ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


advertisement
Reply
 
Thread Tools Display Modes
Old 12-15-2006, 08:44 AM #1
BobbyB's Avatar
BobbyB BobbyB is offline
In Remembrance
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
BobbyB BobbyB is offline
In Remembrance
BobbyB's Avatar
 
Join Date: Aug 2006
Location: North Carolina
Posts: 4,609
15 yr Member
Default Living with ALS



Living with ALS
Fri, Dec 15, 2006


Pamela Rucker, center, is surrounded by her husband Jim and daughters Kelli Derr and Jodi Rightson. (Tony Baughman photo)
By TONY BAUGHMAN Staff writer

Pamela Rucker leans down and kisses her 21-month-old grandson Owen on his head as he climbs onto the footrests of her wheelchair.

Her eyes reveal a truth she can no longer fully articulate, a pain she struggles to mask behind a labored smile. She desperately longs to hold Owen and her other two grandsons close, to whisper that she loves them, but she never will again.

"That's the hardest part," Rucker said, fighting her own weakened muscles to utter a few words slurred by the ravages of amyotrophic lateral sclerosis.

In May 2005, Rucker was diagnosed with ALS, commonly called Lou Gehrig's disease after the New York Yankees first baseman whose death in 1941 first raised the nation's collective awareness of this rare neuromuscular disease.

Before that fateful summer day 19 months ago, Rucker's life was filled with such promise and renewal.

"I had just landed a new job at St. Joseph Hospital Home Health Pharmacy, where I would be their new IV therapy coordinator," she wrote in notes painstakingly typed, knowing that her voice might desert her while discussing her condition. "I had been remarried three months earlier, and God had just given me three beautiful grandsons, all under two years of ago ... I was only 47 years old and had planned on doing a lot more living."

Instead, Rucker was forced to sink all of her energy and hope in battling a mysterious and incurable illness that has viciously assaulted the nerve cells in her brain and spinal cord.

"For a year, the ALS remained in my right leg," she wrote. "Until a few months ago, I could drive and walk with a cane. Now I am totally dependent on my wheelchair, for the disease has moved to my left leg and my arms are weak."

Also lost in the struggle was Rucker's sweet Southern drawl, a loss she said is "much more frightening than not being able to walk." The encroaching silence is terrifying and heartbreaking because ALS does not destroy the mental functions of those affected; rather, losing the ability to communicate cruelly traps intelligence and wit inside a slowly dying body.

"A lot of people think I have had a stroke," Rucker said, again forcing her voice to concede a few broken sentences. "I can't swim or dance or ride my bike or horseback ride, but I can think. I still enjoy reading and crosswords and Sudoku. I love a challenge in my mind."

Reactions from those who encounter Rucker for the first time leave people who know and love her also angry and hurting.

"I know sometimes when my mom does go out in public, people will talk to her as if she's mentally disabled. She's not," said Kelli Derr, Rucker's daughter. "The only reason she speaks the way she does is because she's losing muscle control everywhere. ALS does not affect your mind, but people will talk to her slowly, treat her like a child, ask her if she wants to pet their dog. I just wish they could understand."


Coming to terms

Yet understanding Lou Gehrig's disease is a hard-won commodity even for those stricken and their families. The very nature of the illness — brutal and often swift in its progression, with no known cause or cure — is confounding and frustrating.

"I spent a lot of time in denial about what was really happening until I saw her starting to progress worse and worse. It's really only been recently that I've accepted that this is for real, that this is really happening," Derr said of her mother. "It's hard to watch her because it seems like she's experiencing all these little deaths, doing things for the last time. There comes the point where she can't speak anymore, she can't walk anymore, she can't drive anymore. It's hard."

According to The ALS Association, about 5,600 people a year are diagnosed with ALS, and an estimated 30,000 Americans may have the disease at any given time. The average life expectancy of an affected person is two to five years. Death comes as the muscles that control vital functions such as swallowing and breathing are slowly paralyzed.

Medical science says Rucker will surely die from ALS. The emotional reality has been harder to accept.

"In the beginning, I would avoid going to support groups because I didn't want to see anyone in final stages of it," Rucker said. "But now, I'm not afraid of dying. I'm only fearful of the process, the decline ... I always believed in God and went to church, but my faith has gotten stronger after being diagnosed."

