Thursday, March 27, 2008

Elephants provide close up views of Tigers


Only if you get BBC One, will you be able to view the three part series premiering on Sunday March 30th. I am hopeful it will be re-released on either BBC America or the Discovery Channel. It is Tiger - Spy in the Jungle, narrated by Sir David Attenborough. The camera's were held by elephant's trunks or tusks and allow an up close and personal look at Tigers and other animals that are difficult to photograph with a human camera crew.

The cameras themselves are amazing. For example, a truck cam can be set down and run around on the ground, traveling right up to a tiger and panning up and down and right and left. There is amazing footage, collected over the three years of operation. They also used "Log and rock cams", some with robotics as well.

One amazing segment shows baby tigers at just 10 days old. If the link above doesn't work try the youtube link. The narration is good, and thankfully includes moments of silence that allow the sounds of the jungle to be heard. It is so lovely to watch the mother tiger caring for her tiny cubs with the natural sounds in the background.

Wednesday, March 26, 2008

Money can buy happiness, if you give it away.

A new study published in the journal Science (Vol. 319. no. 5870, pp. 1687 - 1688) suggests people who spend money on other people experience greater happiness than spending money on oneself. This held true in a nationally representative survey study and in a field study of windfall spending.

Personally, I wonder if the happiness is coming from spending the money on someone, or simply doing something kind and helpful for another. In other words, I expect that it can come from other kinds of compassionate actions as well as giving money. From my own experience I have found that being focused on helping another can lift me from sadness and depression. In fact, at one point in my youth this was the primary strategy for keeping my sanity and staying out of deep depression.

I would also suggest, that the focus does not necessarily have to be on another human, but also could be on caring for the earth, or animals, or your garden.

The report, Spending Money on Others Promotes Happiness, by Dunn, Aknin, and Norton can be found in the March 21st issue of Science.

Science 21 March 2008:
Vol. 319. no. 5870, pp. 1687 - 1688
DOI: 10.1126/science.1150952
http://www.sciencemag.org/cgi/content/abstract/319/5870/1687

Monday, March 24, 2008

Amyloidosis on TV

A woman on one of the email Amyloidosis lists is having her story highlighted during the "Mystery Diagnosis" episode on Monday, April 7 at 10:00 p.m., EST! The program is shown on the Discovery Health Channel (not to be confused with the Discovery Channel). The episode will describe her personal experience with the disease, from diagnosis to treatment. Spread the word! She hopes it will meet her high expectations and raise awareness.

Sunday, March 23, 2008

Amyloidosis Support Groups - Highlighted

Today I am highlighting the most active organization for Amyloidosis patients and the caregivers that I have found. Amyloidosis Support Groups (ASG) is a non-profit, 501 (c)3 corporation dedicated to "the Support of Amyloidosis patients and care givers and former care givers." Their goals are (from their site):


  • to form Amyloidosis Support Groups where needed

  • to have all Amyloidosis Support Groups be self sustaining through donations (general, memorial, note cards, and others)

  • to fund and maintain libraries of educational materials for all support groups

  • to fund group projects that will help in spreading awareness and fundraising for research

  • purchase awareness items such as pins, wristbands and other similar items for meetings, memorials, and fundraisers

  • to help finance the annual educational retreat for training new and current group leaders and facilitators

  • maintain 24/7 Toll Free Hot-Line


They maintain the most active email list for amyloidosis patients and their caregivers. It is a yahoo list that provides so much support and information. The president of ASG, Muriel Finkel, contributes actively and shares her expertise and support with the group on a daily basis. Thank you Muriel!

The Survivor Stories section of the site, offered me the first hope for remission. I didn't even know it was possible until reading the survivor stories. The Story of Kay Rowley seemed so similar to my own, and yet she was in complete remission. I gained so much hope from that story, and emailed the link to my family. The In Memoriam portion is also very moving.

