Memorial Day – All Gave Some, Some Gave All

For Memorial Day, I wanted to take a look at my ancestors and see just how many served our country, or the colonies that would become our country. I was surprised, and a bit overwhelmed, to discover just how many veterans I have for ancestors.

“Our fallen heroes are the reason we live in a privileged nation where we get to sleep safely and soundly in our beds every night. This is one of many reasons they deserve this one day to remember their service and sacrifice.”

Seana Arrechaga, widow of SFC Ofren Arrechaga, killed in the line of duty, March 29, 2011, Kunar Province, Afghanistan, just days before the end of his tour of duty.

When I was young, I thought of Memorial Day as the gateway to summer, and Labor Day as the gate on the other end. Of course, Memorial Day in Indiana was associated with the end of the school year, always a happy occasion, picnics and the Indy 500 Race.  It wasn’t until I got older, much older, that I realized the significance of this day.  That’s odd, in a very strange way, given that I have the triangle shaped flag from my own father’s coffin.  I just never knew or understood its significance…that is…until Vietnam.

Dad's flag

I still, to this day, cannot talk about the human losses in and due to Vietnam. Our men came home, if at all, so broken and to an unsupportive, even hostile, country.  Mental and physical illnesses have plagued them in the decades since, and along with them, their parents, wives and families.  Not all died in Vietnam.  Many died years later from the scars inflicted upon them in Vietnam – both physical and mental.

Perhaps Vietnam was no different from any other war – it’s just that Vietnam was the war I witnessed. Boys going to the recruitment center, proud to enlist, returning months or years later as men, broken and ravaged by an invisible disease, nightmares that woke them screaming from what used to be peaceful sleep, and horrors the rest of us can’t begin to imagine.

I knew Greg growing up, before we dated and married. After he returned from Vietnam, he found a job and tried to pretend all was well, but the mental demons would consume him, inch by inch, day by day, month by month, year by year – until he was gone.

I found a photograph in my former husband’s belongings that explained it all. It was a picture of him and two other men in military fatigues in Vietnam, eating lunch sitting in the front bucket of a bulldozer.  Then I looked closer.  The piles waiting to be bulldozed were human corpses, stacked like cordwood. It is any wonder mental illness consumed him and stole his life?

Then I understood why he hated returning to active duty from leave.  It didn’t have so much to do with what he was leaving as what he was returning to.  What few stories he told me were utterly horrific.  Mostly he didn’t talk about his time in service in the Army’s Green Beret unit.  He never discussed it while it relentlessly ate him alive.  There was no escaping.  Yet, he was proud to serve his country.

He is the first veteran to honor.

Greg Cook

Greg happy times

This picture was taken one Christmas in happier times.

David Estes

Dave uniform for blog

The second veteran is my brother, David Estes, a Marine, shot down as a tail gunner, injured and contracted hepatitis C from a blood transfusion in Saigon.  Yes, it took him 27 years, but he too succumbed to his injuries.

William Sterling Estes

Dad in uniform for blog

My own father, William Sterling Estes, served three tours in the Army as well, in both WWI and WWII, and he too was injured.  At one point, either during or after his service, he worked at Oak Ridge, TN, on “the bomb,” and he was just never right again.  Alcohol consumed his life.  He died in an automobile accident that we believe was suicide after what would be his final relapse.

John Y. Estes

John Y Estes

My father’s great-grandfather, John Y. Estes, was a Confederate prisoner of war during the Civil War, captured after he was injured and eventually released north of the Ohio River to make his way back to Claiborne County, TN, as best he could.

John R. Estes

John R. Estes restored

John Y. Estes’ father, John R. Estes, served in the War of 1812 out of Halifax County, VA.

George Estes

John R. Estes’ father, George Estes, served three tours of duty in the Revolutionary War, two in Virginia and one in what would become Eastern Tennessee.

Moses Estes

George Estes’ grand-father, Moses Estes, served in the French and Indian War in Amelia County, Virginia.

Henry Bolton

Henry Bolton, my great-great-great-grandfather served in the Revolutionary War in Maryland and may have looked after George Washington’s horse.

William Herrell

William Herrell, my great-great-grandfather served in the War of 1812, walking from Tennessee to Fort Williams in Alabama, and back.  He called this the “War with the Creek Indians.”

Samuel Claxton or Clarkson

Clarkson, Samuel Civil War

Samuel Claxton, my great-great-grandfather served as a Union soldier in the Civil War, contracted tuberculosis, never recovered and died after the war.

William McNiel

William McNiel, my 4th great-grandfather served in the Revolutionary War from Spotsylvania County, Virginia and fought at the Battle of Brandywine.

Reverend George McNiel

William’s father, the Reverend George McNiel served in the Revolutionary War at the Battle of King’s Mountain, even though he was in his 60s at the time.

John Francis Vannoy

John Francis Vannoy, my 5th great-grandfather, may have served in the French and Indian War.

William Crumley Sr.

William Crumley Sr., my 5th great-grandfather, provided supplies for the Revolutionary Army, gathering supplies in Frederick County, Virginia, and submitted a Publik Service claim.

Edward Mercer

Edward Mercer, my 6th great-grandfather, father-in-law of William Crumley Sr., fought with George Washington and was defeated at the Battle of Fort Necessity in 1754, during the French and Indian War.

Marcus Younger

My 5th great-grandfather, Marcus Younger, provided brandy and other supplies in King and Queen County, Virginia during the Revolutionary War.

Lazarus Dodson

My 4th great-grandfather Lazarus Dodson, served in the Revolutionary War, in the same unit with George Estes in what was then North Carolina, but later became Tennessee.  Their grandchildren would marry in Tennessee.  Their descendants are shown below at the celebration honoring Lazarus by setting his gravestone.

laz descendants

Raleigh Dodson

Lazarus’s father Raleigh Dodson, may also have served in the Revolutionary War. His name is on the same roster.

Jacob Dobkins

My 5th great-grandfather Jacob Dobkins served in the Revolutionary War as a scout.  He is believed to have participated in the Battle of King’s Mountain as well.

John Harrold

William Herrell’s father, John Harrold, my 4th great-grandfather, served two terms in the Revolutionary War out of Botetourt County, Virginia serving in Virginia and North Carolina.

Michael McDowell

My 4th great-grandfather Michael McDowell served three tours of duty in the Revolutionary War out of Bedford County, VA.

James Lee Clarkson/Claxton

James Lee Clarkson/Claxton, my 4th great-grandfather, served in the War of 1812 and died in service in Alabama at Fort Decatur.  He was buried outside the fort, but his grave has been lost to time.

Nicholas Speak

Nicholas Speak, my 4th great-grandfather, fought in the War of 1812.

Joseph Workman

Joseph Workman, my 5th great-grandfather, served in the French and Indian War.

Col. Robert Craven

Col. Robert Craven, my 6th great-grandfather, served in the French and Indian War.

Abraham Workman

My 6th great-grandfather, Abraham Workman, served in the French and Indian War.

