Sunday, February 27, 2011

Multiple Sclerosis and Low Dose Naltrexone

Naltrexone is an old drug, now being used effectively in a very new and unique way.

This opiate blocker was the mainstay in drug overdose treatment 30 years ago.  When used for this purpose, Naltrexone is given in doses ranging from about 50 - 300 mgs per day, throughout the day.  Because the drug is old, the patent has long since expired.  The medication is cheap - about 50 cents per day -  so convincing pharmaceutical companies to study it for novel uses is... difficult.

Low Dose Naltrexone (LDN) is the term created by Dr Bernard Bihari - a New York neurologist who hypothesied that if high dose naltrexone (50mg - 300 mgs) would block opiate receptors throughout the body and deplete the immune system (a serious side effect of naltrexone treatment for drug addiction) as well as endorphin levels within the brain, then perhaps working with our body's natural circadian rhythm by giving a low dose of this common drug (1.5 - 4.5mgs) once at night might cause the body to rebound with an increased production of endorphins throughout the daytime. Fortunately for us, he was right.

We have known for some time that autoimmune patients typically show decreased endorphin levels, and since endorphins play a key role in the development and maintenance of the healthy immune system, perhaps if we could create that rebound effect, we might be able to heal the immune system itself.

Typically autoimmune diseases are treated by utilizing chemotherapy type agents which damage the immune system.  The hope is to damage it enough that it will not be causing excessive harm to organs and tissues of self as occurs in autoimmune disease, but not enough to leave the patient without enough immune system to survive.  This type of treatment often helps many of the symptoms of autoimmune disease, but it also hurts the immune system itself, leaving patients vulnerable to attack by other hostile invaders such as bacteria and viruses.  Sometimes, the autoimmune disease itself is so powerful, that even these toxic chemicals are not enough to keep the body from self-destruction.

Of course, then there are the side effects of the chemotherapy drugs themselves.  Even the most seriously ill autoimmune patients are sometimes seen to go off their therapy because - simply put - the treatment was worse than the disease that was already hurting or even killing them.  Unlike cancer patients who undergo cycles of treatment with breaks in the hopes of achieving remission and a cessation of treatment, autoimmune diseases don't function like cancer cells.  The treatment is ongoing and usually lasts the person's entire life.

The idea behind LDN is healing the immune system itself, not treating the symptoms as chemotherapy agents are designed.  While it was once feared that LDN might cause a boosting effect on an already errant immune system, we've found that is almost never the case.  As the immune system heals, it rebalances itself and produces the correct numbers of soldier and general cells that direct and fight invaders.  In the vast majority of cases, treatment results in an increased and BALANCED immune system.  Patients are left healthier and stronger with treatment.  Unfortunately, after treatment is discontinued, disease levels are seen to reappear, so like chemotherapy, LDN therapy is ongoing.  While this is a proven and under-used therapy for MS and other autoimmune diseases, it is not a cure.

In MS researchers think that naltrexone works to prevent the cell death of oligodendrocytes by reducing nitrous oxide activity, which prevents the inhibition of glutamate transporters in the brain.  Neurotoxicity of glutamate on neurons and oligodendrocytes is prevented.  LDN also prevents inflammation in neurons.  

LDN side effects are near zero.  Of course any medicine that has the potential to help you also has the potential to hurt you.  That said, unless a patient is allergic to the compound itself, side effects at such tiny doses are rare and are limited mostly to insomnia and bad dreams which tend to disappear as therapy continues.  Those with autoimmune thyroid disease are encouraged to get frequent testing while starting LDN as well as careful titration to a therapeutic dose, as correction of thyroid disease can be very fast, necessitating drastic and quick changes in medications.

One of the biggest problems with LDN is the inability to use opiate pain relievers or steroids.  I found this was the biggest problem for me as I started my own treatment, because I had to be sure I was healthy enough to NOT need these medicines for an extended period of time while the medicine did its work to make me better.  Many autoimmune patients are also chronic pain patients, and the thought of being without pain relief for days or weeks is scary at best.  Fortunately, the increase in endorphins often helps the chronic pain of autoimmunity.  An additional advantage some find is an elevation in mood.

