Quick Search For Posts On The Following Topics:

Tuesday, December 28, 2010

More On Aricept, Ginkgo Biloba and My bvFTD

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD (Frontotemporal Dementia - Pick's) is different. Keep in mind as you read this that the person who wrote this has dementia - bvFTD. That would be ME.
Medical Disclaimer 

Making big news at the end of 2008 was a six-year research study reported in the November 19, 2008 issue of The Journal of the American Medical Association (JAMA). It found that Ginkgo Biloba was not any more effective for the prevention of Alzheimer’s disease or other dementia than a placebo.

The 3069 subjects, all over age 75, took EGb 761 twice a day (total 240 mg) or a placebo. Let me interject here that EGb761 is one of the supposed active compounds in Ginkgo Biloba, but not the only one. Anyway -  Study volunteers had normal awareness or very mild impairment at the start of the trial. Many news stories have seemed to generalize this research trial, and wrongly discount Ginkgo Biloba for any beneficial use.

Ginkgo Biloba has been all over the news again lately, and all of the stories seem to be based on the same study from 2008 because it was just published in November of 2010 by the The Journal of the American Medical Association (JAMA). The headline usually reads something like,"Ginkgo is not effective in treating Dementia". Well -  as the renowned Dr. Joyce Brothers was always so fond of saying, "One study shows... ". 

It is all the same study. Most of the news stories mis-interpreted the results of the study. When I researched the actual study myself I found that it was performed on an extremely aged sample of people (age 75+!) who were healthy (as in No Dementia!), and it showed that Ginkgo did not significantly prevent dementia over the six year period when they were followed. The dose of Ginkgo administered was the minimum of 120 mg, while the recommended dose for anyone with dementia is 240 mg to as much as 600 mg per day. The study also found no adverse effects when taking Ginkgo Biloba which is consistent with most other studies. Over all it was a very well-done study with a huge sample size, and the conclusions are quite probably correct that Ginkgo Biloba will not prevent dementia. I must mention that there was another study published in a less prestigious journal at the exact same time as this one which came to the exact opposite conclusion. Well... the study was great, but the way it was frequently reported in the media is crap.

My reaction to all that is... So What! I already have dementia, so I don't care if Ginkgo prevents it. Too late for that!

My question is:
Will Ginkgo Biloba help with the symptoms I have now, or slow the progression of my dementia?

Ahhhh... now that seems to be a totally different story. Out of over 125 research studies, many of which are very well done, the overwhelming conclusion is that Ginkgo Biloba has a significant beneficial effect on dementia symptoms. No, I did not review all 125+ studies myself, but I did find several review articles that did that for me which is just as good.

Over a hundred studies all say that Ginkgo Biloba has beneficial effects if you have dementia. Duh! Go do the research for yourself, and then - go Ginkgo!

This is a no-brainer. Since I have dementia, and I do not suffer from seizures, I am going to take Ginkgo Biloba. The fact that it is very inexpensive compared to other medications and supplements is just an added bonus.

So, since I also take Aricept, I was concerned about an interaction. It turns out that there might be one: Ginkgo may act in synergy with Aricept. That means that it could make any side effects of Aricept worse, so is not recommended. It also means that it should enhance any beneficial effects. Since my nasty side effects from Aricept have gone away, I see a clear advantage to taking both if I can tolerate them.

A research study that appeared in the September 2006 issue of the European Journal of Neurology compared EGb 761 to the common drug used to treat mild to moderate Alzheimer’s disease –donepezil (trade name Aricept). The six-month study began with 76 people, ages 50 to 80, who were divided into three groups, those who took EGb 761 (160 mg per day), donepezil (5 mg per day) or a placebo.

The results for the 60 individuals who finished the study showed a significant improvement in attention and memory for the Ginkgo and donepezil groups over the placebo group. In fact, the researchers noted that Ginkgo and donepezil produced the same improved-memory results. Furthermore, the Ginkgo group was side-effect-free compared to the donepezil group that had reported diarrhea or nausea symptoms, and Ginkgo, of course, was considerably less expensive. Note that in this study the 2 were not combined, they were compared.

So, even though the above study may indicate that Ginkgo is just as effective as Aricept, and other studies indicate the two may be synergistic, I would not expect the final outcome to be an effect twice as beneficial as the two taken individually. It just never works that way in real life. I would, however, fully expect that when taking the two together the beneficial effects would be better than either one taken alone.

So, the bottom line is that I am going to try to combine the traditional drug Aricept with the alternative medicine Ginkgo Biloba, and hopefully increase the benefits of both.

So far, after several weeks, that seems to be the case. Though I recently am trying an increased dose of Aricept (23 mg) I have not had any severe side effects. A little nausea, and occasionally a feeling of "jitteryness", but nothing to outweigh the benefits. I am currently taking 120 mg of Ginkgo Biloba Plus twice daily (morning and night) for a total of 240 mg of Ginkgo, and 23 mg of Aricept each morning.

Since I have been taking the combination I feel like I can think again!

No, it has not alleviated all of my symptoms. I still have difficulty with initiation, working memory, and motivation. As far as cognition goes, I have seen a huge improvement. Thinking isn't as difficult as it was a year ago. I no longer need a daily to-do list. I can do some simple mental arithmetic. I am not pausing to search for words as often. I can play video games competitively again! These are huge positive changes compared to a year ago. Again, I am not symptom-free, but I am improved from a year ago.

Of course, this evaluation is subjective. I cannot test or measure any improvement. Others who know me also report seeing a huge improvement. That is the best I have to go on.

The next Alternative Medications to add to my cocktail are... Melatonin and mushrooms. More on that later.


Comments are welcome.

Wednesday, December 22, 2010

Aricept - Aricept and My bvFTD - Update 1

Aricept is not approved for bvFTD, but it seems to be helping me... A whole bunch!

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD is different. Keep in mind as you read this that the person who wrote this has dementia. That would be ME.
Medical Disclaimer.

This is a short update to the first post about my taking Aricept for bvFTD. I started taking Aricept 5 mg on September 13, 2010. I increased the dosage to 10 mg after about 6 weeks, and now on December 13, 2010 I increased the dosage to 23 mg. That was 7 days ago.

Initially when I first started taking it, I had some severe difficulties with the side effects of Aricept. Though I did not seem to have any adverse behavioral issues, I did have some gastrointestinal problems the most bothersome of which was heartburn. The insomnia was not too bad, but the itching was horrible, and almost caused me to discontinue taking the drug. I cannot express in words how severe the itching was - think poison ivy on top of mosquito bites... and add a few chiggers! Then multiply by two!

