Help Charles and Rayna Schneider: ALS, IPF
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"We are stronger in the places where we have been broken"- Ernest Hemingway
This is the story of our two loving parents, Charles & Rayna Schneider, who have resided in Upstate NY for several decades. Our dad/stepdad, Charles Schneider, founding Music Director of the Glimmerglass Opera, Conductor of the Catskill, Utica, and Schenectady Symphonies, teacher, mentor, father, grandfather, and friend to so many, has continued to courageously battle the insidious confines within Idiopathic Pulmonary Fibrosis (IPF) for several years. IPF is a rare terminal disease that involves slow progression of scar tissue buildup in the lungs. Until November 2019, his lung markers suggested that the disease had not progressed. That was until the day after Thanksgiving 2019, when he and mom/stepmom Rayna sat Megan, Paul, and I down, and told us he does not have much time left, and that his numbers had declined significantly.
He told us that we needed to listen to the Mahler 4th Symphony, 3rd Movement, in which there is an ascension into heaven, and which he would like to be played at his memorial service. I will never forget this moment. We started to think about the complex care that he would need, not to mention the skilled nursing that would be needed in his final weeks. I was concerned about making him as comfortable as possible when those days would arrive.
As our minds raced with with ideas, questions, worries, and solutions, nothing could have prepared us for what we heard next.
Rayna began to talk. She had been struggling with a declining speech for several months, in which words were becoming more slurred. She had been dealing with swallowing issues, which were becoming more problematic. Doctors had been trying diagnose here for over six months, always coming up empty. As I sat there wondering how we would be handling all the care needed for dad, she broke the news to us- ALS (Lou Gehrig's Disease), the rarest form, and most serious, Bulbar Onset (only 20% of patients with ALS have this form). Her disease is in reverse, as her speaking, swallowing, and breathing muscles are affected first. To the present day, she continues to deal with a declining speech, paralyzed vocal chords, significant weight loss, severe swallowing/choking problems, and yet, she has remained defiant in her ability to deal with ALS. Unfortunately, it has become necessary for her to discontinue working because of the speech handicap. She also has had to give up her life-long love of acting, which gave her much joy and fulfillment. This is particularly hard for her.
The thought of having two terminally ill parents, whose diseases both require extensive care, and neither of whom is employed, has taken awhile to comprehend and sort out, and has caused a wide range of emotions for all of our family.
Both dad Dad and Rayna would normally never ask for help, as they have consistently always shown and given love to so many near and far, asking nothing in return. They have remained married for 25 years, and have always been by each other’s side through everything, and their wish is to remain together in their home until their final days. The cost of both diseases are astronomical, and while Medicare will help to some extent, there will be a need for many assistive devices, etc. The average yearly cost of treating someone with ALS is around $300,000.
We have chosen to do this because we love both of them dearly, and we would be appreciative of any help we can receive. The funds will be spent strictly on in-home skilled nursing care, home health care during their final months, assistive devices (ramp, motorized cart, etc.), ongoing prescription costs, etc.
We love and thank you dearly, whether family, friends or strangers. Please share.
Much love,
The Children of Chuck and Rayna: Dana Schneider, Megan Schneider-Ajakh, and Paul Baker
This is the story of our two loving parents, Charles & Rayna Schneider, who have resided in Upstate NY for several decades. Our dad/stepdad, Charles Schneider, founding Music Director of the Glimmerglass Opera, Conductor of the Catskill, Utica, and Schenectady Symphonies, teacher, mentor, father, grandfather, and friend to so many, has continued to courageously battle the insidious confines within Idiopathic Pulmonary Fibrosis (IPF) for several years. IPF is a rare terminal disease that involves slow progression of scar tissue buildup in the lungs. Until November 2019, his lung markers suggested that the disease had not progressed. That was until the day after Thanksgiving 2019, when he and mom/stepmom Rayna sat Megan, Paul, and I down, and told us he does not have much time left, and that his numbers had declined significantly.
He told us that we needed to listen to the Mahler 4th Symphony, 3rd Movement, in which there is an ascension into heaven, and which he would like to be played at his memorial service. I will never forget this moment. We started to think about the complex care that he would need, not to mention the skilled nursing that would be needed in his final weeks. I was concerned about making him as comfortable as possible when those days would arrive.
As our minds raced with with ideas, questions, worries, and solutions, nothing could have prepared us for what we heard next.
Rayna began to talk. She had been struggling with a declining speech for several months, in which words were becoming more slurred. She had been dealing with swallowing issues, which were becoming more problematic. Doctors had been trying diagnose here for over six months, always coming up empty. As I sat there wondering how we would be handling all the care needed for dad, she broke the news to us- ALS (Lou Gehrig's Disease), the rarest form, and most serious, Bulbar Onset (only 20% of patients with ALS have this form). Her disease is in reverse, as her speaking, swallowing, and breathing muscles are affected first. To the present day, she continues to deal with a declining speech, paralyzed vocal chords, significant weight loss, severe swallowing/choking problems, and yet, she has remained defiant in her ability to deal with ALS. Unfortunately, it has become necessary for her to discontinue working because of the speech handicap. She also has had to give up her life-long love of acting, which gave her much joy and fulfillment. This is particularly hard for her.
The thought of having two terminally ill parents, whose diseases both require extensive care, and neither of whom is employed, has taken awhile to comprehend and sort out, and has caused a wide range of emotions for all of our family.
Both dad Dad and Rayna would normally never ask for help, as they have consistently always shown and given love to so many near and far, asking nothing in return. They have remained married for 25 years, and have always been by each other’s side through everything, and their wish is to remain together in their home until their final days. The cost of both diseases are astronomical, and while Medicare will help to some extent, there will be a need for many assistive devices, etc. The average yearly cost of treating someone with ALS is around $300,000.
We have chosen to do this because we love both of them dearly, and we would be appreciative of any help we can receive. The funds will be spent strictly on in-home skilled nursing care, home health care during their final months, assistive devices (ramp, motorized cart, etc.), ongoing prescription costs, etc.
We love and thank you dearly, whether family, friends or strangers. Please share.
Much love,
The Children of Chuck and Rayna: Dana Schneider, Megan Schneider-Ajakh, and Paul Baker
Organizer
Dana Schneider
Organizer
Webster, NY
