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 11-19-2006, 09:00 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
Post Living with ALS

Living with ALS
Updated: 11/18/2006 11:31 AM
By: Marcie Fraser



ALS affects 30,000 people in the United States and each year 6,000 more are diagnosed. It affects people in their prime.

The message for Glenn Nichols, a guy who lifted weights most of his life. He is suffering from a terrible, deadly disease. The first sign, he started losing strength in his hands. He spent years getting misdiagnosed. Finally, when he couldn't walk a 1/2 mile, he got a new neurologist. The news didn't surprise him.



WATCH THE VIDEO



Living with ALS

ALS or Lou Gehrig's Disease is where patients become weaker and weaker, our Marcie Fraser brings us the journey of one brave man.







"Here I am six feet tall, 265, 270 pounds and having a difficult time buttoning my blue jeans. It sends a pretty quick message that something is wrong." "I'd already been on the Internet. I'd already searched for symptoms and it kept coming up ALS. I knew," Nichols said.

ALS is a neurological disorder with no known cause or cure. Nerve cells in the brain die, slowly. A year ago he was walking; now he is in a wheelchair.

"My arms are weak,” Nichols said. “I can't raise them much over my shoulder level it."

His breathing is compromised and he can only take shallow breaths. To accommodate ALS patients, St. Peter's hospital built this single floor facility.

Karen Spinelli, who is a manager at the ALS Regional Center said "A person with ALS having difficulty walking moving their hands, unable to push an elevator button, breathing issues. To have to negotiate from one area for their therapies and to another.

Everything is at the center. Glenn gets physical and occupational therapy as well as his pulmonary tests. Nearly any type of equipment needed is loaned to the patients. From wheel chairs to...

"Speaking devices to help people communicate, speech amplifiers so as their voice volume is down," Spinelli said.

The average patient with ALS lives about three years. There is no cure. The focus is on managing and support. The latest technology is called Brain Computer Interface.

"For a person who is totally paralyzed and can't move any muscle in their body, they will be able to project their thoughts onto a computer screen through this technology," Spinelli said.

"The way I was brought up, my whole personality is to grab it by the neck and fight. I got nothing to fight," Nichols said.

http://news10now.com/content/health/...ng/?ArID=86536
__________________

.

ALS/MND Registry

.
BobbyB is offline   Reply With QuoteReply With Quote

advertisement
Old 11-19-2006, 07:07 PM #2
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 Keeping a family man at the heart of his family

Keeping a family man at the heart of his family
Loving care keeps Dave Hagan at home battling ALS
By DONNA HICKMAN\Daily Journal Staff Writer

Donna Hickman / Daily Journal Bev and Dave Hagan share a laugh as she coaxes him to pose for a picture. “There is a loving atmosphere here. There is joy here,” said Bev’s brother, Jimmy McMillian, who helps to care for Dave.Dave Hagan has always been a family man. He took his girls camping. He taught them to fish. When they wanted to swim, he set up a swimming pool. When his daughter Misty wanted a swim party for her early April birthday, he hooked up a black hose and pulled the pool into the sun so they could swim in warm water.

“Daddy's always been my hero,” said Misty Stone. “He still is.”

“He has always believed in me,” said Dawn Rosener, Dave's youngest daughter.

“My dad encourages me with his strength,” said Wendy Zayas, another daughter.

This father who thrived on caring for his family now thrives because his family cares for him. Dave has Amyotropic Lateral Sclerosis, also known as ALS or Lou Gehrig's Disease. And as the disease slowly takes away the life he loved, his family brings life to him.

“Can I bring a puppy over for Dad to hold?” asks Dawn, who calls her mother about her black Labrador.

“Sure,” says Bev Hagan and as she hangs up the phone, she smiles and says, “We all do what we can.”

A granddaughter calls to ask if she can get off the school bus at the house. Other grandchildren carefully avoid the tubes when they climb up into bed to hug “Paw Paw.”