The Patient & Care Giver Resources are exhaustive. There are patient assistance programs, advocacy organizations, and links to reliable disease sources. Also included are links to other organizations that may provide additional support, depending upon your specific situation. There are even links to managing stress, and your medical records. This is a wonderful resource.

Also included is a page with links to medical information and current clinical trails.

However, the resources for the support groups themselves are in some ways the most impressive. There are groups in every major region in the United States, and from the posts to the email lists they sound like people travel from surrounding towns and states to attend. Muriel Finkel and her board and support group leaders do an amazing job at having expert speakers and organizing special events. I look forward to attending my first meeting sometime soon.

ASG is also a member of NORD, the National Organization for Rare Disorders. This site also has useful information and includes an area for ASG blogging and sharing discussion.

They also support fundraising events by posting them and supporting the organizers with their expertise and other assistance. See also www.popsrun.org and www.bobkingmemorial.com

Thanks to ASG, Muriel Finkel, the board, volunteers, and all who make these services available to patients, family and friends effected by amyloidosis!!!


AMYLOIDOSIS SUPPORT GROUPS
ASG www.amyloidosissupport.com
Toll Free 866-404-7539
National Organization Member of NORD

Saturday, March 22, 2008

Good Friday Pilgrims on Tome Hill



It is a tradition in New Mexico for locals to make the journey to Tome Hill or Chimayo on Good Friday. People walk for miles, climbing the basalt hill to the crosses on top to demonstrate their faith, and in some cases, to atone for their sins. Some carry walking sticks and some drag giant crosses. These are photo illustrations of that pilgrimage.

Thursday, March 20, 2008

Sharon Salzberg Quote

“One of the primary conditions for suffering is denial. Shutting our mind to pain, whether in ourselves or others, only ensures that it will continue. We must have the strength to face it without turning away. By opening to the pain we see around us with wisdom and compassion, we start to experience the intimate connection of our relationship with all beings.” - Sharon Salzberg

Sharon Salzberg is the woman who wrote many books about loving kindness and compassion, including my favorite Loving-Kindness: The Revolutionary Art of Happiness.
You can hear many of her talks for free at Dharmaseed.org.

Monday, March 17, 2008

The music of my people...

In honor of Saint Patrick's Day, it is time for another YouTube video selection for your entertainment. Today I am sharing the West Limerick 102 Community Radio Concert held in Abbeyfeale on the 16th of November 2007. This is a selection of slides played by Paddy King (who took second place in the Senior Button Accordion competition at Fleadh Cheoil na hÉireann 2007), Jeremy Spencer on fiddle and Clodagh Buckley on keyboard. The first tune is a fairly recent composition by concertina player Timmy Collins. The video is just under 5 minutes long.

Thanks to Comhaltas for making it available. Comhaltas is a non-profit group that promotes Irish culture. They have a network of branches around the world where people gather to teach music, swap tunes and generally enjoy the craic. More info at http://comhaltas.ie.

Saturday, March 15, 2008

Minn Heima - Bluepoles Edit Final

My mom found this version of Minn Heima after viewing the one I already posted below. It's the Bluepoles version and the linkto a high resolution version comes up on the right. Don't forget to turn the sound on. Mom said it made her cry and that she love the music. It was also Sigur Ros but I don't know the specific track. To hear several tracks from their website visit http://www.sigur-ros.co.uk/.

My mom said...

"The tears came because of the link to you, not so much the music and sights themselves. It hurts me so much sometimes."

I hope you readers won't think it too sad, but it hurts me so much too sometimes... to look at the beauty in the world all around me and know that there may come a time, sooner than I want, when my eyes will close and won't reopen. Amyloidosis makes me appreciate every moment. Everything just looks so beautiful and every day is so precious.

Friday, March 14, 2008

The Corner House - Draft 1

The Corner House - All rights reserved © Martha Binford

This is a little vignette I wrote that I want to expand into a real story. I hope to get comments from others to help me improve it. I will post these as comments for this draft. Later drafts will follow.

