i wrote this 4 years ago, but i still love to repost it.

Eight years ago

February 15, 2003

9:23 am

My Mother

passed away of ALS (Lou Gehrig) disease.

Around this time every year i try to type a little sompthing in honor of her
just to give you all just a little taste of what my familys been threw
&the terrible disease that not enough people know about.

BACKGROUND:

i grew up in a semi-normal home.
My parents met in their collage years &married around the age of 20.
I was born about 3 years later and my brother Josh was born 3 years after me.

Both my parents were and still are strong christians.
My dad worked for our church
My mom did secretary work for a christian organization.
We had our struggles like any other family,
but overall we supported and loved each other deeply.

above: my brother, me and my mom at Longwood Gardens. My mom loved it there so we visited often.

THE ACCIDENT:
In September of 2001, my mother fell and twisted her ancle at my aunts house. She went threw endless physical theorpy for it but it just seemed to get worse and worse. Eventually, she couldnt move it at all. Her other leg had also become limp and she had to use a walker. At this point, the doctors knew sompthing was terribly wrong. It took a very long time for them to figure out what she really had because the doctors thought it was MS. After seeing many specialists, they knew it was ALS disease. Over time, it took over her entire body. Finger by finger, her strength was disapearing….but only on the outside.

PREPARING TO DIE:
My mother was a amazing women. she was an organizer to the max. She knew that this disease would eventually kill her so she made sure she was ready…with her friends, family, and especially God.
She made special voice reccordings on cds for me to listen to at differnt parts of my life. i had one for my sixteenth birthday and ill have a few more for my graduation and even my wedding…they are special messages that were painful for her to say and think about missing, but it makes me so excited to hear in her words out of her mouth advice for me. She also set aside lots of little gifts, a lot of it her own personal jewlrey. She had even bought 2 big teddy bears for me and my brother to hug at the funeral (seen in the coffin picture) and little bears for all my cusins.

above: my father and mother on our last trip to long beach island summer 2002. my mom was already in a wheel chair at this point.

above: my mom in the red with her two sisters to her left, her father up top who died in a car crash last month and her mother to her right.

above: my father and mother and the rest of our churchs old worship team.

THE PHONE CALL:
the day that would change my life forever…i was on my churchs spring trip at some random camp. i was just getting into the mess hall to eat breakfast when my youth pastor came up to me and said “i just recieved a phone call from your father. your mothers not doing well and he wants me to drive you home.” honestly, i didnt want to go. i was having a lot of fun with my friends and there had been a lot of false alarms with my mom like this. it was snowing so hard it took a long time to get home. when i got there, i walked into the house &realized how serious this was. my mom had been on hospice care…at this point her body was completly paralized but she was still completly sane..she just had trouble getting her words out. i went up to her and i could tell she wasnt guna make it much longer. she was sitting in her brown chair in the living room and was having much trouble breathing and her speach was so slurred that it was hard to understand anything she was trying to say. the only and last thing that she said to me that day was “i love you and im so proud of you.” i replyed saying “no, im proud of you!” my dad picked her body up in his arms and sat with her on him on our living room couch as she took her last breaths in front of us and passed away. i asked my dad “is she still there?” and he replied hystericly crying, “i dont think so.” our youth pastor and senior pastor from church were there with us. i didnt know what to do. it didnt seem real. my mother? dead? in my house? shes never coming back? it was mindblowing and i was numb. completly numb.somehow, i ended up going back that night to the trip with my youth group. as soon as i walked into the room where everyone was, they were all lined up. it was silent and everyone was in a line, ready to mourn with me. they all knew my mother from church. they were such a comfort to me that day and for months to come and for that, i am very grateful.

FAST FORWARD:

to think that its been 4 (now 8) years is incredable. its true when they say that you never know what you have untill its gone….im proud to say that i was her daughtor. she was extreamly creative, smart and beautiful and to carry on those traits is an honor. i think people underestimate me a lot and dont realize how strong of a person i am. im normal, i greive, ive lost but i know that God has a plan for my life just like he had a plan for hers and that is what makes me carry on. i have hope. i have a future to come…and to know that i am not the one in control of that future is comforting to me. i stand strong.

ABOUT ALS:

What is ALS?

ALS stands for Amyotrophic Lateral Sclerosis, sometimes called Lou Gehrig’s disease.It is a rapidly progressive and fatal neuromuscular disease that ischaracterized by degeneration of a select group of nerve cells andpathways (motor neurons) in the brain and spinal cord. This loss ofmotor neurons leads to progressive paralysis of the voluntary muscles.The heart is not a voluntary muscle, and therefore, remains unaffectedby the disease. However, since breathing is controlled voluntarily bythe chest muscles, death usually occurs when the chest muscles are nolonger able to help the lungs achieve adequate oxygenation. Generally,there is little impairment of the brain or the senses.

