Donation protected
My name is Samone Jackson.
This Chapter in my Life began September of 2020 when
I was diagnosed with a disease called ALS ("Amyotrophic Lateral Sclerosis") or better known as "Lou Gehrig's Disease".
This is my Story
Some of you already know me and for those of you that do not, please allow me to share with you, how my life changed drastically this fall. The change I speak of actually started, roughly a year ago (January 2020). At that time, the pain and the loss of strength in my left leg developed. Walking with a cane became necessary, followed by needing assistance of an individual to get around.
After a great many tests, spinal surgery was performed in January 2020. Following months (February 2020 – July 2020) of in-patient, in the office and virtual physical therapy due to COVID-19, the weakness in my left leg remained unchanged. Soon, my right leg began developing the same weakness. A great deal of additional tests was necessary (August 2020 – September 2020), primarily to rule out possible conditions. Finally, the team of doctors at John Hopkins diagnosed me with ALS (Amyotrophic Lateral Sclerosis.)
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Research shows that ALS has a "genetic" basis. However, about ninety percent (90%) of people diagnosed with ALS, myself included, are what doctors call a "sporadic case.” Meaning there is no family history of ALS.
Daily, I continue to educate myself as much as possible about ALS. A disease that is not typically spoken about in the African-American community because very few African-Americans are diagnosed with this disease. I am committed to fighting against this disease in my own life by continuing to stay informed of upcoming trial medications, continuing to support others struggling with ALS, continuing to eat healthy and most of all staying prayerful.
Prior to this diagnosis, I was a vibrant, 50-year-old, independent, hardworking, Christian African American woman, who enjoyed life to the fullest. Today, I am learning to navigate my new normal, which is the opposite of "independent" living. This includes: (I) dependency on a highly specialized and customized wheelchair; (ii) a specialized "ALS" home-health aide; (iii) specialized transport services and (IV) the need for someone to be with me in my home 24/7.
Thankfully, the provisions have been met for all previously mentioned and it allows me to not feel helpless. However, there are many residual effects and daily challenges. One area is the nature of this illness causes the muscles in my legs and arms to be extremely weak, which brings with it a certain amount of fatigue.
This is a disease that tears at the core of a family, but I have tried my best to stay in a posture of prayer and positivity.
My private duty aide works with me seven days per week, during the morning and evening hours. Ultimately, that means, her assistance is needed a minimum of 40 hours of care per week, seven days per week. I am BLESSED to still be able to work from home, but the cost of having to pay the salary for my aide has caused an extreme hardship and strain on my monthly expenses. Because there is a lack of financial support for ALS Patients, I have no choice but to cover the cost for my aide out of pocket.
This is where you come in. I really NEED YOUR HELP to help with the high-costs of maintaining my specialized ALS aide. She is a blessed gift from God and has been invaluable, not to just me but also my brother and mom. Prior to "Precious’'" (that is the nickname we gave my aide) arrival in mid-November, my mom had been my only caretaker. While Precious is a "gift," she is still a single, working mom, making a living for herself and her family. While we appreciate her very much, she still must be paid on a timely and weekly fashion.
Please know that any and all-financial contributions are greatly appreciated. Alongside this, your assistance will allow me to work with my team of doctors at John Hopkins and the ALS Foundation. Both are vigorously trying to find the best medication to help slow the progression of this most dreadful disease.
A sincere THANK YOU to all those family and friends that have supported me thus far, I love and appreciate you!
A sincere THANK YOU to those that will contribute. For those who cannot give monetary assistance, please continue to pray with and for me.
This Chapter in my Life began September of 2020 when
I was diagnosed with a disease called ALS ("Amyotrophic Lateral Sclerosis") or better known as "Lou Gehrig's Disease".
This is my Story
Some of you already know me and for those of you that do not, please allow me to share with you, how my life changed drastically this fall. The change I speak of actually started, roughly a year ago (January 2020). At that time, the pain and the loss of strength in my left leg developed. Walking with a cane became necessary, followed by needing assistance of an individual to get around.
After a great many tests, spinal surgery was performed in January 2020. Following months (February 2020 – July 2020) of in-patient, in the office and virtual physical therapy due to COVID-19, the weakness in my left leg remained unchanged. Soon, my right leg began developing the same weakness. A great deal of additional tests was necessary (August 2020 – September 2020), primarily to rule out possible conditions. Finally, the team of doctors at John Hopkins diagnosed me with ALS (Amyotrophic Lateral Sclerosis.)
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Research shows that ALS has a "genetic" basis. However, about ninety percent (90%) of people diagnosed with ALS, myself included, are what doctors call a "sporadic case.” Meaning there is no family history of ALS.
Daily, I continue to educate myself as much as possible about ALS. A disease that is not typically spoken about in the African-American community because very few African-Americans are diagnosed with this disease. I am committed to fighting against this disease in my own life by continuing to stay informed of upcoming trial medications, continuing to support others struggling with ALS, continuing to eat healthy and most of all staying prayerful.
Prior to this diagnosis, I was a vibrant, 50-year-old, independent, hardworking, Christian African American woman, who enjoyed life to the fullest. Today, I am learning to navigate my new normal, which is the opposite of "independent" living. This includes: (I) dependency on a highly specialized and customized wheelchair; (ii) a specialized "ALS" home-health aide; (iii) specialized transport services and (IV) the need for someone to be with me in my home 24/7.
Thankfully, the provisions have been met for all previously mentioned and it allows me to not feel helpless. However, there are many residual effects and daily challenges. One area is the nature of this illness causes the muscles in my legs and arms to be extremely weak, which brings with it a certain amount of fatigue.
This is a disease that tears at the core of a family, but I have tried my best to stay in a posture of prayer and positivity.
My private duty aide works with me seven days per week, during the morning and evening hours. Ultimately, that means, her assistance is needed a minimum of 40 hours of care per week, seven days per week. I am BLESSED to still be able to work from home, but the cost of having to pay the salary for my aide has caused an extreme hardship and strain on my monthly expenses. Because there is a lack of financial support for ALS Patients, I have no choice but to cover the cost for my aide out of pocket.
This is where you come in. I really NEED YOUR HELP to help with the high-costs of maintaining my specialized ALS aide. She is a blessed gift from God and has been invaluable, not to just me but also my brother and mom. Prior to "Precious’'" (that is the nickname we gave my aide) arrival in mid-November, my mom had been my only caretaker. While Precious is a "gift," she is still a single, working mom, making a living for herself and her family. While we appreciate her very much, she still must be paid on a timely and weekly fashion.
Please know that any and all-financial contributions are greatly appreciated. Alongside this, your assistance will allow me to work with my team of doctors at John Hopkins and the ALS Foundation. Both are vigorously trying to find the best medication to help slow the progression of this most dreadful disease.
A sincere THANK YOU to all those family and friends that have supported me thus far, I love and appreciate you!
A sincere THANK YOU to those that will contribute. For those who cannot give monetary assistance, please continue to pray with and for me.
Organizer
Samone Jackson
Organizer
College Park, MD