Blind Spots - the Good and Bad

I hope that the people at JJSDiabetes will read this.  I owe them an apology for posting on their blog.  It is clearly marked now that it is for members only.  If it was before, I will admit that I did not see it.  So I admit to having a punctum cecum (a blind spot).

The topic was about the Lancet Study and while they do say that each patient needs an individual plan, I made a comment about the study being faulty and poorly carried out.  My comment is at "Where Are "U"?" which is now several posts down.  A second post then offered another study and referred to an article by Janet Ruhl.  So now I need to apologize to Janet for getting her dragged into this as well.

Did it end there - no, not by a long way.  I received a rather nasty email from the person of the blog.  I admit I should not have posted a comment, but it is now the subject of a second post.

I can only pray that this doctor (see his litany of his education in the post) can recover from his punctum cecum and treat his patients with a little concern.  My post should not have been published since I am not a member, but the rage shown is over the top.   I made a mistake so I have to live with it.  Then he does even more by going after Janet Ruhl.  I will let you read his response to her article and she did not even post a comment.  Enough of this vent.  It just reinforces the topic below.
 
How exciting is the internet?  I had been working on this post and pulling ideas from other bloggers and forum members about patient - doctor problems.  The above example and the blog by Trisha Torrey from About.com of Jan 18, 2010 worked to bring my thoughts together.  Her article is about a problem we all have - a panctum cecum.  Then she tied it together with the medical community, and specifically physicians.  While I totally agree with her analysis and examples, I want to expand this to include the entire medical community.

This is not to be a put down of the entire medical community; There have been enough problems between doctors and patients with mistakes on both sides to generate a library.  Of particular interest was a comment by Trisha Torrey that bears emphasis.  When doctors ignore their blind spot (my words), "it's information we patients can use to help our physicians understand why it is they need to think harder.  Why they need to rustle up their best practices in differential diagnosis.  And why we patients need to hold their toes to the fire."

There are many times on the diabetes forums when we read of patients saying that when the doctor gives them the diagnosis, he gives them a handful of prescriptions, and says they will see you in three to six months or longer.  There are other versions about not being given testing supplies, or the worst, watch your sugar and see you in three months (no exact wording of diagnosis even given).

Doctors are busy and set about 15 minutes to see each patient.  The doctors often have little or no choice in this as the medical insurance companies often dictate the length of time for which they will reimburse the doctor.  This is a practice that needs change from a medical and insurance perspective.  When a patient is given a diagnosis of diabetes or any other disease, there should be extra time taken to explain the medicines, the treatment, and the goals that need to be established.

There are those (like me) that think that some of the examples happen because the doctor has not kept up with the developments in diabetes and wants to do some research before the next appointment.  Some doctors  have a hard time telling the patient the bad news, while others are afraid that the patient will follow their own course of action and not follow their instructions.  And this is true for some patients.

Why don't doctors make use of dietitians, certified diabetes educators, other specialists, or refer their patients to an endocrinologist?  Some doctors do not have access to these people because of being in small rural areas and too far from these resources.  Some think they are the only doctor the patient needs.  Others do not want these resources contradicting what they tell the patient and some just don't want to lose the patient.

Some doctors are locked into situations where they are told to work with specialists who will contradict them every chance they can.  Then we have the doctors that are confident of themselves, do make referrals, and deal with conflicting advice is a positive manner.  Many are understanding of their patients  and some actually talk with their patients and not at them.  If you are fortunate enough to have one of these rare doctors, treasure them, they are looking out for you.

Dr. Bill Quick suggests is his blog of January 23, 2010 about drug labels that we read the labels and the required FDA enclosures to "wow your doctor at the nest visit with all sorts of trivia you've learned".  Yes,  he went on to to give some excellent reasons for doing your homework.  Then he delivered the best reason - "After all, you're the one who's taking the medication, and you have the opportunity to learn more.  Go for it!"   Was his humor in order - maybe for some people and some doctors, but for diabetes patients, there has to be some concern if doctors view our knowledge in this manner.

