ELLIE'S BLOG on Living Well with Disability

Three events happened this past month while I was chasing down and eliminating spam on my blog . The first was a book I read :"Curing MS " by a renowned Neurologist Howard L.Weiner. The second was the death of Max Starkloff who was a pioneer in Independent living for the Disabled. The third was the shooting attacks in Tucson Arizona. Each one of these could be a blog in itself. I still intend to discuss MS research and Dr. Weiner's book on my MS blog.  And I also do intend to discuss the remarkable life of Max Starkloff and the impact that he had on  people who have disabilities in this country on my Disability blog.

But the event in Tucson and then the stabilizing of Rep. Gifford's condition diverted my attention. I followed her progress intensely on TV, internet and newspapers. And I was thrilled to see her be allowed to move to a more intensive rehabilitation center.

As I returned to think about what my next blog would be it was obvious to me. These two blogs I was going to write both related to the current and the future progress of Representative Gifford.

The first book by Dr. Weiner was about research to find a cure for MS. But in a generic sense it is about the invaluable role for unhindered basic research into diseases. Unless we do basic research into understanding how the body functions and how it's affected by certain conditions there will never be cures. And without this research we will not gain the knowledge to advance our understanding of the condition  And without that the small gains thru many sources that help people to live with their conditions will be lost.

Rehabilitation of our motor system  for moving our body parts etc. has always been a focus of rehabilitation. But today luckily for Representative Gifford research into understanding the structure of the brain in depth has been ongoing for a good many years now. Thanks to modern technology and our research there is an exciting increase in our knowledge of the brain with it's complex system of neurons and the chemical and biological components that help the electrical messages go to where they are supposed to. 

So now we can fully include cognition, speech, visualization and all else that is essential to a well functioning human to the rehab program. Also very importantly researchers have learned just how much plasticity there is in our brain and research is ongoing to know how to maximize intervention to take advantage of that.

The United States is the world's leader in health research. So where and how does this occur is a question I asked myself. My research showed me the following (Click here for my source.):

With public funds 28 % of this research is done by the Federal government through the NIH, and other departments in government.  And there is some contribution (4%) from  State and local governments.

The National Institute of Health (NIH) is the steward of biomedical and behavioral research for the nation.  This Institute started in 1887 within the Marine Hospital Service in a one room laboratory.  Since that time it has grown and developed as needed by the continuous discoveries of important scientific knowledge opening the doors to positive information affecting our health.

Today there are 27 NIH institute's under the Director of the Central Office of the NIH.  These institutes allow for in-depth research on all of the conditions that affect our citizens like the National Cancer Institute.  These Institutes have been developed as the need arose for more in depth understanding of certain diseases and conditions.  The National Institute of Neurological Disorders in Brain and Stroke  was established in 1950 . Thanks to the ongoing research in this Institute both basic and clinical                                                                                                                                         our knowledge of the brain and nervous system has grown and is reaping great benefits for many people like Representative Gifford.  For more information on the role of the NIH click on the following link:http://www.nih.gov/index.html 

Research that uses private funds (for-profit organizations) include  54.1% from Industry which comprises mostly the : Pharmaceutical, Biotechnology and Medical Devices Industries. Investment in research and the conduct of the health research by Industries is driven by the aims of (1) generating profits and (2)  improving health conditions within the framework of creating profits. These Industries have undoubtedly made major contributions to the health of people in America and in the world. However the drugs and devices that they decide to develop are  dependent upon the analysis of profit making for the company.

Also private funds would include 3% from non-profit foundations / charities, medical research organizations, disease focused organizations and universities and colleges. These private funds many times are directed to fill a gap in a health problem needing attention.  We all may have been a  part of these private funds when we participated in various Runs, Walks, and other events for our favorite charities.

The other the area I feel is relevant to Rep. Gifford is the environment in which she will be returning to. This includes both thru her long recovery and when she has reached her full recovery. Thanks to all the people who have fought for those with disabilities to have more equal opportunity over the years her life will be so much better and easier. Thanks to our government for passing legislation like the ADA etc. And we must never forget what people like the late Max Starkloff  did for enriching the lives of those with disabilities.

Max became a quadriplegic in 1959  at age 26 when his Austin Healey convertible slipped off a winding road.  Due to circumstances resulting from his condition he lived in a nursing home till he was 38. But he found a way to get out of the nursing home, he got married and he and his wife started Paraquad which became a national leader in helping other people with severe disabilities live at home,find jobs and lead regular lives.  Max Starkloff died at age 73 from complications from the flu on Dec. 27,2010.

 He lived much longer than anyone had expected when he became a quadriplegic in 1959. And what a life he had.

                                                                                       ellie