LDN has been tested specifically on Multiple Sclerosis.  In fact, some of the earliest and most effective LDN tests were done on this disease.  Unfortunately, because of its status, no pharmaceutical companies are interested in testing a drug they'll never make any money on, so research has been University and patient driven thus far.  This creates a very slow process.  It also means that doctors who rely on pharmaceutical companies to educate them about new therapies will not be aware of this medicine.  In fact, most doctors who routinely prescribe LDN learned about it from their patients.  This patient driven movement began with the use of this therapy for MS. For details on the most recent research with links for your doctor:

Have you communities discussed LDN therapy?  Not every therapy is going to work for every patient, so I'm wondering if there are any members of your communities who are staunchly FOR LDN use or against it?  If you haven't heard of LDN before, will it be something you want to share in your communities by clicking the link below, or using this short url:
Comment by Tamara on February 28, 2011 at 7:01am
I don't have MS, but I take LDN for my lupus and fibromyalgia.  It has decreased my pain levels, increased my energy levels, helped with sleep and elevated my mood.  With it, I am able to exercise each day which further boosts endorphin levels.  Since beginning LDN about six months ago, I have not had one flare bad enough to need prednisone where before I was practically dependent on pred.  I couldn't be more pleased with the results of LDN and have experienced no side-effects from it.  It is also very cheap!  

Thanks for this post.  I hope more people give it a try.  I also hope that someday a way is found to get FDA approval for these other uses.  
Comment by Ellen S on March 2, 2011 at 11:58am
I'm okay with using it off-label myself.  I suppose I'm  used to that because I'm so used to it.  Migraine meds, autoimmune meds - nearly all of them were developed for use in other illnesses.  Most are not FDA approved for use in Migraine, but well, here we are using them anyway.  FD approval sure would be nice if for no other reason than to get the word out to patients and physicians that it is a potential alternative out there, as right now most people are completely unaware of its existence...

Saturday, February 26, 2011

Pseudobulbar Affect - Inappropriate Laughing/Crying in Multiple Sclerosis and Alzheimer's Disease

While sitting having lunch with a friend, a woman begins laughing hysterically, and no one seems to know why.

While playing cards with his friends, a man breaks into tears in the middle of the game, and everyone assumes he's depressed over something.

While happily dancing with her sweetheart, an elderly woman has a sudden outburst of anger, fighting the spouse she was hugging only moments before.  

All of these people are neurological patients, and all these scenarios illustrate a phenomenon that happens in about 10% of MS sufferers, and a similar number of Alzheimer's and dementia patients.  In all it is estimated to affect approximately 2 million people worldwide.  Called the Pseudobulbar Affect (PBA), the condition is often overlooked by family, friends and physicians when they assume that the inappropriate behavior is not a symptom of their disease, but instead a symptom of emotional lability or even depression. PBA is also sometimes called Involuntary Emotional Expression Disorder (IEED).

PBA can actually be a symptom of many different neurological conditions.  This week the ABC television show Off the Map episode Es Un Milagro, a patient with a pressure inside her skull.  She began laughing hysterically and at first was seen as happy she had survived a dangerous surgery.  When the condition continued it was recognized as a symptom that something very wrong was actually happening in her brain.

In MS and AD patients, PBA is usually a symptom of advanced disease, but not always.  It can happen at any stage.  Damage is done within the pathways that control expression, resulting in inappropriate reactions.  Patients are usually aware that their emotions are not on par with their physical reaction, yet are powerless to control it.  Often these episodes do have what starts as a minor emotional trigger far less than the reaction would indicate.

PBA is difficult to diagnose in anyone if the patient doesn't tell their  physicians or caregivers that something seems wrong.  This implies choice on the part of the patient.  For some very advanced patients, this is almost impossible.

MS, AD and other neurological patients may have extreme difficulty communicating due to their diseases/conditions, making diagnosis more about educated assumptions and guesswork.  It's all too common for physicians, caregivers etc to simply assume the patient is depressed and not acting appropriately.  After-all, depression in chronic diseases is indeed a real problem.  It's important not to use the diagnosis of depression as a trashcan diagnosis however - throwing the symptom into the diagnostic trash bin because it is handy.  This diagnosis often takes work on the part of all involved.  In patients who do experience co-morbid depression, getting an appropriate diagnosis may be nearly impossible without an exquisitely intuitive physician.  This makes awareness about the condition super important for caregivers and loved ones of these patients.