Finally! All of the nasty side effects have gone away. They lasted about 4 - 6 weeks, and were considerably more manageable near the end of that period. There may still be a little nausea and insomnia now and then, but that may have nothing to do with the Aricept because of some other medications I occasionally take which also can cause both nausea and insomnia. In any case it does not happen often, doesn't last more than a few minutes,  and is not severe.

With the approval of my neurologist I have increased the dosage again over the past week to see if I can tolerate the higher 23 mg dosage without having a return of the adverse side effects. So far it has only been a few days, so it is too early to say anything conclusive about that. If it is like when I first started taking Aricept 3 months ago then I would expect to have any side effects start to show up over the next 2 - 3 weeks. I am hopeful they will be short-lived if at all.

Though Aricept is not approved for treatment of bvFTD it seems to be helping me a lot with no adverse behavioral effects that are apparent to me.

Some beneficial changes in me that I and others have noted in the past 12 weeks since taking Aricept include: being able to do mental math again, not using a daily to-do list, quicker thinking and speech. Generally more like my "old self".

I don't really have too many ways to objectively evaluate any benefits. I can say that without a doubt I feel like my thinking is sharper, and my cognition has improved. Subjectively I think I have seen a huge improvement regarding my Dysexecutive Syndrome, and maybe a slight improvement in attention. My only objective test is that I can now add a couple numbers in my head, and do other mental math. As an example: I was at a store a couple days ago, and as I was being checked out I was adding the stuff up in my head as it was being tallied into the cash register. When the total was given, I was confident enough in my math capability to question it because it was about $22 higher than what I had added it up to be. I was right! I had been double charged for a bag of a hundred wine corks!

I could not have done that a year ago! So, in my opinion, Aricept is helping. I am also taking a couple of herbal supplements as well, specifically Ginkgo and Melatonin. I strongly believe that the combination of the Ginkgo and the Aricept is having a huge impact. The two have been shown to interact in numerous studies, and as soon as I started taking the Ginkgo Biloba I noticed an increase in the effects of the Aricept. Maybe it is a coincidence... if you believe in that sort of thing. I will post more on this soon.

All of that is just a bonus. I am not taking Aricept to improve my FTD symptoms. My purpose in taking it is to slow or stop the progression of my bvFTD. If I can gain even a couple years any nasty side-effects (except the itching!) would be well worth it. Unfortunately there is no way I can think of to objectively measure if it is working to slow the progression or not. Only time will tell.

So, for now I am going to continue taking the Aricept, and also continue to explore the options of Alternative Medicine.


Comments are welcome

Nicotine and Dementia - Cigar anyone?

"A woman is an occasional pleasure but a cigar
is always a smoke.” - Groucho Marx 


I smoke a cigar now and then. Occasionally, some ill-informed non-smoking do-gooder tries to explain, usually at great length, just how bad smoking is for my health. I wait patiently as I enjoy the unparalleled pleasures of my cigar, and when they eventually finish, sure that they have convinced me, I reply, "I will die from complications of dementia long before any possible result of cigar smoking. In addition, nicotine in the form of my cigar serves to alleviate my symptoms, and is in effect a treatment for my disease. Want another drink?" 

...and for those really annoying people who need proof:

Nicotine clues for dementia treatment

14. July 2008 15:35

A team of London scientists have found clues for the potentially therapeutic benefits of nicotine on learning, memory and attention while minimising the risk of addiction. The research announced in Geneva Monday will assist the search for new drugs for dementia.

"Nicotine, like many other drugs, has multiple effects some of which are harmful whereas others may be beneficial," said Professor Ian Stolerman from the Institute of Psychiatry, King's College London. Previous research has revealed these cognitive effects in humans and in laboratory animals. "They are small effects and," he warned, "for healthy people they do not outweigh the harmful effects." The pharmaceutical industry has striven to discover nicotine-like substances for conditions such as Alzheimer's disease. Nicotine itself is difficult to administer by conventional means. The differences between doses that produce cognitive and toxic effects are small and, most significantly, there is also high risk of addiction. The balance, however, between costs and benefits is much more favourable for people with serious illnesses such as dementia. Speaking at Europe's biggest neuroscience conference, Professor Stolerman explained that newer substances are based upon the chemical structure of the nicotine molecule. Research in rats has shown a nicotine-induced improvement in sustained attention to visual stimuli. The King's College team studied the underlying mechanisms that produced this change and have helped to identify the roles of nicotinic receptors - the proteins on cells that respond to nicotine - as well as the involvement of several chemicals in the brain, including dopamine, noradrenaline, glutamate and serotonin. "We found several similarities and only small differences between the cognitive mechanisms and those involved in the addictive effects of nicotine," said Professor Stolerman. "The cognitive 'boost' that many smokers experience from nicotine probably contributes to the reason people smoke cigarettes, so it may not be possible to totally prevent addiction. Nevertheless, the potential for abuse of a medicine based on a pure nicotine-like substance is likely to be very small." The new knowledge about mechanisms of nicotine action may speed the discovery of agents that are more effective as cognitive enhancers than nicotine itself, with longer-lasting effects. "This is a promising stage in the years of research that have endeavoured to separate the beneficial from the harmful effects of nicotine," Professor Stolerman concluded. 

But, more importantly, a beautiful woman recently remarked over a glass of fine apple wine how she loved the smell of my cigar, and in spite of anything Groucho may have thought, that alone would be reason enough to smoke one now and then. 

So my advice is,  if you don't smoke, don't start, but if you have dementia, who gives a shit? 



 Comments are welcome.

Friday, December 17, 2010

My Brain With bvFTD - All About Memory



A Technical Look At Short-Term Memory

Since one of my main difficulties is with Working Memory I wanted to know more about it. There has been a large amount of research on memory since I took my last Psychology class. About all I can remember of brain anatomy is... Brain Stem! Brain Stem!

The following is copied directly with permission from the web site, The Brain From Top To Bottom. It is a great site, so expect to see more in the future.


SHORT-TERM MEMORY




In the course of a day, there are many times when you need to keep some piece of information in your head for just a few seconds. Maybe it is a number that you are “carrying over” to do a subtraction, or a persuasive argument that you are going to make as soon as the other person finishes talking. Either way, you are using your short-term memory.

In fact, those are two very good examples of why you usually hold information in your short-term memory: to accomplish something that you have planned to do. Perhaps the most extreme example of short-term memory is a chess master who can explore several possible solutions mentally before choosing the one that will lead to checkmate.

