Sunday, March 27, 2011

Breaking the News of Alzheimer's Diagnosis Part 1

I remember being diagnosed with some scary things in the past.  I recall walking out of the doctor's office and sitting in my car in the silence thinking to myself... how on earth am I going to tell my family? my friends?  I'm unlucky enough to have gotten more than one of these diagnoses and having this experience more than once as a result.

I am no expert on how to tell people about an illness, especially the scary ones.  In fact, I've not been particularly good at it in the past.  Along the way I have learned a few things I'd like to share with my Alzheimer's Disease Health Activist friends and I hope they will let me know what they think....

I think the most important thing to do first is to ask yourself some questions that may help you.  Some examples might be:

  1. Who do I want to tell?  Do I want to tell family? friend? co-workers?  the person I'm dating?  neighbors? a church leader/pastor?
  2. Why do I want to tell them?  Am I looking for support? assistance? to explain recent changes they may have noticed?ask for prayer? ask for privacy?
  3. What do I want them to know and understand?  How much do I want to tell them in the beginning?  What is this disease?  How does this affect me personally?  How unpredictable it can be and how I will change with it?  It's not contagious?  What am I doing for treatment?  That it's not something else?  How they can help me?  What not to do for me?
  4. What is the very best way to tell them?  With a pamphlet, a phone call or face to face?  By reading a book or website about your condition together? By going to an educational class or support group together?
  5. What kind of a response am I expecting?Shock or silence might mean it's difficult for people to respond to you right away, but shouldn't be misinterpreted as judgment or a lack of compassion.  Be ready to give them some time to absorb what you've told them. Fear or tears may make it necessary for you to comfort your loved one just when you are needing comfort yourself.  Hugs may hide the questions and worry they have.  Disbelief is a normal response when someone doesn't understand a disease or what your experience has been like.  Questions are healthy and are best answered as they come up.  Telling your loved one that you want them to ask you questions any time and you'll sit down with them to explain the answers is often helpful.  Stories about others with your disease and suggestions they might give you are a normal part of your loved one's challenge of recognizing what is happening to you.  It is also a way for them to show you they care about you and are trying to help, even when the stories aren't especially helpful.  Offers of assistance may be the only way they know to help you and show you that they care about you. 
  6. Am I ready to do this right now?Most people will not know how to react to a diagnosis and will take their cues from you.  Verbal and non-verbal cues are really important to give them when you talk to them about your illness.  Maybe you don't want to talk about the illness yet, but just wish for them to be aware of the diagnosis.  Telling them this will be important for both your comfort.  Perhaps you want them to question you - this too is important to tell them.  
Alzheimer's Disease is a little different than other chronic illnesses, although these questions pertain to them as well.  The Alzheimer's patient may want to prepare themselves with something in writing that will help them remember what they want to say when they talk about their diagnosis.  Sometimes having a friend to help you might be helpful too.  The impact of two or more talking about the disease is much greater than a single person alone and who may be vulnerable to forgetting much of what they want to say.

How did you as a patient or caretaker handle telling about an Alzheimer's Disease diagnosis?  Did you handle it differently for AD than you might have handled it for another disease or disorder?  If so, why do you think it was important to do that?

As a chronic illness patient, I find myself constantly having to tell someone about my health issues.  Yes, it gets old and can be frustrating at times.  I do tire of the constant suggestions and stories of others that may or may not apply.  I also acknowledge that this is an important part of living with the disease.  If I - the patient - am not motivated enough to educate those around me about what is happening to me, then who else will be?

Saturday, March 26, 2011

Gender Bending Chemicals and Alzheimer's Disease

BPA is a chemical found in clear plastics that act like estrogen in our bodies.  Not only can they cause breast development and other feminizing symptoms in men, but apparently they can be involved in the neurological brain changes that may result in Alzheimer's Disease as well.

It seems research was done on monkey brains which closely resemble our human brains.  The monkeys were injected with the same amount of BPA as is currently allowed in the US.  After a while their brains were examined to see what the effects were.  Researchers found alarming changes in the synapses of their brains.  Their brains had been damaged.

Synapses are the breaks between the neurons in our brains.  The electrical impulse generated must jump across from one neuron to the next in order for the brain to function properly.  Without the ability for the electricity to jump from one neuron to another, this communication cannot occur.  It is like cutting a fiberoptic phone cable.  When that happens you can no longer talk to the neighbor next door.  In the monkeys treated with BPA, these synapses were no longer functioning properly.

BPA has been a part of our society for decades, and 98% of those people tested for it have it in their bloodstreams.  The longer it is in our society, the more we seem to become dependent on the plastics that carry it.  It is in virtually everything from soda cans and the plastic bags used to wrap store products, to the pajamas our children wear.  Levels are rarely tested in humans, but when they are they are frequently elevated - even in the umbilical cord blood of babies.

BPA is continually leached from these plastics that carry them.  This is unfortunately quite normal.  When these plastics are heated or cooled, the amount of BPA leached from them increases, sometimes at an alarming rate.

Even so called BPA Free products are leaching the chemical!  How can this be?!

When tested, 70% of plastic products tested showed estrogen mimicking activity.  This number jumped to 95% when the plastics were treated like they normally would in the real world with dishwashing and microwaving.  Which were the 5% that tested free of BPA?  We'll never know because labeling laws don't require companies to tell us this information.

There are many, many studies linking even extremely low exposure to BPA to damage, yet we continue to use it.  In 2010 Canada labeled BPA as a toxic compound.  We in the US are addicted to our cheap plastics, and one can only wonder how long it will take us to finally acknowledge the harm BPA is doing to our society and label it as toxic, let alone ban it.

If BPA is linked to Alzheimer's as these studies seem to indicate, might this be the reason for the dramatic rise in the incidence of Alzheimer's? 

BPA exposure is largely controllable.   We can eliminate BPA.  But BPA containing plastics are cheap and our society is addicted to them.  Can you imagine a world without plastic?

