight into the people and the disease, and we should all look for the ideas that will finally fix the fight against ALS. Some started before the writers even heard of ALS. All were ended by the writers' deaths.  You'll get the best understanding if you read them from oldest to newest entries.  I've tried to point you to the older posts.

http://barbarabrenner.net/?paged=8

http://scjohnson63.tumblr.com/page/6

http://als1dog2kids1wife.tumblr.com/page/2

http://brainhell.blogspot.com/2003_12_01_archive.html

http://www.lifewithals.com/Blog.html

http://carlamuses.blogspot.com/search?updated-min=2006-01-01T00:00:00-08:00&updated-max=2007-01-01T00:00:00-08:00&max-results=5

http://www.melissa-erickson.blogspot.com/search?updated-min=2008-01-01T00:00:00-08:00&updated-max=2009-01-01T00:00:00-08:00&max-results=12

http://www.iambreathing.com/plattitude?page=6

http://kensjourney.com/index.html

http://alsboy.wordpress.com/2008/08/

http://twohlson.com/journal/











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