This ability to hold on to a piece of information temporarily in order to complete a task is specifically human. It causes certain regions of the brain to become very active, in particular the pre-frontal lobe.


 This region, at the very front of the brain, is highly developed in humans. It is the reason that we have such high, upright foreheads, compared with the receding foreheads of our cousins the apes. Hence it is no surprise that the part of the brain that seems most active during one of the most human of activities is located precisely in this prefrontal region that is well developed only in human beings.

Human memory is a complex phenomenon, however, and of course involves other regions of the brain as well.

(Brain Stem! Brain Stem!)

SHORT-TERM MEMORY- Part 2

LONG-TERM MEMORY
Baddeley’s model of working memory has proven especially fruitful for research on the brain areas involved. This model posits a central processor that coordinates the activity of two sub-systems. Many brain-imaging studies show high activity in the frontal lobe when this central processor is working.

Source: NIMH Laboratory of Brain and Cognition. Published in Nature, Vol 386, April 10, 1997, p. 610
For example, the image shown here was produced by functional magnetic resonance, a technique based on the increased blood flow to the most active areas of the brain. In this image, taken while the subject was holding an image of a face in his memory, the yellow area in the prefrontal cortex is very active.

But Baddeley’s model also postulates the existence of a phonological (acoustic and linguistic) memory and a visual/spatial memory (containing mental images). Brain imaging studies have also revealed distinct neuroanatomical bases for both of these forms of memory.

The phonological loop activates certain areas in the left hemisphere that are associated with the production of language, such as Wernicke’s area and Broca’s area. Visual/spatial memory seems to be associated with a region of the occipital cortex generally associated with visual processing.

Meanwhile, certain sub-regions of the prefrontal cortex are activated only if the memorization exercise is somewhat difficult for the subject, thus confirming the coordinating role of the central processor.
Things get even more complicated when you consider the chronological sequence of memorization: the various steps involved in storing and retrieving a piece of information.


LONG-TERM MEMORY

The hippocampus, the cortical structures surrounding it, and the neural pathways that connect them to the cortex as a whole are all heavily involved in declarative memory–the memory of facts and events.

For example, after you’ve had a fine dinner with some friends, your memories of their faces, the taste of the wine, and the music that was playing are distributed in the various visual, olfactory, and auditory areas of the brain, but they are all connected together by the hippocampus to form an "episode", rather than remaining a collection of separate memories.

The hippocampus thus plays a fundamental role in episodic memory, the kind that will let you remember this especially pleasant dinner party years later. In fact, it seems to be the hippocampus that enables you to “play the scene back”, by reactivating this particular activity pattern in the various regions of the cortex. This phenomenon would be very important during dreams, and would explain the incorporation of events from the last few days into them.

But after a while, these various cortical regions activated during an event would become so strongly linked with one another that they would no longer need the hippocampus to act as their link. 

Thanks to this linkage, the memory of a piece of music that was playing that night could be enough to bring back the entire scene of the dinner party. Each of these elements could act as an index entry that lets you retrieve all the others to your consciousness.

Thus, information that has been encoded in long-term memory for a lengthy period of time no longer requires the intervention of the hippocampus. This is the case in particular for general knowledge in semantic memory, which instead activates the frontal and temporal cortexes. The activity in the temporal lobe would correspond to the activation of the fact in question, while the activity in the frontal cortex would correspond to its reaching consciousness.

Unlike our memory of facts and events, however, our spatial memory appears to be confined to the hippocampus. And more specifically to the right hippocampus. This structure seems to be able to create a mental map of space, thanks to certain cells called place cells.

Some very intense personal memories that bring what is sometimes called emotional memory into play appear to involve another structure of the limbic system besides the hippocampus. This structure is the amygdala, which is already known to manage our reactions to fear. Many other structures in the limbic system also help to encode our long-term memories.

Lastly, procedural memory, such as knowing how to ride a bike, does not appear to involve the hippocampus at all. Instead, procedural memory appears to be associated with modifications in the cerebellum, the basal ganglia, and the motor cortex, all of which are involved in motor control. As evidence to this effect, procedural memory is not affected by amnesia caused by lesions to the hippocampus, but is affected by damage to the cerebellum and by neurodegenerative diseases that alter the basal ganglia, such as Huntington’s disease.


But wait! There's more... BRAIN STEM! BRAIN STEM!

SENSORY, SHORT-TERM AND LONG-TERM MEMORY

Sensory memory is the memory that results from our perceptions automatically and generally disappears in less than a second. It includes two sub-systems: iconic memory of visual perceptions and echoic memory of auditory perceptions.  
Short-term memory depends on the attention paid to the elements of sensory memory. Short-term memory lets you retain a piece of information for less than a minute and retrieve it during this time. One typical example of its use is the task of repeating a list of items that has just been read to you, in their original order. In general, you can retain 5 to 9 items (or, as it is often put, 7±2 items) in short-term memory.

Working memory is a more recent extension of the concept of short-term memory. As techniques for studying memory have become more refined, it has become increasingly apparent that the original conception of short-term memory as a mere temporary receptacle for long-term memory is too simplistic. In fact, it is becoming increasingly clear that there is no strict line of demarcation between memories and thoughts. In order to test some hypotheses that may provide a better understanding of this complex phenomenon, the concept of working memory has therefore been advanced.

Working memory is used to perform cognitive processes on the items that are temporarily stored in it. It would therefore be heavily involved in processes that require reasoning, such as reading, or writing, or performing computations. One typical example of the use of working memory is the task of repeating a list of items that has just been read to you, but in the reverse of their original order.

Another good example is the task of simultaneous interpretation, where the interpreter must store information in one language while orally translating it into another.

Working memory appears to be composed of several independent systems, which would imply that we are not aware of all the information that is stored in it at any given time. For example, when you drive a car, you are performing several complex tasks simultaneously. It is unlikely that all of the various types of information involved are being handled by a single short-term memory system.



Copyleft
The content of  this post - All About Memory - is under copyleft.

The concept of "copyleft" is a method of providing free access to the results of original work and of encouraging people to reproduce and even modify this work on an equally free basis.

Copyleft is thus diametrically opposed to the traditional concept of copyright, which nowadays people seem to be trying to use to cover absolutely everything, from genes to intellectual property. In the libertarian spirit, the concept of copyleft promotes freedom of expression and staunchly opposes the idea that knowledge can be the private property of a small elite. So, feel free to copy or link to the contents of this post for noncommercial use.

