Thursday, December 31, 2009

A new year on the horizon

It's New Year's Eve and we're on the edge of a new decade. Looking back -- 2009 was a tough year for healthcare issues. Some form of health reform passed, but still has to be conferenced into a workable bill for the president to sign in 2010.

I haven't read the proposed bills. From the sounds of it, most congressmen haven't done this either. So, I can't tell whether I am in good or bad company on this issue.

I know many people hate the idea of healthcare reform. The debate on the issue has really fallen into a dark pit (to put it nicely). The townhalls on the issue turned into violent shouting matches. My friend Rick sent me a nice commentary piece on the reform topic, which talked about how many of the arguments against past government improvements were being recycled in the 2009 debate.

When my husband Andy tore out the old metal cabinets in our 1940s era kitchen, he discovered a newspaper from 1958. It was apparently the year of the last remodel. The newspaper had an article about health care reform of that day. There was talk about Medicare and the Veterans Administration system. The article shared concerns by physicians and politicians that the proposed changes would created a socialized medical system and would be bad for America. I would share more details, but the newspaper yellowed from decades fell apart.

I'm not sure how the bill will impact us in 2010, but I'm looking forward to finding out. I'm going to keep an open mind about it and hope others will too. I won't be afraid to speak out about problems I have with it, but I also want to give it a chance.

Friday, December 18, 2009

New technology gives voice to Locked-in Syndrome patients

Communication methods for persons with Locked-in Syndrome (LIS) continue to progress. I found this one yesterday on CNN. Scientists have found a new way to use Brain Computer Interface (BCI) technology to help persons with LIS communicate.

It remains experimental, but it's a step in the right direction. A Georgia man, who has been locked in for 10 years, had an electrode implanted in his brain which allows him to turn his thoughts into sounds. Sounds high tech and it really is.

Other BCI technology has been used to allow people with LIS to type their thoughts.

I know they are in the beginning stages, but it's important to help people with LIS. No matter how it happens, the person with LIS is typically completely paralyzed and mute — think Frenchman Jean-Dominique Bauby, who blinked out the memoir The Diving Bell and the Butterfly.

Recently, it was announced that a Belgian man was misdiagnosed as being in a vegetative state when he was in fact LIS. The jubilation was followed by tons of questions. Why not just let this man be happily "unlocked?" Why the questions?

The concern hinged on how he communicated. Bauby, the guy in Georgia and even my late husband Jimmy communicated by blinking their eyes. There are different auditory scanning systems, but it's really easy to understand the LIS person is speaking.

The Belgian man, Rom Houben, creates messages with the help of an assistant who guides his hand along a board. Folks all over the world expressed skepticism over the communication method and outlined scientific studies about how Houben's communication method was in question.

By blinking, it was very clear that Jimmy was in control of his message. He directed his message. The only assistance he had was verbalizing his thought after he spelled it out one letter at a time.

Personally, I hope the skepticism in the Belgian case is unfounded. I want to have the same "happy fuzzy" feeling I had when I first learned of his story. The guy can communicate now. Be happy for him. He has suffered 23 years of a wrong diagnosis.

I'm keeping tabs on both stories, but I'm more interested in the new BCI technology. It's wonderful how science continues to progress and create new ways to improve our lives.

Thursday, December 10, 2009

New study shares impact of caregiving

A new caregiving report tells us what we already knew: Caregiving is a juggling act. The "2009 Caregiving in the U.S.A." study commissioned by the national Alliance for Caregiving was released on Dec. 8. The report was in collaborations with the AARP and funded by MetLife Foundation.

The report found that the average caregiver is a 49-year-old woman. The juggling act occurs every day as these woman face arriving to work late or having to take time off to be a caregiver. "For a fifth of caregivers, the demands were so intense they had to take a leave of absence from work," according to Cynthia Ramnarace's report on the study.

Ramnarace's report on the study highlights some of the statistics and realities of today's caregiver. Barbara McVicker, who is author of Stuck in the Middle and is @barbaramcvicker on Twitter, is also quoted in the report.

With the increasing age of Americans, caregiving issues will only become more of a hot button topic with employees, employers and families. Some people choose to leave the workforce altogether — creating a void in some fields. Others just keep on juggling their responsibilities with the help of family, paid caregivers and health care facilities.

Caregiving is both demanding and rewarding. Whether you are one now or may be on in the future, this new study offers a good starting point for a family conversation. What will you do when a loved one needs a caregiver?