UPDATED 11/14/2018
I was looking at the context of my story being on this radio program...
I and an essay I sent in are discussed. They talk about me 8 minutes in. Then it goes on into a professor giving information on reliable news and sources. The Pro-Truth Pledge is talked about and encouraged.
It sounds like my coma was fake news.
[12/7/2017 The essay, and I link to the show with Jon Sarkin, Re: Imaginel A World Without Rhetorical Questions.]
________________________________
Saying
my coma is "fake news" does not negate the letter stating "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." Right above that it is made
clear that is a coma, "persistent vegetative state, sometimes referred
to as coma."
That
letter has been copied and forwarded many times. I will put it for
others below. "Kicking yourself" is what that agency is doing right now.
Obviously, I am not in a coma.
I want to note, I was only saying vegetative until I got this letter. I did not know I was in a coma. There are other good things in that letter, but it got off on the wrong foot. "Coma" may not have needed to be in there at all. Most people would see that and toss the letter in the trash.
If
my coma is fake news, is that letter fake? I want a neurologist and
annual appointments back-dated to 2006. I also want rehab. What about
the tube left in my stomach? I need swallow therapy because the GI Specialist
wanted to take the G-tube out two years ago.
Fake, my foot! There's nothing fake about this.
_______________________________________
05/09/14 at 9:46 AM
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
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