BRAIN STEM! BRAIN STEM! ...make it stop....



Comments are welcome.




Tuesday, December 14, 2010

My Brain With bvFTD - Parts Of The Brain

BRAIN STEM! BRAIN STEM!

I wanted to review the general parts of the brain before going into some detail on working memory, and here is the absolute best.




BRAIN STEM! BRAIN STEM! 




Comments are welcome.

Tuesday, December 7, 2010

FTD: It Could Be worse...

...it could be raining!

“It's better to be an optimist who is sometimes wrong than a pessimist who is always right”
 
“In the long run the pessimist may be proved right, but the optimist has a better time on the trip.”  - Daniel L. Reardon 

So... everyplace I look I see the same things:

There is no cure for Frontotemporal Dementia.

There is no treatment for Frontotemporal Dementia.

There are no approved drugs for Frontotemporal Dementia.

Frontotemporal Dementia is a progressive disease.  Yadda... Yadda... Yadda... and then you die!

No matter what you call it, Pick's Disease, FTD, bvFTD, FTLD, or  Frontotemporal Dementia it doesn't matter.  At this time nobody knows much about it. Current research is just beginning to unravel the chemical pathways in the brain that lead to the atrophy of the frontal and temporal lobes. Nobody yet knows exactly what causes it, or why it happens. Doctors currently cannot even agree on precisely how to describe it, or to even diagnose it. To oversimplify it, it is known that there is some breakdown of some kind for some reason of the pathway involving Tau Proteins in the brain causing aggregations and atrophy. Not much to go on, but more is being learned about it every day.

So what does all this pessimistic crap mean to me with FTD?

1. There is no cure. OK, all that means to me is that the FDA and the AMA etc. have not approved a cure. The research is still inconclusive, and barely in its infancy.  I am sure there actually is a cure out there somewhere just waiting to be recognized. This does not by any means say that FTD is incurable, just that at this time there is no standardized approved treatment. Which leads to...

2.There is no treatment. Actually there are many treatments, but none of them are recognized to be effective at this time by the health care industry. Almost everything that is looked at in the research seems to have some beneficial effect. Seriously! If they look at exercise, it seems to help. If they look at Ginkgo Biloba, it seems to help. If they look at the drugs approved for Alzheimer's, they seem to help. If they look at other herbal remedies, they seem to help. When they look at pain killers, massages,  aromatherapy, prayer, Diabetes Drugs (Metformin), wine, sex, vitamins, hugging your pet - whatever - it seems to help. The problem is that when someone else looks at the exact same thing it does not help. Every case of FTD is different. So what this is telling me is that every case of FTD probably needs to be treated differently. Duh! This is never going to work in our current health care system where Doctors treatments are standardized, and usually dictated by the insurance companies and other medical institutions. Maybe some day there will be an approved treatment, but until then I am on my own to figure out what if anything works for me and my particular flavor of Lime Jell-O. Until there is a treatment for what causes FTD the best I can do is try to figure out if anything helps to manage my symptoms. If I am lucky something that helps with the symptoms might also help with the cause. So what if the odds are against it, and the probability is low? I have already found some things that seem to help, and some that do not. I already have started to develop an approved treatment for me - approved by me. So, do not tell me that there are no treatments available. I know better.

3. There are no approved drugs for Frontotemporal Dementia. That is simply because the disease is rare compared to other forms of dementia, and there is no economic incentive to develop or test a drug specifically for FTD. This does not mean that the drugs currently available for other approved uses are not effective in treating FTD, only that they have not been tested specifically for FTD. It does not mean new drugs will not be developed.  Which brings me to Herbal and Homeopathic Remedies.  No Herbal Remedy (and I use the term in its broadest sense) is approved by our health care system for treating anything - and that would include eating limes to cure Scurvy.  The way the law is right now in the United States if it said on a bag of limes at the grocery store that they cured Scurvy they would be classified as a drug by the FDA. Limes cure Scurvy! How is that for a dietary supplement treating a disease? To me saying there are no approved drugs is not the same as saying that there are no drugs available which would be effective for FTD.

4. Frontotemporal Dementia is progressive. What they are saying is that you get it, and it gets worse, and worse, and then eventually you die. Yuppers! To me that means if you sit around on your ass doing exactly what you were doing that got you into this mess it is progressive. I am sure that in that case it is true. Really now! Nobody can even agree on how to describe FTD, and they are out there telling us it is progressive like it is carved in stone. Maybe it is my demented logic, but I do not look at it that way at all. I do not believe that the progression is inevitable. It is not natural for my brain to be dying, and dying particularly fast in the frontal and temporal regions. Something has caused this to happen. It is unlikely it is genetic in my case, so that points to something behavioral or environmental. Well! Duh! If something behavioral or environmental can cause it, it can damn-well un-cause it too! If it can't be reversed, maybe it can be slowed down, or arrested. Nobody really knows because nobody has really looked yet.

So again -

So what does all this pessimistic crap mean to me with FTD?
What am I going to do?

For as long as I can, and as best that I can, I am going to search for things that help, and I have no intention of just sitting around on my ass waiting for somebody else to figure it out ten years after I am dead. Maybe it is futile. Maybe false hope. Maybe just something to occupy my time.  Maybe it will work. Maybe I will find something that slows the progress. Maybe I will find something that makes my day-to-day existence easier. Maybe I will find something that reverses some of the symptoms. Maybe I will find a cure. Maybe nothing will work, and I will march slowly towards that inevitable long night. In any case, as long as I can, I am going to fight! I am not yet ready to just give up and go quietly.

Do Not Go Gentle Into That Good Night

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on that sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas

(Dear Rodney, Thank you. May you rest in peace. You will always have my respect. - Lee)




















...fight like a fish in a blender ...but tomorrow, I think I will sleep in...

Comments are welcome.

Monday, December 6, 2010

Milestone - 5000 page views

Sometime around December 7, 2010 there were over 5000 page views on this blog since the time it was possible to gain such valuable information. I think they started tracking it around June, and my blog got listed on the search engines sometime in July. Anyway - It is nice to know that somebody out there visits now an then. I hope you find something here for you.