Charles Beckwith Speak

Charles Beckwith Speak, my 4th great-grandfather, served in the Revolutionary War in the militia in Maryland.

Gideon Faires

Gideon Faires, my 5th great-grandfather served in the Revolutionary War.

Samuel Muncy

Samuel Muncy served in 1774 on the frontier in Moore’s Fort in what is now Lee or Scott County, VA.

Mother’s Side

On my mother’s side of the family, there are fewer men who served to defend the US or the colonies, in part because many of her ancestors immigrated recently, in the 1800s, from both the Netherlands and Germany.

Some of my mother’s ancestors were Brethren, a pietist religion, opposed to warfare or violence in any format, to the point they would not defend their own family against attack.

One of mother’s lines was Acadian, so spent their lives in Canada, not the US.

Joseph Hill

Joseph Hill, my great-great-great-grandfather may have served in the War of 1812 from Vermont.  There were two Joseph Hills and we have been unable to verify his service.

John Hill

Joseph Hill’s father, John Hill served in the Revolutionary War from New Hampshire.

John Drew

John Drew, my 6th great-grandfather, was a Sergeant in the military organization of New Hampshire in the 1600s.

Capt. Samuel Mitchell

Capt. Samuel Mitchell, my 5th great-grandfather, served in Maine in the 1600s.

Stephen Hopkins

Stephen Hopkins, my 11th great-grandfather, served at Jamestown, returned to England, then sailed on the Mayflower and served in the Plymouth colony.

Militia Service

Many men’s names are omitted from this list, not intentionally, but often due to lack of records. The Revolutionary War was the first war that offered land as pay, or land as a benefit of service, as well as both veterans’ and widows’ pensions.  Therefore, service records become critically important.

In the previous wars, specifically the French and Indian War, the only records we have are county records if the soldiers happened to be recorded.

During this timeframe, and earlier, all men were expected to serve in the local militia which functioned to protect the community as well as serve on the frontier to defend the region, if called upon. Therefore, we can assume that all men prior to the Revolutionary War did in fact serve in some capacity in their local militia and community.  Did they see warfare defending the frontier?  Perhaps, but we’ll never have that documentation because in most cases, there are no lists of militia members, nor records of what types of activities the militia was engaged in, aside from regular drills and practice.

In many cases, we don’t know when, why or how men died, so we don’t know if they died in the service of their country, as a result of that service, or of some unrelated cause.

Thank You

For all of my ancestors whose service goes unmentioned, my apologies, but more importantly, my sincere thank you. Without those hearty men who all served as a normal part of their citizenship, we would not be here today as a nation.  And thank you to the wives, left at home with the children who persevered and carried on, doing both the man’s and woman’s work while the husband was gone.

I am honored to carry the history of such a long list of patriots, stretching from Jamestown and the Mayflower to my brother and father.

My son, while not serving in the military, serves as a public safety officer, providing both fire and police protection for his community, risking his life daily to do so – and has for more than 20 years.

radio in squad car

Thank you, one and all, for your service.

Have a great Memorial Day weekend, but don’t forget who made it possible and those in active service today who keep it possible. Many are unable to celebrate with their families this weekend either because they made the ultimate sacrifice for their country, they are currently deployed or because they are working to protect the rest of us.

Instructions for 23andMe Users Still on “Old Experience”

23andMe announced a transition to a “new experience” in October 2015 after their settlement with the FDA.   The transition included differing services and a web redesign, and began in early November, 2015 with completion promised by the end of the year.  Unfortunately, they never indicated which year.

Since that time, some accounts have been transitioned, but older accounts, meaning accounts that had tested prior to the issue with the FDA, remain on the “old experience,” with diminished functionality. In case you’re counting, that’s about 7 months.

Questions remained about what information would be provided to customers who tested prior to the FDA order that stopped 23andMe from providing customers with the health information, and whether or not those customers would be required to upgrade.

Earlier this week, 23andMe announced new tools for their “new experience accounts” which made those of us stuck in the “old experience” feel like even less valued customers, to say the least, and trust me, I’m being kind here.  One would think that 23andMe would have focused all of their efforts on transitioning all of their customers before providing new tools for some.

Today, I received this e-mail telling me that my account is scheduled to be transitioned by….wait for it….the end of….August. Yes, August, I think that’s August this year, although it’s important to note that they don’t specify a year.

This is Memorial Day weekend, so maybe by Labor Day. Seriously?  Wow…that’s service!

23andMe Transition

23andMe Transition2

23andMe Transition3

This e-mail does include valuable information regarding the results of the more robust health information that was provided to customers prior to the FDA shutdown that occurred in November 2013.  Our results will be available as a pdf file in an archive.  It’s important for legacy 23andMe users to note that selections made now will reflect what is actually archived and cannot be changed later.

You can read more detailed information here.

However, you must make your selections by June 2, 2016 in order for 23andMe to be able to transition your account by the end of August (no year indicated), so don’t delay. June 2 is only 6 days away.  If this makes you feel like “hurry up and wait,” you’re not alone.

Assuming 23andMe actually is able to comply with this promised transition date, that will be roughly 10 months from the beginning of the transition process, which was supposed to be complete 8 months ago. To put things in perspective, I could have gotten pregnant, gestated a full-term child and given birth in this amount of time. Just saying.

Family Finder Update Comparative Results

The new Family Finder update at Family Tree DNA is live this morning. I wrote about what to expect here and here.

Family Tree DNA’s dual matching algorithm leaves most of the current matches in place, with the newly added portion providing matches for people who didn’t match the old total threshold. The two matching thresholds currently in effect are:

  • 20cM total with a minimum longest single segment of 7.69cM
  • No total cM requirement but a minimum longest single segment of 9cM

There are lots of happy people reporting new matches on social media today!

You can check your new matches by signing on to your account and clicking on Match Date to sort by match date. A second click sorts in the opposite direction.

Ff match date

However, I noticed that not all of my new matches carry the match date of 5-23-2016, which is the latest match date.

Comparing Your Match Files

The best way to find all of your new matches is to download your matches list and compare to a previous match list. At the bottom of your match page, there is a link to download matches.

FF match download

I downloaded my match list on 5-23-2016 and again this morning, 5-26-2016, so that I could compare old and new.

My old number of total matches is 1392, and my new is 1447, so my gain would be 55. However, that’s not the entire story.

I compared the two files, and I lost a total of 20 matches. Three of those were in the 4th to remote category and the rest were in the 5th to remote category.  These must have been casualties of the tweeking of the algorithm.

In reality, I didn’t gain 55, I gained 75 new matches.

That’s about a 5% increase in matches.

The technique I use to compare the files from the two days is to color code one and then combine them into one spreadsheet file. I sorted by full match name, and that made it easy to look for any two white rows or any two green rows, which indicate a loss or a gain.  People appearing in both files will show as a whole and green identical row one after the other forming a green, white, green, white pattern on the spreadsheet, so it’s easy to spot an aberration.

Green is the 5-26-2016 file, so two white rows together means that one of those two white rows from the 5-23-2016 file doesn’t have a corresponding green row, so it was lost in the update. You can see that happened with Jerry, colored red, in my spreadsheet below.