Our household has gone a long way toward eliminating these damaging chemicals by eliminating as much plastic from our lives as we can.  Food storage is glass.  Refrigerator storage is glass.  We buy non-processed food that needs no packaging.  I TRY to buy soda in glass bottles as well as the processed or pre-cooked food (like spaghetti sauce) in glass as possible.  I hope to do more canning this summer/fall as well, so that will hopefully help to eliminate the need for tinned foods that are lined with harmful BPA containing plastic.

What other things do you think we could do to help eliminate plastic from our lives?

Have your Alzheimer's Disease communities discussed BPA and its toxic links to this dread disease?  What are they saying?  Do you know more about BPA and AD that you could share here?  Feel free to include links so we can pass this information on to our favorite AD communities too!

Emily Frank MD
Dr Mercola

Comment by Alicia C. Staley on March 29, 2011 at 2:20pm
Thanks for sharing this information.  This is a very important topic for many health communities, including the breast cancer community.  I will share this information with those communities as well.

BPA seems so harmful, yet plastics with BPA continue to be made and sold.  I wish there was a better way to regulate the use of BPA. For me, I try to limit my use of all plastics, and choose to buy juices and milk in glass whenever possible.

Thanks for the information about the possible link between BPA and AD as well!

Comment by mandy on March 30, 2011 at 5:40pm
What an important topic, Ellen! I definitely knew about the issues with BPA, but had no idea it was linked to AD!
I actually just came across this article by Fast Company with six steps to avoiding BPA in your daily life: -- I really like how they qualified each step with its difficulty level. It's not easy, but every inch counts!

Thanks for the reminder!
Comment by Ellen S on March 31, 2011 at 10:28am
Alicia, I wish I would have thought to tag this for the breast cancer community as well! I'm really glad you found it useful and hope you get a chance to share it there too. Really I think these chemicals apply to us all! I am frankly appalled that there is no way for us to get away from them, and can't help but wonder if these types of chemicals aren't the reason for so many of the "new"problems we are having with so many of the diseases that affect us now that didn't seem to be so much of a problem 100 years ago. I too try using glass whwnever possible, but honestly - how are we to know what our food is exposed to during initial handling, cooking etc before it ever gets to the packaging stage? Of course there is the growing stage too! I wish these chemicals were outlawed to be truthful, but our society s addicted to convenience, speed and ease that plastics have brought us.

If you decide to write anything to the bc community about this, I hope you'll give us a link here. I would personally love to see what they are saying!
Comment by Ellen S on March 31, 2011 at 10:38am
Mandy, Thank you for an excellent article on ways we can try to eliminate BPA from our diets. So much of it made common sense. Some of it sounded nearly impossible for the average family. One of the thoughts I had going thru my brain while reading it was... People are going to ignore this because of the cost to eat and prepare food in this way. My take on it is this... How expensive is health care? Prevention of illness will outweigh that cost any day of the week.

Why Take Potassiuim Iodide in a Nuclear Crisis?

This post will address I-131, Potassium Iodide and the pros and cons of its use during the current Japanese nuclear crisis.

To understand this question, you first must understand the basics of thyroid function. 

The thyroid is a gland that secretes hormones responsible for the metabolism of every cell in your body.  This gland utilizes Iodine to make these hormones.  The two main thyroid hormones are called T4 and T3.  The numbers 3 and 4 indicate how many molecules of iodine the thyroid has attached to create the hormone.  T4 is storage hormone - the body can't use it with 4 molecules of iodine attached, it must convert it to T3 when needed before the body can use the hormone.

If your thyroid is an engine, Iodine is the fuel.

Potassium Iodide is a form of iodine that the thyroid uses for fuel to make T4 and T3.

The body needs a precise amount of iodine at any given time.  Excess iodine is flushed out of the body when the thyroid and the body are working properly.  Sometimes the thyroid doesn't work properly.  If a person is only taking in an appropriate amount of iodine in each day, they may not realize they have a thyroid problem.

The thyroid has an 'emergency overload system' that tries to prevent an accidental overdose of T4 and T3 because you might have eaten too much iodine.  If you consume lots of iodine, the thyroid senses this and shuts down.  It stops using iodine and stops producing thyroid hormones.  This process is not immediate - it takes some time for the thyroid to sense the extreme overload and shut itself down.

About Radiation risk:

The nuclear radiation in Japan that everyone is talking about right now is in the form of I-131.  In this case, the I stands for Iodine.  We are talking about radioactive iodine - the same substance used in thyroid cancer patients and Graves' Disease patients to destroy (ablate) their thyroid tissue and tumors.  

Radioactive substances are measured in part by their "half-life".  Their half life is the time of period it takes for half of the radiation to dissipate.  The half life for I-131 is about 8 days.  This means if you are exposed to 30 millirems of I-131, in about 8 days your radiation levels will be about 15.  8 days later it will be about 7.5.  8 days later it will be about 3.75 and so on....  Millirems is an older term that is being replaced in many countries by the term Millisieverts.  10 Millirems = .1 Millisieverts.

To give you an idea of how many MIllisieverts might be dangerous, let me give you some examples:

A chest X-Ray exposes you to about .1 Millisieverts
A CT of the abdomen is about 10 MIllisieverts
The average exposure of evacuees of the Chernobyl disaster was about 31 Millisieverts
The spike noted in Japan was about 400 Millisieverts
Radiation sickness begins at about 1 Sievert (1000 Millisieverts)

This said, there is much evidence that there is increased danger of cancer to those who undergo x-ray imaging and CT scans.  Chernobyl victims have an increased history of cancer too.

Taking too much potassium iodide with a normal acting thyroid can cause a condition called Thyrotoxicosis.  This means the thyroid pumps out too much thyroid hormone creating an acute hypERthyroid state that can be dangerous, or even fatal.  In those with thyroid disease - either diagnosed or undiagnosed - the chances of thyroid storm or thyroid toxicosis is greatly increased.  For some diseases such as Graves' Disease or for those with "hot" thyroid nodules it is a virtual surety.