In her notes, Rucker wrote, "I do not fear death for my faith is strong."

After struggling with their denial, Derr and her sister, Jodi Rightson, began preparing themselves for their mother's passing. Jodi had her mother's name and a "Stamp out ALS" ribbon tattooed on her foot as a constant reminder.

Derr admits she began to mourn her mother prematurely.

"An older lady took me aside one day and said, 'Kelli, as much as you think you're preparing yourself, when she's gone you will not be ready,'" she said. "She really sat me down and told me to quit trying to distance myself from everything. She said, 'Make memories now and cry later.'"

So, even as Rucker grown weaker, the family has focused on capturing those lasting memories.

"We're learning to live with ALS. That's what you've got to do; you've got to learn to live with it," said Jim Rucker, standing by his wife's wheelchair and stroking her hair. "Pam's leading, as well as she can, a good life. She does spend a lot more time in the house than she would like, but we go out to eat and we've been on a lot of trips the last couple of years."

On one of those journeys about five months ago, the Ruckers traveled the entire length of the Blue Ridge Parkway together.

"It was fantastic. We got us a convertible, let that top down and took off," Mr. Rucker said.

His wife's eyes suddenly danced, and again she struggled to give voice to her feelings: "I love the mountains."


Lesson in living

Amyotrophic lateral sclerosis will eventually steal Pamela Rucker's voice entirely, but she refuses to be silenced just yet.

"I am hoping to put a face on this disease. It is my hope that (this) will raise more awareness of the disease and let the public be aware of the toll it takes on those who suffer with ALS," Rucker wrote. "There is so much attention given to other diseases, but ALS seems to have been put on the back burner."

Though Mrs. Rucker is losing dexterity as her arm and hand muscles weaken and atrophy, her husband says with obvious pride, "She's an Internet and e-mail guru" who researches ALS-related issues and ongoing scientific research.

Arguably the most promising research now hinges on the controversial study of embryonic stem cells. Scientists say cells from human embryos created by artificial insemination may be used to find possible treatments for conditions such as Alzheimer's and Parkinson's diseases. Critics, however, question the very morality of the research, equating stem cell studies to abortion or murder.

On this debate, the Rucker family is unified and passionate.

"If you ain't got a dog in the race, you might fall on the conservative side," Mr. Rucker said. "But you see conservatives like Nancy Reagan, once Ronald Reagan got Alzheimer's, she had a dog in the race. If George Bush's daughter or his wife contracted ALS, I can assure you his attitude would be totally different."

Mrs. Rucker is even more uncompromising. "I wonder how can you say you're pro-life, but then you're denying me and other people a chance at life," she said, grimacing and close to tears as she struggles to form her words.

Meanwhile, Rucker has become one of only 120 participants nationwide in a clinical trial, funded by the ALS Association and conducted at the Medical College of Georgia and 19 other institutions. In the seven-month study, she is receiving either a combination of minocycline (a common antibiotic) or celecoxib (an anti-inflammatory drug) plus creatine in hopes of slowing down the progress of ALS.

Pamela Rucker and those who love her know that, by submitting to this research and by now trying to raise awareness locally of Lou Gehrig's disease, she is not buying herself very much time. Rather, she is making these sacrifices to help those who may come after her.

"It's tough, but Pam's got a wonderful attitude about everything," her husband said. "Not that this doesn't work on her real hard; it does. It gets depressing, worse than anything you can possibly imagine. But she has got a wonderful, bright attitude. That's what drew me to her in the first place, and that's what's holding her in pretty good stead right now."

http://www.aikenstandard.com/homepag...8246003009.php
__________________

.

ALS/MND Registry

.
BobbyB is offline   Reply With QuoteReply With Quote

advertisement
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Living Without Fall/06 & Winter/06 diamondheart Gluten Sensitivity / Celiac Disease 2 12-17-2006 11:16 AM
Living with ALS BobbyB ALS 3 12-14-2006 08:45 AM
ABC's of living a good life.... bizi Bipolar Disorder 1 12-05-2006 06:46 PM
SSDI and living independently Braindrain Social Security Disability 71 10-06-2006 04:48 PM
People with Lou Gehrig disease are living longer BobbyB ALS News & Research 0 08-28-2006 06:55 AM


All times are GMT -5. The time now is 08:56 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.