FF Update Label

Two green rows together means that one of those green rows didn’t have a 5-23-2016 white row, so it was a gain. You can see that with Helen, colored purple, above.  I colored by loss rows red in the Full Name column and my gain rows purple.

Then, I sorted the spreadsheet again by cell color in the Full Name column. All the red and all of the purple appear together, so it was easy to see gains and losses.

Ff sort

Of course, in my example, there is only one gain and one loss, but the concept still holds when there are more.

The one unusual aspect that I found is that the match dates for all of my new matches are not 5-23-2016. They are primarily 5-4-2016 with a few 5-23-2016 and one 5-21-2016.  It looks like this rematching process was completed in steps on three different dates.

This means that you can’t rely entirely on the match date on your match page at Family Tree DNA by looking for today’s date. Your best bet is to compare a current matches file with a previous matches file.  If you don’t have a previous matches file, it looks like anything in the month of May is likely a new match.

Evaluating Matches

When I evaluated my new matches, I was surprised to find that only 7 were the result of the new algorithm change. I’m not sure if the bottom two would have appeared before, as there were 20.xx cM and I’m not sure if the threshold was exactly 20.0 or 20.99.  In any case, they are new now, and the top 5 are definitely a result of the new algorithm.

FF new matches

The balance of my new matches seem to be a result of truly new matches that have recently tested (I received 74 last month alone) or a result of the algorithm tweeking, because they clearly qualified as matches previously, under the old algorithm.

These 67 matches longest block ranges from 7.70 to 12.04 and the total shared cMs range from 21 to 54.

Now, of course, it’s time to see who matches whom, who triangulates, who phases against my mother and which of these matches have trees sharing a common ancestor.

I have a lot of new cousins to meet and genealogy work to do, and I hope you do too.  Let me know how the Family Finder update affected you!

Family Finder Update Update

Family-Tree-DNA logo

Recently, I shared with you an announcement by Family Tree DNA about the expected update to their Family Finder autosomal DNA product.

Family Tree DNA sent an e-mail to their project administrators yesterday evening providing additional information about their update that will be following shortly.

Their verbiage follows, but this additional information removed some question about how matches will occur. Some people, me among them, were concerned that the new matching algorithm would remove all matches below 9cM.  This would happen if the new algorithm replaced the old one.  I’m very pleased to report that’s NOT the case.  This new algorithm has been implemented in addition to the old one that required 20cM and 7.69 cM or greater longest single segment.

If you don’t match utilizing the old algorithm, you get second chance now with the new one that has no total cM requirement and a minimum segment length of 9cM. If you match either way, that person will be on your match list.  Blaine Bettinger created a handy-dandy flow chart showing this process.

The good news is that the old threshold will preserve your old matches and the new threshold will allow new matches that do have a 9cM segment or longer but don’t happen to have 20cM total. I think this is win/win – and a very welcome change

Family Tree DNA has refined their matching algorithm somewhat, but the net effect of this should be that people will have more matches, but no new matches under 9cM and few losses, unless it’s from the algorithm tweaking.

As you look at your new matches, also keep in mind that some of your new matches may simply be because people tested and their results just happened to come back during this time – so if you do see a match under 9cM that’s new – this could be why. It may not be a result of the change, just a function of timing.

Those of you with Jewish heritage that were worried about being overwhelmed with matches, you can worry a little less. Family Tree DNA has maintained their proprietary routines that attempt to minimize the noise in Jewish matches.

Here’s the meat of what Family Tree DNA sent to the group administrators:

After months of research and testing, we’re implementing those changes as soon as the quality assurance process is complete, which should be within the next few days.

Until now the amount of shared DNA required for two people to show as a match was a minimum of 20 total centiMorgans of shared DNA with a minimum longest block of at least 7.69 cM for 99% of testers,  5.5 cM for the other one percent. With the adjustment, if two people share a segment of 9 cM or more, they will show as a match regardless of the number of total shared cM. However, if there’s not a block that’s 9 cM or greater, the minimum of 20 shared cM with a longest block of 7.69 cM applies.

We also slightly altered other proprietary portions of the matching algorithm that will, to a small degree, affect block sizes and total shared centiMorgans. These changes should have only marginal effects, if any, on relationships, generally in the distant to remote ranges.

There’s a separate proprietary formula that is also applied to those with Ashkenazi heritage, but you can, of course, expect to have more new matches than those not of Ashkenazi heritage.

The entire existing database has been rerun using the new matching criteria, and all new matches have been calculated with the new thresholds.

Please keep in mind this change will not affect close matches, only distant and speculative ones. Some matches will fall off, others will be added. Most people will likely have a net gain of matches.

Your myOrigins results may change slightly with the rerun, but we have not updated or changed myOrigins yet. We’ll let you know when that happens.

And that’s not the only good news we have!

Some of you may have dealt with mtDNA results that had some issues with genetic distance. The fix for the root cause of that problem was released awhile back, but we had to wait until all the hardware installations were complete and integrated before re-running those kits affected prior to that fix. We’re in the process of deploying that update now!

Over the next few days, those affected will likely see differences in genetic distance of some matches as the corrections are implemented. Those who have tested after the fix whose mutations were correct may see an increase in matches to existing testers. That’s to be expected.

Thank you for your patience through the process.

Beware The Sale of Your DNA – Just Because You Can Upload Doesn’t Mean You Should

You know something is coming of age when you begin to see knockoffs, opportunists – or ads on late night TV. As soon as someone figures out they can make money from something, rest assured, they will.

In the past few weeks, we’re beginning to see additional “opportunities” for places to upload your DNA files. Each of them has something to “give” you in return.  You can view this as genuine, or you can view this as bait – or maybe some of each.

So far, each of them also seems to have an agenda that is NOT serving us or our DNA – but serving only or primarily them. I’m not saying this is good or bad – that depends on your perspective – but I am saying that we need to be quite aware of a variety of factors before we participate or upload our autosomal DNA results.

Some sites are more straightforward than others.

I have already covered the fact that both 23andMe and Ancestry sell your DNA to whomever for whatever they see fit.

Truthfully, I always knew that 23andMe was focused on health, but I mistakenly presumed it was on the study of diseases like Parkinson’s. My mother was diagnosed with Parkinson’s, so I had a personal stake in that game.  When their very first patent was for “designer babies,” I felt shell-shocked, stupid, naïve, duped and taken advantage of. I had willingly opted-in and contributed my information with the idea that I was contributing to Parkinson’s research, while in reality, my DNA may have been used in the designer baby patent research.  I have no way of knowing and I had no idea that’s the type of research they were doing.

Parkinson’s yes, designer babies no.  It’s a personal decision, but once your DNA is being utilized or sold, it can be used for anything and you have no control whatsoever.  While I was perfectly willing to participate in surveys and have my DNA utilized for a cure for diseases, in particular Parkinson’s, I was not and am not willing for my DNA to be utilized for things like designer babies so the wealthy can select blue eyed, blonde haired children carrying the genes most likely to allow them to become athletes or cheerleaders.

