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Do you remember the ICE BUCKET CHALLENGE?? Most people did it just for fun but there was a true meaning behind it!!! As most of you know, Chuck has been having issues with his hands and arms for a few years now and we finally got an answer as to why in January. If I have not already told you, please be understanding, it's been difficult since we found out. We have told our oldest children but have not told our youngest, Brylie, so please mindful of that if you see or speak to her or us in front of her. Chuck has been diagnosed with ALS, aka Lou Garrets Disease. It is a disease that affects the motor functions of the body, walking, talking, speaking, eating and breathing, unfortunately there is no cure and the hale mary treatments are worse than the disease.
The most common cause of death for people with ALS is respiratory failure. On average, death occurs within 3 - 5years after symptoms begin. We are not 100% sure as to where he stands with his progression other than he has had it for about 3-4 years already but there are no two cases alike and everyone's progression is different. Doctors are not sure how fast or slow he will progress but they have already set him up for physical, occupational and speech therapy since he is already having difficulties with many of these activities. They figure this is the last year he will be able to do most things on his own. We have decided that instead of focusing on the negative aspects of this, we are going to focus on the positive. As our time with him is unknown, we would like to take our family to New York this summer to visit his mom and sister, as his other sister passed recently. He wants his children to see where he grew up as well as some traveling to create some lifelong memories with the kids before Chuck gets to the point that he can't. We are putting our family in God's hands and prayers are always welcomed and very appreciated. If you know me or Chuck, we are never the ones to ask for help and this situation has made us humble and grateful for everyday we have. We work hard for what we have and we try to teach our children to work for what they want as well. As much as his pride stands in the way, we both know that at this point, this will be our only way to accomplish this goal with our family. We are asking for donations for our summer trip that we plan to take in our RV. We will be able to cover our expenses at home while we are gone but not both, so if you would like to donate through this go fund me page, we would greatly appreciate it. If you want to make a donation in another form, please feel free to contact me through messenger.
I have included a summary of what ALS is so that everyone might have a better idea of what we are dealing with.
Amyotrophic lateral sclerosis (ALS)
Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), or ALS, is a progressive nervous system (neurological) disease that destroys nerve cells and causes disability.
ALS is often called Lou Gehrig's disease, after the famous baseball player who was diagnosed with it. ALS is a type of motor neuron disease in which nerve cells gradually break down and die.
Doctors usually don't know why ALS occurs. Some cases are inherited.
ALS often begins with muscle twitching and weakness in a limb, or slurred speech. Eventually, ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for ALS, and eventually the disease is fatal.
Symptoms
Early signs and symptoms of ALS include:
Difficulty walking or doing your normal daily activities
Tripping and falling
Weakness in your leg, feet or ankles
Hand weakness or clumsiness
Slurred speech or trouble swallowing
Muscle cramps and twitching in your arms, shoulders and tongue
Difficulty holding your head up or keeping good posture
ALS often starts in the hands, feet or limbs, and then spreads to other parts of your body. As the disease advances and nerve cells are destroyed, your muscles progressively weaken. This eventually affects chewing, swallowing, speaking and breathing.
ALS doesn't usually affect your bowel or bladder control, your senses or your thinking ability.
Causes
ALS is inherited in 5 to 10 percent of cases, while the rest have no known cause.
Researchers are studying several possible causes of ALS, including:
Gene mutation. Various genetic mutations can lead to inherited ALS, which causes nearly the same symptoms as the noninherited form.
Chemical imbalance. People with ALS generally have higher than normal levels of glutamate, a chemical messenger in the brain, around the nerve cells in their spinal fluid. Too much glutamate is known to be toxic to some nerve cells.
Disorganized immune response. Sometimes a person's immune system begins attacking some of his or her body's own normal cells, which may lead to the death of nerve cells.
Protein mishandling. Mishandled proteins within the nerve cells may lead to a gradual accumulation of abnormal forms of these proteins in the cells, destroying the nerve cells.
Risk factors
Established risk factors for ALS include:
Heredity. Five to 10 percent of the people with ALS inherited it (familial ALS). In most people with familial ALS, their children have a 50-50 chance of developing the disease.
