Tomswife
Senior member
- Joined
- Aug 22, 2022
- Messages
- 689
- Reason
- Lost a loved one
- Diagnosis
- 08/2022
- Country
- US
- State
- NJ
- City
- Livingston
Thomas Mark Long, loving husband, father and grandfather died at home on June 5, 2023 of Amyotrophic Lateral Sclerosis (ALS). He was 70. Tom was an admirable man known for his kindness, fine intellect, generous spirit and love for his family. We will love him forever.
ALS is more than a disease. It is a complex syndrome. There is no cure, there is no single test for diagnosis and there is no typical progression. ALS is uniquely personal. Tom’s symptoms began in Spring 2022 and he was formally diagnosed in August 2022. Tom had sporadic ALS, not genetic. And his ALS began in his bulbar region (brain) rather than his limbs. Tom was courageous. He lived in radical acceptance, doing what he could to combat the progress of ALS and yet knowing there is no cure. We always found something to laugh about. He was always thankful. We took some small trips in the fall. We went to a musical and a concert at Christmastime. Later, stuck in a hospital bed, unable to move, he listened to music, watched TV and enjoyed audible books. He loved the visits from his young grandchildren who called him PopPop. He lived with the disease at home and died at home, a home he loved. Allison, Karl (husband) and I were Team Tom and we did everything we could to help him and know he was not alone.
Tom will always be remembered for his good character, maturity and a friendly, caring spirit. No matter the unkindness of another person, his response was kindness. We depended on him for his understanding of life and good judgment. We will love him forever. As a Catholic he was blessed by Msgr. Fuhrman in February with the Sacrament, The Anointing of The Sick, that is a beautiful ritual of healing prayers.
Kathy's note: I thank the PALS and CALS of the ALSFORUMS for sharing their knowledge, compassion and friendship with us during this journey. I have been homebound caring for Tom for many months, and therefore posted on the forum frequently to ask questions or share advice. It was invaluable to me to know you are on a similar journey and understand what it is like. I posted often as Tom's proxy and then would share what I learned with him. Thank you.
Jesus said to the crowds: "Come to me, all you who labor and are burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for yourselves. For my yoke is easy, and my burden light."
May Thomas rest in peace and in the love of Jesus Christ.
ALS is more than a disease. It is a complex syndrome. There is no cure, there is no single test for diagnosis and there is no typical progression. ALS is uniquely personal. Tom’s symptoms began in Spring 2022 and he was formally diagnosed in August 2022. Tom had sporadic ALS, not genetic. And his ALS began in his bulbar region (brain) rather than his limbs. Tom was courageous. He lived in radical acceptance, doing what he could to combat the progress of ALS and yet knowing there is no cure. We always found something to laugh about. He was always thankful. We took some small trips in the fall. We went to a musical and a concert at Christmastime. Later, stuck in a hospital bed, unable to move, he listened to music, watched TV and enjoyed audible books. He loved the visits from his young grandchildren who called him PopPop. He lived with the disease at home and died at home, a home he loved. Allison, Karl (husband) and I were Team Tom and we did everything we could to help him and know he was not alone.
Tom will always be remembered for his good character, maturity and a friendly, caring spirit. No matter the unkindness of another person, his response was kindness. We depended on him for his understanding of life and good judgment. We will love him forever. As a Catholic he was blessed by Msgr. Fuhrman in February with the Sacrament, The Anointing of The Sick, that is a beautiful ritual of healing prayers.
Kathy's note: I thank the PALS and CALS of the ALSFORUMS for sharing their knowledge, compassion and friendship with us during this journey. I have been homebound caring for Tom for many months, and therefore posted on the forum frequently to ask questions or share advice. It was invaluable to me to know you are on a similar journey and understand what it is like. I posted often as Tom's proxy and then would share what I learned with him. Thank you.
Jesus said to the crowds: "Come to me, all you who labor and are burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for yourselves. For my yoke is easy, and my burden light."
May Thomas rest in peace and in the love of Jesus Christ.