And once the DNA cat is out of the bag, so to speak, there is no putting it back in. In some cases, you can opt out of identified data, but you can’t opt out of what has already been used, and in many cases, you can’t opt out of having your anonymized data sold.

So, let me give you an example of just how much protection anonymizing your data will give you.

Anonymized Data

Let’s say that someone in one of those unknown firms wants to know who I am. All they have to do is drop my results into GedMatch and my name is right there, along with my e-mail.

Have a fake name at Gedmatch? Well, think for a minute of the adoption search groups and how they identify people, sometimes very quickly and easily by their matches.  Everyday.

Not to mention, my children (and my parents, were they living) are very clearly identifiable utilizing my DNA. So while my DNA is mine, and legally belongs to me, it’s not entirely ONLY mine.

The promise of anonymized data by stripping out your identifying information has become somewhat of a hollow promise today. In a recent example, a cholesterol study volunteer recognized “herself” in a published paper, but was not notified of the results. In an earlier paper, several Y DNA volunteers were identified as well. Ironically, Dr. Erlich, now having formed DNA.Land and soliciting DNA uploads was involved with this unmasking.

Knowing what I know today, I would NEVER have tested at 23andMe and I would have to think very long and hard about Ancestry. The hook that Ancestry has, of course, is all of those DNA plus matching trees.  Is having my anonymized DNA sold worth that?  I don’t really know.  For me, it’s too late for an Ancestry decision, because I’ve already tested there and you cannot opt out of having your anonymized data sold.

I already had an Ancestry subscription, but some testers don’t realize they have to have at least a minimum level subscription to receive all of the benefits of testing at Ancestry. That could certainly be a rude awakening – and unexpected when they purchased the test.  The $49 DNA base subscription is not available on Ancestry’s website either – you have to know about it and call support to purchase that level.  I’m sure most people simply purchase the normal subscription or do without.

One thing is for sure, our DNA is worth a lot of money to both research and Big Pharm, and apparently worth a lot of effort as well, given how many people are attempting to capture our DNA for sale.

In the past few weeks, there have been several new sites that have come online relative to autosomal DNA uploading and testing.

But before we talk about those, I’d like to take a moment for education.

The Sanger Survey

Sanger survey

I’d like to suggest that you take a few minutes to view the videos associated with the Sanger Institute DNA survey here. I think the videos do a good job of explaining at least some of the issues facing people about the usage of their DNA.  Of course, you have to take their survey to see the videos at each step – but it’s good food for thought and they do allow you to make comments.

So, please, take a few minutes for this survey before proceeding.

Genes and US

One of the first “sidebar” companies to appear in September 2014 was at the site   http://www.genesand.us/ which is now nonfunctional.

I took screen shots at that time, since I was going to write an article about what seemed quite interesting.

Genesandus

It was a free service that offered to “find the best genes that you can give to your child.” You had to test at 23andMe, then upload both you and your partner’s raw DNA files and they would provide you with results.

I did just that, and the screen shot below shows the partial results. There were several pages.

Genesandus1

At the end of this section was a question asking if I wanted to “speak to a doctor about any of these benefits.” I didn’t, but I did want to know if gene selection was actual possible and being implemented.  I found the site’s contact information.  I sent this e-mail, which was never answered.

genesandus2

So let me ask you…where is my and my husband’s DNA today? I uploaded it.  Who has it?  Was this just a ploy to obtain our DNA files?  And for what purpose?  Who were these people anyway?  They are gone without a trace today.

DNA.Land

More recently, in the fall of 2015, DNA.Land came upon the scene.

As of today, 22,000+ people have uploaded their autosomal DNA files.

dna.land

What does DNA.Land offer the genealogist?

A different organization’s view of your ethnicity as well as relative matching to others who upload.

The quality and reliability of these enticements offered by companies in exchange for our DNA files may vary widely. For example, when DNA.Land launched, their matching routine didn’t find immediate family members.  No product should ever be launched in an alpha state, which calls into question the quality of the rest of their products and research.  That matching problem has reportedly been fixed.

The second enticement they offer is an ethnicity tool.

I can’t show you my example, because I have not uploaded my DNA to DNA.Land.   However, a genetic genealogy colleague conducted an interesting experiment.

TL Dixon uploaded four DNA files in late April 2016. He tested twice at 23andMe, both tests being the v3 version, and twice at Ancestry, in 2012 and 2014, and uploaded all 4 files to DNA.Land to see what the results would be, comparatively.

TL 23andMe test 1

23andMe v3 test 1

TL 23andme test 2

23andMe v3 test 2

TL Ancestry test 1 2014

Ancestry test from 2014

TL Ancestry test 2 2012

Ancestry test from 2012

We all know that ethnicity testing as a whole is not terribly reliable, but is the most reliable on the continent level, meaning Africa vs Europe vs Asia vs Native American. Given that these raw data files are from the same testing companies, on the same chip platform, for the same person, the Ancestry 2012 and 2014 ethnicity results from DNA.Land are quite different from each other relative to African vs Eurasian DNA, and also from the 23andMe results – even at the continent level.  Said another way, both 23andme results and the Ancestry 2014 results are very similar, with the Ancestry 2012 test, shown last, being the outlier.

Thanks to TL Dixon for both his multiple testing and sharing his results. According to TL’s known family history, the two 23andMe and the Ancestry 2014 kits are closest to accurate.  Just as an aside, TL, surprised by the differing results, utilized David Pike’s utilities to compare the two Ancestry files to see if one had a problem, and they were both very similar, so the difference does not appear to be in the Ancestry kits themselves – so the difference has to be at DNA.Land.

So, what I’m saying is that DNA.Land’s enticement of a different company’s view of ethnicity, even after several months, and even at the continent level, still needs work. This along with the original matching issue calls into question the quality of some of the enticements that are being used to attract DNA donors.  We should consider this not only at this site, but at others that provide enticement or “free” services or goodies as well.  Uploaders beware!

While the non-profit status of DNA.Land along with their verbiage leads people to believe that their work is entirely charitable, it is not, as reflected in this sentence from their consent information.

I understand that the research in this study may lead to new products, research tools, or inventions that have financial value. By accepting the terms of this consent, I understand that I will not be able to share in the profits from future commercialization of products developed from this study.

At least they are transparent about this, assuming you actually read all of the information provided on the site – which you should do with every site.

My Heritage Adds DNA Matching

This past week, My Heritage, a company headquartered in Israel, announced that it has added autosomal DNA matching. Some people think this is great, and others not so much.

MyHeritage

My Heritage, like Ancestry, is a subscription site. I happen to already be a member, so I was initially pretty excited about this, especially when I saw this in their blog.

Your DNA data will be kept private and secure on MyHeritage.

Our service will then match you to other people who share DNA with you: your relatives through a common ancestor. You will be able to review your matches’ family trees (excluding living people), and filter your matches by common surnames or geographies to focus on more relevant matches.

And also:

Who has access to the DNA data?