Age. ALS risk increases with age, and is most common between the ages of 40 and 60.
Sex. Before the age of 65, slightly more men than women develop ALS. This sex difference disappears after age 70.
Genetics. Some studies examining the entire human genome (genomewide association studies) found many similarities in the genetic variations of people with familial ALS and some people with noninherited ALS. These genetic variations might make people more susceptible to ALS.
Environmental factors may trigger ALS. Some that may affect ALS risk include:
Smoking. Smoking is the only likely environmental risk factor for ALS. The risk seems to be greatest for women, particularly after menopause.
Environmental toxin exposure. Some evidence suggests that exposure to lead or other substances in the workplace or at home may be linked to ALS. Much study has been done, but no single agent or chemical has been consistently associated with ALS.
Military service. Recent studies indicate that people who have served in the military are at higher risk of ALS. It's unclear exactly what about military service may trigger the development of ALS. It may include exposure to certain metals or chemicals, traumatic injuries, viral infections, and intense exertion.
Complications
As the disease progresses, people with ALS experience complications, which may include:
Breathing problems
Over time, ALS paralyzes the muscles you use to breathe. You may need a device to help you breathe at night, similar to what someone with sleep apnea might wear. For example, you may be given continuous positive airway pressure (CPAP) or bi-level positive airway pressure (BiPAP) to assist with your breathing at night.
Some people with advanced ALS choose to have a tracheostomy — a surgically created hole at the front of the neck leading to the windpipe (trachea) — for full-time use of a respirator that inflates and deflates their lungs.
The most common cause of death for people with ALS is respiratory failure. On average, death occurs within three to five years after symptoms begin.
Speaking problems
Most people with ALS will develop trouble speaking over time. This usually starts as occasional, mild slurring of words, but progresses to become more severe. Speech eventually becomes more difficult for others to understand, and people with ALS often rely on other communication technologies to communicate.
Eating problems
People with ALS can develop malnutrition and dehydration from damage to the muscles that control swallowing. They are also at higher risk of getting food, liquids or saliva into the lungs, which can cause pneumonia. A feeding tube can reduce these risks and ensure proper hydration and nutrition.
Dementia
Some people with ALS experience problems with memory and making decisions, and some are eventually diagnosed with a form of dementia called frontotemporal dementia.
The most common cause of death for people with ALS is respiratory failure. On average, death occurs within 3 - 5years after symptoms begin. We are not 100% sure as to where he stands with his progression other than he has had it for about 3-4 years already but there are no two cases alike and everyone's progression is different. Doctors are not sure how fast or slow he will progress but they have already set him up for physical, occupational and speech therapy since he is already having difficulties with many of these activities. They figure this is the last year he will be able to do most things on his own. We have decided that instead of focusing on the negative aspects of this, we are going to focus on the positive. As our time with him is unknown, we would like to take our family to New York this summer to visit his mom and sister, as his other sister passed recently. He wants his children to see where he grew up as well as some traveling to create some lifelong memories with the kids before Chuck gets to the point that he can't. We are putting our family in God's hands and prayers are always welcomed and very appreciated. If you know me or Chuck, we are never the ones to ask for help and this situation has made us humble and grateful for everyday we have. We work hard for what we have and we try to teach our children to work for what they want as well. As much as his pride stands in the way, we both know that at this point, this will be our only way to accomplish this goal with our family. We are asking for donations for our summer trip that we plan to take in our RV. We will be able to cover our expenses at home while we are gone but not both, so if you would like to donate through this go fund me page, we would greatly appreciate it. If you want to make a donation in another form, please feel free to contact me through messenger.
I have included a summary of what ALS is so that everyone might have a better idea of what we are dealing with.
Amyotrophic lateral sclerosis (ALS)
Amyotrophic lateral sclerosis (a-my-o-TROE-fik LAT-ur-ul skluh-ROE-sis), or ALS, is a progressive nervous system (neurological) disease that destroys nerve cells and causes disability.
ALS is often called Lou Gehrig's disease, after the famous baseball player who was diagnosed with it. ALS is a type of motor neuron disease in which nerve cells gradually break down and die.