Researchers don't know exactly what causes PDA, but assume that it involves the brain's physiology as well as neurotransmitters.  What they do understand is that the symptoms result from the loss of control in the cortical and subcortical pathways that lead to the brain stem.

Treatment may be possible and often includes the use of low doses of tricyclic antidepressant medicines like amitriptyline or SSRI's.  However, the best results seem to be coming from a medicine called Nuedexta which was just given FDA approval in January 2011.  The active ingredient in this compound is dextromethorphan - an OTC cough suppressant - which is thought to help regulate excitatory neurotransmitters, especially in patients whose primary symptom is crying.  The dextromethorphan is combined in this case with an enzyme called quinidine that increases the bioavailability of the dextromethorphan.

PBA is considered widely to be under-recognized and as a result under-treated.  Doctors often don't think of it when considering their patients.  This adds to the burden of the patient and caregiver to be proactive in recognizing and describing, and insisting upon appropriate treatment for the sufferer.

I think this is an important topic, but I haven't seen much in either the MS or AD communities in which I am a member.  Do you regularly talk about PBA?  Do you think it's important?

What can we do to make this widely known and discussed in these communities?  Will you share this post in order to help to that end?

Wednesday, February 23, 2011

Barry Pankhurst - Cultural Differences in Alzheimer's Disease

What would you feel if a doctor diagnosed you with Alzheimer's Disease, then before leaving the room laid his hands on your head as he prayed for you?

What would you think if, when returning home you found that everyone around you including your wife and family thought the Alzheimer's meant you had been possessed?

What would you do when you then found yourself completely and utterly alone in your disease because of misinformation, fear and strange beliefs?

If you're like Barry Pankhurst, you'd do the only thing there was left to do... get on your computer and connect with other patients and advocates throughout the world.  You'd become so fueled with passion about de-bunking these myths and supporting patients and caregivers that you'd team up with others to produce and promote videos and slide shows depicting what it is like to live a life with Alzheimer's Disease.  You'd become active online in communities sharing your experiences artistically with these videos and with poetry that illuminated the experience of being an Alzheimer's patient.

My new friend Barry is in every way the consummate gentleman.  Heralding from England, he met and married his beautiful wife in Indonesia where he lived the quiet life of a master baker and confectioner.  When he began to notice changes he recognized from other members of his family, he sought help from a doctor.  This was when his and his family's lives became irrevocably changed forever.

I'd love to share Barry's video with you as he shares the details of his experience in his own words and with photos that let you get to know the man behind the smooth, perfectly cadenced and practiced voice.


This is a video that definitely goes onto my list of favorites to share with others.  I can't imagine anyone watching it without being changed...

Thank you Barry!

You can find Barry Pankhurst here:

++ Facebook
++ Facebook group Memory People
++ His own website at
++ Alzheimer' forum
++ OutsiderArtist
Comment by Barry Pankhurst on February 24, 2011 at 2:45pm
And thank you Ellen for the extremely profound introduction that makes me fell very humble   

Comment by Ellen S on February 24, 2011 at 8:14pm
Barry, the truth is that you are every bit of my description and more. I feel very privileged to know you and very much look forward to getting to know you better with time. You really know what you're talking about and I very much look forward to learning from you. You are a vital part of the Alzheimer's community and therefore an important part of WEGO Health as we connect and network with the movers and the shakers of this global concern. You honor me, and I thank you my friend...

Tuesday, February 22, 2011

Brain Imaging and Genetics Team up Together to Warn of Early Onset Alzheimer's Disease

While we have known about some of the genes thought to be  responsible for Late Onset Alzheimer's Disease, it's only been recently that some hints of the potential genetics that may influence Early Onset Alzheimer's Disease, and it is exciting...


The gene is called BDNF (Brain-Derived Neurotrophic Factor).  It helps to keep our brains healthy and functioning, especially the memory centers of the brain where it is responsible for learning and memory. Research found that there is less BDNF in the brains of Alzheimer's patients.  This might seem significant, but by itself it was not.  Only when genetic findings were combined with brain imaging did it become clear that scientists had landed on something important.

The most important part was the fact that they saw changes in the brains of patients with a specific variation of the BDNF gene - - before difficulties were noticeable upon testing.

Let me say that again another way - the changes that are seen in the post-mortem (after death) brains of Alzheimer's patients were found when imaging was done on live carriers of the BDNF variant BEFORE cognitive changes had occurred.  