(This is fiction; any resemblance to persons real or fictional is purely coincidental.)
--------------------

It's the sweet house on a corner lot owned by an old woman who has lived there since she was 19. Hers is the big house with the sun-room and the hand lettered poster board signs. One sign on the gate says "No strangers allowed" and the other on the adobe garage says "Leave my land alone".

She lives on the corner where cars make the turn to reach the new commuter train station. The traffic has quadrupled, even from when there were two crack houses down the street. Every weekday from about 5:30 am until about 7:30 at night the cars stream past her home to the train station. Every day the commuters rush into the new Railroad Cafe, freshly stuccoed and serving cappuccino and pastries. The man that owns the cafe wants to buy more houses in the neighborhood, to clean it up. He talks about creating a good clean neighborhood with morals. This doesn't impress her; it seems like robbery to charge over a dollar for a cup of coffee.

The train yard has never been clean, and the neighborhood has never been quiet. There were always the trains... the rhythmic "bangity bang" of the trains on the tracks, the train whistles, and the "bang clang" of the train cars coupling. Her husband worked in the railyard until he died. Most days he came home black with grease and petrolium. She rubbed lotion on his giant callused and cracked hands every night. They never came clean but she loved his touch. Her children were conceived to the sounds of the trains coupling. The trains meant a home for her family and provided a rhythm and stability to her life. Even the long night after he passed, she lay in bed comforted by the trains, listening, almost hearing him sleeping next to her.

Her children grew up in the neighborhood, but like many who spent their childhood in Benson they moved away at the first opportunity. Those that stayed never made much of their lives but they felt solace in the neighborhood and never left. The old woman knows most of the drug dealers from when they were children. They were pretty good kids too, not like you might imagine. They played ball in the streets with her boys. They never found work but found drugs instead.

They faded further and more distant while never leaving, sharing what was once their family homes with other addict friends. She watched houses fall apart, and become more filthy. The black trash bags multiplied in their backyards, growing brittle and spilling their contents in the wind. On walks she would sometimes notice hypodermic needles under bushes, and she knew times had changed. It was the sounds of the trains cleansed her.

The noise of boom cars and people arguing about drug deals or women replaced the sounds of children. She sometimes heard the "bang" of guns, as violence of all kinds increased among her neighbors. Occasionally there were police sirens but mostly the neighborhood was left alone to its internal trauma. The old lady minded her business and expected others to mind their business too. For the most part, life was good.

There was only one time she was afraid and called the police. Only once, to save the life of a woman being beaten in the street. The sounds of her screams woke her up, mixing with the train's "bangity bang" until they gave rise to something half-human and spine-chilling. Looking out her window into the darkness she could not see what was happening, but she could tell by the screams that the woman would die. The police arrived so quickly that she wondered if others had called before her. She watched and listened from her window as the police arrived, and then the ambulance. She believed they saved the woman's life, but she never knew for sure.

Now, strangers keep banging on her door telling her to sell. They don't ask, they tell. They know so little about her and her life that they insult her. They tell her she must be so tired of the the trains and the crime, and instead ready for peace and quiet. They tell her she will be "rich for life" and that she doesn't need "all that yard".

She watches from her window as the last of her neighbors leave. As soon as their houses sell, the work crews descend to dismantle the homes. The new townhomes and houses are too expensive for locals to purchase, and are sold to newcomers who commute on the new light rail train to the city. They ride the train, buy three dollar lattes, and know nothing of her neighborhood or her town.

So many want her house now. They don't know she will never sell. Now the sounds of cars rushing to the station, and the "bang bang" of hammers on roofs mix with the train whistles and "bangity bang" of the train on the track. The trains still comfort and purify her while the newcomers seem to busy to notice the magic.