Why do we take potassium iodide in a nuclear crisis?

Our thyroids are built to absorb iodine and use it to produce T4 and T3.  Those with poor diets are often slightly deficient in iodine.  This makes our thyroids slightly "hungry" for iodine.  When iodine is absorbed in any form ( the body doesn't care what form you take it) the thyroid acts like a sponge and tries to absorb it all.  When that happens, it turns it into T4 and T3 and those hormones end up in the bloodstream.

I-131 damages thyroid tissues.  Unfortunately it also damages other tissues in the body as well, but it is especially good at killing the thyroid.  This is why it is used in Graves' and cancer patients.

Potassium Iodide (and any other halide) can block I-131 from attaching itself to your thyroid.  It helps to prevent thyroid damage from the radioactive iodine because the I-131 will then be excreted out of the body.  It is vitally important that potassium iodide (KI) is taken only immediately before exposure to I-131.  KI will stay in your system about 24 - 72 hrs after swallowing it.   KI may help to protect your thyroid from the damage of I-131, but it does nothing to protect the rest of your body from I-131 damage or damage by other types of radioactive isotopes.

Here are some of the possible implications of KI use:

++ becoming hypERthyroid
++ unmasking a dangerous thyroid condition you didn't know you had
++ hypOthyroidism caused when the thyroid shuts itself off

Both hypERthyroidism and hypOthyroidism left untreated can be fatal, so this is quite serious. 

There is much controversy about the stockpiling many people are doing with potassium iodide.  Right now experts tell us this is really unnecessary in the United States, but probably very useful in Japan where the risk from radioactive I-131 is measurable.  Those living within a certain range of nuclear plants in the United States are already provided with a supply of potassium iodide for their protection should a nuclear incident occur.  These folks should keep this on hand, but it is otherwise probably unnecessary for others to do so.

It should be noted that the iodine in table salt is also protective for your thyroid, but it is unlikely you will be able to consume the amount of iodine through that route without doing other damage to your system by way of the salt the iodine is attached to.  Consuming too much salt is dangerous and should be avoided.

If you are deficient in iodine, making sure your body is tested and being fed the appropriate amount of this trace mineral is helpful for your health overall, taking into consideration of course that you have been cleared from autoimmune and other thyroid problems that could potentially lead to hyperthyroid toxicosis or storm which is very damaging and could even be fatal.

There is a much greater damage in the United States from bromide and fluoride (both halides and from the same family as iodine) blocking the body's use of iodine than a risk of radioactive I-131 hitting our shores from Japan.  If you are concerned about your thyroid and your health from a very realistic standpoint, testing for fluoride and bromide levels should be a part of the testing you do to find your iodine and thyroid status before considering the supplementation of potassium iodide or other form of iodine for any reason.

I have written frequently about autoimmune thyroid disease here at WEGO Health and a quick search through the archives will reveal many other articles as well.  Autoimmunity of the thyroid is highly under-diagnosed as is iodine deficiency, so finding a doctor who specializes in thyroid care is tantamount to receiving not only a proper diagnosis but also appropriate treatment for this important condition.

 JordanB on March 28, 2011 at 2:41pm
While I agree that this is a real issue in the areas directly affected by the recent (and ongoing) nuclear disaster, in the US it is just the latest irrational scare fad. In the last few weeks I've seen a number of stories on the AP wire and in other news outlets on iodine pills and on how at risk people are in the US. Nuclear power is still the sector of the energy industry with by far the fewest deaths associated (you run an exponentially greater risk of dying from being struck by lightning). It's just fascinating to see the hype-machine behind this as the dozens of articles dissecting risk of exposure to the US all invariably seem to wind their conclusion to a fairly unqualified "no".

