Posts by Lentil

On Government, Insurance Companies, and ALS or #NoWhiteFlags

Steve Gleason has done a lot to bring attention to Amyotrophic Lateral Sclerosis (ALS, Lou Gehrig’s Disease). Please read this letter that he wrote to his congressional delegation. Living with such a debilitating condition is not easy. Government and insurance companies have the ability to make it just a little bit easier. Unfortunately they usually do the exact opposite.

An Open Letter to Louisiana Senators and Congressmen:

Dear Senators Landrieu, Vitter and all Louisiana Members of Congress,

Recently, legislation was introduced to ensure patient access to quality, complex rehabilitation technology. An example of that technology is my power chair. I cannot imagine living with ALS (or any other physically restrictive disease) without a power chair. It is not only a necessity, it is a means of independence for me and my caregivers. The bi-partisan legislation introduced is S. 948 and HR 942. While every organization that supports the care of people with physical limitations supports this, not one legislator from Louisiana has signed it as of today.

Adding to this, the Centers for Medicare & Medicaid Services (CMMS) have new rules which become effective April 1st. Exactly the opposite of the legislation above, these superfluous rules will inhibit people from having consistent access to essential communication devices. The term essential is not hyperbole. I use my eyes to type on one of these devices. Essential communication; from requests for food or water, to telling my family I love them, advocating at the United Nations, or open letters to policy makers.

While I am very fortunate to have the ability to own and customize my equipment, most people who are dealing with ALS, and conditions like ALS, do not. Living with a physically debilitating disease is not only a tremendous emotional burden, but a financial one as well. By taking away access to these devices, the CMMS is harming the very people the institution was created to help.

Imagine if your cell phone, tablet and laptop were taken away when you had a hospital visit. While it is logical to rent “simple” machines like a car or a pressure washer for periods at a time, renting complex and customizable technology like a cell phone, tablet or laptop is far less viable, especially when that technology is your only means of connecting to the world.

I was recently in a Microsoft commercial. The commercial shows how transformative technology has been to individuals and the world. Microsoft calls these technologies “empowering”. These new rules from the CMMS will quash the power that technology gives people like me… people who intend to be productive and purposeful.

Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others.

Steve Gleason


Leadership Lawrence Interview or Internet Killed the Radio Star

This year I am taking part in Leadership Lawrence, a leadership program based on the Kansas Leadership Center‘s Four Competencies - Diagnose Situation, Manage Self, Facilitate Intervention and Energize Others. I was drawn to this program after hearing how amazing, awful, and stressful it was. The neat thing is that the same people shared both positve and negative experiences with the program. This made the recommendations more real. . .more sincere.

On Monday, March 10 I had a blast speaking to Kim Murphree of Lawrence Hits about my experience (so far!) with the program. My interview starts at the 32:00 minute mark. Please ignore my cold and click here to listen: http://lawrencehits.com/wp/blog/podcast/leadership-lawrence-radio-hour-031014/


dusting off the cobwebs: Saul Alinksy

A number of upcoming projects have led me to revisit some of my past experience. I think this is called “dusting off the cobwebs.” Some of the dusting has been invigorating. Some has reminded me why I didn’t further explore those options.

Every so often I will post a link, article, story, or something relating to these experiences. The first Item I came across was an enjoyable documentary called Saul Alinsky Went to War. It is a look at the Alinsky model of community organizing put into practice. A paper on organizing models [pdf] describes the Alinsky model:

The community organizing model developed by Saul Alinsky owes its inspirations to the Communist theories of mass mobilization. Alinsky, on the lines of Marxist philosophy views the current capitalist economic and social systems problematic and the cause for all social issues such as crime, unemployment, inequality, discrimination, declined morality and environmental degradation. Alinsky emphasizes working within the system to change the system. Just like Carl Marx, Saul Alinsky has little discussion of how a society should be structured and its function after the successful revolution overthrows an 0ppressive dominant system.

Pop some popcorn, pull up a comfy chair, and click away!


Walkin’. . .yes indeed I’m walkin’!

