Saturday, April 9, 2011

Physicians, Nurses, Aides -- Where Do You Look For Car Or Hotel Reviews?

Dear Healthcare Professionals,

I read in this morning's paper that more of you are going online to market your practices and to teach patients what they need to know about wellness and their conditions.

Here's a news flash. That's a two-way street!

You should also be going online to learn about ALS. There is a whole lot for most of you to learn. I'm not talking about slick CME courses (although there are some if you take the time to register and login at the CDC's ALS Registry site. ) I'm talking about learning about ALS from the people who are in the trenches. Do you think you already know a lot about ALS? Do you think that it's so "rare" that you don't need to know about it? Do you think that once you've seen a case or two that you've seen it? Wrong on all counts.

Here is some gritty continuing education for you. Simply take a look. You may have to register on some of these sites to be able to view the conversations, but you can handle that.

If you are shopping for a new car or a vacation spot, I'll bet you're willing to search the internet and learn. How about putting the same effort into learning about life with ALS? Oh, and it's a family disease as you'll soon see. Caregivers run themselves ragged and kids are caught in a nasty pit of caregiving and emotions. It's a disease where patients have to rely on each other to figure out how to navigate the conflicting information they get from the healthcare system. It's a disease where patients get tired of having their peer friends die. It's a disease where professionals who are supposed to help them don't really know enough to do so.

Take a look. How about putting as much effort in understanding ALS as you would in shopping for a new car or choosing a hotel?


ALS Grumpy said...

Just for those who will not take the time to look at the links above, ALS or amyotrophic lateral sclerosis also known in the US as Lou Gehrig's disease is a fatal neuromuscular disease. No cause, effective therapies or a cure are known. Patients become progressively paralyzed while the minds remain sharp. It is a cruel disease that requires special health care.

Does this pique your interest enough to look at the links? It should if you are dedicated to your profession.

Beth said...

My uncle just passed on due to Lou Gehrig Disease. I have made it my mission during Nurse's week to learn more about it, thanks for the resources. It truly is one of the worst one's out there...

ALS Grumpy said...

Beth, Honor your uncle and all of us fighting to live with our withering bodies, be a teacher to all the nurses that work around you. Be our voice, please. If there is an MDA or ALS Association chapter near you and attend a support group. Invite one of the staff from the ALS organizations to arrange an in service for your healthcare organizations. Please do this. Don't forget.