Still, thank you Ellen, it's good to read an article which goes some towards quelling the cycle of irrational public response and action. I won't go running out for the iodine pills any time sooner than I'll start practicing "ducking and covering" under my desk.
Comment by Ellen S on March 28, 2011 at 4:05pm
Jordan, I'm glad you see the direction I was subtly heading with this.  It is not a bad idea to have potassium iodide tablets on hand if you live near a nuclear facility, but as I stated in the article, those at risk are provided those when the plant goes live.  They know who they are.  As far as stockpiling them, I do believe in preparation, but it's unfortunate that most people have gone from wanting to be properly prepared for a disaster to obsessed with being over-prepared for everything under the sun.   Potassium iodide can be dangerous - very dangerous - if not used appropriately.  If folks are going to keep it on hand for whatever reason they choose, they need to be educated about it...
Comment by Joan Penfold on March 30, 2011 at 10:49am
I live within 30 miles from a Nuclear Power Plant and it's alarming system is going off as it is detecting the radiation from Japan.  I actually find it comforting that it can pick up such a small amount of radiation so if it ever has a problem we will know early enough!
I try to speak with my son regarding the amounts being found in the US as he is a Nuke in the navy and I get complete silence and he either can't or wont answer me.  That does bother me a little but I think if it was a real issue he would somehow let me know.
Comment by Ellen S on March 31, 2011 at 10:43am
Joan, AppRoximately where in the US are you currently living?
Comment by Joan Penfold on March 31, 2011 at 10:58am
I am in Florida near the Crystal River Nuclear Power Plant.
Comment by Ellen S on March 31, 2011 at 11:10am
Joan, I've been there! Beautiful spot to call home. I didn't know that anybody in the US was detecting anything (nuclear plant wise anyway). I'm on the west coast right now hoping all will remain okay here as the Japanese struggle so in their country. As an RAI patient, I don't think any I-131 is good and sure wish it wasn't a worry for anyone. With the high dose I got as treatment before, I'm sure not excited about being exposed to more... For any reason or in any amount.
Comment by Joan Penfold on March 31, 2011 at 11:19am
The leaks over there are alot worse as there are more meltdowns Ellen in more reactors and yes it has been detected over there before here!  Hawaii really has high numbers but they are so close. I know that about 3 plants with newer monitoring devices like here have been alarming.  Where are you on the west coast?  I don't like this whole thing at it is the object of many nightmares throughout my life and one of my biggest fears, and yet I moved near a plant, go figure!
Japan has 17 plants, with a majority on the water. They are frantically trying to update now before they have another Tsunami.  They continue to have quakes, this week another at 6.5 and it is all unstable over there.  My son does have some friends that were sent there and I pray he stays where he is at, Charleston SC, teaching at Navy Nuke school!
Sigh, it is a worry but life must go on, but have had to increase my Xanax here and there!
Comment by Joan Penfold on March 31, 2011 at 5:59pm
Comment by Ellen S on April 1, 2011 at 10:11am
Joan, I saw a story on this tonight. Most are downplaying it, which I have mixed feelings about. You see they discuss I-131 and compare it to the radiation from the sun. Yes the body gets radiation from the sun, but that is body-wide. I-131 concentrates eventually in the thyroid which is a very tiny gland that is easily damaged. I haven't had a chance yet to look up the numbers, but if you consider the fact that damaged thyroids and those that are malfunctioning are already terribly prevalent, one must wonder what this additional damage, no matter how small, might eventually result in. How long will milk be tainted? Days? Years? If it is in milk, it will also be in meat and plantstuffs. Thyroid patients already have difficulty getting a diagnosis from doctors who are lacking in up to date rudimentary knowledge in how to diagnose and treat these patients. I suppose the good news might be that if more cases of thyroid disease or cancer become a problem that these doctors may be forced to become better educated and the result may be better treatment for all. As for me, I will not downplay even a little radiation because ft increases the load and burden of the radiation we already are exposed to. For those like me who have already had a large load due to medical treatment or diagnosis, every little bit counts... especially if we hope to live many years into the future... especially when we really are not sure what that future may bring. A reason to panic? Probably not, but certainly at least a reason for caution and to educate ourselves and our communities. I wish I could give a snapshot to what thyroid communities - especially Graves' communities are discussing from day to day re: this type of radiation...
Comment by Joan Penfold on April 1, 2011 at 11:12am
I  know they are down playing all of this.  Many years ago I was diagnosed with Hoshimotos but now test negative for any Thyroid issues.  Thank GOD as I have enough to deal with!
I have probably had 6 Cat Scans in the last year and cant tell you how many in the last 5 years and that is more radiation than I want to be exposed to and now this? I think it will be getting a lot worse as the reactors meltdown more as they do not have control of it at all.  We should all walk around with dosimeters on! I think we would me amazed.
I think back to my grandmother years ago when there was not iodized salt and she passed with a huge goiter finally choking her to death.  Makes me wonder, with genetics, how I will be affected. I am told several of my diseases are hereditary but we can't seem to trace back.
I think if I try to discuss this with my Drs I would be thought of as paranoid! I already drill them but I am going to drill them again and they will have to deal with it as the radiation levels are only going to increase.  FYI the beef in Japan is already affected, the nearby sea water is radiated so it is affecting fish, will that travel to our sea water? There is so much uncertainty.
I am wondering what happened with all the radiation from chernobyl as I do not remember the hype, but then again I was much longer and thought I was invincible!
I can ramble on but will save for further discussion.

Comment by Joan Penfold on April 1, 2011 at 11:13am
Darn I cant go back and edit. My eyes are barely open this morning as I had a bad night. Hope you can read between the mistakes!
Comment by Ellen S on April 1, 2011 at 6:59pm
Joan, the good news is that I-131 has a short half life.  This means that it doesn't remain super active for a long period of time.  In the case of I-131 the half life is about 8 days.  This means in reality the greater danger to the food supply for right now is the effects of exposure to I-131 which is either prolonged or too high.  I-131 does cause cancer and it does cause thyroid damage and can trigger autoimmune disease in some people.  Additionally, those with Graves' Disease may suffer terribly with too much iodine of any kind including I-131 as this can cause a disease flare that can be very serious.  For anything or anyone exposed to high levels of I-131, they will remain carriers of this radiation for longer periods of time, potentially exposing others to the radioactivity which can damage them as well.  To be honest with you, there is probably much greater danger form those who have undergone I-131 medical treatments and are out wandering around the public - sitting in airplane seats next to our children or pregnant moms, standing next to us in the grocery store or even contaminating bed linens at hotels.  We don't know when we come into contact with these folks and are exposed.  Animals are kept in strict quarantine for a minimum of a month when they undergo the same treatment.  People are not.

Sunday, March 20, 2011

Alzheimer's Disease, Dystonia and Brain Donation

There are many things we can do to help raise awareness, raise funds, even help others with Alzheimer's Disease.  One of the most valuable, and thoughtful things any of us can do regardless if we suffer Alzheimer's Disease or are healthy, is to donate our brain after we die.  When it comes to neurological disease, our brains hold the key.

I wrote a passionate post about brain donation facts and links about a year ago I hope you will take a look at.  I knew about organ donation, but like many of the people who replied to the original post, I had no idea you could donate your brain.  I know how valuable my brain is to me now, but to think it had value after I died kind of got me all warm and tingly inside :)

Tissue banks have been set up with many Alzheimer's research programs throughout the US.  I'm sure if we're doing them here, there are banks in your country who need your donation too.  To find a list you might try searching "Alzheimer's tissue banks" and the name of your country.

The most important thing to be aware of if you're considering brain donation is to plan ahead.  The brain is very fragile when you're alive, but it's even more fragile after you've died.  Certain drugs or therapies may damage it.  It begins to break down very, very quickly post mortem, so everything needs to be in place before your demise.  The article above gives you the simple instructions.  Researchers need brains that are young and old, diseased and healthy.  Without all these different types of healthy and diseased brains, they have nothing for comparison.