We need to think about our doctors and the lack of information that we are given.  Applying the logic of Dr. Quick - the doctor is not the one that will suffer from the lack of advice or giving us poor information, we the patients are the ones who will pay the price, and suffer the complications.  Letting our doctors get away with this is not something we should accept.  Rather than allowing them to duck their responsibilities, we the patients need to "hold their toes to the fire".

Will Ryan states is his blog that less than half of the people with diabetes are receiving  education about diabetes.  This is sad.  While diabetes has many twists and turns, it is not unmanageable or uncontrollable.  No, we are not always in every situation going to have excellent control, but by learning the signs and what causes problems, we can prevent poor control.   We can keep the beast under good to excellent control despite our doctors, but their assistance helps even more.

Now while dietitians, diabetes educators, RN's, and any other specialist that is not a doctor, seem to march lock step with the ADA, we need to also hold their toes to the fire.  Some of these professionals are realizing that each patient is different and have requirements unique to them; and they are tailoring programs to fit the patient.   These professionals respect their profession, honor their jobs, and are those we can rely on and trust.  Others unfortunately, will not stray from an ingrained doctrine that is promoted by the ADA and will not hear of any deviation; and they will openly contradict any doctor trying to work with a patient to meet the needs of the patient.  They will sabotage the doctors for any number of reason.  They are supposed to be professionals, but they take any doctor to task for not sending all patients to them, a remark that the doctor makes and for a host of reasons.  Whether these professionals have a "blind spot" is self evident, and they need to change their profession.

Now we come to us - the patients with diabetes.  We need to learn that knowledge is power.  We have to become proactive in our care.  We have to understand how patient empowerment can help us.  This means that we need to educate ourselves and learn from every source available to us.  We need to know when we make mistakes and admit them.  Then we need to learn how to use this knowledge - and not just to "wow" our doctors.  Some people have wrongly assumed this means disagreeing with our doctors.  No Way!  It means intelligently discussing your care and treatment with your doctor(s).  It should include finding the right medicine with your doctor to fit your symptoms, body chemistry, and well-being.  Not all medicines work for every patient.   It will include discussions with your doctor about whether or not meds will be necessary for what length of time, and what the requirements are to be able; if possible, to get off a medicine.  It will also include what to do if you experience any of the side effects.

We need to continue our education to be able to maintain control of our diabetes and to know when, outside of regular office visits, to contact our doctor about a problem.  We need to learn what factors can influence our control of diabetes.  Some of the problems, in no specific order, are - stress and hypertension, sleep apnea, illness, inflammation, certain foods, the use of steroids (prescribed) to treat pain, depression, and many others.  These are things that we can learn how to control once we recognize them for what they are.  Easy, maybe not, but with the assistance of our doctor and the education we can accumulate, we can exercise some control and get back to nearer normal more rapidly.  So for this I will say we need to hold our own toes to the fire as well.

Before leaving this, I must mention a blog on February 9, 2010 by Amy Tenderich about Health 2.0.  There is much merit in the discussion she refers to and this should have a place for us in the future.  Follow the link she provides for some of the discussions.

Thoughts and a request

Thoughts

The last two days have been interesting and very disappointing!  It is interesting that very few type 2 bloggers have made little or no comments about the Oprah and OZ show.  Not only did they go for ratings and the sensational aspects, but missed an opportunity to do something positive for people with diabetes.

I have never been a fan of the Oprah show, but she has done some good things, but when combined with a doctor of medicine who apparently can not make a living in medical practice, we get knifed in the back and have to put up with more misinformation for several years.


Request

If you are a person with diabetes (type 2) that is blogging about diabetes - if you are interested in being listed on David Mendosa's web site in the list of Type 2 bloggers (about 1/3 the way down the page) between item 52 and item 53, please send me an email and I will forward your request to him.

I have been encouraging type 2 people that are blogging and have let several months pass, to continue blogging.  There are many more type 1 people blogging and we need to continue being represented.  There are many good Type 2 bloggers and I want them to succeed.

My email is on my profile page.

Thank you.

Which is More Important?