This brings up many difficult yet exciting points:

Before, Alzheimer's Disease couldn't be diagnosed until significant changes had already occurred.  Now, we can see it before any symptoms appear and early diagnosis is possible.   This may lead to earlier treatment and potentially better outcomes for these patients.  BUT they must receive testing and imaging which is expensive and may not be seen as important by physicians.  And how do we decide who should be tested and who not to test? 

The benefits to patients are un-measurable.  The benefits to society are enormous.  Should patients be identified and treated earlier, it is estimated in one article to potentially save the health care system of Canada around $15 Billion over the next 10 years.

Would you want to be tested to see if Alzheimer's Disease is in your future?  In some of the communities I interact with, the answers are very mixed.  Because of the discussions that have taken place re: this topic, I've created a discussion in the Alzheimer's Disease Group where we can talk about making these types of choices, and how we can present this topic to our communities in a way that stimulates conversation without scaring potential patients and caregivers.

I was tested for Late Onset Alzheimer's.  In that discussion I tell a little of my story and show you the results of my testing and what the lab said my odds are for becoming an Alzheimer's patient later in my life.

Monday, February 21, 2011

The reality of Serene Branson and her Complex Migraine

The video of a young reporter speaking jibberish has gone viral.  I was ashamed when I saw social media comments that were hurtful, mean and just plain heartless.  Thankfully, most of those commenting on Serene Branson's inability to speak were those of concern for her health.

Was it a stroke?

Was it a seizure?

Was it a government conspiracy?  (Oy vey)

What happened to the pretty blonde reporter who was rendered incapable of forming words while on camera?

Ms Branson recently announced that her on-camera incident was not a stroke as many had guessed.  It was in fact a severe type of Migraine aura that her doctor called a Complex Migraine.

You won't find a diagnosis for Complex Migraine, but it essentially means a Migraine with stroke-like symptoms.  The term is no longer used as it has been dropped in favor of the more general term Migraine with Aura.  Just because the phrase has been lost doesn't in any way mean that it doesn't happen, or that it is any less profound.

These type of auras, while not common, are also not unheard-of.  To see one happen in front of you is disconcerting.  When you see Ms Branson's face you can tell that she is at once confused and frightened.  She does what those of us who suffer this type of aura automatically do - she tried to cover it up.  She wasn't able to because her brain was 'misfiring' and her language center stopped functioning for a short while.

During Migraine aura, the electrical system of the brain malfunctions.  A literal wave of spreading cortical depression travels up the back of the brain forward.  When it hits certain areas of the brain it plays with them.  We see things that aren't there - or nothing at all.  We hear things that aren't there, or our hearing dims.  We taste funny things, smell strange smells and feel tingly, weak or numb.  We can even have problems with how we perceive the world around us - called Alice in Wonderland Syndrome.  Sometimes - not often, but sometimes - when the wave of spreading cortical depression hits one or both of the two language centers we have in our brains, using language may become difficult, or even impossible.

Language may be words or numbers.  They may be spoken, heard, understood, written.  Math difficulties may include calculation problems that reduce us to preschoolers when asked to add or subtract small numbers.

This type of language deficit is called aphasia.  When aphasia is short-lived, we call it transient aphasia.  When it doesn't go away we just call it aphasia.  Someone who is suffering any type of aphasia is called Aphasic.

The ability to communicate is as necessary to us as breathing.  Without communication we are alone.  Communication is primal.

Shame on those who choose to laugh at Ms Branson for her health scare.  People with chronic health conditions deserve the same respect as everyone else.  This was not a case of nerves - this was obvious to everyone watching.  Janet Geddis at called Ms Branson an accidental Migraine hero, and I agree.  She stood tall in the face of some pretty nasty comments to try to educate the world what happened to her.  For those who think Migraine is just a little headache that goes away, she was the perfect illustration - something visible for a normally invisible disease - for others to get a mere glimpse into the lives of those who suffer.

Migraine is a neurological disease.  Migraine is not a headache.
Comment by Anne on April 8, 2011 at 2:05pm
This episode that Serene experienced is one of the symptoms people with CADASIL experience.  
Comment by Ellen S on April 12, 2011 at 4:12pm
Thanks so much for adding that Anne!  For those who don't know what CADASIL is and are wanting to do a little research, here is a link to a recent discussion started in the MS community about it.