“Amyotrophic” means:

A = absence of
myo = muscle
trophic = nourishment
lateral = side (of spine)
sclerosis = hardening or scarring

ALSis not contagious, but it is fatal. For the most part, the battle isshort, with 80% losing their lives within two to five years ofdiagnosis. While between 10 and 20% may live ten years or more, othersend up lasting only a few months. Research is being conducted in areasrelating to genetic predispositions, viral or infectious agents,environmental toxins and immunological changes.

For some people, the muscles for speaking, swallowing or breathingare the first to be affected. This is known as Bulbar ALS. The term”bulbar” refers to the motor neurons located in the bulb region of thebrain stem, that control the muscles used for chewing, swallowing, andspeaking. ALS symptoms, and the order in which they occur, vary fromone person to another.

In 85% of cases, ALS effects the lower portion of the spinalcord first. In these cases, muscle weakness, cramps and weakenedreflexes effects the muscles in the arms and legs as the first signs ofALS. The rate of muscle loss can vary significantly from person toperson with some patients having long periods with very slowdegeneration.

Signs of motor neuron degeneration

Upper Motor Neuron Degeneration

muscle stiffness or rigidity
emotional lability (decreased ability to control emotions)
excessive fatigue
dysphagia (difficulty swallowing)
dyspnea (shortness of breath)
dysarthria (a speech disorder caused by impairment of the muscles used for speaking)

Lower Motor Neuron Degeneration

muscle weakness and atrophy
involuntary contraction of muscle fibres
muscle cramps
weakened reflexes
flaccidity (decreased muscle tone)
difficulty swallowing
disordered articulation
shortness of breath at rest

Is it a Rare Disease?

ALSis not considered a rare disease. Approximately 2,000 Canadianscurrently live with ALS. Two or three Canadians lose their battle tothis devastating disease every day. In Ontario, roughly 1,000 peoplehave ALS at any one time.

“ALS is clearly the most common cause of neurological death onan annual basis,” Dr. Michael Strong, clinician at the UniversityHealth Sciences Centre and research scientist at the Robarts ResearchInstitute, London, Ontario.

How does one get ALS?

Wedon’t really know what causes ALS, but we do know that it can strikeany adult at any time. While the usual age at onset is between 45 and65, people as young as 17 have been diagnosed in the past. Between 5and 10% of ALS cases are found in the same families, meaning that theyare “familial”, and are definitely linked genetically. But for the mostpart, diagnosis is sporadic and we don’t know how it is caused.

What are the early symptoms?

ALSusually becomes apparent either in the legs, the arms, the throat orthe upper chest area. Some people begin to trip and fall, some maynotice muscle loss in their hands and arms and some find it hard toswallow and slur their speech.

ALS is difficult to diagnose. There is no specific testavailable that will either rule out or confirm the presence of ALS.Diagnosis is usually made through a ‘diagnosis of exclusions’.Neurologists conduct a number of tests, thereby ruling out otherdisorders that may cause similar symptoms, such as strokes or multiplesclerosis and if nothing else is positive and yet the symptoms continueto worsen, ALS is often the reason.

What are the effects of ALS?

BecauseALS frequently takes its toll before being positively diagnosed, manypatients are debilitated before learning they have contracted ALS. Thedisease usually does not affect the senses - taste, touch, sight,smell, and hearing - or the mind. ALS wreaks a devastating effect onpatients as well as their families. As they cope with the prospect ofadvancing disability and eventually death, it consumes their financialand emotional reserves. It is a costly disease in its later stages,demanding both extensive nursing care and expensive equipment.

What can be done about ALS?

Thereis no known cure at this time and very little in the way of treatmentthat will have an effect on the disease itself. However, there is muchthat the health care community does to ensure quality of life care forthe person with ALS.

Is there hope for people with ALS?

Atthe moment, there is a drug trial being conducted that may prolong lifeminimally. Research is looking to find not only the cause of thedisease so that a cure can be developed but also other medications ortreatments that can help until a cure is found. With improved knowledgeabout ALS, healthcare providers and families can help people livingwith ALS live life more fully. The services offered by the ALSSocieties of Canada help improve the quality of life for those who livewith ALS and their families.