Which is indeed more important - the news about a group uniting resources to develop a product which is potentially more than five years in the future and more likely 20 years from success, if then, or what is being foisted on us by a group of surgeons and the American Diabetes Association without proper studies and proof that the procedure will not do more damage than good.

I would normally like to step back and let the dust settle some, but since some bloggers have chosen to go ga-ga and make sure we know everything there is to know about a product that does not exist yet, I have to wonder why we get so wrapped up in the hype.  That a lack of common sense and proof that a product is possible are forgotten to hype an idea that is more than five years in the future makes me wonder why we even read this.   Something like this is possibly worth mention, but not on page one.   I am so tired of hype from this study and that study that are poorly conceived and more poorly constructed and developed that I will wait until something is approved by FDA or other government agency and possibly due to be on the market before getting excited.  Yes, I will watch to see if the efforts are still going forward to develop it, but beyond that I do not intend to spend more time than this.

What I am not understanding is how we have something going on today that is being overlooked and being encouraged to go forward without proper scientific backing and with the blessing of the ADA.  NOTE:  Copy the following into the search box to be taken to the article - doi: 10.1097/SLA.0b013e3181be34e7.   We are lucky that Janet Ruhl has chosen to write about this. No one else seems to be even aware that a group of doctors are being given a nod to charge high fees for an unproven surgery.

I am concerned that many people who are easily persuaded by doctors and their own fear of diabetes, plus the fear of giving up their "good" life will have this bariatric surgery which at this point has to be risky at best.   I have seen several persons posting on several forums who have had the surgery, but do not tell us what is happening to them now.  After a month of how good they feel, I am not aware of any that are participating any longer to make us aware of the successes or pitfalls of having the surgery.   That is not to say that I may have missed a post or two, but I do feel that many just disappear and never come back to let us know how good or how bad the decision was.

Depression and Other Thoughts

Sorry this has been a while since posting anything.  After doing my volunteer work, I was having a difficult time getting all the information together for another post and am still waiting for some additional information.  Yes, I may have had a little writer's block and a good dose of the following. 

Depression for people with diabetes is a factor to deal with.  David Mendosa has written about it describing five strategies for conquering depression.  I agree that the five strategies are good for many people, I am a little disappointed that two of them do nothing for me.  The five are

• Exercise - this is the best one for me.  I have to get my repetitions up, but it is helping better than anything.
• Music - may help many, but leaves me cold.  Probably because it is difficult to get much on the local radio stations that is relaxing.  That plus being in a poor reception area and a lot of electrical interference makes it nerve racking.
• Meditation - I have never been taught how to meditate and thus cannot say what this would do for me.
• Vitamin D - This has helped, and my last test was 64 which is not at the bottom.  The vitamin D that I have been taking must be helping.
• Omega-3 - This may help, but I need to do more research here.

Now understand this is for minor depression and that severe depression requires medication.   Mr. Mendosa states in this article that 19 percent of people with diabetes suffer from major depression and an additional two thirds of us have some symptoms of depression.  This means that it can be a constant companion that we need to deal with on a daily basis.  I think for me, this winter is probably more difficult for me.  I have always enjoyed living here, but after breaking my tail bone last winter on ice,  this winter has taken a lot out of me

In the limited research about this, every source is willing to go into detail about symptoms and causes, and most make the assumption that the depression is major and the only treatment is medication and psychotherapy.   Very few even mention minor depression and variations on this theme.  The National Institute of Mental Health seems to have the more balanced approach to depression.   They list many of the symptoms, but do little to enlighten us on the various causes.

Of course, I may also be talking about something that is not depression, but related.  At least most of the sources listed illness as a contributing factor.  The one statement many made, that I have to agree with is "Most people with depression never seek help".  Most refer to common treatments of medication and psychotherapy, which means severe or major depression and not minor depression.