If someone in your family wants to donate their brain too, it would be good to have a discussion early enough that you can decide together where you would like both of your brains to go.  Because many neurological diseases have a genetic component, having brains from multiple generations to study is sometimes extremely valuable to scientists.  This is something often overlooked by donors and their families however.

If you choose to donate your brain it will be autopsied as a free part of the process and your family will receive notification of anything that is found at that time.  This may be very valuable information for your children or other relatives.  Knowing they may carry a genetic (or other) preponderance for a particular disease gives them the opportunity to change their lifestyle in such a way to minimize the chance or the effects of that disease.  That said, if you don't want to know the results, that is always your option as well.

There is a long list of neurological disease foundations looking and hoping for brain donations.  There are also many mental illness foundations looking for brain donations, so be aware that you may have multiple choices where you would like your or your loved one's brain to go.

Frequent readers here are aware that I suffer several neurological diseases.  Some rare, some all too common.  Either way, this really hits home for me because for every one of the diseases I suffer, there are many, many others.  My brain can't go to them  all, but maybe I can make a little bit of a difference for a disease that is important to me personally.

I will be asking my family to donate their brains too.  They have already let us know they want to be cremated after death, so I'm hoping this might be a viable option for them.

What a gift for the future...

Alzheimer's tissue bank links
Alphabetical listing by state - names and locations only
Alphabetical listing - repositories/contact information

Multiple Sclerosis tissue bank links
National MS Society list
How to donate to an MS tissue bank

Dystonia tissue bank links
Dystonia brochure
(no public list available)

Migraines, Strokes, Depression and Dementia - Oh My... Multiple Sclerosis?

What do all of these things have in common (besides the brain)?  A genetic neurologic disorder often misdiagnosed as Multiple Sclerosis - CADASIL.

C - cerebral
A - autosomal
D - dominant
A - arteriopathy
S - (with) subcortical
I - infarcts
L - (and) leukoencephalopathy (destruction of white matter in the brain)

CADASIL is found in families, and it is a serious neurologic disease to have.  It is the most common form of hereditary stroke disorder, although it is still considered to be a rare disease.

It strikes when the patient is young - typically in the mid-thirties - often beginning as Migraine headaches (40%) usually with aura which may mimic TIA,  before progressing to depression, strokes and mini-strokes, apathy, motor function problems, and finally, dementia.  Usually by age 65 dementia has set in and other symptoms are quite noticeable.  Symptoms and the time of onset can vary widely however.  The neurological problems associated with CADASIL stem from vascular thickening of the small blood vessels in the white matter of the brain due to abnormal muscle cells in those vessels, which occludes bloodflow to the brain.  Due to the granulation deposits within the walls of small arterial vessels as well as degeneration of vascular smooth muscle cells which cause the narrowing of arteries, the brain essentially starves. Later on, other tissues in the body are damaged as well.  CADASIL was portrayed in a 2004 movie called "The Sea Inside".

Other symptoms of CADASIL include:

  • lesions in white matter
  • cognitive deterioration
  • seizures
  • vision problems
  • psychiatric problems
  • speech defects

There are more than 100 mutations that can cause CADASIL, but all cause a change in the amino acid of the Notch 3 receptor.  The gene associated with CADASIL is called NOTCH 3 and resides on chromosome 19.  This gene is inherited in a dominant fashion.  This means that if you have one of the genes, you will get the disease.  50% of the children of a carrier can be expected to be affected as well.

Unfortunately, there is a high affinity for misdiagnosis of CADASIL in patients and their relatives.  Unfortunately, many patients are misdiagnosed with Multiple Sclerosis which can appear in testing and imaging the same as CADASIL.   Both diseases usually begin in young adults with similar symptoms.

Testing for CADASIL includes genetic testing, skin biopsy which looks for granulation deposits but may also be negative, MRI which alone is not sufficient to diagnose this disease.

Because there are no treatments yet effective for CADASIL, it was hoped that an Alzheimer's Disease drug called Aricept might help these patients.  It was from a larger study on this medication that this smaller study (indicating MS is a frequent misdiagnosis) was a part of. Since there is no treatment, supportive care is given and can include Migraine medications (taking care not to use medications in the list below), depression medications, and a daily aspirin to help reduce the chance of stroke.  Lifestyle changes include stopping smoking which can exacerbate the condition.

Some medications should be avoided in CADASIL patients, and knowing if you have the genetic mutation is important as these drugs may be prescribed for symptoms the disease causes yet make the situation even worse.  These include:

++ Thrombolyisis & anticoagulant treatments like Warfarin used in TPA (Hughes Disease) and other diseases
++ Arteriography procedures
++ Vasoconstricting medicines (ergotamines and Triptans used as Migraine abortives)
++ products aimed at unblocking blood vessels (they increase the risk of a hemorrhage).
++ Warfarin, Coumadin
++ Contraceptive pills are a risk factor. It's recommended to use less than 50 mcgs of estrogen in birth control method.

Unfortuantely, Aricept was not found to affect CADASIL in any manner which was disappointing.  The authors of the study do state that groundwork in this field is "exploding" and great leaps toward understanding CADASIL have been made.  Before good treatments are developed, a disease must first be understood enough to develop new treatments.  From this perspective, there is great hope down the road for patients and their families.

Other studies are being done currently and include looking at an overreaction to hormones that can affect poor blood supply. Another was published that looked at CADASIL's increased vasoreactivity to L-argninine in the brain, and hopes are high that understanding this reactivity may lead to therapies in the future.