Defeat ALS! Join Team Lempa

On December 12, 2013 I received a phone call from my mom while my co-workers were wishing me a happy 33rd birthday. My Dad had lost a 2.5 year battle with ALS (aka amyotrophic lateral sclerosis; Lou Gehrig’s Disease). While his passing wasn’t unexpected, we didn’t think it would happen on my birthday. Needless to say I hopped in my car and started driving. And driving.

This trip was nothing new -hell I once road a 125cc scooter from Lawrence, KS to Chicago – but it was different. It was both longer and quicker. Further and shorter. Multiple text messages from my brother reminded me to be safe while at the same time telling me that I needed to get home sooner. Rachel checked in to make sure that I was OK as did a few of my closest friends. Gaslight Anthem’s ’59 Sound was on repeat.

The drive itself was mostly a blur. I do remember laughing and crying as long lost memories formed a mental collage. When I arrived in Berwyn I was greeted by my Mom and brother. We hugged, laughed, and cried.

Three months later it is still hard to believe that our family of five is now a family of four. This experience has both weakened and strengthened us as a family. I am grateful for my friends and family that supported me throughout this ordeal and have checked in on me afterwards. I might not always say it, but I love and appreciate you.

I am also extremely thankful for the ALS Association Greater Chicago Chapter. Without them I don’t know how we would have made it through this ordeal. They provided equipment, guidance, and emotional support. Additionally the ALS Association also supports research to fight ALS and discover a cure.

Last year I captained the top fundraising team in the Walk to Defeat ALS. This year we have reformed Team Lempa and are again raising money to find a cure to this horrific disease. You can support us by clicking here: http://webchicago.alsa.org/goto/ChrisLempa2014

PS – I will be participating in a number of runs throughout the year. I will use these runs to raise money for the ALSA and to raise awareness of this horrific disease.


Defeat ALS! Join Team Lempa

Defeat ALS! Join Team Lempa

Tomorrow marks the two month passing of my Dad, Kenneth Lempa. Last year we were fortunate enough to have him walk with Team Lempa: Walk to Defeat ALS as we rocked it out at last year’s Walk to Defeat ALS. This year we will be walking in his honor.

Can you help us as we raise money to defeat this awful disease? Every penny helps. My mom , uncle and I would also love to have you join our team! Please email me (8lempa8 (at) gmail dot com) if you’d like to walk with us.

You can support us by clicking here: http://webchicago.alsa.org/goto/ChrisLempa2014


New Goals for a New Year

I don’t like New Year’s Resolutions. For that reason I was very excited when I read about goal setting in Matt Frazier’s new book No Meat Athlete: Run On Plants and Discover Your Fittest, Fastest, Happiest Self. With that inspiration in mind, I will be spending a portion of today setting goals using the following 5 points as an outline:

  1. Get some dreams on paper.
  2. Set a timeline for each goal.
  3. Circle your top three one-year goals.
  4. Get specific about your three one-year goals.
  5. Make plans and take action.

Once I complete my goals, I will post them here as a way to hold myself accountable.

Happy 2014!


Tagged with:

Red Kuri Squash Soup

image

I made this soup for dinner.  It was delicious.


Tagged with:

Just Another Alley Walk

Just Another Alley Walk

I took this picture while I was walking my dog through the Brook Creek Neighborhood. It was a reminder of why I like Lawrence.


Tagged with:

My Front Yard

My Front Yard

Great Mullein is one of my favorite plants.


How to Join Team Lempa

There are two ways to join Team Lempa as we Walk to Defeat ALS. One is as a Virtual Walker and the other is as a Fundraising Walker.

Step 1 – Go to http://webchicago.alsa.org/goto/TeamLempa

Step 2 – Click on Join Team

Step 3 – Choose either Virtual Walker or Fundraising Walker.

Choose Virtual Walker if you will not be able to attend the actual walk but would like to help us fundraise.

Choose Fundraising Walker if you will be able to walk.

Step 4 – Fill out the rest of the information.

Step 5 – DONE!

It’s that simple. Once you have joined Team Lempa we ask that you help us raise money for the ALS Association. As some of you know, this organization has been extremely helpful for my entire family.

Please contact me if you have any questions. My email is 8 lempa 8 (at) gmail . com (remove the spaces and use the @ symbol).