Other Thoughts -----

Since January began, I have been pleasantly surprised at the number of blogs that have really said something to me.  I read a lot, but most I read and go on to the next.  So the following people need my thanks -

1. Tom Ross - two blogs - one on 01/08/10 and 01/09/10.  The first deals with diabetes and smoking and then with the alarming fact that many doctors are not properly treating or seeing that their patients are given proper instruction to handle their diabetes.  We are seeing more and more of this on the forums when people come asking what to do when the doctor have left them wondering how to take care of themselves.  The second covers the middle ground and the lack of clear defining definitions for the meanings of diabetes.  An example is the poor definition of prediabetes.  Thanks Tom for blogs to make you think about what some of us take for granted and misuse when talking about diabetes.
2. Bennet Dunlay - blog of 01/07/10.  His discussion is about our misleading food labels.  This is a topic that needs investigation and more exposure.  
3. Will Ryan - blog of 01/04/10.  Shows how we need to be alert 24/7.  Covers how a small incident resulted in a meter reading over 400.   Will - we all need reminding.
4. Scott Strumello - blog of 01/08/10.   This is a well written article about the new insulins that may be coming on the market and that may help bring overall costs to a more reasonable level.  This is a much needed improvement and may make insulin more available world-wide.
5. Robert Scheinman - blogs of 01/04/10 and 01/11/10.  Two articles about fat and how the different types affect those of us with diabetes.   I normally do not read articles like these, but for once I am very happy I did.  

These are the ones that really meant something to me.  There were a few others that were interesting, but had no lasting impact.

I am on a mission to encourage bloggers with type 2 diabetes that have not blogged for a while to get back to blogging.  One has and I hope others will renew their blogging.

Lesson to be learned

Before doing this, I had to do some hard thinking and get back to my positive side.  If you are interested, please read a post by Dr. Bill Quick at My Diabetes Central.  He did an excellent post correcting information put in the public domain by the American Diabetes Association.  This information was, to say the least, poorly thought out and not the full truth.

I must thank Tom Ross for his blog of Nov 9, 09.  I agree with his analysis of a common concern of newly diagnosed people with diabetes.  Most do seem to want the "rules" that they can follow to be able to be compliant with their doctors' orders (if indeed the doctor ordered anything).

I belong to a couple of forums about diabetes and this repeats itself very often.  All are searching for some simple rules to get their blood glucose under control so they can return to living.  They do not realize that diabetes is a 24/7 problem they must deal with.  Many, but not all, do not want to hear what they are told and never post again.  Others take a different tack and reposition their question to elicit a response more in their favor.  Failing with this, they post the same or similar questions on several forums.  A few wake up, pay attention, and proceed to ask the real questions.  They are receptive to the variables and the idea that the "rules" are the ones they discover about their own situation and body chemistry.

We can tell people that "what works for me, may not work for you", but many do not listen.  When something does not work, they blame the forum and its' members and do not return.  They keep looking on other forums for answers, but do not find them and never post again. 

I may be wrong, but "rules" and "quick fixes" seem to be at the top of a list of what these people are looking to find.  Few are type 1's, but the majority are type 2's.  Many, unfortunately, do not have insurance and are unable to do everything they should to test as frequently as they need to for determining what foods their body is capable of handling.  Controlling their blood glucose now becomes a problem which the doctor often can not help.

Since November is diabetes awareness month, there are many bloggers putting out some excellent blogs for diabetes awareness.  Hopefully they are reaching more than just fellow bloggers.  I am listing several that have something to say.  Amy Tenderich has an excellent blog on Nov 13 about some interesting technologies on the horizon (and in the near future I hope).

The over commercialization of diabetes and the attempt to take advantage of people with diabetes is the subject of posts by Janet Rulh on Nov 8 and Scott Strumello on Nov 13.  They both make valid points that must be considered and expose some of the shortcomings of diabetes awareness month and diabetes day (Nov 14).  I admit that I was unaware of what happened during diabetes awareness month other than it was a month on the calendar.  I had never heard of diabetes day.  Some bloggers are doing a lot within the diabetes community, and a few are actually channeling their efforts outward to the public to make them more aware of the truth of diabetes.  This is where I hope to make some effort next year. 