The diagnosis came two years ago after Dave began slurring his speech. Doctors first treated him for a stroke. As his symptoms worsened, medical tests confirmed ALS, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Victims eventually lose the ability to move any part of their bodies, though, in the majority of people, their minds remain unaffected.

The diagnosis told Bev it wouldn't be long before Dave would be unable to do the things he loved, so she helped him do them for as long as he could. She bought a golf cart so he could play on the courses he once walked for hours. When he became homebound, she bought a pool table so he could play.

She saved his message on his cell phone to hear his voice when the day came he could no longer speak. While they could, they talked candidly about where the disease would take them. Dave told her to do whatever was needed to keep him alive. Bev promised she would. There have been days when it was all too much and he would say he had changed his mind, but Bev reminded him she would keep the commitment she made.

When his tongue could no longer direct food for him to eat, doctors attached a feeding tube. When his lungs became too weak to move air through his body, Bev had doctors attach a respirator. She said the Veterans Administration pays for all the equipment he needs. In March, doctors told Bev to place him in a nursing home. But, Bev wanted her family man at home - his home. And that's just where he is.

Loving Care

Bev McMillian was only 12 years old when she met the 16-year-old Dave Hagan. Her friends were impressed when he would drive up to school and play music loud on the radio.

“He's always been a real cut-up,” she said. “He used to talk like John Wayne and he'd say, ‘Take heart, little lady, I'll fix her wagon!' He always took care of me.”

They married in 1966. A year later, he was training at Fort Leonard Wood and was sent to Vietnam. In the Army, he drove a water truck and wore a backpack to spray Agent Orange, the powerful herbicide and defoliant used in the jungle.

“When he came home, there I was with Misty, who was 9 months old and had never seen her father, and I'm trying to make my way through a crowd of protesters who are yelling at the Vets coming home. They're yelling, ‘baby killer' and all sorts of awful things. He never got a real welcome home.”

The memories of war came home with him and Dave suffers with Post Traumatic Stress Disorder.

The couple lived in St. Louis. Dave made a living installing floors. The family moved to Bonne Terre in 1992. Bev worked as a church secretary and bus driver. Then, in 2003, she and Dave opened Floors Galore and More. Bev closed the business in April to spend more time with Dave.

Misty, her husband Jim and their two children made the decision to move into her parents' home about a year ago. Misty had taken nurse's training while in high school. She believed that training would help her care for some of her father's medical needs.

“It was sad here at first,” said Misty. “We didn't know what we were doing. We were scared. But now we know. If me and my mom didn't have each other, I don't know what we'd do.”

Misty's is the first face her father sees every morning.

“Dave beeps her at 5 a.m. to come in and give him a hug,” said Bev, explaining how he has a pager at his fingertips. They've attached a doorbell Bev can press in an emergency that rings in the basement where Misty sleeps.

“I sleep on a rolling bed on an air mattress and I get up with him at night when he needs it,” Bev explains. “The alarms sound if his respirator or feeding tube needs attention.”

When he's in pain, Dave raises the index finger on the only hand he can move to ask for pain medicine. When he's asked a question and the answer is no, he gives a thumbs-down. Thumbs-up means yes. He breaks into a grin when his family is in the room and his eyes study those of the visitors who stop in to share his day.

On days when Dave is worse, both Misty and Bev are by his side. On better days, one of them goes out to visit friends, goes shopping or just spends time outdoors. Bev's brother, Jimmy McMillian has moved in, too, doing the chores Dave can no longer do.

“He's such a good guy,” said Jimmy. “I feel honored whatever I can do for him.”

Every morning, Bev hooks up a portable oxygen tank to give Dave a shower in a recently installed handicap accessible setup. Misty changes the bedding and the hoses on the machines that feed him and breathe for him. Together, Bev and Misty lift him back onto his bed. Bev re-attaches a catheter. Sometimes, she gives him a small piece of Dove chocolate and keeps watch to make sure he doesn't choke as the treat melts in his mouth. Exhausted, Dave may sleep until noon.

