Friday, April 22, 2011

Cure ALS. Save The Earth.

Today as we focus on the health of our planet, let's consider an investment that will save human lives and the life of Mother Earth.

ALS requires incredible amounts of durable medical equipment. Once you acquire one expensive, plastic-laden device, the disease moves so quickly that you're ready for the next piece of equipment that will permit you to breathe or eat or communicate or move. Healthcare delivery has tons and tons of consumables that you have to buy with these devices.

Anyone who has dealt with ALS will tell you that it takes a lot of stuff to deal with ALS, and caregivers are forced into purchases that give them few planet-friendly options.

Today as we celebrate finding ways to preserve our environment and natural resources, let's consider an investment that will preserve some precious human lives, too. ALS research is underfunded. Let's fund it sufficiently and raise the bar on research efforts so that the cause and cure may be found. That will be good for people and for the planet.

Come to think of it, finding if there is an environmental cause that triggers ALS would be extremely good for our planet in many ways. Nobody wants ALS, and nobody should have to live its path of personal and environmental destruction.

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?