Dying from "Addison's Complications" rant

I'm not actually sure what I'm going to say here. I've been pondering writing this post for about three months now. I'm really, really annoyed at certain organizations posting obituaries and saying "died from complications of Addison's" and giving no specific information. It terrifies me to think I could die from "Addison's complications" and not have any idea what these complications might be or how to avoid them.

I feel like the organizations and families of people who have died from "Addison's complications" are doing the Addison's community a HUGE disservice by frightening us when they could be enlightening and educating us, sparing other Addisonian's from untimely death or being frightened of these "complications".

A brief digression, I was on an Addison's Yahoo board and saw this quote,

"When I was first diagnosed with AD, my boss (a woman) said, "So you've got a disease that makes you tan and lose weight. And you want to fix this?""

I immediately emailed the poster, Fran Segerson, for permission to use the quote and wrote this post. I could tell she was a spunky, fun woman from our exchange!

Later in the summer, I read Frans obituary in an newsletter. When I eventually put together that the quote was from her and she was dead, I contacted her family to ask what had happened. Her daughter was kind enough to respond with the information below (she gave me permission to share the information) that helped clear up the ambiguous "complications" explanation.

"It appears Mom passed from Addison's complications. She was fine and then got a stomach bug while on vacation in Spain and i think she knew she needed to go to the hospital but didn't want to get in the way with the rest of her travelling party so she stayed back and probably just got really dehydrated. We unfortunately aren't going to know exactly what happened until they finish the results of her autopsy. They say it will take at least 2 years. It's so hard to not know but after discussion with her traveling companions and from living with her- i think it was what i stated. Sorry for your loss- i know mom was a great friend to everyone and a resource for lots of other Addisonians. Best of luck. Patti Wohl"

Also from Patti: Absolutely , use whatever is helpful... I moved back in about 5 years ago because when she did need help it seemed to be escalating faster than when she was younger. In fact the last few times she needed to go to the ER she got so dehydrated so quickly she started to lose her rational thought and it became a struggle to get her there, once hydrated she would thank me for getting her there and she would be back to her 30 year old energy and atitude for life( she was 63 but no one could have told her that)! My sister never saw her in distress and had no idea it could get that bad. Her doctor here is convinced that she passed from a coronary event brought on by dehydration. She had no heart issues at all. My mother would be so proud of you for doing what you are doing. She had said several times early on that she felt so alone with the Addisons but since the email groups ect.... She felt like an important part of a vital community.

April 22nd is the first anniversary of Fran's death. I think there's something that all Addisonian's can learn from her death, dehydration is dangerous and can kill you, go to the hospital when you need to, keep your injection kit in working order and don't be afraid to use it because too much cortisol is better than too little in an emergency (that's my contribution to the lesson).

Some info to let you know what a great woman Fran was and how well respected she was

• http://www.dot.state.ri.us/documents/news/interchg/Fall2009.pdf page 20
• http://www.wtsinternational.org/uploadedFiles/Chapters_-_Community/Rhode_island/Document_Library/WTS-Rhode%20Island%20-%20Newsletter%20Summer%202009.pdf page 4, bottom right
• http://www.seapubs.com/eBulletin5-21-09/obituaries.htm
• A bike guide dedicated to her memory: http://www.dot.ri.gov/bikeri/

Attitude Toward Everyday Activity Important for Healthy Lifestyle

ScienceDaily (Apr. 3, 2010) — Unintentional physical activity may be influenced by non-conscious attitudes, noted David Conroy, associate professor of kinesiology and human development and family studies. The challenge of encouraging more activity can be met by understanding the motivation behind both deliberate exercise and inherent behaviors.

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See Also:

Health & Medicine

• Fitness
• Sports Medicine
• Alternative Medicine

Mind & Brain

• Intelligence
• Mental Health
• Child Development

Reference

• General fitness training
• Athletic training
• Attribution theory
• Aerobic exercise

"If you aren't in the habit of being physically active, you can run out of energy trying to force yourself to do it everyday," said Conroy. "But if you can make physical activity habitual, being active becomes a lot easier."

Efforts to increase physical activity are at the forefront of public health research because the benefits of a healthy lifestyle go far beyond physical and mental well-being. However, the majority of these efforts focus on explicit motivation -- external factors that lead to a change in behavior. Explicit motivation can include following the U.S. Department of Health and Human Services' recommendation for 150 minutes of aerobic activity throughout the week, or making plans with a friend to start a weight-loss program.

But explicit motivational processes are often unsuccessful in causing changes that people can easily maintain long-term.

Conroy, along with Shawna Doerksen, assistant professor of recreation, park and tourism management; Amanda Hyde, graduate student in kinesiology; and Nuno Ribeiro, graduate in recreation, park and tourism management, examined 200 college students for a connection between physical activity and level of unintentional activity.

"It wasn't the overall level of activity we focused on, it was specifically the unintentional activity -- those little things that you don't even think about that help you burn those extra few calories," said Conroy.

Their results, published in the April issue of Annals of Behavioral Medicine, show a positive correlation between individuals who have a positive attitude about physical activity and those who performed more unintentional physical activity, such as climbing stairs instead of waiting for the elevator, or walking further to the store because of parking in the first available spot rather than searching for a closer space.

The researchers measured the students' unexpressed attitudes towards exercise with a common psychological test that uses words or pictures to trigger a person's automatic response. The computer-based test requires categorization of a stimulus, in this case a type of physical activity, with words that are either "good" or "bad." The faster a person associates a pairing as either good or bad, the more strongly they connect those two things in their memory.

Conroy and Doerksen also used questionnaires to determine the amount of physical activity the students predicted they would get during the week. The amount varied, depending on how active students were in their social group or the outcomes they expected from physical activity.

The researchers fit each student with a pedometer to calculate the total activity he or she experienced during one week. The amount of unintentional activity is estimated by adjusting total activity scores to account for people's intentions to be active.

"We're trying to follow this up now by looking at a broader range of populations," said Conroy. There are major differences in what motivates young adults, mid-life adults or parents, and older adults who may have physical limitations, he noted.

The researchers are now exploring whether there are ways to promote or encourage physical activity without a person knowing it.

Signs of Spring

Spring is coming, here are some signs...

Snow is thinning...Grand Teton is the big, pointy one.

Sign along Pine Creek Pass. Do people in other places have this sign?

A drainage pipe that made a pretty ice sculpture with some spring run off.

Still three feet of snow on the good trails.

Beautiful view, I ran up and down this road today.

Spring IS coming, Pine Creek is melting out!

Snow plows knock over signs during the winter, the signs melt out in the spring.

Definite sign of spring, snowmobilers, desperate for the last ridable snow, ride on the highway and muddy shoulder in an effort to get to the trails.

Joanne and Bridger on the road up to Targhee. Hardly any snow left.

Horsecicles on Salty.

A sure sign of spring is that we were brave enough to leave the Valley and go to Boise. We ran with Allison at Table Rock. Look, bare legs!!!

Me standing in the bucket of an excavator in a quarry. The bucket was HUGE!

OK, maybe gross but a little cool. This is the skeleton of a Trumpeter Swan. It was enormous. It's wing was at least 3 fee long and it's foot was the length of my palm.