Only you do. Nobody else can see it, and nobody can even know that it was uploaded. Only the uploader can see the data, and you can delete it at any time. Users who are matched with your DNA will not have access to your DNA or your email address, but will be able to get in touch with you via MyHeritage.

I was thinking this might be a great opportunity, perhaps similar to the Ancestry trees, although they don’t say anything about tree matching.

However, their Terms of Service are not available to view unless you pretend to start an upload of your DNA (thanks for this tip Ann Turner) and then the “Terms of Service” and “Consent Agreement” links become available to view. They should be available for everyone BEFORE you start your upload.

On the MyHeritage main site, you’ll see DNA matching at the top. I’m a member, so, if you’re not a member, your “main site” may look different.

MyHeritage1

Click on “learn more” on the DNA Matching tab.

MyHeritage2

Step two shows you two boxes saying you have read the DNA Terms of Use and Consent Agreement. Don’t just click through these – read them.  Not just at this vendor, at all vendors.

In the required DNA Terms of Use we find this in the 5th paragraph:

By submitting DNA Results to the Website, you grant MyHeritage a perpetual, royalty-free, world-wide, transferable license to use your DNA Results, and any DNA Results you submit for any person from whom you obtained legal authorization as described in this Agreement, and to use, host, sublicense and distribute the resulting analysis to the extent and in the form or context we deem appropriate on or through any media or medium and with any technology or devices now known or hereafter developed or discovered.

And this in item 7:

c. We may transfer, lease, rent, sell, share and/or or otherwise distribute de-identified information to third parties for any purpose, including without limitation, internal business purposes. Whenever we transfer, lease, rent, sell, share and/or or otherwise distribute your information to third parties, this information will be aggregated and personal identifiers (such as names, birth dates, etc.) will be removed.

In the optional Informed Consent agreement, we find this:

The Project collects, preserves and analyzes genealogical lineage, historical records, surveys, genetic information, and other records (collectively, “Research Information“) provided by users in order to conduct research studies to better understand, among other things, human evolution and migration, population genetics, regional health issues, ethnographic diversity and boundaries, genealogy and the history of the human species. Researchers hope that the Project will be an invaluable tool for a wide range of scholars and researchers interested in genealogy, anthropology, evolution, languages, cultures, medicine, and other topics and that the Project may benefit future generations. Discoveries made as a result of the Project may be used in the study of genealogy, anthropology, population genetics, population health issues, cultures, trends (for example, to identify health risks or spread of certain diseases), and other related topics. If we or a third party wants to conduct a study (1) on topics unrelated to the Project, or (2) using Research Information beyond what is described in this Informed Consent, we will re-contact you to seek your specific approval. In addition, we may contact you to ask you to complete a questionnaire or to ask you if you are willing to be interviewed about the Project or other matters.

  1. What are the costs and will I receive compensation? MyHeritage will not charge participants any fees in order to be part of the Project. There will be no financial compensation paid to Project participants. The data you share with us for the Project may benefit researchers and others in the future. If any commercial product is developed as a result of the Project or its outcomes, there will be no financial benefit to you.

You can’t see the terms of use or consent agreement unless you are in the process of uploading your DNA and in addition, it appears that your DNA data is automatically available in anonymized fashion to third parties. The terms of service and informed consent data above does not seem to correlate with the marketing information which states that “nobody else” can see your data.

The other thing that’s NOT obvious, is that you don’t HAVE to click the box on the Consent Agreement, but you do HAVE to click the box on the DNA Terms of Use.

If you are not alright with the entirety of the DNA Terms of Use, which is required, do not upload your DNA file to My Heritage.  If you are not alright with the Consent Agreement, don’t click the box.  Judy Russel wrote an detailed article about the terms here.

Uploading your DNA to MyHeritage is free today, but may be a pay service later. It is unclear whether a subscription is required today, or will be in the future.  However, at one time one could upload a family tree of up to 250 people to MyHeritage for free through 23andMe.  Larger files were accepted, but were only free for a certain time period and now the person whose tree was larger than 250 people and who did not subscribe is locked out of their account.  They can’t delete their larger-than-250 person tree unless they purchase a subscription.  It’s unclear what the future holds for DNA uploads, trees and subscriptions as well.

I have not uploaded my DNA to MyHeritage either, based on 7c. It would appear that even if you don’t give consent for additional “research information” to be collected and provided, they can still sell your anonymized DNA.

WeGene

WeGene

Very recently, a new company, WeGene at http://www.wegene.com has begun DNA testing focused on the Chinese marketplace.

Their website it in Chinese, but Google translates it, at least nominally, as does Chrome.

WeGene1

WeGene2

It does not appear that WeGene does matching between their customers, or if they do, I’ve missed it in the translations.

You can, however, upload at least 23andMe files to WeGene. I can’t tell about Family Tree DNA and Ancestry files.  Unless you have direct and fairly recent Chinese ancestry, I don’t know what the benefit would be.

Their privacy and security, such as it is, is at this link, although obviously autotranslated. Some people seem to have found other verbiage as well.  Navigating their site, written in Chinese, is very difficult and the accuracy of the autotranslation is questionable, at best.

Their autosomal DNA file is obviously available for download, because GedMatch now accepts these files.

I am certainly not uploading my DNA to WeGene, for numerous reasons.

Vendor Summary

This vendor summary was more difficult to put together than I thought it would be – in part because I am not a new user at either Ancestry or 23andMe and obviously can’t see what a new user would see on any of my accounts. Furthermore, Ancestry in particular has several documents that refer back and forth to each other, and let’s just say they are written more for the legal mind than the typical consumer.

vendor summary

* – Both 23andMe and Ancestry appear to utilize all clients DNA for anonymized distribution, but not for identified distribution without an individual opt-in.

*1 – According to the 23andMe Privacy Policy, although you can opt in to the higher level of research testing where your identity is not removed, you cannot opt out of the anonymized level of DNA sharing/sale. Please review current 23andMe documentation before making a decision.

*2 – Can Opt in or Opt out.

*3 – Can opt out of non-anonymized sales, but not anonymized sales. Please verify utilizing the current Ancestry documents before making a decision.

*4 – DNA.land indicates that you can withdraw consent, but does not say anything about deleting your DNA file.

*5 – DNA.Land states in their consent agreement that they will not provide identified DNA information without first contacting you.

*6 – At 23andMe, deleting DNA from data base closes account.

*7 – Automatically opted in for anonymized sales/sharing, but must opt in for identified DNA sharing.

*8 – 23andMe has been and continues to experience significant difficulties and at this point are not considered a viable genetic genealogy option by many, or stated another way, they would be the last choice of the main three testing companies.

*9 – All legal action must be brought in Tel Aviv, Israel, individually, and not as a class action suit, according to item 9 in the DNA Terms of Use document.

*10 – Website in Chinese, information through an automated English translator, so the information provided here is necessarily incomplete and may not be entirely accurate.

Please note that any or all of these factors are subject to change over time and the vendors’ documents should be consulting and read thoroughly at the time any decision is being made.