Thursday, March 13, 2008

Minn Heima

Below is Juan Mosqueda’s entry in the Minn Heima contest, sponsored by the band Sigur Ros from Iceland. They made a film called Heima in which they toured all parts of Iceland. The combination of film and music provides a haunting image of Iceland. The film has come to characterize the place. YouTube has the full film for viewing.

In the Minn Heima contest, they offered their video clips for others to use to make Minn Heima, or “my home”. Juan Mosqueda’s entry spoke to me. It is so full of joy for life. I hope you like it. The music is Sigur Ros, from the album Agaetis Byrjun: (1) intro song (2) Svefn-G-Englar.

Monday, March 10, 2008

My Medical Story

I was diagnosed with MGUS (monoclonal gammopathy of undetermined significance) about 5 or 6 years ago after a spike in m-component was identified by my primary care doctor during some testing for MS because of dizziness, weakness, pain, and numb areas. At that time I had no protein in my urine and also had a clean bone survey. As a result of the MGUS, I've been monitored with blood work every 6 months. My neurologist told me that the referral to an oncologist seemed "unnecessary". HA! Glad my primary care doctor didn't listen to people like that. At one point in the 6 years, my blood work returned to normal and the MGUS wasn't picked up at all on standard blood work. As a precaution, my oncologist decided to use a more sensitive blood test before releasing me. That test still picked up abnormalities and she also did a bone marrow biopsy... so I kept seeing my oncologist. Thank God for that. Not too many months later I ended up in the hospital with heart failure, and my oncologist was really suspicious and on the hunt for amyloid. My cardiologist talked to her and said that I didn't have amyloid based on the echo. My cardiologist told me that "You don't want Amyloid, we don't have a treatment for that." My oncologist had my GI doctor do biopsies and one showed amyloid, but too few cells to determine which kind of Amyloidosis. This last year I also developed the enlarged tongue, frothy urine. I had carpal tunnel, and numb areas in my feet and arm. The positive biopsy and Amyloid diagnosis was this last December (12-26-07). I am 51 years old.

My oncologist referred me to the City of Hope, Bone Marrow Transplant Center, in the Banner Good Sam Hospital in Phoenix for a 2nd opinion and follow up tests. My insurance wouldn't cover the Mayo fully but would cover the City of Hope fully. I saw one of 4 doctors who work as a team, Dr. Clarence Sarkodee-Adoo. They did the 24 hour urine collection and blood work. They confirmed the diagnosis. After consultation with the 12 other doctors at City of Hope in California they recommended the Melphalan and Prednisone, since they felt that the Stem Cell Transplant (Stem Cell Transplant) was too risky. My regular oncologist has done lots of SCT also, but never with a cardiac amyloidosis patient. We decided to take the recommendations of City of Hope after reviewing their report.

The doctors believe I have Cardiac, Kidney, GI, and nerve Amyloid. The kidneys are doing well so far but I am having problems with heart failure that I have to manage. The GI has given me problems with constipation that I am managing ok with the help of medicine from my oncologist. I've lost about 20 pounds in the last 6 months but my weight seems to be stabilizing. I think I have absorption problems that were made even worse by the lack of appetite from heart failure. Now that the heart failure is managed I have a better appetite.... sometimes quite astonishing as I will tell you below.

I started my first round of chemo Feb. 25th. By day three I was pretty sick with nausea although, thankfully, no vomiting. My mouth became tender and sensitive. My oncologist provided "magic mouthwash" and also pills for nausea that were helpful. It is now a week later and I am feeling no nausea at all and have some limited energy. I understand that the effects will build up in me over time so I might be sicker with the next rounds (or maybe not?).