Throughout the day, family and friends come in and out.

“I visit as often as I can and tell Dad how my kids are doing in school and just tell him about the things we're doing,” said Wendy.

There are also visits from home health professionals like Robin Sims, a respiratory therapist.

“This is such a great family,” she said. “Everybody is willing to learn whatever they have to learn to take care of Dave. It's a lot cheaper for her to take care of Dave at home than for him to be in a facility. He gets better care here, too.”

Bev rejects any praise for what she does for this husband who she says spoiled her throughout their 40-year marriage.

“I am committed to him as his wife,” she said. “I know home is where he wants to be. ALS is a very short term illness. No one really knows how long he has. We will spend all the time with him we can. I'm going to spend every moment I can with my husband.”

There is joy here

There's an American flag in the yard and a ramp leads to the door of the Hagan home in rural Bonne Terre. Inside, there's music with a vibrant beat playing on the radio.

“This is a loving atmosphere here,” said Jimmy. “There is joy here and that has a lot to do with how Dave has maintained his health.”

Above the door to Dave's room, there's a plaque that reads, “Believe.” Bev says she believes in healing for Dave and others with ALS. But the plaque also means something more.

“I believe whatever happens, God will give me the strength and courage to get through it. I'm not mad at God. He didn't give Dave this. We have walked with God every day. Our life has never been easy, but God takes care of us.”

Dave, now 58, sees the world from his hospital bed. Bev has moved a computer into the room so she can talk with her husband about the things she reads on the Internet. In the corner, there's a 42-inch TV set where Dave watches movies often.

“War of the Worlds” and “Finding Nemo” are his favorites.

Lately, he's watched while wearing a Vietnam Veterans cap that Bev bought for him. He's hardly taken it off and that gave his friends an idea. On Veterans' Day, Nov. 11, they gathered outside his window to give Dave the thanks he never received. They read, “We have come to show you our love, our respect for your bravery and our appreciation for what you have done for each one of us.”

With tears in his eyes, Dave raised his right hand in a salute, then gave his friends a thumbs-up. Bev cried.

“It blessed me as much as it did Dave!” she said. “When they honored Dave, I felt like it honored me also as his wife who has seen the effects of Vietnam and the ridicule he faced when I met him at the airport.”

Ironically, a new report released just before Veterans' Day suggests a link between military service and ALS. The Department of Veterans Affairs is studying the research.

On Thursday, Dave's family will gather to continue a Thanksgiving tradition. Each person will say something he's thankful for this year. Bev knows what she will say.

“I am thankful that Dave is alive and we're here together. And I think Dave would say he is thankful he is home with his family.”

Dawn said, “For being a speechless man with ALS, I can feel he loves me and the bond and love that has grown so deeply has not faded.”

Dave Hagan's life always revolved around his family. Now his family's life revolves around him.

“I am learning from Dad that it takes a lot to want to live,” said Wendy. “I see how hard he tries every day to stay alive.”

Bev said the experience of caring for Dave has strengthened her family and inspired Misty to plan to return to school one day to become a nurse.
http://www.mydjconnection.com/articl...news/news1.txt
__________________

.

ALS/MND Registry

.
BobbyB is offline   Reply With QuoteReply With Quote
Old 11-29-2006, 08:19 AM #3
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
Post Diagnosis doesn't stop man from joining in on hunting trip

DANVILLE
Living with ALS
Diagnosis doesn't stop man from joining in on hunting trip
By Damian Gessel
November 29, 2006


DANVILLE — It has been three years since Jeff Dent's body has allowed him to draw a bow, to stalk through the woods behind his family's Valley Township farm, to hunt with his father.

Only six months after Mr. Dent was diagnosed with Amyotrophic lateral sclerosis (ALS), or what's better known as Lou Gehrig's disease, he was confined to a wheelchair. Not long after that, Jeff lost use of his arms and upper body, and his ability to speak soon followed.