If you have a diagnosis of CADASIL, please consider donating your brain to the CADASIL Tissue Bank for research after your death.  There is a shortage of this tissue for researchers to use to help others in the future.   Researchers in fact need healthy brains for use in research as well, so anyone can donate and help the cause.  :)

For more in-depth reading on this important disease:
CADASIL Foundation
National Institute of Neurological Disorders and Stroke
Medical News Today

If this post was informative or helpful, please let me know by clicking the buttons below
Comment by Anne on April 8, 2011 at 12:44pm
I think this is a great article.   I have family members with CADASIL, and know all too well the debilitating progression of the disease.  Have you written to the National Stroke Association, National Multiple Sclerosis Society, American Heart Association, CADASIL Support Group on Facebook, Or any other organizations?   There are CADASIL Support Group members on Facebook that are on a mission to bring awareness about CADASIL to the general population.   The group is open to anyone intersted in CADASIL.   Please join us.
Comment by Anne on April 19, 2011 at 6:00pm
The diagnosis of MS can be a complex process. Before confirming an MS diagnosis, the doctor must rule out any other conditions, such as lyme disease, lupus, NMO and ADEM.
Comment by Anne on April 19, 2011 at 8:54pm
Comment by Anne on April 19, 2011 at 9:03pm
Christa started a non-profit organization to bring awareness to strokes in young people.

Meet Christa

Christa Orsino-Heck: Founder and Stroke Survivor
On November 14, 2003; only 39, I parked.  Alone, slumped over the center console of my car.  No voice to scream, no hand to hold, no tears to cry.  Thoughts & memories of family rushing through my head; fear, sorow, regret . . . Stroke.
I drive to explore, to be independent, to face challenges with courage, and to overcome obstacles with ingenuity and creativity.  I am strong, but I had no idea how strong until I shifted out of park. It takes time; time to accept and adjust to the life changes that a stroke can inflict. Time; time to let go of the question, “Was it luck or a miracle I survived?”  In time you learn to let go of the “why” and accept it was fate; fate that brought me here.
Fate will not hinder which road I travel, fate empowers.  This fate is my evolving map.  This fate presents connections to avenues traveled by those of similar circumstance, searching for answers, seeking to connect, striving to lay a new path.  I am empowered along this drive, from the connections I know I will make along this journey.
So when you’re ready, shift out of park, and come take a drive with me…join our community that offers support to younger stroke survivors.
You are not alone.

Thursday, March 17, 2011

Turn Off Your Alzheimer's Genes

I've asked a question in a few Alzheimer's Disease communities that has really gotten some very mixed responses:

"If you carry the Alzheimer's Gene, would you want to know?"

I was surprised by the number of negative responses I got.

Followers of my blog know that I did choose to have the Alzheimer's Disease genetic testing.  Of all the tests that were done on my DNA, this was the one that scared me the most.  However, my take on genetics and disease is: just because you have the genes that predispose you for a disease, doesn't mean it is going to be your fate.  In fact, knowing you are predisposed to certain diseases can do many positive things.  Among them:

++ You can put your doctor and family on the alert so you will both be more mindful of subtle changes as they may happen.

++ You can try to change your lifestyle to maximize the chance that these genes won't come into play.

When I mentioned this in one group, my statement was met with some skepticism.  Most people don't understand that your genes are only part of your story.  Sometimes they are only a very small part, and we can help to control them!

Recent research and an article by Dr Amen in California gives more details to prove this important point:

Your genes are not your fate.

In this case, Dr Amen explains that a specific gene called E4 is the one that scientists have linked to Alzheimer's.  About 15% of the population carry at least one of these genes which can act to increase your risk of Alzheimer's Disease.  The preliminary study Dr Amen cites showed that diet may enable you to turn off your Alzheimer's gene! 

Wow!  This is incredible stuff because diet is something that is very much under our control!

In this study mice were given one of 3 different diets.  One was a "normal" diet.  One was a "bad" diet high in cholesterol.  Another was a diet high in Omega 3 fatty acids and low in cholesterol.

The results showed that a diet high in Omega 3 fatty acids like those found in fish and krill oils along with low cholesterol acted to switch off the E4 gene in the study mice!

I would never want to push testing onto anyone - ever.  This is a very personal choice that each of us can make individually.  Our doctors rarely offer it to us, so if we are interested in it, it's going to require taking action by first beginning a conversation with them.  It's not likely they will tell you not to be tested, but they may be able to give you some food for thought to help you make the decision on your own.  You can order this type of testing on your own through any of a number of companies, some of which can be easily found online.  These companies offer genetic counseling as a part of the service you pay for.

The take-away I want everyone to be aware of is this:

Our genes are not our destiny.  We can influence them, but to do that we must take action.  Sitting and waiting for it to either hit us or not does nothing to help ourselves.

You don't want Alzheimer's to hit you?  Then take action now by optimizing your health today.  Eat right and treat your body like the precious gift that it is.  No, this guarantees nothing.  But it does stack the deck in our favor, and I for one will take whatever advantages I can get!

Will you?

I'm curious to know, did this research change how you feel about testing for Alzheimer's disease genes?  Does it change how you feel about altering your life to maximize the potential to turn off bad genes?  Will you change your life to reduce the chances you will receive an Alzheimer's diagnosis?

Monday, March 14, 2011

Ruling Out B12 Deficiency Memory Loss

B12 deficiency is one of the most frequently missed diagnoses when neurological problems such as memory loss begins to appear.  There are many reasons why...