»Reblog«

COMMENTS

trueloversromance reblogged this from ratch and added:

: i wrote this 4 years ago, but i still love to repost it.
timsheleastofeden said: darling, you’re so incredibly strong and i’m so blessed that you’re a part of my life and that I got to read this. <3 also, I miss you. We need to hang out soon.
lukelindon reblogged this from ratch and added:

my dad’s parents. we got the call halfway there...had started failing. he had been...
lukelindon liked this
ratch posted this

1/1


i am ratch. i am learning to love my life more than i am afraid of it. Home Ask Me Archive Following	Text Post Mon, Feb. 14, 2011 4 notes i wrote this 4 years ago, but i still love to repost it. Eight years ago February 15, 2003 9:23 am My Mother passed away of ALS (Lou Gehrig) disease. Around this time every year i try to type a little sompthing in honor of her just to give you all just a little taste of what my familys been threw &the terrible disease that not enough people know about. BACKGROUND: i grew up in a semi-normal home. My parents met in their collage years &married around the age of 20. I was born about 3 years later and my brother Josh was born 3 years after me. Both my parents were and still are strong christians. My dad worked for our church My mom did secretary work for a christian organization. We had our struggles like any other family, but overall we supported and loved each other deeply. above: my brother, me and my mom at Longwood Gardens. My mom loved it there so we visited often. THE ACCIDENT: In September of 2001, my mother fell and twisted her ancle at my aunts house. She went threw endless physical theorpy for it but it just seemed to get worse and worse. Eventually, she couldnt move it at all. Her other leg had also become limp and she had to use a walker. At this point, the doctors knew sompthing was terribly wrong. It took a very long time for them to figure out what she really had because the doctors thought it was MS. After seeing many specialists, they knew it was ALS disease. Over time, it took over her entire body. Finger by finger, her strength was disapearing….but only on the outside. PREPARING TO DIE: My mother was a amazing women. she was an organizer to the max. She knew that this disease would eventually kill her so she made sure she was ready…with her friends, family, and especially God. She made special voice reccordings on cds for me to listen to at differnt parts of my life. i had one for my sixteenth birthday and ill have a few more for my graduation and even my wedding…they are special messages that were painful for her to say and think about missing, but it makes me so excited to hear in her words out of her mouth advice for me. She also set aside lots of little gifts, a lot of it her own personal jewlrey. She had even bought 2 big teddy bears for me and my brother to hug at the funeral (seen in the coffin picture) and little bears for all my cusins. above: my father and mother on our last trip to long beach island summer 2002. my mom was already in a wheel chair at this point. above: my mom in the red with her two sisters to her left, her father up top who died in a car crash last month and her mother to her right. above: my father and mother and the rest of our churchs old worship team. THE PHONE CALL: the day that would change my life forever…i was on my churchs spring trip at some random camp. i was just getting into the mess hall to eat breakfast when my youth pastor came up to me and said “i just recieved a phone call from your father. your mothers not doing well and he wants me to drive you home.” honestly, i didnt want to go. i was having a lot of fun with my friends and there had been a lot of false alarms with my mom like this. it was snowing so hard it took a long time to get home. when i got there, i walked into the house &realized how serious this was. my mom had been on hospice care…at this point her body was completly paralized but she was still completly sane..she just had trouble getting her words out. i went up to her and i could tell she wasnt guna make it much longer. she was sitting in her brown chair in the living room and was having much trouble breathing and her speach was so slurred that it was hard to understand anything she was trying to say. the only and last thing that she said to me that day was “i love you and im so proud of you.” i replyed saying “no, im proud of you!” my dad picked her body up in his arms and sat with her on him on our living room couch as she took her last breaths in front of us and passed away. i asked my dad “is she still there?” and he replied hystericly crying, “i dont think so.” our youth pastor and senior pastor from church were there with us. i didnt know what to do. it didnt seem real. my mother? dead? in my house? shes never coming back? it was mindblowing and i was numb. completly numb.somehow, i ended up going back that night to the trip with my youth group. as soon as i walked into the room where everyone was, they were all lined up. it was silent and everyone was in a line, ready to mourn with me. they all knew my mother from church. they were such a comfort to me that day and for months to come and for that, i am very grateful. FAST FORWARD: to think that its been 4 (now 8) years is incredable. its true when they say that you never know what you have untill its gone….im proud to say that i was her daughtor. she was extreamly creative, smart and beautiful and to carry on those traits is an honor. i think people underestimate me a lot and dont realize how strong of a person i am. im normal, i greive, ive lost but i know that God has a plan for my life just like he had a plan for hers and that is what makes me carry on. i have hope. i have a future to come…and to know that i am not the one in control of that future is comforting to me. i stand strong. ABOUT ALS: What is ALS? ALS stands for Amyotrophic