Here are a few of the places (in arbitrary but somewhat random order) where readers are interested in reading about bvFTD and found their way to my Frontotemporal Dementia bvFTD blog:
United States
Canada
United Kingdom
Malaysia
Russia
Germany
Latvia
Netherlands
Croatia
Slovenia
Australia
France
Ukraine
Romania

Below are a few of the search terms that people used in Google, Yahoo, or even that other one to find my blog.
bvftd
dysexecutive syndrome symptoms
comportment
dementia and lexapro
bvftd stages
bvftd.blogspot.com
cider stopped bubbling
dementia ritalin
dysexecutive syndrome
frontotemporal dementia alternative treatments

Next to Google, the AFTD web site refers the most readers to my blog.

So, all I can say is,
Thank you! Over 5000 page visits! How cool is that?!

Read ...Comment... and don't forget to visit Amazon and buy a bunch of stuff ...but mostly, just ...Thanks

Some days are better than others.

Please visit again soon.

-Lee

Friday, November 26, 2010

FTD Thanksgiving - With A Little Help

I love the holidays, but I am always glad when they are over.

A Turkey!
The holidays are stressful for most everyone. I have always had a particularly difficult time during the holiday season. For me, with FTD, they are even more stressful today than ever before. Everything seems to be intensified during the holidays. It is a time for old traditions, and forging new ones. It is a time for family and friends. The holidays are loaded with memories. I think that is why the holidays are so important. It is this association with the memories of all of the holidays past that make them stressful, and depressing, and sad, and happy, and wonderful. It is a time when everything in the present is magnified by everything in the past.
Another Turkey!

For me with bvFTD, every holiday is now my last holiday. This Thanksgiving is my last Thanksgiving.  Those close to me think this is a depressing thought, but for me it is just reality. That is simply how it is living with FTD.

I Made This Wine!
As I was reflecting on the upcoming Thanksgiving feast, planning for weeks on cooking a huge 20 pound turkey. What kind of potatoes to make this year - note to self... NEVER add Parmesan cheese to the mashed potatoes like we did last year cuz the texture is slimy and gross - actually that was two years ago cuz last year I was very sick with Swine Flu and did not celebrate Thanksgiving at all. But I digress... Should I bake a couple pumpkin pies from scratch using real pumpkins? Yes - because I love making pumpkin pie. Nobody likes green bean casserole, but maybe a sweet corn casserole instead. When I make the ham this year I gotta remember not to use quite so many cloves, and a little more brown sugar with the ginger ale. Must have cranberry sauce, and maybe make my famous cranberry mousse. (Not this year!) Can't forget the stuffing. Keep it simple with the stuffing. I had been planning this holiday for several weeks, and looking forward to it. I love to cook, and it is rare that I get to cook a complete dinner for six, or even 8, or maybe 10 people. It is even more fun when other cooks help with the cooking. We were looking forward to adding some good southern cooking. The more the merrier! This holiday was going to be one of the best with almost everyone I love all sitting around the same table enjoying the feast we all put together. This is my last Thanksgiving.

A Beautiful Table!
Of course it being the holidays disaster struck. As usual during the holidays something goes wrong. It seems that this is the time of year when some take it upon themselves to do everything in their powers to ruin everyone else's holidays. I guess it is just a part of the season, but I never get used to it. I am always surprised how cruel and hurtful people can get during this time of year. Anyway - A few days after I had spent about $300 shopping for up to ten people for a huge Thanksgiving feast which would feature a twenty pound turkey as the centerpiece I was informed that I would only be serving three people for dinner. This big feast had been planned together for a month or more in advance. It had taken me weeks to plan for the holiday dinner. Planning is now very difficult for me. I tend to run, and rerun, and envision my plans over and over to get them firmly entrenched in my mind. After planning and preparing for weeks it is very difficult for me to change plans on short notice. I just fall apart. When plans change at the last minute my stress levels go up right through the ceiling.

Pumpkin Pie!
I am blessed after all of the planning, hurt, and regrouping, to be able to say that most of the people who I love most, and who love me, will still be sharing my table at Thanksgiving. The four of us will feast on the replacement 12 pound turkey, and still have all the trimmings. The pies are wonderful, but I am sure we will burn something, and enjoy it anyway as always. That is half the fun of the feast. I will be eating leftovers well into next summer, and sending a ton of food along with each when they leave. My food budget is blown for the month. We will still have enough food for ten people, or more!

This is my last Thanksgiving, and it will be wonderful. I will always remember who sat at my table, as I remember every Thanksgiving from years past - both the good and the bad. The memories of the songs in our hearts, the smiles, the laughter, and the wine will last forever - but I will never be the same. I will never be here again. Thanksgiving will never be the same for me. Every holiday is my last.

Every holiday is my last holiday because I have FTD. Frontotemporal Dementia is a progressive disease. There is no cure. The is no treatment. Every day I am just a little worse than I was the day before. Every day more of my brain is turning to Lime Jell-O. This Thanksgiving is the last Thanksgiving I will ever be the way I am today. Tomorrow I will not be the same. Next year I will not be the same. This is my last Thanksgiving, until the next one. By next Thanksgiving my disease will have progressed a whole year. At best I may be 90% of what I am today, maybe much less. I may still be able to cook, or help with the cooking - I may not. I already needed help to prepare the feast. Others may still not be able to notice anything is wrong with me. Maybe they will. The change is inevitable - slow and steady - or in fits and jumps. However it happens, it will happen, and next Thanksgiving will be different. This is my last Thanksgiving as I am now.

That is why I now look at every holiday as my last - because I am changing, and I will never be here as I am today. By next year I will be a different me. While others my age have many more Thanksgivings to look forward to, this is my last. Every holiday is my last. I cherish the present more than ever before, and am happy to share my Thanksgiving with the ones I love the most. I have much to be thankful for this year.

Oh, and the feast was feasted upon, and merry merriment was made, and all were stuffed full of turkey with all the trimmings. We almost burned the rolls, but thanks to a last minute save when my son remembered they were still in the over not this year. It is a tradition to burn the rolls. My youngest son and I had a "Ham Throwdown".  His Honey-Mustard Ham recipe vs. my Ginger-Ale Brown Sugar & Clove Ham recipe. Of course I won, but it was REALLY close. Both are delicious! We may have to try combining the two recipes and see how it tastes.

Real Friends Do The Dishes!
Everything came out great. Great food - Great children - and Great Friends! Some friends stopped by after dinner just for a visit. Kroozer got along well with Samantha, my surrogate dog. We played some Guitar Hero, and Mario. I do OK with Guitar Hero, but my symptoms make the racing game much more difficult, but it is still fun. We stayed up late watching a couple movies. It was a wonderful last Thanksgiving ...until the next one. I am thankful.

