Archive for the ‘Second Life’ Category



I am thinking about the importance of words.  I think most people take words for granted.

A friend of mine sent me an article by Tony Judt.  He wrote about the importance of words in this family when he was growing up, about the times in the beginning of the 1950s when speaking proper English was very important.  In college he was a master with words, but he didn’t really understand the importance of silence.

Over many years and during my illness I have learned the importance of silence.

A few weeks ago I went to see a play based on The Screwtape Letters by C. S. Lewis.  C. S. Lewis is one of my favorite authors and I will be talking more about his work in future.   In one passage Screwtape is advising his nephew Wormwood, a fledgling demonic tempter on Earth.  He suggests that Wormwood try to fill the human’s head that he is trying to corrupt with noise.  For if our heads are constantly filled with noise of people speaking, trains running, babies crying and dogs barking, we will never know the peace of silence and the knowledge that may come from within.

Tony says for him rhetorical flexibility allows for a certain feigned closeness, conveying proximity while maintaining distance. I see this in people who don’t walk the talk. I also agree in matters of language, outsiders are frequently deceived.

I remember that when I was the director of a health information department in a hospital, the director of human relations often sent down recruits who he believed were just right for the position I had requested.  He often based his decision on the person’s flair for words, what we call in Texas a bullshit artist.

I have always thought of language as a gift. When I was young I was too shy to speak so I wrote down my thoughts.   As I became older, I realized that many times people only listened to part of what I was saying to them because they felt like they needed to think about what they were going to say in reply. First to test this theory, then out of frustration that I was not being listened to, I would often stop in mid sentence.  Most people did not notice.  Has a pause/silence become so uncomfortable?

When Selch and I started dating, I would stop in mid-sentence and he would say “Yes, continue?”  I was somewhat flabbergasted realizing I had fallen into this rather lazy way of speaking.  Fortunately, I received enough prompting from him and was even able to finish my sentence even though it might mean talking over someone’s premature response.

As Tony wrote in his article many people talk the abbreviated language of Facebook and Twitter and texting.  It is still confusing to me because words used different ways can have so many ambiguous meanings.  I communicate on Second Life quite a bit.  Everyone has forgotten how to spell or they just don’t care about spelling anymore.  I will be texting with someone and am later shocked that I am talking to a philosophy teacher with a PhD.

We have voice on Second Life now which adds an interesting depth to conversations on Second Life.  If a person is speaking in text, it is easy to hide whether you are male or female.  Voice morphing software is available but they do sound like a male trying to impersonate a female or a female trying to impersonate a male

What I love about voice on Second Life is I have the opportunity to really speak with people from other countries.  Yes, there are some language barriers perhaps made worse by not being able to actually see the person but we usually seem to work it out and are for the better for having the experience.

I, like Tony when he wrote this article, am in the grip of a neurological disorder.  He says what I think so well that “the view from inside is as rich as ever.”  Fortunately, I am still able to speak fluently at times.  What you do not know is often it is a struggle to capture the words in my head and speak them out of my mouth or type them onto paper.

So many of my characters are suffering from locked-in syndrome.  For awhile they were all yelling at me, wanting me to tell their stories.  That is the way it has always worked.  I dictate the drama they play in my head.

In most people there is a control mechanism in their heads that they take for granted.  It is like a gate you walk through to get to the subway.  It helps order tasks and projects so that you aren’t constantly overwhelmed.

The reason it is hard for me to say or write my stories is the same reason I am unable to do activities of daily living even though I appear to be capable of doing these tasks which I’ve done all of my life.

I feel like there are so many tasks and I can’t do all of them at once, so I become paralyzed with fear and eventually I just give up.  The doctors term this apathy because that is what appears to be to them.  It is a much more complicated than that.

Now, my characters and ideas aren’t screaming at me.  They haven’t left me.  I spend much more time in silence now, contemplating, using Theeravada Buddhist mindfulness practices and saying  prayers.  This has opened up a world to me that many people cannot see because they are so busy living their lives and caught up in mortality, and noise.

I am not through using my words.  Selch is by my side, my life partner, helping me to pull expressions out that use to flow freely.

As Tony wrote, especially now in this world today, good honest communication is how we sustain and grow and solve the problems we are having in this country and in the world.  We were given the freedom of speech by God.  It is a gift that can be taken away.  Please use it wisely for ourselves and our future generations.

LIVING WITH FTD: People spreading the word about FTD.


In this post, I want to talk about people and groups who are spreading the word about FTD.  FTD is still a relatively unknown disease and it is people on the front lines and in the trenches who are doing good work to spread the word about FTD.  Many people believe FTD patients have little insight into their disease.  I am here to tell you there are a growing number of people with FTD who are well aware of their disease and going to great efforts to spread the word about FTD.

For those of you who don’t know, there is a wonderful chat group at The FTD Support Forum. We meet on Tuesdays and Fridays at 2:00 p.m. central.  My user name on the support forum is Mermaid.  Any of you who have FTD and are able to communicate or have a loved one who can help you communicate, I encourage you to join the FTD Forum.  There is a lot of support and good information at the forum.  Our chat group has many friendly folks who are waiting to welcome you with “open arms.”