Wednesday, February 16, 2011

Curcumin Supplements Fail Lab Testing

Consumer Labs recently reported that 2 of the 10 Turmeric (curcumin) supplements they tested failed.  The results for the two supplements were not just a little low in the promised ingredient, but nearly devoid of curcumin when tested.  Moreover, the two failed supplements had additives designed to enhance the power of the little bit of curcumin they contained (7.7% and 14.7%).  Some of the supplements tested had bioavailability enhancers as curcumin is very poorly absorbed.

Which supplements failed?

*Advanced Physician Formula Curcumin Capsules
*Paradise Herbs and Essentials Turmeric vegetarian capsules

What is Tumeric?

Turmeric/curcumin is a spice used for flavoring and giving a bright yellow color to foods.  You might know it by it's common name - curry.  Rhizomes (roots) of the Curcuma Longa plant are dried and ground into a fine powder.  Research has found that curcumin is a powerful fat soluble anti-oxidant and anti-inflammatory.  In the past it was used primarily in Ayervedic medicine, but doctors all over the world are now telling their patients to take it for it's amazing qualities.

How does it work?

It is believed that Curcumin acts by easily crossing the blood brain barrier (not a small feat) and by blocking Cox-2.  Cox-2 is the target of NSAID medications such as ibuprofen, ketorolac, indomethacin etc.  It also is effective in autoimmune disease because it regulates inflammatory cytokines such as IL-1beta, IL-6, IL-12, TNF-alpha and IFN-gamma and associated JAK-STAT, AP-1, and NF-kappaB signaling pathways in immune cells.  This means it is actually working on the immune system itself as well as the symptoms of the disease. Curcumin's lack of side effects is its primary advantage over NSAIDs and corticosteroids.  Curcumin may also act by its ability to trigger a release of our body's most important anti-inflammatory hormone - cortisone.

How is it absorbed?

Because curcumin is not easily absorbed, this may pose problems for some people, necessitating they take large numbers of capsules.  Because curcumin is fat soluble, taking them with fat is thought to help the bioavailability.  Interesting to note, is that I've seen some people discuss mixing their curcumin with cream (milk fat) to help with absorption.

Some conditions that may benefit from Curcumin include:

*Migraine especially if triggered by inflammatory response
*Autoimmune diseases including Lupus, Sjogren's, Rheumatoid Arthritis, and Multiple Sclerosis
*Ulcerative Colitis

Unfortunately, although there is anecdotal evidence that the use of curcumin helps Alzheimer's patients, research of the use of curcumin alone did not reveal this, which is disappointing.  No one is sure why the research didn't match the evidence, but it's suggested that absorption may have been an issue, or that it is the use of curcumin in concert with something else like a specific type of diet that may make the difference in those patients who responded.

Do your communities talk about the benefits of curcumin?  I'm especially interested in the benefits to Migraine, autoimmune and MS patients.
Comment by Denis Van Loan D.D.S. on May 30, 2011 at 8:39pm
The curcumins in turmeric are one of my favorite supplements.  As pointed out in the previous article, the availability of curcumin is not always what is advertized.  Not only is content deficient but the assimilation can be poor.
Nonetheless, the research I follow finds the population of India, which cosummes large amounts of the spice turmeric, has one tenth the incidence of Alzheimer's that U.S. residents have.  Indeed India has one of the lowest incidences of Alzheimer's in the world. They are also way ahead of most countries with the low incidence of heart disease and cancer. (I'm sure the drug companies would not like you to know this.)
Good research has shown curcumin is effective.  In 2009 the U.S. National Library of Medicine reported 250 papers on curcumin were already published.
Curcumins are effective as pain relievers, as anti-oxidants, immune enhancers against fungi and viruses, and protective of DNA.  In regards to cancer and viruses, they are believed effective because of their DNA protection.
Researcher Dr. Badmaev says this:  "The anti-carcinogenic activity of turmeric extract and curcuminoids may be in part explained by their well researched ability to prevent genetic mutation or mutagenesis."  I find considerably more curcumin needs to be taken in mg's; but the good news is curcumins are well tolerated and appears quite safe...Denis Van Loan D.D.S.
Comment by Andy on June 6, 2011 at 7:39pm
The absorbtion of the active components in tumeric are enhanced by the addition of black pepper to the dish being prepared.  Capsules are silly in my estimation as  the best is available in the spice counter and if you look carefully you may find a coop grocery that stocks fresh root. Andy Lininger, Licensed Acupuncturist.
Comment by Ellen S on June 7, 2011 at 12:33pm

I wish it were possible for all of us to simplyl eat the spice and get enough of it in us to benefit us.  However, some of us don't tolerate the taste well, absorb nutrients sufficiently, or are able to eat suffucient amounts of food to make eating large amounts of the spice on a daily basis doable consistently.  This makes capsules a good choice for those who choose to circumvent these issues.  Sometimes it is the only choice.