I appreciate Scott Strumello's blog about dogs for the hypoglycemicly unaware.  He listed one supplier that is being sued by the State of Missouri for violations, but otherwise the blog was good to put in front of the people.  This is a repeat for a previous post.

George Simmons took a different view of veterans's day.  Since he is unable to serve his country in the military, he has chosen to view himself as a veteran in his war on diabetes.  Good interpretation and a worthy cause George.

Notice on Diabetes Alert Dogs

For all future blogs about diabetes alert dogs, service dogs, and related blogs, these will be found at the following link.   Thank you, Bob

I feel that separating the two topics will allow more concentrated effort for each.

Diabetes Resources on the Web

The number of web sites devoted to diabetes continues to grow. This should be a good thing, but I am wondering if we are getting the advantage. It seems that many of the sites do nothing but promote more studies about nothing and create more misinformation.

I had hopes when Amy Tenderich covered a new site "TheDiabetesResource.com" that had been sending out emails to announce it arrival on the scene. Its mission was to be a resource for all that is about diabetes. Amy's coverage was on October 5, 2009.

So to see what Amy was talking about I did some investigation. I discovered that it had a listing of blogs about diabetes; however, when I looked further, many of the blogs are misclassified, listings are duplicated, and in some cases are dead sites still on the web (anything with no activity for more than two years is a dead site to me). There is a lot of work for this site to correct the errors it has created for itself in the rush to go public.

I commend the site for what it wants to accomplish, but it did not do its homework before exposing its flaws to the public. Many of the errors will probably remain uncorrected while the site tries to get the latest information on line. Yes, we all make mistakes and live to regret proper prior planning and this site will have a lot of work to do to become the source for all that is diabetes.

Until some of the misinformation and errors are corrected, I will sit on the sidelines and wait before joining. I like the concept, but not the product that is now available for public consumption.

Here's hoping that this site is able to fulfill it mission and be the one source for diabetes - there is a need for this.

Types of Service Dogs

This is off the topic of diabetes, but necessary to be grounded in the subject of assistance/service dogs of which diabetes service dogs are an integral part.

Assistance Dogs International Inc. (ADI) uses a simplified definition, listing guide dogs for the sight impaired, hearing dogs for the hearing impaired and service dogs for other disabilities.  While guide dogs have a 70-year history and hearing dogs a shorter history, other service dogs are a recent development and have not gained the recognition in numbers to be in a class by themselves.

Please take time to browse their complete site.  It has much valuable information for determining whether you are being given the correct guidelines for training and the essentials for measuring the training your dog needs to be an excellent assistance/service dog.

Now, service dogs for other disabilities will take up the rest of the discussion.  There needs to be a list of these service dog types for medical or health related disabilities.  Standards may be developed for all these types or for each type of service dog.  Service dogs for disabilities are covered by Americans with Disabilities Act (ADA).

Please note that Therapy Dogs, Search & Rescue Dogs, Forensic Dogs, Police K-9's, Military Working Dogs and other types of working dogs are NOT Service Dogs.  This may be what ADI is referring to for facility and therapy dogs for which currently do not have standards established.  

Liz Norris of Pawsabilities Unleased has a list of eight types and some of the tasks they can be trained to accomplish.  The US Service Dog Registry lists 13 types of service dogs in addition to guide and hearing.  Not mentioned in either list is service dogs trained for cancer, strokes, and migraines.  More types are being added regularly and many service dogs are trained for multiple disorders in their human partners.

The latest type of service dogs added is for soldiers suffering from post-traumatic stress disorder (PTSD).  This project is part of a study funded entirely but the Department of Defense and put service dogs with 10 soldiers.  The other type recently added is a service dog for autonomic neuropathy.  Autonomic neuropathy is a disease that damages the autonomic nervous system, a branch of the central nervous that helps people adapt to changes in their environment, according to the American Heart Association. 

Today only 0.9% of persons with disabilities have service dog partners.  This means that there are approximately 15,000 service dogs across the U.S.  These dogs have a significant influence on their human partners' lives and are able to function more independently with the help of their canine partners.