From Bucket Challenge to Bucket List

Traveling with an Advocate for ALS

 

Ice Bucket

The Ice Bucket Challenge for ALS

Do you remember the Ice Bucket Challenge in 2014? Andrea Heaberg, my uncommon friend and former colleague, recalls her participation. She volunteered with the ALSA (Amyotrophic Lateral Sclerosis Association) with a sneaky suspicion she might have a neurological issue. The Ice Bucket Challenge began as a “grass roots” effort to raise money and awareness for ALS, a.k.a. Lou Gehrig’s disease. The Challenge rode the social media wave around the world for a number of months. Other philanthropies joined the melee to earn money and awareness, but ALSA realized $115 Million that year in donations, which helped fund several new research studies.

A Few Statistics

ALS is difficult to diagnose; it is a progressive, neuromuscular condition without a cure. Three doctors and a year of costly medical tests determined that Andrea Heaberg’s weak hands would never become strong again. She is gradually losing muscle control in her arms and legs and has a caregiver, her husband.

More men than women are afflicted by ALS. A new case is diagnosed every 90 minutes.

Military veterans are 50% more likely to develop ALS than the general population.

There are more than 50,000 people in the U.S. living with ALS; the average lifespan, from diagnosis to death, is 2 to 5 years. By comparison, the FDA drug approval process takes twice that amount of time.

Generally, the ALSA  budgets about $39 Million per year to fund research projects and provide grants for specialized equipment, among other support activities for ALS patients; their Board includes patients with ALS. The Muscular Dystrophy Association  is involved in similar activities, but ALS is a small part of their focus. When both groups lobby congress for resources, they compete with each other, except where proposed legislation benefits all patients. But…Andrea does her share to help improve the statistics.

The Conference

at the conference

Andrea with Penny, her fierce service dog, at the conference.

Last May, a major, world-wide ALS conference occurred in Washington, D.C. Andrea attended, along with more than 1000 others. One hundred and twenty-eight patients from around the world attended. Her husband flew with her or she could not have gone; she can no longer carry a bag or fasten a seat belt. She planned to meet legislators at the conference.

I asked her what she liked about the conference. Her response shows her heart. “I loved hearing about the ongoing drug trials. Seeing the new, marvelous equipment to help with my speech issues encouraged me. The drug trial results may not provide hope for me, but may for those in the future. All the patients we met were extremely positive in their outlook.”

The Advocate

Andrea defines herself as an Advocate for ALS in Texas, not as an ALS patient but as a Person with ALS. She expected to speak to the legislators during the conference, but she wound up visiting with their “specialists” whose roles revolve around improving laws for medical care. She met in the offices of six congressmen and one senator to seek support of three specific bills that would provide immediate or short term benefits to those whose lifespan might be measured in months. The legislative update can be found at alsa.org/advocacy/advocacy-day.

Andrea is eligible for Medicare, but because she will not get better, only worse, Medicare refuses to pay for physical therapy. She can pay for it herself or go without. She has learned many techniques to keep her muscles as flexible as possible at home. “Get on living or get on dying. While there is no bright future for me, I choose to find a new normal every day with something positive to keep me going through my journey,” she says. Her daily struggles include finding alternative ways to remain active without the use of her hands and arms.

Using the phone is a chore, because it is difficult to tap a key. She works from her home office for her ALS organization by contacting legislators and sharing the stories of others. She participates with the local ALS organization during fund-raising walking events (while she is still mobile) and support group activities. As technology improves, she will record her voice (in a voice bank) to use when she can no longer speak, and use her eyes to ‘type’ her communications.

Her personal ‘Bucket List’ includes filling The Ice Bucket. The Challenge is still around, but “we need other local events to find new methods to increase awareness and donors; there are ALS chapters in all 50 states where folks can volunteer.”

As she becomes weaker, her will to live is stronger with her willingness to advocate. If you are looking for a new way to serve others, please think about Andrea, who continues to make a difference in the world while traveling with her illness.

A huge thanks goes to Andrea and Jim Heaberg for their help with this article. More statistics are available at the ALS website.

 

 

 

 

My Article Went Global

Volunteering

paperweight

A MacNaught Paperweight

I’m elated! An article I wrote in May 2014 went global this week. Volunteering to Preserve Paperweight History  was published in the Paperweight Collectors Association newsletter this week. Originally I wrote the article for the Paperweight Collectors Association of Texas newsletter. Someone in the national organization read it and contacted the PCA-
Texas newsletter coordinator to ask if the national organization could re-print it. Members of PCA are paperweight collectors and artists all over the world.

The national group meets this year in Tacoma from 4/29-5/2. Click on their website for details.

Our Texas group meets 2/5-2/7 in Houston. Check their website for details. Check my website to read my “global” re-gifting to you, as I originally posted the article on my website to encourage you to volunteer.

Networking Pays Off, Not Only for Job Seekers

cowboy boots and hat

These boots are made for writing!

When I moved to a smaller town a little over a year ago, my life changed dramatically. Although the relocation entailed only a 20 mile ride to Plano, I changed my career, my address, my church, and needed to make new friends. I knew that networking pays off, not only for  job seekers.

I hightailed it to the Sachse, Texas (population about 20,000) Library.  If you know me at all, you know I adore books and words.  Wow! The library is dinky, compared to other suburban libraries, but getting a library card stood about third on my “to do” list. First, groceries, second, find a church. In fact, I may have had my library card before my husband and I joined a small, local congregation. But…I digress.

Accidentally I found a mystery, written by a local writer named Reavis Z. Wortham at the library. He grew up in East Texas. I researched his background and found him on LinkedIn. Hmmm! I’d like to hear how he became a writer. I loved the book. A humorous, easy read with a good plot. Timidly I asked him to connect, and he accepted. I thanked him and told him that I was starting a writers group in Sachse through the library, promising to stay in touch.

I joined the “Friends of the Library,” an arm of their volunteers which offers programs to help the library with “extras,” not in the budget. The library needs plenty of extra money as the librarians still complete little cards by hand to put in a pocket in the front of the books showing due date.

I contacted Reavis to see if he would speak for a special event to raise money for the library. As it happened, he released the fourth book in his Red River Mystery series in August. His customized presentation talks about his latest book, titled Vengence Is Mine, plus he’ll talk about how he left a successful Communications Director position with the Garland ISD to write full time. So please join us for Reavis Writes Again. I’m eager to hear him speak, make a little money from donations at the presentation and network with others.  (See details below.)

SPECIAL EVENT-SPECIAL EVENT-SPECIAL EVENT

Reavis Writes Again

Reavis
Reavis Z. Wortham

Date:               Tuesday, October 7, 2014

Time:              7:00 p.m.

Place:             Sachse Public Library, 3815 Sachse Road, Sachse, TX  75048

Between Garland and Wylie, east of Highway 78

Open to the public.  No admission charge or reservations necessary.  Refreshments and doorprizes.