I am also drinking green tea. I plan on eatting lots of fresh pineapple, also suspected of helping to rid the body of amyloid. I also read recently about tumeric root removing amyloids. I was nibbling on turmeric root for awhile but it is way too intense and expensive and makes you orange. Our local herb store has a tincture of turmeric root that I will try. I will try any foods. I have been vegetarian for much of my life, but find I am craving poultry... INTENSE craving for chicken and turkey. My oncologist says that sometimes your body craves what it needs and to go with it. The other day I felt like a King, ripping into a roasted chicken and throwing the skin to the dog. My dog thinks this new craving is a wonderful thing. It must have been quite the sight. We ate half a chicken! Go figure. I also take vitamins, Fish Oil, and CoQ10.


-----------------------------

Links:
Please consult your doctor before making changes to your diet or trying any complementary therapies. Foods and herbs may interact with medications you are already taking and it is important for your doctor to have all the information he/she needs to best address your condition.

Green Tea and Werner Hunstein’s experience
Bromelain in Pineapples from Univ. of Maryland
University of Maryland’s Amyloidosis and Complementary Medicine page

Amyloidosis Awareness

If you want to donate money toward raising awareness you can visit the Amyloidosis Foundation and make a donation. Their mission is below (from their website).

The Amyloidosis Foundation, Inc. is a not-for-profit 501(c)(3), all volunteer organization. The Amyloidosis Foundation is committed to improving patient survivability and quality of life by:

  1. Promoting disease awareness in the medical community so it can be recognized earlier and appropriately treated

  2. Supporting high-value research projects

  3. Providing patient education, advocacy and support resources

My First Post

Why Blog?

There is nothing like being diagnosed with a terminal disease (amyloidosis) to foster reflection. Although we are all dying all the time, or we could be hit by a truck at any moment, a diagnosis with a deadly disease with no cure really produces immediate change. It is true what people say, that there is an increased appreciation for living and a new found joy in simple things. It is also true that coping with one’s mortality gives you a new perspective about what is important, and what you want to spend time doing.

Self reflection is big on my list. I am reading Echart Tolle, A New Earth... and taking A New Earth class on Oprah.com. I still must have some ego issues because I am a little embarrassed to admit that I am taking a class through Oprah.com. Regardless, Tolle is helping me be comfortable with Being, and making some concepts that I had already been exposed to more real. I had always struggled with the Buddist concept of Ego. Tolle makes this concept accessible to me, and I am more able to see when I am motivated by ego.

With all the reflection I’m doing, my emails to friends were getting fairly verbose. Now I will try to put my thoughts on the blog instead of in emails. That should reduce the rambling and provide an avenue for sharing my thoughts. I will still email friends but focus more on my relationship with them, than on my transformation.

I also am learning a lot about this disease, and complementary therapies that might help. Since there is no cure, and since this will kill me if left alone, I am motivated to try other options (in consultation with my doctor). The disease produces the amyloid proteins. There are certain enzymes and antioxidants that can help rid the body of excess proteins. I am hoping to make this site a repository for this information so that others can easily find it. I’ve just started this, and with all things it is a process. There are also additional resources for people living with the disease and for their caregivers that I will also reference.

I also hope to raise awareness about Amyloidosis. I will share my story in a future post. This disease is very hard to diagnose, and doctors still falsely believe that there is no treatment. We need to raise the awareness about the characteristics of the disease and the treatment options. This will help save lives. If it weren’t for one of my doctors, I would be diagnosed with heart failure only today, have no idea why it was getting worse, and probably die without ever having a correct diagnosis or the opportunity to treat the real problem.

How to Use this Site

Blogs are like diaries, in that entries are arranged in chronological order. The most current is first, followed by others in reverse order as you scroll down. As a result, finding specific information by topic may not be immediately clear. Blogs use labels to help solve this problem. Each entry will have one or more labels (topics) associated with it. For example, if you are interested in alternative therapies for amyloidosis you will look to the right and click on the label “complementary therapies” and all the posts that have to do with complementary or alternative therapies for amyloidosis will be loaded on one page. As you scroll down, you will see all the posts in date order, with the most current related post at the top of the web page.

I hope you find this blog worth reading.

MB