Sunday, May 11, 2014

Dear Vegetable



I couldn't be reading this right. The first few sentences.... You read it.

Dear Ms. Ronson:

We are responding to your email to the National Institute of Neurological Disorders and Stroke (NINDS) concerning persistent vegetative state, sometimes referred to as coma. 

We are sorry to learn that you are currently in what could be considered a "semi-vegetative" state that has significantly affected your ability to speak, write, and perform other tasks.  You explained that your condition was expected to decline, but that you have slowly gotten better.  We can certainly understand your desire to share your blog with others and seek advice about your case.  As a biomedical research funding agency, the NINDS cannot provide people with personal, case-specific advice about a medical condition.  However, we can provide general information about neurological disorders and direct you to other possible sources of assistance.  If you are seeking a neurologist, the resources in the "Additional Information" section at the end of this message may be helpful.

The NINDS has online information that provides an overview of coma and summarizes the Institute's research in this field.  You can access this information at the following website:  http://www.ninds.nih.gov/disorders/coma/coma.htm. The following section lists voluntary health agencies that provide services to those affected by coma:  http://www.ninds.nih.gov/disorders/coma/org_coma.htm. Such organizations often prepare newsletters with stories that inform and inspire others who are coping with conditions such as yours.  They may be interested in learning about your experiences. 

In addition, you may wish to visit the MedlinePlus website offered by the National Library of Medicine (NLM).  The site is designed to assist people in identifying resources that will help them with their health concerns or questions.  Resources on coma are provided at http://www.nlm.nih.gov/medlineplus/coma.html.

For citations to research articles, you may wish to search PubMed, which provides free access to an online bibliographic database of published biomedical literature from the NLM.  You can access PubMed at http://www.pubmed.gov. The search strategies "coma AND review" and "persistent vegetative state AND review" are possible starting points to find articles.  Some articles are available free of charge online; if so, the citation will indicate that.  Otherwise, to obtain copies of any articles identified by your search, you may need the assistance of a librarian at the nearest university or medical library.  Alternatively, the NLM offers a service called Loansome Doc that allows PubMed users to order a copy of any article they locate in the database directly from the Internet. 

Finally, you may be interested in learning about research studies at the National Institutes of Health (NIH) or in your area.  The "NIH Clinical Research Trials and You" website at http://www.nih.gov/health/clinicaltrials is a good starting point.  The site offers resources for people interested in volunteering for a study, including questions to help determine the potential risks and benefits of participating in a trial.  The site provides a link to ClinicalTrials.gov (http://www.clinicaltrials.gov/), an NIH database that has information about federally and privately funded clinical research studies on a wide range of diseases and conditions.  You can search the database to learn about research studies in need of participants, as well as their location, purpose, and criteria for patient participation.  Tips for searching ClinicalTrials.gov are provided at http://www.nih.gov/health/clinicaltrials/CTgovSearchTips.htm. The site also includes a link to ResearchMatch, an NIH-funded registry to help connect volunteers with researchers who are in need of study participants:  https://www.researchmatch.org/.

We hope this information is helpful.

Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke



ADDITIONAL INFORMATION

Finding a Specialist

Voluntary health agencies focused on the disease or disorder that concerns you may be able to direct you to specialists in the United States.  A list of approximately 300 national non-profit health organizations concerned with neurological conditions can be found at this NINDS site:  http://www.ninds.nih.gov/find_people/voluntary_orgs/organizations_index.htm.

You may also wish to contact the department of neurology at a teaching hospital--that is, a hospital affiliated with a medical school--to obtain possible referrals to specialists.  You can find a list of teaching hospitals in the United States at the following Association of American Medical Colleges website:  https://members.aamc.org/eweb/DynamicPage.aspx?site=AAMC&webcode=AAMCOrgSearchResult&orgtype=Hospital/Health%20System.

Another option would be to visit the National Library of Medicine's MedlinePlus website, which offers a variety of resources to help people with their health questions.  This MedlinePlus site has information about choosing a physician or health care service:  http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareservice.html. The following site includes links to directories or listings that may help you locate specialists:  http://www.nlm.nih.gov/medlineplus/directories.html. If you click on "Find a Neurologist," you will be prompted with a search box that will allow you to select a particular state.   


4-14-14




To begin with, they state "coma." I've known PVS (Persistent Vegetative State) is also a coma.   They take the stance that my diagnosis is proper. "We are sorry" you are in a coma. Why is a person in a coma able to read? Why are they writing to someone in a coma? The letter should just start, "Dear Vegetable."

That beginning negates the whole letter. It doesn't matter what the rest says. It got off on the wrong foot.




Changing those words a  bit, "Don't talk to me like I'm an idiot. I may not have a  neuroscience degree, but I'm not in a coma."

(By the way, I can tell you what my phone number was when I was 5 years old.) 
____________________________________

My response? It can be viewed in the style of that clip....


Don't be sorry for me. Be sorry for u. A copy of this is being sent to Neuroscience News. It will also be published n u can read w/ the rest of the world.


You take this lightly. It was taken lightly when I was severe. That was a clue right there when I opened my eyes. That never should have happened. At 1st, I was fooled like u, but as time goes on u can see. I used to be severe, unable to move or talk. When I  started making sounds that should have been another clue for u. I have no brain, just brainstem! Where was this sound coming from? 4yrs in various hospitals...still u have no clue. I should be in a nursing home, but I did some things n I'm not. Now u have a vegetable on the loose! I managed to get 1 finger to move so I could type out what I want to say. My speaking still isn't that great, but I do it. It progresses like the rest of me. Gee, I was severe now I'm moderate. I'm working towards mild. What comes next?


Do the math! I was severe. I slowly gained muscle movement. I no longer require a ventilator n now have a big hole in my neck. (Pictures speak a thousand  words n the media will love this 1.) I managed to get out of the hospital, taught myself to type, n have gone public? Like I said don't be sorry for me, be sorry for u. This was your opportunity n u blew it. This has already been sent. U can't un-ring a bell once it's rung.

I don't seek a doctor or advice. They don't know anyway. The best advice I got was from a retired biologist who has passed away. He said don't do anything. So I haven't. I just keep body parts properly positioned n I'll do exercise. Nothing invasive is done. U just need to be aware then. I'm sure there r others who would jump at the opportunity to research what is going on.

1 comment:

  1. It is simply amazing how STUPID some "smart" people can be!

    ReplyDelete