- A Statement -

 

My name is Steven Keller. I am 47 years old and was diagnosed with idiopathic Parkinson's at age 41.

Never in my wildest dreams did I ever think that I would have Parkinson's, especially at such a young age. I now find myself coping with and studying it as a part of my daily life. I've gotten used to it and I also find it fascinating. I've learned to make the best of it and live with it rather than cope with it, there's a difference.

If you also are a Parkinson's patient, then you well know what this means and the changes it brings about in your life. After the disbelief has transformed into realization and the question of 'Why Me?' has settled from your thoughts, you begin to evaluate your future and wonder every day what it will bring.

For many of us this brings the quest for answers. It is a little different from the quest that we all began as our symptoms started to appear. The countless hours on the internet, the search for clues in determining what was wrong with you, the endless Doctors appointments and tests that so quickly turned into mundane routine. The suggestions that it may be stress or psychologically induced. The feelings of helplessness, hopelessness and the never passing feeling that things may not ever get better.

Fortunately, even though there is still limited understanding and diagnosis is often difficult, there are some treatments that can bring life somewhat back to normal, restore some balance, and bring hope for all of us. The reality remains that it is still a greatly misunderstood and merciless condition. Every day remains filled with challenge, hope and often disappointment.

Throughout this struggle I have finally come to see what, in my mind, are solid conclusions about what I have gone through and what I am going through.

  •           There is currently no cure, only symptomatic treatment.  It is hard to accept, but it is the reality of the situation.
  •          There is no conclusive data or evidence to determine whether the cause is genetic, environmental, or simply random occurrence.
  •          In general people do not understand what you are going through, from your friends to your coworkers and yes, even your Doctor.
  • ·         There is no significant collaboration between Doctors and the Pharmaceutical companies.
  • ·         The lack of readily available information and comparisons of mass numbers of patients hinders the process of rapidly finding a cure.
  • ·         There is no uniform public database that asks all of the questions and compares the symptoms, demographics and lifestyles of Parkinson's patients as told by the patients themselves.

There were Congressional initiatives for a "Neurological Surveillance System" to be maintained by the CDC (H.R.2595/S.425).  While this is well intended, it leaves out the most critical factor in the equation - The Patient.  All of the Bills died in Congress and were referred to the House Committee on Energy and Commerce and to the Subcommittee on Health.

I contacted our representative for the House of Representatives for my district about this. I received a reply almost two weeks later. I specifically noted in my e-mail that H.R. 2595 had failed twice and that it was a very important bill etc. etc. and specifically stated our cause and what we are doing. I even detailed out how we had set the same type of system up at a cost that was .0001% of the total cost they were requesting for funding. This is essentially the exact same system that the bill calls for with the exception that it is from the patient side, not the physician side.

What I got was a regurgitated response telling me what the bill was etc. (see response below) A little disappointing to say the least. I would like to compliment the staff member that took the time took look it up, find out what it was and draft a politically correct reply. I did redact the Representatives name, but I think you will get the gist of how "important" this is to Congress. It just gets kicked back to committee and dies hopelessly. I would guarantee you that if we could inflict Parkinson's on Congress for just one day, they would look at this in a whole new light. There's 'sincerity' and then there's 'being sincere', you decide. (I wish I had saved the text of that 'form fill' email I sent) I'm not saying not to push or not to contact Congress, just don't set your hopes too high. They need to hear it from hundreds of thousands of people, not just a hundred. It's the same situation with our survey and database. This is up to all of us to get together and make this happen and we can make it happen. No one cares more than we do.

House of Representatives response.

February 26, 2013

 Dear Mr. Keller,

 Thank you for contacting me about the National Neurological Diseases Surveillance System Act. It is an honor to represent the people of XXXXXX XXXXXX, and I appreciate you taking the time to share your thoughts with me. 

 Each year millions of Americans are affected by neurological diseases such as Parkinson's, Multiple Sclerosis, and other diseases.  Advances have been made in research and treatment for these diseases, and it is important to provide health care professionals and folks with the tools they need to continue their research.  The bill you mentioned would direct the Secretary of Health and Human Services (HHS) to establish a National Diseases Surveillance System to collect and store information related to neurological disorders.  Creating this system could help health care providers learn how to prevent neurological diseases from developing and offer better treatment folks inflicted with a disease. 

 As a member of the Congressional Caucus on Parkinson's disease, I am looking for ways to improve the lives of those affected by neurological diseases.  I appreciate you bringing this bill to my attention and I will keep your thoughts in mind as I learn more about it. 

 Thank you again for contacting me on this important issue. I invite you to visit my website at www.XXXXXXXXX.house.gov for additional information or to sign up to be kept up to date on this important issue. Please do not hesitate to contact me if I can ever be of assistance.

 

Sincerely,

 
XXXX XXXXX
Member of Congress
 

 

It is imperative that Doctors and Patients alike have a readily available means to compare every possible aspect of as many Parkinson's patients as possible.

If we all work together, there can be a cure.