Jeff Dent is only 39 years old.

On Monday, he went out to the family farm with his father once more with the hope of spotting a deer on opening day.

"It was pretty great seeing him sitting there in the field," Dave said. "It was special."

For several hours, Jeff waited in his chair, an orange hunting coat draped over his chest, for a deer to cross his field of vision. And though his arms are too weak to lift a gun and fire a shot, Jeff's father believes just being out there is still a thrill for him.

"He used to be a real good hunter. He would get his deer," said Dave.

But hunting, along with all other forms of physical activity, have become an impossibility for Jeff. In the two years since he has been diagnosed with ALS, Mr. Dent has become an invalid, and now requires a full-time caretaker.

Lou Gehrig's Disease

The ALS association defines Lou Gehrig's disease as a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When those cells die, voluntary muscle control and movement dies with them.

Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.

Every day, an average of 15 people are newly diagnosed with ALS — more than 5,600 per year. The average life expectancy for a person with ALS is between two and five years, and only 10 percent of ALS sufferers survive 10 years after their initial diagnosis.

But perhaps the most frustrating thing about ALS is there is no known cure, despite extensive research.

"There's no cure for it," Dave said. "They can't come up with anything."

But Jeff and Dave haven't given up the fight. The pair and the rest of the Dent family routinely head to Harrisburg to participate in fundraisers. A sign in Jeff's front yard, reading "We Walk for Jeffrey Dent" announces their efforts.

The disease, however, has baffled families and researchers since its discovery.

"They just don't know what can be done," said Dave.

Hunters

Hunting runs in the Dent family. Dave's father was a hunter, Dave is a hunter, and Jeff has been hunting since he was 12 years old.

"They're like best buds, Dave is here all the time," said Jeff's caretaker, Shawna Malencore.

When Jeff and his father hunt now, Dave has to be careful his son doesn't get too cold. November mornings are notoriously chilly, and Jeff is unable to move to generate body heat.

Dave admits the pair might not be out again for a while. The weather has to be right, he said.

But if they do go out again, father and son hunting on a clear and cold morning, neither man will likely have much to say about the day's bounty.

"We're not much of a storytelling outfit," Dave said.


E-mail comments to dgessel@thedanvillenews.com.


http://www.dailyitem.com/apps/pbcs.d...NEWS/611290328
__________________

.

ALS/MND Registry

.
BobbyB is offline   Reply With QuoteReply With Quote
Old 12-14-2006, 08:45 AM #4
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

neil h. devlin
A winner's biggest battle
By Neil H. Devlin
Denver Post High School Sports Editor
Article Last Updated:12/14/2006 12:01:47 AM MST


The Denver Broncos 2006 high school football coach of the year, Tim Gribben, second from left, walks with The Denver Post players of the year: Devin Aguilar, Mullen, 1 (Class 5A); Dylan Orms, Wheat Ridge, 5 (4A); Ty Tschacher, Platte Valley, 2(2A); Matt Carrigan, Granada, 66 (8-man); Lucas Devlin, Idalia, 9 (6-man); Clay Garcia, Alamosa, 13 (3A); and Brian Hendricks, Burlington, 42 (1A). The annual Best of the Best for fall will be Dec. 21. (Post / Brian Brainerd)Tim Gribben said he "kind of got some guff" beginning in August, when he mentioned his Class A 6-man Idalia football team, possibly his last one, could be the best he has had in six years as head coach.

That he was probably correct didn't matter to alumni of the high school and never mind there is the grand total of 20 boys among its student body.

"A lot of the kids had brothers who played," Gribben said. "I said it might be the best team I've had, then they remind me how good they were."

As it turns out, everyone associated with Idalia is good, including Gribben, even if he has coached his final game. The Denver Broncos 2006 high school coach of the year isn't giving in to amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig's disease, which is incurable and terminal by weakening and eventually destroying motor neurons.