As Health Activists, we often deal with patients that have tried "everything".  They aren't your normal patients because they have already tried the usual routes and treatments.  Some have even been told their cases are "hopeless" and they are desperate.  They are looking for something to help them in their specific situation.  Patients who are easily treated do come and go as it were, but they seldom stay long.  They find what they need and move on.  The real challenges to educating and advocating for patients are those who do not fit into the neat mold "patient". 

I agree, I wish we could get all the nutrients etc we need by eating, but the fact is that curcumin capsules may sometimes be the only way to utilize this important food - yes?  For those with these issues, capsules could be a lifesaver.   I hope others who help patients, will keep this important tool in their back pockets despite the questionable lab findings reported here...

Monday, February 14, 2011

Just days ago,  another new/old drug was approved by the FDA.

Gralise is a long acting form of the tried and true drug Gabapantin (aka Neurontin).  Its structure is similar to that of the neurotransmitter GABA.  This new long acting form of the medicine means that capsules need only be taken once daily instead of multiple doses split throughout the day.  For those sensitive to the medicine, this may mean a more steady delivery of the drug, reducing the spikes that can occur when taking more frequent dosing, and hopefully fewer side effects.

Gabapentin is an anti-epileptic drug used for partial-onset seizures.  This means it works by altering how the brain's electrical system works.  This is how it helps those with epilepsy.  While gabapentin has been approved for use in epilepsy, gabapentin in this form (Gralise) has only been approved thus far for use in post-herpetic neuralgia.  Because of its action on the brain, gabapentin is often used off-label as an alternative to opiates and for many other conditions for which it has not yet been approved including:

Multiple Sclerosis associated dysthesias
Neuralgia and neuropathy
Nerve pain
Chronic pain
Mood and/or anxiety disorders
Drug/alcohol withdrawal
RLS (Restless Leg Syndrome)

WARNING: Gabapentin works with the chemicals in our brains, and as such should never be stopped without consulting a physician for appropriate instructions on titrating the dosage down slowly.  Serious adverse events can occur if this is not done appropriately.

Unfortunately, there are reports of abuse of gabapentin.  As a result it is controlled carefully by most doctors.

Personal note:  An infrequent side effect of gabapentin can be aphasia.  Aphasia is the inability to process communication appropriately.  When this happens, you may not be able to speak or understand language or numbers.  I have used gabapentin in the past and did experience aphasia and kidney stones while on the medicine.  We cannot prove that either were caused by gabapentin, but the medicine was withdrawn and symptoms seemed to subside as well.  Aphasia was never mentioned to me as a potential side effect of this medicine in all the years I took it or its cousin Lyrica, and my aphasia was blamed on my Migraine issues.  Because the connection was never made, I continued to take the medicine and suffered to the point I had to quit my job as an emergency dispatcher.  Aphasia can be part of the neurological symptoms an MS patient may discover, and I think this is important for patients to be aware of as a result.  Sometimes a new symptom isn't the disease, but a problem with medication. 

For more information on side effects and adverse reactions

Comment by Kristin Bennett on February 14, 2011 at 10:28pm
Is it like GABA the supplement? I wonder if this could be a first step towards pharmaceuticalizing the supplement industry and making a prescription required/more expensive... :-(

Comment by Ellen S on February 15, 2011 at 9:37am
Hi Kristin,

No, not exactly.  GABA is a neurotransmitter.  The way I understand it (check the links within the post for more information) gabapentin doesn't bind directly to those receptors as would GABA itself.  You might think of it like a close cousin.

The problem with a lot of supplements - and I dont' know for sure if GABA is one of them - is that in order to affect the brain they must be able to cross the blood/brain barrier.  Many have a lot of difficulty this way.  It may be in sufficient amounts everywhere else in the body but not the brain.

