I do not want to associate the month of May with ALS! I want to associate this month with spring and my son's birthday, flowers, and Mother's Day. Not a shitty (excuse my French, and no offence to the French) neuromuscular demon that ruins lives. But you don't always get what you want, sometimes things don't turn out how you planned, so you have to go to Plan B! Now, this year and for every year for the rest of my life I will associate ALS with the month of May, I will preach and lecture and yell from the roof tops to bring awareness to Amotrophic Lateral Sclerosis, aks ALS, aka Lou Gehrig's Disease, aks Motor Neuron Disease, aka MND, whatever you want to call it EVERYONE needs to be AWARE of it and it needs to be put to a stop! This screw up of the nerve cells in the brain and spinal cord that causes motor neurons to die essentially killing the body in only 2-5 years needs to be cured and in the meantime everyone needs to know what this disease is, and what it does, so that the people and their families just like you living with it can have the care, the equipement, and support they need to live the best quality of life possible.
First off all, everyone needs to know that no matter how uncomfortable they are with thinking about Amyotrophic Lateral Sclerosis, with saying Amyotrophic Lateral Sclerosis (and I know it's hard to say), and with all the terrible uncomfortable things that happen to a person who has Amyotrophic Lateral Sclerosis it CAN happen to you! Everyone who is touched by this disease is just like you and me, and one day without warning there might be weakness in a finger, or trouble with speaking, maybe a limp, or a twitch, a cough because swollowing is difficult, they will brush it off...probably too much caffeine or maybe getting old, a pulled muscle or stress. All of these people and their families finally go to their doctor, most are sent for many tests, most doctors are unsure, many have to go through scary months of the unknown only to hear those three letters that forever seel their fate~ALS. It is easier to feel sorry for those people, to say oh that is terrible and move on with the business of life, not many people want to think about terminal illness, or death. It is not easy to think about paralysis, cramps, atrophy, drool, feeding tubes, trachs, bipaps, ventilators...the average person doesn't even know what most of that even is, but when ALS enters into your family all of those things become a reality. People need to be aware so that a cure can be found, a treatment, but they also need to be aware for those people living with ALS now, those people deserve to live comfortably and happily with everything they need to do that and not go broke!
The day those letters are uttered by an uncomfortable doctor in a cold office, and you are told 2-5 years, and given a script for Riluzole, most families don't know what to do next. They may need to leave their job, what about their house will they be able to remodel get in and out in a wheelchair, what about work, what about their children, what about finances...so many questions, so many unknowns. The doctors cannot answer all the questions, why? because the answers are unknown, every case is different, everyone progresses at a different pace. What do you do with this news, how do you tell people, what kind of stigma will this carry? All the while the person with ALS is living with a body that is malfunctioning, they may have pain, they may be unable to do the acitivities of daily living that we all take for granted. To make it even more confusing, the person doesn't really look sick at first, but as things become difficult they get the stares and sorry looks, people don't know what to say or how to act when you say I have ALS. Families and people living with ALS may feel isolated, sad, hopeless. This can be changed with AWARENESS!
If everyone who I can find who will listen to me learns something about ALS and tells at least one person they know we can spread awareness. Social Media is here today, we have Facebook and Twitter, You Tube and Vine, and all the other stuff that I probably don't even know about. We can all tell a story, we can break out of the comfort zone and SPEAK UP, we can teach people what ALS is and what it can do and what we need to make life better for people living with ALS. I am a Nurse, I am a Social Worker, I am an Advocate, I will speak for my husband whom I love very much and I will speak for every single person that is living with this disease or has been touched by this disease. I will speak for those who cannot, I will type for those who cannot, I will walk and run, and work for those who cannot, I will HOPE always, I will keep the FAITH, I will always PRAY and be GRATEFUL for every moment of this life. I will not stop bringing awareness to ALS, you will not only hear me in May, I will spend the other 11 months speaking up as well, I will NEVER GIVE UP! When my husband is weak, I will be his strength and I will be that strength for everyone that has ALS.
