Fighting an Uphill Losing Battle

Last fall I started reading ALS/MND blogs after witnessing the Euthanasia videos Choosing To Die and The Suicide Tourist. There was a few other documentaries but I noticed a theme and perhaps it was unintended. Most of what I seen were people choosing to die that had ALS or MND. Or perhaps the documentaries chose to just show those committing suicide had ALS. Sure there was also Multiple Sclerosis, cancer and PSP (short stay in Switzerland) but the majority shown had ALS/MND.

If you're unfamiliar with ALS do a Google search, even with the generic definition it's scary as hell. The possible devastation and debilitating effects of this disease before someone with ALS dies is surreal. Adding to the hopelessness there is no treatment or cure. Sure there's one medicine prescribed that could extend life for a couple months, months not years.

There is also con-artist who try to sell snake oil or unproven treatments as a possible cure. Realistically even though the con-artists are criminals they do give families hope, hope they might not of had. Some of our modern medications or surgeries happened because of a fluke in research. So when options are limited why not??  The bad thing of improven treatment is it robs someone with ALS of precious time. Time is limited for most people with ALS.

ALS doesn't discriminate on gender, age or race. There is no way to predict who will get it unless the SOD1 gene is present . And unless there is family history of ALS the Drs would not test for that gene. Familial ALS occurs in 5-10% of new diagnosis. There's a mutation in the SOD1 gene located on the 21st chromosome. Over 150 variations of the mutation are documented and in most diagnosis there's no history of FALS (familial Amyotrophic Lateral Sclerosis)

So after I learned more about ALS from the medical standpoint and about Euthanasia, I chose to read blogs about people living with ALS. I follow 2 on a daily basis and 2-3 more monthly. From a medical standpoint it's hopeless but how people deal with the hopelessness varies from person to person. 75-90% of the blogs I've read mentioned suicide at some point. Most of the blogs I read are people choosing to live, adapting to each loss as it occurs with disheartening enthusiasm. Grieving for each new loss but continuing to live with ALS.

One day the blogs will abruptly stop and I may never know if they died or lost the ability to communicate. One of the bloggers I follow may decide to end thing before they are unable to do so but I may never know with certainty.

This is their journey not mine. If they eventually say enough already and take a way out, that's their choice. There should be laws to help them.