  1. B12 deficiency can be present without frank anemia, yet many doctors do not know nor acknowledge this.
  2. B12 is not always absorbed properly, even when given orally in massive doses.  Injections may be necessary.
  3. B12 deficiency is frequently overlooked and not tested, even when symptoms of deficiency are present.
  4. The wrong tests are often use to detect B12 deficiency.  The best tests for detection are: Methylmalonic acid, and Homocysteine.  The B12 test is considered an unreliable indicator of B12 status in any one individual.
  5. B12 deficiency can be hidden when the patient mistakenly supplements folic acid or a multi-vitamin with folic acid as a component.
  6. When testing is done to find B12 problems, those tests will often come back without flags even though the patient is suffering deficiency serious enough to cause permanent neurologic damage.
  7. "Normal" ranges for direct B12 testing reflect the point at which anemia becomes a problem, but by the time the patient is at that low level, neurological damage has likely already occurred. 
  8. Doctors often assume that if B12 deficiency is a problem, eventually the patient will become anemic and treatment can be started at that time.  In cases of malabsorption this is not always the case, and patients can go for years suffering neurologic damage and not be aware of it.
  9. Medications frequently taken by adults such as stomach preparations can cause a depletion of B12 because they stop the excretion of a special stomach acid called Intrinsic Factor that is necessary to carry the B12 from the digestive system into the blood stream.  Doctors often don't know about this correlation, and patients often forget to tell their doctors they take these OTC meds.
B12 is vital to the nervous system.  Without enough B12, the myelin sheath that surrounds our nerves cannot heal themselves nor regenerate, and damage eventually occurs. As a result, B12 deficiency can also masquerade as Multiple Sclerosis.

B12 is integral in something called the Methylation Process in which other metabolites are formed which are necessary for our health.  If you are an Alzheimer's or Dementia Health Activist, you should be very familiar with the methylation process, how it works and what can happen when things go wrong with it, because it is intimately tied to Alzheimer's and dementias as well as our neurologic health.  Without these metabolites, our bodies become severely unbalanced and our overall health suffers. The methylation process is also one of the ways our bodies rids itself of harmful homocysteine - a dangerous inflammatory compound linked to cardiac problems and brain atrophy.

It takes years to become deficient in B12 because a great deal of it is stored within the liver and it takes a long time to deplete those stores.

Here are some interesting articles on the Methylation process and how it relates to Alzheimer's Disease:

Clinical Chemistry
Life Extension Vitamins article
Dr Ray Sahelian

My story:

I began having serious memory difficulties.  I was afraid maybe I had an early onset dementia.  I went to my doctors, but until I asked for specific testing to be done - indeed I had to insist on it - nobody knew I had a problem with my B12 status.  In fact, the neurologist I asked looked me square in the face and was angry with me, telling me "You are not deficient in anything.  I can tell just by looking at you.  If you are deficient I would know."  He agreed only to run a single test for me - the B12 test.  When it came back dismally low, I was immediately tested for the other levels  I requested, and given immediate B12 injections.  When I requested records from other doctors I'd had in the past, I found that I had been tested and diagnosed as B12 deficient for many years before anybody ever told me.

It turns out that my deficiency went on for so long that I have permanent damage to contend with every day of my life.

When I talked to my doctors about what happened to me, most shrugged their shoulders.  A couple admitted to me that they literally get almost nothing on vitamin deficiencies in medical school.  They didn't know in most cases even the tests that needed to be ordered to find them, let alone what to do if they came back bad.

I post this today as a warning to those friends of mine in the Alzheimer's Disease and Multiple Sclerosis worlds - - Get yourself and your family members tested.  Make sure your doctors use the appropriate testing methods to find a deficiency - Methylmalonic Acid and Homocysteine should always be ordered along with a B12 status test.  Check on the price of this testing as shopping around can be important.  I've paid as little as $150 for all these tests, and as much as $3000 for the very same tests.  Getting them through your doctor's office is usually the cheapest method.  The hospital lab I've found is usually the highest price.

Taking B12 injections is a very small thing.  You can get them through your doctor's office, or give them to yourself.  One of my most popular blog posts contains far more information on B12 deficiency as well as instructions and a video that tells how to give yourself injections to fix the problem.  You can find it here:  B12 Injection Basics

Saturday, March 5, 2011

Famous Celebrities with Alzheimer's Disease

Alzheimer's Disease doesn't discriminate when it attacks.  People from all walks of life are diagnosed every day.  You probably know someone personally right now who has a diagnosis of Alzheimier's.  Below you will find a list of other familiar names that may surprise you.

I wrote a post about celebrities touched by autoimmune disease, and was really surprised at how quickly it grew.  At this writing it is one of my most read posts on WEGO Health.  I wanted to do some research and see if I could do a similar post about Alzheimer's Disease.  So, here goes...