"I'm doing all right," Gribben said. "I've got weakness in my arms and hands, my legs are weaker, my balance is different and I get pretty fatigued, but as long as I'm still getting up in the morning, I'll still do the things I do until I can't do them."

Gribben, 46, does quite a bit. Tough guys can be soft-spoken. He's a husband, father, friend, school superintendent, principal, athletic director and coach, and those are merely some of his highlights.

A man holding out for a cure to a disease that averages a three-to-five-year survival rate after diagnosis enjoyed a few more highlights with friends and family in the 2006 schoolboy season.

Idalia won its second consecutive 6-man title, its fourth with Gribben and sixth since 1998. Those are the only championships for Idalia.

Under Gribben, who also was a 16-year assistant at Burlington, where he had a hand in other titles, the Wolves currently own Colorado's top winning streak at 23 games.

Gribben's career record is an astounding 64-3, 15-2 in the postseason and 4-1 in

championship games. From 2001 to 2006, Gribben and Idalia were 49-1 in the regular season - the loss was to rival Kit Carson in Week 6 in 2004. The Wolves have won their past 17 regular-season games in succession and past six in the playoffs.
Hi-Plains, which beat the Wolves in the 2004 semifinals, and Peetz, which downed Idalia in the 2002 championship game, are the only other teams to defeat Gribben-led Idalia.

In 2006, the top-ranked Wolves (11-0) opened with a 32-18 home victory against No. 2 Kit Carson. Of the rest, only Hi-Plains, which fell to the Wolves in Week 5, managed to get within 32 points. Idalia also recorded outrageous scoring totals of 92, 78 and 76 points in the regular season.

As for the playoffs, the Wolves waxed Pawnee 72-12 in the quarterfinals and managed to get past Kit Carson 24-23 in the semifinals. It could have been the third time the two teams met over 12 games. Their opener came as a result of other teams not having enough players; their regularly scheduled matchup in the final week of the regular season was cancelled upon mutual agreement - they were convinced seeing each other in the semifinals was likely.

"It was one of the greatest games I've been involved with," Gribben said. "In the end, it came down to defense and an extra point."

And in the finale, Eads scored a touchdown on the opening drive only to get run over 69-6.

"It was pretty memorable. A lot of neat things happened that just played out this season," Gribben said. "It was real neat."

While the effects of ALS have made their presence known, Gribben said he'd just as soon "put on a helmet and play with the kids."

Realistically, he can't do it, although remaining positive has proved uplifting. It's the stress that can wear him him down, the taxing responsibilities of who he is and what he's living with.

"It's something I think about every day," he said. "There's no cure, and they've pretty much told me it's terminal. But I'm going to fight it, and they might find a cure, so it might as well be me."

If it was to be Gribben's final game, which produced another championship and included families such as the Cures, Devlins, Lengels and Terrells, all of whom sent multiple boys to the Wolves program over the years, so be it.

But don't count him out.

"I don't know," Gribben said. "It could be my last game, but we'll wait and see where I'm at at the end of the (school) year, and by the end of summer. We'll see.

"They've been good to me in the community and on the school board. I don't want it to be a distraction. I'll play it by ear."

And that's hardly any guff.
__________________

.

ALS/MND Registry

.

Last edited by BobbyB; 12-14-2006 at 09:29 AM.
BobbyB is offline   Reply With QuoteReply With Quote
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
_Let's Eat Out!: Your Passport to Living Gluten And Allergy Free_ anyone read it? rachelb Gluten Sensitivity / Celiac Disease 4 11-12-2006 09:22 AM
SSDI and living independently Braindrain Social Security Disability 71 10-06-2006 04:48 PM
Our History - Parkie Posts from the Past: 1. Living with PD Jaye Parkinson's Disease 6 09-29-2006 11:18 AM
"The greatest improvement occurred in activities of daily living," Stitcher Parkinson's Disease 1 09-01-2006 07:46 AM
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 06:14 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.