Please note that at some vendors there are many different documents that cross-reference each other. They are confusing and should all be read before any decision is made.

And of course, some vendors’ websites aren’t even in English.

Points to Consider

While these companies are the ones that have come to the forefront in the past few months, there will assuredly be more as this industry develops. Here are a list of things for you to think about and points to consider that may help you make your decision about whether you want to either test or upload your autosomal DNA with any particular company.  After all, your autosomal DNA file does contain that obviously much-sought-after medical information.

First, always read every document on a vendor site that says anything like “Terms of Use,” “Security and Privacy” or “Terms of Service” or “Informed Consent.” Many times the fine print is spread throughout several documents that reference each other.  If their policy does not say specifically, do NOT assume.

Also be aware that the verbiage of most companies says they can change their rules of engagement at any time without notification.

Here are the questions you may want to consider as you read these documents.

  • Does the company or organization sell or share your data?
  • Is the data that is sold or shared anonymized or nonanonymized, understanding that really no one is truly anonymous anymore?
  • Who do they sell your data to?
  • For what purpose?
  • Do you have the opportunity to authorize your DNA’s involvement per study?
  • If you do not live in the same country as the company with whom you are doing business, what recourse do you have to enforce any agreement?
  • How do you feel about your DNA being in the hands of either organizations or companies you don’t know for purposes you don’t know?
  • Are you asked up front if you want to participate?
  • Can you opt out of your DNA being shared or sold entirely from the beginning?
  • Can you opt out of your DNA being shared or sold entirely at any time if you have initially opted in?
  • Do you receive the opportunity to opt in, or are you automatically opted in?
  • If you are automatically opted in, do you get the opportunity, right then, to opt out, or only if you happen to discover the situation? And if you can opt out immediately, are you only able to opt out of non-anonymized data or can you opt out entirely?
  • Is the company up front and transparent about what they are doing with your DNA or do you have to dig to unearth the truth?
  • If you already tested, and gave up rights, were you aware that you did so, and do you understand if or how you can rescind that inadvertent authorization?
  • Do you have to dig for the terms of service and are they as represented in the marketing literature?
  • Do you feel like you are giving truly informed consent and understand what can and will happened to your DNA, and what your options are if you change your mind, and how to exercise those options? Are you comfortable with those options and the approach of the company towards DNA sale as a whole? Were they forthright?
  • For companies like MyHeritage and Ancestry, are their other unknown “gotchas” like a subscription being required in addition to testing or uploading to obtain the full benefits of the test or upload?
  • What happens to your DNA if the company no longer exists or goes out of business? For two examples, look at the Sorenson and Ancestry Y and mtDNA DNA results. This is certainly not what any consumer or tester expected. Not to mention, I’m left wondering where my DNA submitted to genesandus is today.
  • Who owns the company?  What are their names?  Where can you find them?  What is the address of the company?  What does google have to say about the owners or management?  Linked-In?  Facebook?  If there is absolutely no history, that’s probably as damning as a bad history.  No one can exist today in a professional capacity and have no history.  Just saying.
  • Is the company acting in any way that would cause you not to trust them, their motives or agenda?  As my mother used to say, the best predictor of future behavior is past behavior.

Near and Dear to My Heart

I have family members who work in the medical field in various capacities. I also have family members who have or have had genetically heritable conditions and like everyone else, I would love to see those diseases cured.  My reticence to donate my DNA to whomever for whatever is not a result of being heartless.  It’s a function of wanting to be in control of who profits with/from my DNA and that of my family.

Let me share a personal story with you.

My brother died of cancer in 2012. He went for chemo treatments every two weeks, and before he could have his chemo treatment, he had to have bloodwork to assure that his system was able to handle the next dose of chemo.

If his white cell count was below a certain threshold, a shot of a drug called Neulasta was available to him to stimulate his body to increase the white blood cells. The shots were $8000 a piece.  And no, that is not a typo.  $8000!  His insurance did not cover the shots, because as far as they were concerned, he could just wait until his white cell numbers increased of their own accord and have the chemo then.  Of course, delaying the chemo decreased his chances of survival.

Over the course of his chemo, he had to have three of these $8000 shots. Fortunately, he did have the money to pay, although he did have to reschedule his appointment because he was required to bring a cashier’s check with the full payment in advance before the clinic would administer the shot.  After that, he simply carried an $8000 cashier’s check to each appointment, just in case.

I do not for one minute believe that those shots COST $8000 to manufacture, but I do believe that the pharmaceutical industry could, would and does CHARGE $8000 to desperate patients in order to continue the chemo that is their only hope of life. For those whose insurance pays, it’s entirely irrelevant. For those whose insurance does not pay, it’s a matter of life and death.  And yes, I’m equally as angry with the insurance company, but they aren’t the ones asking for me to do donate my DNA.

So, as for my DNA, no Big Pharm company will ever get their hands on it if there is ANYTHING I can do about it – although it’s probably too late now since I have tested with both 23andMe and Ancestry, who do not allow you to opt out entirely. I wish I had known before I tested.  At least I would have been giving informed consent, which was not the case.

Consequently, I want to know who is doing what with my DNA, so that I have the option of participating or not – and I want to know up front – and I don’t want it hidden in fine print with the company hoping I’ll just “click through” and never read the documentation. I don’t want it to be intentionally or unintentionally confusing, and I want unquestionable full disclosure – ahead of time.  Is that too much to ask?

My brother had the money for the shots, and he died anyway, but can you imagine being the family of someone who did not have $24,000?

And if you think for one minute that Big Pharm won’t do that, consider Turing Pharmaceuticals CEO Martin Shkreli, dubbed “the most hated man in America” in September 2015 for gouging patients dependent on a drug used for HIV and cancer treatment by raising the price from $13.50 per pill to $750 for the same pill, a 5,556% increase – because he could.

Medical research to cure disease I’m supportive of in terms of DNA donation, but not designer babies and not Big Pharm – and today there seems to be no way to separate the bad from the good or to determine who our DNA is being sold to for what purpose. Worse yet, some medical research is funded by Big Pharm, so it’s hard to determine which medical research is independent and which is not.

The companies selling our DNA and Big Pharm are the only people who stand to benefit financially from that arrangement – and they stand to benefit substantially from our contributions by encouraging us to “help science.” We’ll never know if a study our donated DNA was used for produced a new drug – and if it’s one we can’t afford, you can bet the pharmaceutical industry and manufacturers care not one whit that we were one of the people who donated our DNA so they could develop the drug we can’t afford.  If any industry should not be soliciting free DNA donations for research, Big Pharm is that industry with their jaw-dropping profits.

So, How Much is Our DNA Worth Anyway?

I don’t know, directly, but we can get some idea from the deal that 23andMe struck with pharmaceutical company Genentech, the US unit of Swiss drug company, Roche, in January 2015, as reported by Forbes.

Quoting now, directly from the Forbes article:

According to sources close to the deal, 23andMe is receiving an upfront payment from Genentech of $10 million, with further milestones of as much as $50 million. The deal is the first of ten 23andMe says it has signed with large pharmaceutical and biotech companies.