What can you do you ask, speak up tell people about this blog, tell people about our facebook page Defeat ALS, I will try my best to stay interesting and link you to stories and sites that are strong and inspirational so that you can remain motivated to be a part of this journey. You can become Cognizant.
Nobody Can Do 'EVERYTHING' But Everybody Can Do 'SOMETHING'
xoxo Jennifer
First off all, everyone needs to know that no matter how uncomfortable they are with thinking about Amyotrophic Lateral Sclerosis, with saying Amyotrophic Lateral Sclerosis (and I know it's hard to say), and with all the terrible uncomfortable things that happen to a person who has Amyotrophic Lateral Sclerosis it CAN happen to you! Everyone who is touched by this disease is just like you and me, and one day without warning there might be weakness in a finger, or trouble with speaking, maybe a limp, or a twitch, a cough because swollowing is difficult, they will brush it off...probably too much caffeine or maybe getting old, a pulled muscle or stress. All of these people and their families finally go to their doctor, most are sent for many tests, most doctors are unsure, many have to go through scary months of the unknown only to hear those three letters that forever seel their fate~ALS. It is easier to feel sorry for those people, to say oh that is terrible and move on with the business of life, not many people want to think about terminal illness, or death. It is not easy to think about paralysis, cramps, atrophy, drool, feeding tubes, trachs, bipaps, ventilators...the average person doesn't even know what most of that even is, but when ALS enters into your family all of those things become a reality. People need to be aware so that a cure can be found, a treatment, but they also need to be aware for those people living with ALS now, those people deserve to live comfortably and happily with everything they need to do that and not go broke!
The day those letters are uttered by an uncomfortable doctor in a cold office, and you are told 2-5 years, and given a script for Riluzole, most families don't know what to do next. They may need to leave their job, what about their house will they be able to remodel get in and out in a wheelchair, what about work, what about their children, what about finances...so many questions, so many unknowns. The doctors cannot answer all the questions, why? because the answers are unknown, every case is different, everyone progresses at a different pace. What do you do with this news, how do you tell people, what kind of stigma will this carry? All the while the person with ALS is living with a body that is malfunctioning, they may have pain, they may be unable to do the acitivities of daily living that we all take for granted. To make it even more confusing, the person doesn't really look sick at first, but as things become difficult they get the stares and sorry looks, people don't know what to say or how to act when you say I have ALS. Families and people living with ALS may feel isolated, sad, hopeless. This can be changed with AWARENESS!
If everyone who I can find who will listen to me learns something about ALS and tells at least one person they know we can spread awareness. Social Media is here today, we have Facebook and Twitter, You Tube and Vine, and all the other stuff that I probably don't even know about. We can all tell a story, we can break out of the comfort zone and SPEAK UP, we can teach people what ALS is and what it can do and what we need to make life better for people living with ALS. I am a Nurse, I am a Social Worker, I am an Advocate, I will speak for my husband whom I love very much and I will speak for every single person that is living with this disease or has been touched by this disease. I will speak for those who cannot, I will type for those who cannot, I will walk and run, and work for those who cannot, I will HOPE always, I will keep the FAITH, I will always PRAY and be GRATEFUL for every moment of this life. I will not stop bringing awareness to ALS, you will not only hear me in May, I will spend the other 11 months speaking up as well, I will NEVER GIVE UP! When my husband is weak, I will be his strength and I will be that strength for everyone that has ALS.
What can you do you ask, speak up tell people about this blog, tell people about our facebook page Defeat ALS, I will try my best to stay interesting and link you to stories and sites that are strong and inspirational so that you can remain motivated to be a part of this journey. You can become Cognizant.
Nobody Can Do 'EVERYTHING' But Everybody Can Do 'SOMETHING'
xoxo Jennifer
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