Gabapentin has been around for quite a while actually.  Another medicine was created that is basically like a safer form of gabapentin, and it goes by the trade name of Lyrica.  It works about the same way, but purportedly has fewer side effects.  My side effects were about the same with each of the medicines.  They weren't horrible, but when I got up to the dosage I needed to be at to help prevent my Migraine issues and help with my neuralgia, then they got severe and I couldn't tolerate it anymore.  Each person is different though.  As I understand it, aphasia is not a common side effect.  Knowing it MIGHT have been a side effect may have made a difference in choosing to quit my job though.  It's possible that, had I known that little tidbit, my life would be very different from what it is right now.  I wish I'd had that opportunity to choose... 
Comment by Ellen S on February 15, 2011 at 9:48am
Serene Branson is a seasoned reporter who was at the Grammys.  While on camera she suffered a sudden attack of aphasia.  The video is striking.  You can tell something is very, very wrong, and that she knows something is wrong.  Those of us who have suffered aphasia for any reason will keenly remember what it is like to hear yourself speaking gibberish like Ms. Branson and the helplessness that is the result.

Here is the link to that video:

So far everyone is talking TIA or stroke, or perhaps a type of seizure.  Only Ms Branson and her doctors know her medical history.  There is a fair chance that if she is taking one of these medications, it could be a side effect of those medicines.  I hope she has a good, knowledgeable neurologist who will carefully examine her and her medical history and recognize the potential for some of these meds to cause transient aphasia. I would truly hate for this to end her career as it did mine.

This is not the first time this has happened to a news reporter.  Here is another video of a reporter as she suffers a particular type of seizure while giving her report:
Comment by Ellen S on February 15, 2011 at 9:50am

Let's try putting that video up again:

Thursday, February 10, 2011

The Physiology of Love vs Hate

There are measurable physiological health benefits to Love. 

There are serious health implications for those who indulge in hate and other negative emotions, but isn't is nice to know that there is real science to back up the theory that love not only makes us feel better, but can actually act to make us healthier? I think so!

These are some of the things love can do to keep you healthy:

1.  Lower blood pressure and better heart health with lowered cholesterol levels
2.  Helps us to cope with stress and slows aging
3.  Aids in the secretion of calming, healthy brain hormones like dopamine, endorphins, DHEA and oxytocin
4.  Those that love you often encourage healthy behavior.  When you love them you are more inclined to listen to that helpful healthful encouragement.
5.  Hugging and holding hands can act to release oxytocin - the bonding hormone
6.  Being in love increases your pain tolerance
7.  Love makes us feel happy.
8.  Love and happiness helps our immune systems work more efficiently, resulting in fewer illnesses.
9.  Wounds were shown heal faster in those who are in love or happy.
10.  Strong connections to friends are as helpful healthwise as quitting smoking, and even more beneficial than exercising!
11.  If you're in love there is less chance you'll become suicidal.
12.  Love can result in fewer doctor visits, shorter hospital stays
13.  Those in love are less likely to become depressed or misuse drugs or alcohol.
14.  Those who experience long-term love such as a marriage can expect to live longer.

I gave 14 reasons to concentrate on love vs. hate because this is February and nearly Valentine's day.  However, love - and acting with love - can benefit us in nearly everything that we do.  To show love, consider going beyond the obvious hug to your spouse or child.  Think about some of the ways you can live a life of happiness and love that aren't so obvious:

1.  Volunteer
2.  Forgive someone
3.  Do something to help someone - a random act of kindness
4.  Care for an animal
5.  Write a letter to someone you care deeply about
6.  Say "Thank you" and really mean it
7.  Smile with your mouth and eyes.  Do it big and frequently
8.  Play with someone you care about
9.  Hug someone, but don't let go until they do

Okay, so I snuck #8 in on the sly :)

There is an Alzheimer's video that was recommended to me a few days ago that inspired this post for #LoveBeatsHate blogging day today.  I hope you have just a few moments to watch Naomi and Gladys.  They  changed everything I thought I knew about the physiological benefits of love:



Do you discuss the health benefits of showing a loving attitude vs. a hateful, mean, vengeful or otherwise negative attitude in your communities?   Do you think they would benefit from seeing this video or this post?