Ackerman, Bettye (actress)
Acquanetta (actress)
Adcock, Joe (baseball player)
Albertson, Mabel (actress in "Bewitched")
Andrews, Dana (actor, President of the Screen Actors Guild)
Balanchine, George (ballet choreographer)
Bell, William Joseph (creator, producer of Young and the Restless)
Bing, Sir Rudolph (opera singer(?) and Gen Manager NY Metropolitan Opera)
Bird, Billie (actress, comedienne)
Blyton, Enid (author, aka Mary Pollock)
Bouvier, Janet Lee (socialite)
Brooks, James (artist)
Bronhill, June (opera- soprano)
Bronson, Charles (actor, director)
Burrows, Abe (author, humorist)
Callahan, Audrey (Baroness)
Campbell, Carroll (Senator)
Chen, Joyce (chef)
Churchill, Winston (British Prime Minister)
Coca, Imogene (actress)
Cohen, Selma Jeanne (dance historian, teacher)
Como, Perry (singer)
Copland, Aron (jazz composer)
Cunliffe, Mitzi (sculptress)
Damita, Lily (actress)
Davis, Benjamin O Jr. (General, Air Force)
Deakin, Alfred (Prime Minister of Australia)
DeKooning, Willem (artist)
DeMille, Katherine (actress)
Doohan, James (actor, Star Trek's "Scotty")
Dorsey, Tommy (singer)
Dunn, Dorothy (primitive art professor)
Emerson, Ralph Waldo (poet/philosopher)
Falk, Peter (actor, "Columbo")
Fears, Tom (pro football player/coach)
Feraud, Louis (fashion designer)
Fitzgerald, Geraldine (actress)
Ford, Henry (car maker)
Francis, Arlene (actress, known for "What's My Line")
Frankovich, Mark (film producer)
French, John Douglas (physician)
Garber, Hope (actress/singer)
Goldwater, Barry (Senator)
Gowing, Margaret (english historian)
Graves, Robert (poet, novelist)
Hanna, William (cartoonist)
Hart, Dorothy (actress)
Hayworth, Rita (actress)
Henriquez, Raul Silva (roman catholic cardinal, human rights advocate)
Heston, Charlton (actor, activist)
Hill, Arthur (actor)
January, Lois (actress)
Kant, Immanuel (philosopher)
Kellogg, Marjorie (author)
Kelly, Dr. William (pioneering surgeon)
Keyes, Evelyn (actress "Gone With the Wind")
Kirkwood, Patricia (actress)
Koch, Howard Winchel (film director, producer)
Kramer, Joan Whitney (singer, songwriter)
La Plant, Laura (silent film actress)
Leigh, Dorian (model)
Lenchner, George (mathemetician)
Leroy, Mervyn (actor)
Likova, Eva (opera - soprano)
Lillie, Beatrice (actress)
Lord, Jack (actor, "Hawaii Five-O")
Lucculus, Lucius Licinius (Roman General)
Mannix, Toni (actress)
Mantle, Merlyn (wife of Mickey Mantle)
Marta Fernandez Miranda de Batista (First Lady of Cuba)
Maugham, W. Somerset (playwrite, novelist)
McDonald, Ross (author)
Meredith, Burgess (actor)
Millar, Kenneth (crime fiction author)
Minnelli, Vincente (film director, father of Liza Minnelli)
Morgan, Marjorie (artist)
Murdoch, Iris (author, philosopher)
Muskie, Jane (politician's wife)
O'Brien, Edmond (author)
O'Connell, Arthur (actor, "Citizen Kane")
Olmsted, Frederick Law (architect)
Owen, Marv/Mickey (baseball player)
Parks, Rosa (activist)
Patterson, Floyd (boxer)
Phillips, Mary Walker (author, artist, teacher)
Phillips, Pauline (Dear Abby founder)
Picon, Molly (actress)
Pratchett, Terry (author)
Preminger, Otto (actor, producer, director)
Puscas, Ferenc (footballer)
Quackenbush, Bill (pro hockey player)
Queen Juliana of the Netherlands (Queen)
Questel, Mae (actress, voice actress)
Ravel, Maurice (composer)
Reagan, Ronald (President)
Reeves, Mary (wife of singer Jimmy Reeves)
Ritz, Harry (performer/comedian, "The Ritz Brothers")
Robinson, Sugar Ray (boxer)
Rockwell, Norman (artist)
Rutherford, Margaret (actress)
Sadler, Joseph "Sandie" (boxer)
Sandoval, Esther (actress)
Scorsese, Catherine (actress, mother of director Martin Scorsese)
Scott, Daniel Simon (actor)
Shearer, Norma (actress)
Shriver, Robert Sargent (composer, writer about music)
Shulman, Irving (screenwriter)
Schwartz, Betty (Olympic gold medal track)
Stewart, Eleanor (actress)
Suarez, Adolfo (Spanish Prime Minister)
Swift, Jonathan (satirist)
Swift, Kay (composer)
Talbot, Nancy (founder of retail giant Talbot's)
Thayer, Lorna (actress "Five Easy Pieces")
Thatcher, Dame Margaret (British Prime Minister)
Valor, Henrietta (actress, singer)
Van Vogt, Alfred (author)
Vance, Cyrus (Secretary of State)
Vestly, Anne-Catharina (author)
Volz, Nedra (actress)
Wallace, DeWitt (Founder "Reader's Digest")
Wallis, Ruth (cabaret singer)
Welch, Harrold Bruce (businessman, father of a First Lady)
White, E.B. (author)
Wilson, Harold (British Prime Minister)
Wisdom, Norman (comedic actor)

Here is a nicely done compilation of many photos and explanations of several of the Alzheimer's Disease names you see listed here:



Like this post?  I LOVE feedback!

Wednesday, March 2, 2011

Painkiller Use Found to Cause Serious Birth Defects - Repercussions?

A recent study led by a team at the Centers for Disease Control found that women who use some opioid pain killers early in their pregnancies may be putting their unborn babies at risk for serious birth defects including heart and spinal deformities.

This news, while welcomed by the chronic pain community, will not likely be popular.  Nevertheless, I think it's vital to spread to our groups, because until now physicians have told us that these drugs have little chance of causing problems - much less than other pain medications - in unborn babies.

As a Migraineur, I used some of these drugs while pregnant.  Thank goodness my Migraine issues weren't as severe as they are now, and I didn't have to use them early in my pregnancy when the most damage seems to occur.  Instead, I was one of those unlucky women whose Migraines were triggered later on in the pregnancy, when they could suddenly turn on me mercilessly.  In those instances (and when I had kidney stones) during pregnancy, my doctors felt that giving me the medication was the safest thing for a pregnancy that was already at risk. 

There is another side of the story that makes this a hot topic today... the fact that the war on the illicit use of prescription drugs - painkillers in particular - has led to grave difficulty for honest chronic pain patients to have their pain issues appropriately treated.  We are the collateral damage in this war.  Now this study gives the powers that be more ammunition and yet another reason to consider pulling helpful drugs off the market (Darvocet and Darvon were the latest casualties in this war) leaving many in the epidemic of chronic pain patients little to nowhere to go.  

As leaders in the chronic pain community, we can help drive this problem of collateral damage - in either direction:

On one hand, by not using and protecting our medications appropriately, we give our doctors reason to think twice before giving a prescription.

On the other hand, if we are the driving forces behind warning pregnant women and those of childbearing age, perhaps we can create awareness among physicians and the powers that be that this is indeed enough of a concern for our community that we should be not only heard but respected.  They need to understand that we are on their side!

We need to create awareness not only of under-treated pain, but also of this community's resourcefulness and dedication to eliminating the illicit and improper use of these drugs that our government entities are so concerned with.  We need to be sure that we are not only advocating for the appropriate options for these drugs, but also the appropriate use by our community members.