Just a note about Kroozer. He was having a wonderful time once he got used to all the extra commotion in "his" house. He was spoiled by everyone. He got fed so many little treats from the feast that he finally puked. Now you know it is a really great Thanksgiving when the skunk barfs! Another new tradition has been forged.

*****
Today is now Black Friday. The dishes are all done. The house is quiet.  Kroozer is checking to make sure nothing is missing. I survived yesterday just fine, and though I was aware several times of my FTD symptoms they were not totally debilitating. Forgetting where I set something, stress, and getting steps out of order were the most noticeable to me. Of course dinner, and the whole holiday as mentioned above, took much longer to plan, and I had to hibernate a few days to totally re-plan it at the last minute. My kitchen was delightfully chaotic. My boys, our friend, and I all worked like a well-oiled machine. My boys are both very good cooks, and know their way around a kitchen. I put the turkey in the oven, and started the mashed potatoes while things were still quiet. I made the pumpkin pies a couple days before. After I took the turkey out I was feeling a little overwhelmed. It is difficult for me to "keep up" when things get moving really fast. I felt a little panicked. I sat down, and watched as my kids took over. They whipped out the mashed potatoes, stuffing, corn casserole, and the ham with no trouble at all. They tasted, tweaked, and even sautéed extra celery and leeks for the stuffing, and made a quick run to the store for sour cream and Cool Whip. Our friend was right in there helping to slice, dice, and supervise. I could never have done it without them. Some days are better than others. It was a good day. And again, I am thankful.

I think I will hibernate for a few days to recover...

Comments are welcome.

Friday, November 19, 2010

AFTD Newsletter - Check Out Page 10

The following is a complete copy of the email sent from AFTD announcing the latest issue of their newsletter. What makes this one of special interest on this blog is that you will see my smiling face at the bottom of page 10. Explore the AFTD website to learn more about FTD, and feel free to donate if you want to. This is the only organization expressly devoted to FTD, and is one of the most helpful and informative around. A special "Thank You!" to Susan for allowing me to use some information from the AFTD website, and to Chuck for his encouragement in posting my story on their website. Check it out at the links in the following post.

Dear Friends,

There is a lot happening here at the Association and in the field of frontotemporal dementia. To catch up on some of the latest research, programs and events click this link to read our Fall newsletter. Features include a profile of AFTD Board Member Sylvia Mackey, wife and caregiver of NFL Hall of Famer John Mackey, and an interview with award-winning filmmaker Joseph Becker on his experience documenting FTD and its impact on families. Also, be sure to read What's So Funny?, a terrific article by Comedy Central's Nicole Savini, who says laughter can help you cope with FTD and make you a better caregiver! It's guaranteed to make you smile and might even make you laugh out loud!

http://www.ftd-picks.org/wp-content/uploads/2009/02/AFTD-Newsletter-Fall-20102.pdf

AFTD's various programs and services are made possible by the generous contributions of friends like you who are helping change the lives of people affected by FTD. Lives of people like Bill and Sue Bishop and their son, Brad, who has FTD (read their story in the next link). Please consider giving generously to the 2010 annual appeal so that AFTD can continue helping people like the Bishop family, while creating a more hopeful tomorrow.
  

To make your gift online, go to Donate Now! at www.ftd-picks.org
  
On behalf of all of us at AFTD, best wishes for a very Happy Thanksgiving!

Susan L-J Dickinson, MS
Executive Director

Wednesday, November 17, 2010

My Frontotemporal Dementia And Alternative (Herbal) Medicine - Quack! Quack!

Woody Allen said: "My brain? That's my second favorite organ."

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD (Frontotemporal Dementia - Pick's) is different. Keep in mind as you read this that the person who wrote this has dementia - bvFTD. That would be ME.
Medical Disclaimer

There are no approved drugs at this time for FTD - Frontotemporal Dementia - Pick's Disease. There are several drugs approved for Alzheimer's Dementia which are widely prescribed for patients with FTD and bvFTD.

Four drugs have shown at least modest benefit for Alzheimer's disease or non-Alzheimer's dementia: Reminyl, Exelon, Aricept, and Cognex. These medications usually produce a modest improvement in mild to moderate Alzheimer's disease by increasing the duration of action of acetylcholine. However, they can cause sometimes severe side effects due to the exaggeration of acetylcholine's action in other parts of the body. They may be of some benefit, or not. Research results, when there are any available, are often conflicting. Every case of FTD is different.

Ginkgo
So, what about non-traditional medicine? What about dietary supplements and herbs? Spices? Mushrooms? Vitamins? In my opinion since nobody seems to know much for certain about treatments for FTD, as long as it isn't doing any harm, it is worth a try. All there is to lose is a few bucks to put in the pocket of a quack supplement company. All there is to gain is a slowing of progression, or easing of symptoms. Is it worth the gamble? For me, I think it is. But caution is in order.

Whether the herbs are effective as claimed or not, they do interact with medications and each other. Uninformed multiple herb use can lead to unexpected side effects, toxicity, and even death. The greater the number of medications taken, the greater the number of possible interactions. I checked with my doctors first, and plan to keep them informed on what I am taking just to be safe.

So, I did some research. For me, with FTD, that means a few weeks of research.  Thinking is hard. This whole idea started when a friend sent me an email about some weird mushroom and dementia. I thought she was crazy. Come on! A mushroom? Well - I looked it up on the internet - and we all know that if it is on the internet it must be true! That is how this all started.

The first thing I wanted to do was to try and find some actual scientific research studies on the effectiveness of specific herbal supplements on dementia. I also wanted to see studies debunking supplement claims for treating dementia. Anything written by a company that sells the stuff doesn't count for obvious reasons. Virtually all of the research deals with Alzheimer's Disease, so making the jump to say it benefits Frontotemporal Dementia is a big assumption. That is the assumption I am going to make based on the wide practice of prescribing Alzheimer's drugs for FTD. I realize that the chemical pathways of the diseases are not exactly the same, but for now that is the best I have to go on.

One of my assumptions is that if FTD is based on an atrophy of the Frontal and Temporal Lobes of the brain because of a build-up of Tau Proteins anything which causes brain cells in general to increase in number is going to be on the right track. In my case my MRI has shown severe brain atrophy so I am very interested in increasing brain volume. Bigger is better! I figure if I can increase the number of brain cells, my brain will figure out how to hook them up to work where it needs them most. Likewise anything which helps to prevent brain cells from dying is also on the right track. That is my basic criteria. If there is something which may help alleviate the acute symptoms by helping with cognition or memory that would also be a good fit for me.