For more information about this incredible video clip as well as the rest of the PBS production and the fabulous educational series that goes with it, please see Memory Bridge - a not for profit site dedicated to the mission of building bridges between human souls. 

Here is a short url to share this post in your communities:

This is my entry for the Love Beats Hate blogging event #LoveBeatsHate.  For more information or to join the next event:

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Comment by Trish Robichaud on February 10, 2011 at 3:57pm
Great post Ellen!  Have ping'd it around my networks!  LOL!  Thanks for connecting on FB!
Comment by Amy K on February 12, 2011 at 12:11am
Love is definitely the way to go! This video is so beautiful, what an amazing capacity for love Naomi has! I love this post Ellen, thank you so much for sharing. We certainly all need love and it's healing properties are undeniable.
Comment by Ellen S on February 15, 2011 at 9:58pm
I just spoke with Michael Verde who works with Naomi Feil, and I am so excited to say that we will be hearing lots more from them in the near future, so STAY TUNED!

Monday, February 7, 2011

Folding at Home to Cure Alzheimer's

Stanford University is asking for our help!!!
An incredible citizen based research project created and run by Stanford University is our chance to literally do absolutely nothing and help them to discover the keys to diseases like

*Alzheimer's Disease
*Parkinson's Disease
*Cystic Fibrosis
*Huntington's Disease
*Creutzfeldt-Jakob Syndrome (Mad Cow)

The project is called Folding At Home and this is only a partial list of the conditions that are benefiting from this volunteer project.
If you or your loved one has been diagnosed with Alzheimer's, this is your chance to make a tangible difference toward discovering the cause of AD as well as potential treatments.... or even a cure, and all you have to do is leave your computer running when you're not using it. 

So, what is Folding At Home? Protein folding is an extremely complex biological reaction that happens inside our bodies.  When it happens right we are healthy.  When something goes wrong the result is disease. 
The project - Folding At Home is designed and run by Stanford to help them discover how proteins mis-fold and cause disease (more on that below). The process is so complex, that it would take many, many supercomputers many, many years to accomplish.  In the meantime, people are dying.... this is too slow. So, the project was devised to invite the general public (that's you and me) to hook our computers and gaming units up with Stanford University's computers and let them use our idle computers and Play Stations whenever they're not being used.  Think of many, many small computers joining together to transform themselves into the world's largest supercomputer - that's what we're talking about! This could be during the middle of the night, while you're at work or eating dinner - whenever you choose!  By "lending" your computer processors to the project it is making this process happen years faster.

What then, is Protein Folding? The human body makes about 50,000 proteins. When these proteins are being made, they are supposed to assume a particular shape. This Apple Computer article relates it to Origami paper folding. Sometimes something goes wrong in the process of folding the flat piece of paper into a beautiful swan. The protein that is supposed to look like an origami swan instead mis-folds and the end product is completely different - maybe an origami star, or worse yet.... nothing. When this happens, our bodies can't function properly. We become sick. Sometimes, we die. We need to know how each of these proteins fold properly before we can try to prevent the mis-fold, or fix it. The computer calculations for these complex chemical reactions are massive. In 2007 it was estimated that the amount of power this system uses would be roughly equal to every human on planet earth doing 75,000 math equations in their head at once! If we are to discover the mis-folds in our lifetime, it is going to take an army of volunteers to be a part of the project. This is where YOU come in!

How do I sign up? I have posted a few Folding At Home videos here at WEGO Health. You might want to start there, or you can go directly to the University's website for the project which can be found HERE.  


- By going to the website and following the directions, you can begin. This project was named by Guinness Book of World Records as the most powerful distributed computing network in existence. When you're not using your computer, simply set it to work, and that's it. You can even watch the folding as it happens if you like - incredible!!!

Here is a link to some of the published research on Alzheimer's that has occurred as a result of Folding At Home.

You can be a part of the Research,
You can be a part of the Healing,
You can be a part of history...

Never underestimate the power of ONE!
Health Activists, this is a call to action.  Please, post this in your communities.  Click the button below and add it to your twitter feed or your facebook account.  Encourage everyone you know to participate.  
Join in the conversation about Folding At Home by going to this Alzheimer's Disease group discussion.  There is an awesome video there done by a group of ordinary guys who formed a Folding At Home team.  They each have someone they're doing this for.  
Who is your someone??