Such deals, which make use of the database created by customers who have bought 23andMe’s DNA test kits and donated their genetic and health data for research, could be a far more significant opportunity than 23andMe’s primary business of selling the DNA kits to consumers. Since it was founded in 2006, 23andMe has collected data from 800,000 customers and it sells its tests for $99 each. That means this single deal with one large drug company could generate almost as much revenue as doubling 23andMe’s customer base.

The article further says that the drug company was particularly interested in the 12,000 Parkinson’s patients and 1,300 of their parents and siblings who had provided family information. Ten million divided by 13,300 means Genentech were willing to pay $750 for each person’s DNA, out the door.  So the tester paid $99 or upwards, depending on when they tested – $1000 before September 2008 when the test dropped to $399, to 23andMe and then 23andMe made another $750 per kit from the tester’s donated DNA results.

And that’s before the additional $50 million and the other deals 23andMe and the other DNA-sellers have struck with Big Pharm. So yes indeed, our DNA is worth a lot.

It’s no wonder so many people are trying to trying to find a way to entice us to donate our results so they can sell them. In fact, it’s a wonder, and a testament to their integrity, that there is ANY company with access to our DNA results that isn’t selling them.  In fact, there are only two companies, plus the Genographic Project.

Who Doesn’t Share or Sell Your Autosomal DNA?

Of the major companies, organizations and sites, the only three, as best I can tell, that do not share or sell your autosomal DNA (or reserve the right to do so) and specifically state that they do not are National Geographic’s Genographic Project , Family Tree DNA and GedMatch.

Of those three, Family Tree DNA, a subsidiary of Gene by Gene is the only testing company and says the following:

Gene by Gene collects, processes, stores and shares your Personal Information in a responsible, transparent and secure environment that fosters our customers’ trust and confidence. To that end, Gene by Gene respects your privacy and will not sell or rent your Personal Information without your consent.

National Geographic utilizes Family Tree DNA for testing, and the worst thing I could find in their privacy policy is that they will share:

  • with other selected third parties so that they may send you promotional materials about goods and services that they offer. You have the opportunity to opt out of our sharing information about you as described below in the section entitled “Your Choices”;
  • in accordance with your consent.

Nothing problematic here.

Your Genographic DNA file is only uploadable to Family Tree DNA and Nat Geo does not accept uploaded data from other vendors.

GedMatch, which allows users to upload their raw data files from the major testing companies for comparison says the following:

It is our policy to never provide your genealogy, DNA information, or email address to 3rd parties, except as noted above.

Please refer to the entire documents from these organizations for details.

Serious genealogists have probably already uploaded to GedMatch and tested at or uploaded to Family Tree DNA as well, so people are unlikely to find new matches at new sites that aren’t already in one of these two places.

To Be Clear

I just want to make sure there is no confusion about which type of companies we’ve been referencing, and who is excluded, and why. The only companies or organizations this article applies to are those who have access to your raw data autosomal DNA file.  Those would be either the companies who test your autosomal DNA (National Geographic, Family Tree DNA, Ancestry and 23andMe in the US and WeGenes in China), or if you download your raw data file from those companies and upload it to another company, organization or location, as discussed in this article.  The companies and organizations discussed may not be the only firms or organizations to which you can upload your autosomal DNA file today, and assuredly, there will be more in the future.

The line in the sand is that autosomal DNA file. Not your Y DNA, not your mitochondrial DNA, not your match list – just that raw data file – that’s what contains your DNA information that the medical and pharmaceutical industry seeks and is willing to pay handsomely to obtain.

There are other companies and organizations that offer helpful tools for autosomal DNA analysis and tree integration, but you do NOT upload your raw data file to those sites. Those sites would include sites like www.dnagedcom.com and www.wikitree.com. I want to be sure no one confuses sites that do NOT upload or solicit the upload of your raw autosomal DNA files with those that do.  I have not discussed these sites that do not upload your autosomal DNA files because they are not relevant to this discussion.

This article does not pertain to sites that do not utilize or have access to your autosomal raw data file – only those that do.

Summary

As the number of DNA testing consumers rises, the number of potential targets for DNA sales into the medical/pharmaceutical field rises equally, as does the number of targets for scammers.

Along with that, I increasingly feel like my ancestors and the data available through my DNA about my ancestors, specifically ethnicity since everyone seems to be looking for a better answer, is being used as bait to obtain my DNA for companies with a hidden, or less than obvious, agenda – that being to obtain my DNA for subsequent sale.

I greatly appreciate the Genographic Project, Family Tree DNA and GedMatch, the organizations who either test or accept autosomal file uploads do not sell my DNA, and I hope that they are not forced into that position economically in order to survive. It’s quite obvious that there is significant money to be made from the sale of massive amounts of DNA to the medical and pharmaceutical communities.  They alone have resisted that temptation and stayed true to the cause of the study of indigenous cultures and population genetics in the case of Nat Geo, and genetic genealogy, and only genetic genealogy in the case of Family Tree DNA and GedMatch.

In other words, just because you can doesn’t mean you should.

Frankly, I believe selling our data is fundamentally wrong unless that information is abundantly clear, as in truly informed consent as defined by the Office for Human Research Protections, in advance of purchasing (or uploading) the test, and not simply a required “click through box” that says you read something. I would be much more likely to participate in anything that was straightforward rather than something that was hidden or not straightforward, like perhaps the company or organization was hoping we wouldn’t notice, or we would automatically click the box without reading further, thinking we have no other option.

The notice needs to say something on the order of, “I understand that my DNA is going to be sold, may be used for profit making ventures, and I cannot opt out if I order this DNA test,” if that is the case. That is truly informed consent – not a check box that says “I have read the Consent Document.”

Yes, the companies that sell DNA testing and our DNA results would probably receive far fewer orders, but those who would order would be truly informed and giving informed consent. Today, in the large majority of cases, I don’t believe that’s happening.

We need to be aware as consumers and make informed decisions. I’m not telling you whether you should or should not utilize these various companies and sites, or whether you should or should not participate in contributing your DNA to research, or at which level, if at all. That is a personal decision we all have to make.

But I will tell you that I think you need to educate yourself and be aware of these trends and issues in the industry so you can make a truly informed decision each and every time you consider sharing your DNA. And you should know that in some cases, your DNA is being sold and there is absolutely nothing you can do about if it you utilize the services of that company.

Above all, read all of the fine print.

Let me say that again, channeling my best Judy Russell voice.

ALWAYS, READ ALL OF THE FINE PRINT!!!

ALWAYS.
READ.
ALL.
OF.
THE.
FINE.
PRINT.

Unfortunately, things are not always as they seem on the surface.

If you see a click-through box, a red neon danger light should now start flashing in your brain and refuse to allow you to click on that box until you’ve done what? Read all the fine print.

There really is no such thing as a free lunch – so be judiciously suspicious.

I will leave you with the same thought relative to testing companies and upload opportunities that I said about companies selling our data. Just because you can doesn’t mean you should.