If you want more information about the chat group, join the FTD Forum and send a private message to Mermaid.

Also, many people who have FTD  are doing wonderful things to spread the word about FTD.  John who has FTD   is very involved with the Alzheimer’s Organization.  He has been working with his local chapter and has recently been to Washington to speak to Congress about pre- senile dementia and FTD.

Tracy Mobley  has written an article as a guest blogger this month on about what it is like to live with FTD.

Susan Grant has finished her film Planning for Hope.  I really encourage everyone to go to her website, FTD-The Other Dementia.  She needs volunteers in all areas to help her with film distribution.

In addition, there are several people with FTD who have blogs and websites.   If anyone has an FTD/Neurodengerative Brain Diseases blog or website and I haven’t put you on my blogroll, please let me know.

In the next six months, I am planning to have a place on the virtual world, Second Life, for people with FTD, other Neurodegenerative diseases, chronic pain and those who are terminally ill.  More news on that later.

There is a Webinar on Thursday, April 29th.  It is Free Webinar Cognitive and Behavioral Issues in PSP. CBD and FTD with Dr. Brad Boeve. It is from 8 to 10 pm EDT and you can register at this link.  Some of the members of our chat group are patients of Dr. Boeve’s and I’m sure he has some valuable information to share.

Anyone who is doing projects to let people know what it is like to live with FTD or focusing on the lives of FTD patients please contact me.

I will keep you posted with updates about what is going on in the FTD world.

Updates on Pain


Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

Now I am going to give you some updates on pain.  I’ve been meeting many people in the last few months who have other illnesses and also have developed chronic pain disorders.  Many of them are suffering greatly because their doctors do not know how to treat their pain.  I encourage all of them to see a pain management specialist.  Unfortunately, as many of us know, even seeing a specialist is no guarantee that your pain will be controlled.

There is some new information in the American Pain Foundation’s Spring Newsletter.  For those of you who are interested in Occupational Therapy there is an article written by an Occupational Therapist.

In “Health Decision Putting Your Best Foot Forward,” the author talks about challenging the decision that the doctor knows best.  Most of us who have chronic pain disorders have found ourselves in the difficult position, should I listen to this doctor and go quietly out of his or her office without adequate support for pain control or should I speak up for ourselves and try to get the medication and therapies I deserve?

Getting adequate pain relief unfortunately often  means seeing several doctors until you find one that will really listen to you and agree to be part of your team in helping you achieve good pain control.

I have found that bringing Selch to my appointments has been a really big help.  Having someone go with you to your doctor’s appointment who is knowledgable about your condition and is willing to stand up for your rights goes along way in helping you to find  health care professionals that will help you with your pain.

If you don’t have a friend or a relative who can fill this role, I suggest that you check out local pain support groups in your area and see if you can find someone in the group who is willing to be a “patient advocate” for you.  If you can’t find someone locally search for support services available in pain foundations and also visit different pain support groups on the Internet.  Post that you are in need of someone in your are to act as a “pain advocate” for you.  You may not find someone right away but I’ve found that when I am looking for support, persistance matters.  If you are in too much pain, ask a relative or friend to do this for you.

I cannot stress how important it is for anyone with a chronic pain disorder to get the help they need to achieve good pain control.  Any of you that have other ideas and experience to share regarding finding help for pain control, feel free to reply to this blog post.

Karen Richards writes some interesting articles on pain.  See “Growing Pains, a Predictor of Fibromyalgia,” She refers to an article in Reuters and talks about misconceptions about growing pains and how growing pains may be an early indicator of fibromyalgia.

Another very interesting article by Karen is “War on Drugs Has Ended – What Does This Mean for Pain Patients?” If you have read my blog, you know that I have posted more than once about the “War on Drugs.” Karen writes, ” In May 2009, nearly four decades later, Gil Kerlikowske, the new director of the White House Office of National Drug Control Policy (ONDCP), declared the war on drugs to be over.”  This guy must not be living on the same planet as those of us with chronic pain disorders.

Health care providers and even pain management specialists in growing numbers are refusing to give people who have chronic pain the narcotics they need to function day-to-day in their lives because of past DEA actions, pending regulations and the constant media exposure of the continuing War on Drugs.  Totemism regarding narcotics is still prevalent.  There are still so many people saying that we need to get rid of these evil narcotics that are destroying so many lives.  Eliminating prescription narcotics will do nothing to stop people from recreationally using narcotics.  They will just go to another readily available source to get their drugs.  Pain patients are left without adequate pain control.  When will the media and the government start caring about the millions of people in the world who are suffering from chronic pain?

About the ONDCP’s educational efforts regarding the needs of chronic pain patients, I am afraid it is too little too late.

The Pain Monitor from the APF has some interesting info for people with chronic pain. It has news information about different pain topics as well as resources for chronic pain patients.

These are some pain updates for April.  As always, I hope to be your faithful correspondent.