Lateral Sclerosis, sometimes called Lou Gehrig’s disease.It is a rapidly progressive and fatal neuromuscular disease that ischaracterized by degeneration of a select group of nerve cells andpathways (motor neurons) in the brain and spinal cord. This loss ofmotor neurons leads to progressive paralysis of the voluntary muscles.The heart is not a voluntary muscle, and therefore, remains unaffectedby the disease. However, since breathing is controlled voluntarily bythe chest muscles, death usually occurs when the chest muscles are nolonger able to help the lungs achieve adequate oxygenation. Generally,there is little impairment of the brain or the senses. “Amyotrophic” means: A = absence of myo = muscle trophic = nourishment lateral = side (of spine) sclerosis = hardening or scarring ALSis not contagious, but it is fatal. For the most part, the battle isshort, with 80% losing their lives within two to five years ofdiagnosis. While between 10 and 20% may live ten years or more, othersend up lasting only a few months. Research is being conducted in areasrelating to genetic predispositions, viral or infectious agents,environmental toxins and immunological changes. For some people, the muscles for speaking, swallowing or breathingare the first to be affected. This is known as Bulbar ALS. The term”bulbar” refers to the motor neurons located in the bulb region of thebrain stem, that control the muscles used for chewing, swallowing, andspeaking. ALS symptoms, and the order in which they occur, vary fromone person to another. In 85% of cases, ALS effects the lower portion of the spinalcord first. In these cases, muscle weakness, cramps and weakenedreflexes effects the muscles in the arms and legs as the first signs ofALS. The rate of muscle loss can vary significantly from person toperson with some patients having long periods with very slowdegeneration. Signs of motor neuron degeneration Upper Motor Neuron Degeneration muscle stiffness or rigidity emotional lability (decreased ability to control emotions) excessive fatigue dysphagia (difficulty swallowing) dyspnea (shortness of breath) dysarthria (a speech disorder caused by impairment of the muscles used for speaking) Lower Motor Neuron Degeneration muscle weakness and atrophy involuntary contraction of muscle fibres muscle cramps weakened reflexes flaccidity (decreased muscle tone) difficulty swallowing disordered articulation shortness of breath at rest Is it a Rare Disease? ALSis not considered a rare disease. Approximately 2,000 Canadianscurrently live with ALS. Two or three Canadians lose their battle tothis devastating disease every day. In Ontario, roughly 1,000 peoplehave ALS at any one time. “ALS is clearly the most common cause of neurological death onan annual basis,” Dr. Michael Strong, clinician at the UniversityHealth Sciences Centre and research scientist at the Robarts ResearchInstitute, London, Ontario. How does one get ALS? Wedon’t really know what causes ALS, but we do know that it can strikeany adult at any time. While the usual age at onset is between 45 and65, people as young as 17 have been diagnosed in the past. Between 5and 10% of ALS cases are found in the same families, meaning that theyare “familial”, and are definitely linked genetically. But for the mostpart, diagnosis is sporadic and we don’t know how it is caused. What are the early symptoms? ALSusually becomes apparent either in the legs, the arms, the throat orthe upper chest area. Some people begin to trip and fall, some maynotice muscle loss in their hands and arms and some find it hard toswallow and slur their speech. ALS is difficult to diagnose. There is no specific testavailable that will either rule out or confirm the presence of ALS.Diagnosis is usually made through a ‘diagnosis of exclusions’.Neurologists conduct a number of tests, thereby ruling out otherdisorders that may cause similar symptoms, such as strokes or multiplesclerosis and if nothing else is positive and yet the symptoms continueto worsen, ALS is often the reason. What are the effects of ALS? BecauseALS frequently takes its toll before being positively diagnosed, manypatients are debilitated before learning they have contracted ALS. Thedisease usually does not affect the senses - taste, touch, sight,smell, and hearing - or the mind. ALS wreaks a devastating effect onpatients as well as their families. As they cope with the prospect ofadvancing disability and eventually death, it consumes their financialand emotional reserves. It is a costly disease in its later stages,demanding both extensive nursing care and expensive equipment. What can be done about ALS? Thereis no known cure at this time and very little in the way of treatmentthat will have an effect on the disease itself. However, there is muchthat the health care community does to ensure quality of life care forthe person with ALS. Is there hope for people with ALS? Atthe moment, there is a drug trial being conducted that may prolong lifeminimally. Research is looking to find not only the cause of thedisease so that a cure can be developed but also other medications ortreatments that can help until a cure is found. With improved knowledgeabout ALS, healthcare providers and families can help people livingwith ALS live life more fully. The services offered by the ALSSocieties of Canada help improve the quality of life for those who livewith ALS and their families. »Reblog« COMMENTS trueloversromance reblogged this from ratch and added: : i wrote this 4 years ago, but i still love to repost it. timsheleastofeden said: darling, you’re so incredibly strong and i’m so blessed that you’re a part of my life and that I got to read this. <3 also, I miss you. We need to hang out soon. lukelindon reblogged this from ratch and added: my dad’s parents. we got the call halfway there...had started failing. he had been... lukelindon liked this ratch posted this 1/1