I checked on Fish Oil, and found that there was no evidence that it was beneficial in any way. I find it disgusting, so I was very pleased. Omega 3 Fatty Acids are available from other sources, which do not come back to haunt you. As a side note (according to Dr. Oz!) if you keep it in the refrigerator it helps because it does spoil, and that is when it really causes those bad fishy-belches. Yuck!

There has been a lot of controversy of late on the effectiveness of Ginkgo Biloba (Which if nothing else is fun to say!). In my personal opinion, the jury is still out. The study which showed it did not have a significant effect was on patients so old and advanced I am amazed they survived to the end of the trial. At the very least the research is "conflicting". The other is Phosphatidylserine. I had never even heard of this one. Following is a widely quoted synopsis of the effects of these two herbal supplement natural treatments on dementia.

I found the following, and some other good info at the Health Library. . (I took the liberty of removing the footnotes.)

There are two natural treatments for Alzheimer's disease with significant scientific evidence behind them: ginkgo and phosphatidylserine. Huperzine A and vinpocetine, while more like drugs than natural remedies, may also improve mental function in people with dementia. Acetyl-L-carnitine was once considered a promising option for this condition as well, but current evidence suggests that it does not work.

Ginkgo - Ginko... whatever!

The most well-established herbal treatment for Alzheimer's disease is the herb Ginkgo Biloba. Numerous high quality double-blind, placebo-controlled studies indicate that ginkgo is effective for treating various forms of dementia.  One of the largest was a 1997 US trial that enrolled more than 300 participants with Alzheimer’s disease or non-Alzheimer’s dementia.  Participants were given either 40 mg of Ginkgo Biloba extract or placebo 3 times daily for a period of 52 weeks. The results showed significant but not entirely consistent improvements in the treated group.

Another study published in 2007 followed 400 people for 22 weeks, and used twice the dose of ginkgo empl
oyed in the study just described. The results of this trial indicated that ginkgo was significantly superior to placebo. The areas in which ginkgo showed the most marked superiority as compared to placebo included, “apathy/indifference, anxiety, irritability/lability, depression/dysphoria and sleep/nighttime behavior.”

On the other hand, one fairly large study of ginkgo extract drew headlines for concluding that ginkgo is ineffective.  This 24-week, double-blind, placebo-controlled study of 214 participants with either mild to moderate dementia or ordinary age-associated memory loss found no effect with ginkgo extract at a dose of 240 mg or 160 mg daily. However, this study has been sharply criticized for a number of serious flaws in its design.  But in another community-based study among 176 elderly subjects with early-stage dementia, researchers found no beneficial effect for 120 mg of ginko extract given daily for 6 months.

The ability of ginko to prevent or delay a decline in cognitive function is less clear. In a placebo-controlled trial of 118 cognitively intact adults 85 years or older, ginkgo extract seemed to effectively slow the decline in memory function over 42 months. The researchers also reported a higher incidence of stroke in the group that took ginko, a finding that requires more investigation.

In a 2009 review of 36 randomized trials involving 4,423 patients with declining mental function (including dementia), researchers concluded ginkgo appears safe but there is inconsistent evidence regarding whether it works.



Search Amazon.com for ginko biloba

 OK, that is a start. Here is another which I think may be promising, and is widely available and has a good safety record.


Melatonin. I found a whole bunch of studies which suggest that Melatonin may stimulate the growth of brain cells, and help protect them from dying. Since it also helps you get a good nights sleep I figure it is worth a try. If it doesn't have any adverse side effects it falls into the "Can't hurt" category.

 Search Amazon.com for Melatonin



Phosphatidylserine (PS)

Phosphatidylserine (PS) is one of the many substances involved in the structure and maintenance of cell membranes. Double-blind studies involving a total of more than 1,000 people suggest that phosphatidylserine is an effective treatment for Alzheimer's disease and other forms of dementia.

The largest of these studies followed 494 elderly subjects in northeastern Italy over a course of 6 months. All suffered from moderate to severe mental decline, as measured by standard tests. Treatment consisted of 300 mg daily of either PS or placebo. The group that took PS did significantly better in both behavior and mental function than the placebo group. Symptoms of depression also improved.

These results agree with those of numerous smaller double-blind studies involving a total of more than 500 people with Alzheimer's and other types of age-related dementia.


I had never even heard of this chemical, so I looked it up on WebMD. The above studies were all conducted on the chemical derived from cow brains, so since the form now available has changed it is possible the effects have also. There is an irony when a chemical derived from a cabbage may help with brain cell structure - I'm just sayin'...

Anyway - according to WebMD:
The body can make phosphatidylserine, but gets most of what it needs from foods. Phosphatidylserine supplements were once made from cow brains, but now are commonly manufactured from cabbage or soy. The switch was triggered by a concern that products made from animal sources might cause infections such as mad cow disease.

Phosphatidylserine is used for Alzheimer's disease, age-related decline in mental function, improving thinking skills in young people, attention deficit-hyperactivity disorder (ADHD), depression, preventing exercise-induced stress, and improving athletic performance.

There is currently no standard recommended phosphatidylserine dosage. In studies, doses of 100 mg three times daily have been used to treat Alzheimer's disease, dementia, and age-related declines in cognitive function. Studies have also used doses of 200 to 300 mg daily for ADHD treatment. However, it is not known whether these are the most effective and safe phosphatidylserine doses.


Phosphatidylserine sounds very promising because it specifically targets the cell structure of the brain. It is the collapse of the Tau Protein in the cell structure that is believed to be the major cause of Frontotemporal Dementia. At least that is what I have read if I am understanding it correctly. It seems to be a different pathway from the tangles associated with Alzheimer's Disease.

 Search Amazon.com for Phosphatidylserine


And lastly, the big one. The one that started it all. The one which sounds the most ridiculous. Even more ridiculous than a cabbage-head.

Lion's Mane Mushroom



 Yup! A mushroom. Not just any mushroom, but a scraggly thing that looks more like a pile of old shriveled up spaghetti than a 'shroom. My biggest reservation with Lion's Mane is that almost all of the research is done by a single scientist in Japan (Kawagishi, H.) - who also just happens to be the one who sells an extract and methodology for producing it. That said, there is also some replication of his research, and it is so strong that if it is actually sound it is worth a shot. Lion's Mane seems to promote the regeneration of brain cells by providing a precursor of the neural growth hormone which can pass through the blood-brain barrier. Since there are like zero side-effects on this one - I am in. At least it is worth a try, and it is now widely available at a reasonable price.