Doctors usually don't know why ALS occurs. Some cases are inherited.
ALS often begins with muscle twitching and weakness in a limb, or slurred speech. Eventually, ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for ALS, and eventually the disease is fatal.
Symptoms
Early signs and symptoms of ALS include:
Difficulty walking or doing your normal daily activities
Tripping and falling
Weakness in your leg, feet or ankles
Hand weakness or clumsiness
Slurred speech or trouble swallowing
Muscle cramps and twitching in your arms, shoulders and tongue
Difficulty holding your head up or keeping good posture
ALS often starts in the hands, feet or limbs, and then spreads to other parts of your body. As the disease advances and nerve cells are destroyed, your muscles progressively weaken. This eventually affects chewing, swallowing, speaking and breathing.
ALS doesn't usually affect your bowel or bladder control, your senses or your thinking ability.
Causes
ALS is inherited in 5 to 10 percent of cases, while the rest have no known cause.
Researchers are studying several possible causes of ALS, including:
Gene mutation. Various genetic mutations can lead to inherited ALS, which causes nearly the same symptoms as the noninherited form.
Chemical imbalance. People with ALS generally have higher than normal levels of glutamate, a chemical messenger in the brain, around the nerve cells in their spinal fluid. Too much glutamate is known to be toxic to some nerve cells.
Disorganized immune response. Sometimes a person's immune system begins attacking some of his or her body's own normal cells, which may lead to the death of nerve cells.
Protein mishandling. Mishandled proteins within the nerve cells may lead to a gradual accumulation of abnormal forms of these proteins in the cells, destroying the nerve cells.
Risk factors
Established risk factors for ALS include:
Heredity. Five to 10 percent of the people with ALS inherited it (familial ALS). In most people with familial ALS, their children have a 50-50 chance of developing the disease.
Age. ALS risk increases with age, and is most common between the ages of 40 and 60.
Sex. Before the age of 65, slightly more men than women develop ALS. This sex difference disappears after age 70.
Genetics. Some studies examining the entire human genome (genomewide association studies) found many similarities in the genetic variations of people with familial ALS and some people with noninherited ALS. These genetic variations might make people more susceptible to ALS.
Environmental factors may trigger ALS. Some that may affect ALS risk include:
Smoking. Smoking is the only likely environmental risk factor for ALS. The risk seems to be greatest for women, particularly after menopause.
Environmental toxin exposure. Some evidence suggests that exposure to lead or other substances in the workplace or at home may be linked to ALS. Much study has been done, but no single agent or chemical has been consistently associated with ALS.
Military service. Recent studies indicate that people who have served in the military are at higher risk of ALS. It's unclear exactly what about military service may trigger the development of ALS. It may include exposure to certain metals or chemicals, traumatic injuries, viral infections, and intense exertion.
Complications
As the disease progresses, people with ALS experience complications, which may include:
Breathing problems
Over time, ALS paralyzes the muscles you use to breathe. You may need a device to help you breathe at night, similar to what someone with sleep apnea might wear. For example, you may be given continuous positive airway pressure (CPAP) or bi-level positive airway pressure (BiPAP) to assist with your breathing at night.
Some people with advanced ALS choose to have a tracheostomy — a surgically created hole at the front of the neck leading to the windpipe (trachea) — for full-time use of a respirator that inflates and deflates their lungs.
The most common cause of death for people with ALS is respiratory failure. On average, death occurs within three to five years after symptoms begin.
Speaking problems
Most people with ALS will develop trouble speaking over time. This usually starts as occasional, mild slurring of words, but progresses to become more severe. Speech eventually becomes more difficult for others to understand, and people with ALS often rely on other communication technologies to communicate.
Eating problems
People with ALS can develop malnutrition and dehydration from damage to the muscles that control swallowing. They are also at higher risk of getting food, liquids or saliva into the lungs, which can cause pneumonia. A feeding tube can reduce these risks and ensure proper hydration and nutrition.
Dementia
Some people with ALS experience problems with memory and making decisions, and some are eventually diagnosed with a form of dementia called frontotemporal dementia.
Organizer
Montina Wise
Organizer
Tallahassee, FL