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My Aunt (My moms oldest sister) Died from Lou Gehrigs Disease and this is me telling you what she went though in the process:
The first symptoms that My Aunt experienced were lack of muscular control in feet and her feet started turning under and started to kind of curl on their own. She started feeling weaker and it was getting harder to walk long distances, she thought that she needed to work out more, but that didn’t help. A couple months later, she would be standing in line, and if someone moved in front of her, she wouldn’t be able to lift her feet up, she was shuffling by now, and the doctors thought she had some type of neuropathy (having to do with your nervous system and muscular system) she fell and smashed her knees and broke both hands. (This actually happened when she visited us and we we’re at Krispy Kreme, and a rude man that didn’t know anything was wrong with her got in front of her in line)
She looked perfectly normal and no one would think there was anything wrong with her up until she died.
We have no idea how she got this disease it is only supposed to be 5% genetic and the doctors don’t know how it is transmitted. It is thought that it might be triggered by stress and a virus.
[[Lou Gehrig's Disease#|Edit]]
First she saw her regular doctor and he referred her to a neurologist. When they couldn’t come up with a conclusive diagnosis she went for extensive testing at the Mayo Clinic. This was only 5 months after her first symptoms; she was diagnosed with ALS, also known as Lou Gehrig’s disease.
She lost control of her muscles, she found out that only muscles that are involuntary will keep working and the only involuntary muscles in the body are the heart, the urinary system and the eyes. So the main thing she knew was when she quit being able to breathe if she didn’t go on a respirator, she would suffocate. So she could only communicate with her eyes.
There were some treatments with extreme side effects that could prolong her life but she would give up a very good quality of life. There were drugs available but they were all experimental. She didn't try any of these drugs.
She didn't use any of the drugs but she did get help with her mobility with a special wheel chair, she had special nurses come take care of her, she put ramps in her house and got a special van that the wheel chair could drive up into, we had the bathroom changed so she could wheel her wheelchair into the shower. She had a special hoist above her bed so they could lift her up because she turned into dead weight.
She died from ALS with-in one year of her diagnosis.
Her children were changed forever, her husband found a new wife who is wonderful to him and her children(my cousins).
She was able to get social security early, so that helped, her family borrowed from her life insurance, she had no disability or long term healthcare coverage. She was never hospitalized, but she did make a couple of trips to the emergency room from falls. So I think this ended up costing a few hundred thousand dollars
By Carrie Hartsfield


How ALS works and the process in which it kills you:
ALS stands for Amyotrophic lateral sclerosis
It is a neurodegenerative disease that affects the brain to the spinal cord and from the spinal cord to the muscles throughout the body.
The progressive degeneration of the motor neurons eventually leads to their death.
When the motor neurons die the ability for the brain to initiate and control the muscles is lost.
I didn’t know what motor neurons were so I looked it up and this is what it is:
A neuron that conveys impulses from the central nervous system to a muscle, gland, or other effector tissue. http://www.answers.com/topic/motoneuron-1

In the story about my aunt I said how ALS stops all of the voluntary muscles, but none of the involuntary muscles. This paragraph describes this better:
"The heart and the digestive system are also made of muscle but a different kind, and their movements are not under voluntary control. When your heart beats or a meal is digested, it all happens automatically. Therefore, the heart and digestive system are not involved in ALS. Breathing also may seem to be involuntary. Remember, though, while you cannot stop your heart, you can hold your breath - so be aware that ALS may eventually have an impact on breathing."
What the ALS means: It stands for Amyotrophic Lateral Sclerosis
"A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment–"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies."
Pasted from <http://www.alsa.org/als/what.cfm>
Treatments and trying to find a cure:
"Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease.
While there is not a cure or treatment today that halts or reverses ALS, there is one FDA approved drug, riluzole, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.
Importantly, there are significant devices and therapies that can manage the symptoms of ALS that help people maintain as much independence as possible and prolong survival. It is important to remember that ALS is a quite variable disease; no two people will have the same journey or experiences. There are medically documented cases of people in whom ALS ‘burns out,’ stops progressing or progresses at a very slow rate. No matter what your individual course or situation may be, The ALS Association and your medical team are here to help."
Pasted from <http://www.alsa.org/als/what.cfm>
http://www.alsa.org/als/what.cfm


Here is more basic information about ALS from the ALS Association, a group dedicated to "care for and support all people living with Lou Gehrig’s Disease as we leave no stone unturned in our relentless search for a cure."

Here is information about The Robert Packard Center for ALS Research. It is the only center of its kind dedicated solely to the disease. Although the Center operates within the Johns Hopkins School of Medicine in Baltimore, its scope is international.

Here is a sampling of info from that site:

ALS statistics
  • Most people who develop ALS are between the ages of 40 and 70, although the disease can occur at a younger age.
  • It occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
  • It affects as many as 30,000 in the United States, with 5,000 new cases diagnosed each year.
  • Estimates suggest that ALS is responsible for as many as five of every 100,000 deaths in people aged 20 or older. ALS is most common among persons over age 60.
  • The incidence of ALS is five times higher than Huntington's disease and about equal to multiple sclerosis.
Many ALS patients can live longer and more productive lives because of current research into the cause, prevention and cure for the disease. Improvements in medical management, including nutrition and breathing, regularly increase patient survival. Fifty percent of affected patients live at least three or more years after diagnosis; 20 percent live five years or more; and up to 10 percent will survive more than ten years.

Lou Gehrig's disease, another name for ALS, is named for former Yankee's baseball player Lou Gehrig. He was born in 1903 in New York city, the son of German immigrants Heinrich and Christina Gehrig. After a collegiate baseball career, he joined the New York Yankees in 1925 and along with Babe Ruth led the Yankees to dominate the baseball world in the twenties. During his career, he earned the nickname "Iron Horse" for his strength to overcome multiple injuries and maintained a .300 batting average for 12 years of his career. He also won the Triple Crown in 1934. In 1938, when his playing ability noticably dropped, he was diagnosed with amyotrophic lateral sclerosis (ALS). Because of this diagnosis, which ruined his baseball career, ALS is sometimes called Lou Gehrig's disease. On June 2, 1941, Lou Gehrig died of ALS, but not before being inducted into the National Baseball Hall of Fame in 1934.