 Search Amazon.com for Lion's Mane


All of the other herbal remedies I have researched seem to me to be based on anecdotal evidence, sales propaganda, or have no research to support the claims. There are a few which fall into the category of spices such as Turmeric that I may add to my cooking when convenient, but nothing that I think will have any real benefits. I already use Sage, Olive Oil, Hot Peppers, and Garlic on a regular basis, and am working on using more Curry, so I think I have that category well covered. Wine is good, too!

I made my monthly visit to my neurologist this morning. Since I was there I asked him if he thought there was any danger in trying any supplements. His first answer was that all he recommended was a general daily multivitamin. When I explained I was not talking about vitamins, but some herbal remedies, he said it was OK to try them after we discussed exactly what I was considering. I was surprised he was not more of an advocate because of his Egyptian heritage, but he, like me, is a skeptic. My main concern was for some interaction with the drugs I am taking, and from that perspective he basically said I was OK to try some alternative treatments. Melatonin was the one I was most concerned about because of its interactions with choline, but he said I could give it a try.

I estimate the total drug-store cost of all of these supplements to be around $35 a month without Phosphatidylserine, and twice that with it included. Amazon prices are much better for the exact same products. That is a pretty hefty expense... unless they have the benefits attributed to them. In that case it would be a bargain at any price.

I am not planning on starting to take all of these right away - just the Melatonin and Ginkgo Biloba because they happen to be on sale right now, and have a good track record. I am going to wait, and think it over. I need some additional input from some non-demented minds. If I do decide to try them I will probably start them one at a time just to be cautious. All of these have published double-blind research studies of at least some sort to show that they may have an effect - though some of the methodology/analysis is questionable. That is promising - better than what is available for most vitamins.

Quack! Quack! ...Quack?

For right now I am still evaluating the benefits - if any - of taking Aricept. As of two days ago I increased my dose from 5 to 10 mg. It is too early to tell for sure, but the early results have been very positive once I got past the sometimes frustrating side-effects. But that is the subject of a future post.

Comments are welcome.

Thursday, November 11, 2010

Apple Cider - The Hard Way

Accidents happen.

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD (Frontotemporal Dementia - Pick's) is different. Keep in mind as you read this that the person who wrote this has dementia - bvFTD. That would be ME.

But - Just because I have FTD doesn't mean I can't still have some fun. Every day isn't all bad. Some days are better than others.

It is Fall in Northwestern Ohio. The air is clear and crisp, leaves crunch underfoot, and it is the time for apples, and for Apple Cider. I was going past the local apple orchard, and decided to stop in and get a gallon of fresh cider. It looked so good I purchased 2 jugs of it.

I stuck one in the refrigerator, and left the other on the kitchen counter because there was no room for it in the fridge - and that is how it all started.

The cider from the fridge was sweet, cold and delicious.

Cider & bubbler.
oops! After 2 days the cider on the kitchen counter was a little foamy. By the third day I had to loosen the cap to vent the pressure. I left the cap loose, and let it "work" for a few more days without hardly tasting it at all. It hardened up nicely, and didn't last very long. So much for the first gallon.

I have not made hard cider in about 40 years. I had a next door neighbor way back when I was in High School who had a big wooden cask in his garage. Every Fall that cask was bubbling away "working". That is where I learned how to make Hard Cider, and how I learned to carry it a little farther to make a wonderful Apple Wine. That is also when I learned to enjoy drinking it while sitting around swapping hunting stories and the like.

Carboy with last batch.
I had made a quick fermenting bubbler with a short piece of tubing, and a jar of water. I decided to actually purchase a couple commercial bubblers from the local wine-making shop. They are just easier to use, take up less space, and don't make a mess. When I was at the wine-making store I also purchased some champagne yeast which is the type recommended for making Apple Wine from Apple Cider. I got 5 gallons of Apple Cider from the orchard, and dumped it into a 5 gallon plastic water bottle with about 3 pounds of light brown sugar. I just followed the normal steps for making wine.

After about a week it stopped bubbling, so I racked it off back into the original gallon jugs the cider came in. Everyone wanted a taste, and maybe a few glasses. Most of it was gone before it even had time to completely clear and settle. Since most of 5 gallons evaporated so quickly I decided to make a little more, and to make it just a tad stronger by adding about 8 pounds of light and dark brown sugar. Search Amazon.com for Wine Making equipment


Racked off to settle and clear
This batch came out a little drier, and has a warm brownish color from the molasses in the sugar. It came out so well, that I decided to make another batch while the fresh cider was still available.

For this last batch I have added 12 pounds of sugar, and I am aiming for about 20% alcohol. This is about as high as I can expect for the champagne yeast I am using. Just for fun I also added a little ginger, clove, and cinnamon. This last batch is happily bubbling away as I write this. (Update 1: This came out too sweet for me, but VERY strong)








 ***
Update 2:
Final Best Apple Wine Recipe of 2010 (5 gallons)
5 Gallons Apple Cider with no preservatives
4 pounds Light Brown Sugar
4 Cups White Sugar
Yeast Nutrient + Pectin Enzyme + EC1118 Yeast per package instructions
Ferment... Rack as necessary... Finish, and Bottle
Optional:
Back-sweeten with 2 ounces Honey + 8 Ounces Frozen Apple Juice Concentrate/Gallon for an off-dry wine which reminds me of the best Rieslings.
 ***


Other than maybe the fact that I am making apple wine in the first place  (15 gallons!) I have not noticed any major problems with my bvFTD. The process is so simple, and really can't be messed up too badly. I did do some reading on the Internet to confirm what steps I needed to take, and then just followed the directions. I re-read the directions many times, and finally found a calculator on a web page to figure out the math for how much sugar to add. Most of it was using simple kitchen skills like mixing the sugar into some cider to dissolve it before adding it to the mix. I was patient, and just took my time working at my own pace. It was fun.

It all started out as an accident. Really! Accidental Apple Wine. It sure is better than Lime Jell-O!


This first batch tastes great!
So... what's next?





Cheers!










Comments are welcome.

Just a quick note: Apple Cider, or just plain Cider, in the United States is non-alcoholic cloudy-looking apple juice. Hard Cider is its naturally fermented alcoholic cousin. Apple Wine has a higher alcohol content because of the special yeasts used. In most of the rest of the world the word Cider means Hard Cider with an alcohol content about like beer.