I think early in this game we all got excited and presumed the best about the motives of companies and organizations, like I did with both 23andMe and genesandus, but now we know better – and that there may be more to the story than initially meets the eye.

And besides that, we all know that presume is the first cousin to assume…and well, we all know where this is going.  And by the way, that’s exactly how I feel about genesandus who disappeared with my and my husband’s DNA.  I wasn’t nearly suspicious or judicious enough then…but I am now.

Family Finder Matching Thresholds Changing at Family Tree DNA

By Endlisnis – Street limbo 3, CC BY 2.0, https://commons.wikimedia.org/w/index.php?curid=45772088

A long-requested change is taking place shortly at Family Tree DNA – although we don’t have a firm date as of yet.  Final testing before release is still underway.

I received a notification from Family Tree DNA, as follows:

You asked for it and we listened!

Currently, the current matching thresholds – the minimum amount of shared DNA required for two people to show as a match are:

  • Minimum longest block of at least 7.69 cM for 99% of testers, 5.5 cM for the other one percent
  • Minimum 20 total shared centiMorgans

Some people believed those thresholds to be too restrictive, and through the years requested changes that would loosen those restrictions.

In the near future, as soon as the quality assurance process is complete, the following changes will be implemented to the matching program.

  • No minimum shared centiMorgans, but if the cM total is less than 20, at least one segment must be 9 cM or longer.
  • If the longest block of shared DNA is greater than 9 cM, the match will show regardless of total shared cM or the number of matching segments.

The entire existing database is being rerun using the new matching criteria, and all new matches calculated with the new thresholds.

Most people will see only minor changes in their matches, mostly in the speculative range. They may lose some matches but gain others.

This is truly exciting news, especially for people with African American heritage whose connections to matches may be several generations back in time and may not have met the previous 20cM total threshold criteria. In fact, these new thresholds may benefit many of us with deep colonial roots, but I’m hoping that people who have had few matches until now will be pleasantly surprised.

As soon as this change is released, I’ll be checking to see if I’ve gained or lost matches, and will report back as either additional information or results are forthcoming!

Back in the Saddle Again – OK, Sidesaddle, Riding Very Slowly

sidesaddle me

Well, I’m pleased to let my readers know that I’m back in the saddle again. Ok, maybe not fully in the saddle.  Maybe I’m riding side saddle and very slowly right now, and gingerly.  According to some in the family, I shouldn’t even be on the horse…but I am.  Or, in my case, perched on a rock.

My husband was gracious enough to make me a temporary office on the main floor of the house – probably because he got sick of me whining about getting texting hand injuries from trying to function entirely on my iphone as I lay flat on my back on ice packs. Let’s just say it has been a very long 5 weeks and my family has been just wonderful – beyond all expectations.

And this walk outside – it was glorious. Being cooped up inside (5 weeks today, not that I’m counting) is so difficult when I know those weeds are growing and needing to be pulled up by the roots!  The beautiful phlox is in bloom, the cherry trees are just finishing, in the background…nothing as beautiful as springtime!  And the sunshine – it just felt SOOOoooo good.

In all seriousness, back injuries are no joke and excruciatingly painful, especially if you cannot take narcotic drugs.

However, ice, heat, rest and time help a great deal (In addition to my wonderful family) and my neurosurgeon has told me that I just need more of the same. I’m improving every day and have informed my husband that the surgeon said that I cannot do yard work nor housework, and I have a witness.  In fact, I’m likely to never be able to do those things again, ever.  Miss Mary, my quilt sister, accompanied me to the appointment and she swears that’s exactly what the doctor said!  She’s got my back, pardon the pun.

Right Miss Mary???

The funniest thing about the doctor visit was when the doctor said, “Well, you can’t change your genetics” and Miss Mary piped right up and said, “Well, if anyone can, she can.” He looked very quizzical of course and we all had a good laugh after discussing how different medicine, including genetics will be in another generation or even another decade.

This of course made me think about the past and wonder what happened when my poor ancestors encountered this type of situation.

The history of spinal cord injury reaches far back into history, with some insight and a lot of myth and mystery – not to mention misery and experimentation.

Spinal surgery had begun in England in the early 1800s, and yes, without anesthetic. It’s no wonder so many patients died.  They wanted to.

The first successful laminectomy which removed a disc which was compressing a nerve which resulted in paralysis from a fall from a horse was performed in Kentucky in 1829 by a doctor who had studied in Philadelphia.

That’s probably because while there was no anesthetic, Kentucky had plenty of moonshine.

In the 1800s, and before, back pain that was not a direct injury was thought to be a form of rheumatism. In fact, according to the book, “Occupation and Disease: How Social Factors Affect the Conception of work-Related Disorders” by Allard Dembe, it wasn’t until about WWI when the US passed the major worker’s compensation laws that back pain was considered to be a result of trauma, meaning an injury, not rheumatism, which was considered to be an illness.

There was also considered to be difference between a debilitating spinal injury, from something specific, like falling from a horse, or a building, and an injury from something like working in the field, or the garden. The latter was rheumatism.  In fact, I still remember the old people talking about their “rheumatism flaring up” and rubbing their backs when I was younger.  I didn’t understand then, but now it makes perfect sense.

The term rheumatism in the current sense has been in use since the late 17th century, as it was believed that chronic joint pain was caused by excessive flow of rheum or bodily fluids into a joint.

The term rheumatism is somewhat older, adopted in the early 17th century  from Late Latin rheumatismus, ultimately from Greek ῥευματίζομαι “to suffer from a flux”, i.e. any discharge of blood or bodily fluid.

Before the 17th century, joint pain thought to be caused by viscous humours seeping into the joints was named gout, a word adopted in Middle English from Old French gote “a drop; the gout, rheumatism.”

Now, the good news, if there was any for those 17th and 18th century sufferers, is that opioid medications were readily available “over the counter” at that time, so hopefully, while our ancestors were in pain, they truly didn’t suffer terribly.

I know for a fact that my bootlegging ancestors had their own brand of pain-killer, and I doubt that some of them did enough manual labor to hurt their backs in the first place.

Still, I’m very glad to be living today, because if I do need surgery again one day, I want anesthetic, and I’m very grateful for modern medicine, especially after reading that article titled, “A Brief History of Therapy for Traumatic Spinal Cord Injury” by Jason Lifshutz and Austin, Colohan, M.D.s. In many cases, it looked to me like the treatment was worse than the injury.  If I were you, I’d just skip that article and take my word for it, or better yet, maybe just go and get yourself some of that moonshine and you won’t care anymore about what’s in that article, and you won’t remember that your back was hurting either!

Thanks to one and all for your kind words of support, prayers, flowers, e-mails, cards, chocolate (that’s a medicine, didn’t you know) and the cookies too – not to mention lunch visits, smoothie runs, fabric cupcakes (no calories and cat approved), rides to the doctor and two turtles. Don’t ask about the turtles.  That’s a story for another day – and yes, that too involves Miss Mary!!!

fabric cupcake