Aides for Steve’s ALS Needs
Donation protected
Dear Friends and Family,
It is a pressing and poignant time for us and hard for me to reach out to you once again. Many of you have helped us with Steve’s challenges as his ALS has progressed since his diagnosis in April 2015. Financial help and the efforts of many to ease his environment whether it by building adaptive equipment or sewing specially sized pillowcases. All is very much appreciated.
Words cannot say how much your help means to us, emotionally and practically. We’ve been able to do essential but costly retrofits in our small coop apartment so that we could meet the many intricacies related to all aspects of basic 24 hour feeding and care. Your donations also helped us purchase needed equipment and supplies not covered by Medicare.
ALS has continued to show its face in new ways. Steve’s needs for hands-on assistance has increased greatly—he no longer has any ability to move even a finger or to speak, and must be very carefully moved by two people to prevent pain and injury. Communication with Steve is challenging; the Eye Gaze computer is the only means of verbal communication. The computer tracks Steve’s Eye movement, he types sentences by holding his gaze on a letter, his held gaze causes the letter to click and then he selects the next letter. When Steve is moved from the bed to the wheelchair, a complex process involving a hoyer lift, this computer has to be disconnected. The process of being moved is both essential to maintaining his health and also the most painful, and during this time he has no way to explain that he’d like an adjustment to avoid or lessen pain. Hence, even with the necessary two people to move Steve, it is an extremely painstaking, technical and sensitive task.
All of this is daunting for us already. But we had an unexpected tragedy in June, when Steve’s dear brother Phillip passed away. With Phil’s passing, we are at an immediate impasse regarding care. Steve loved Phil dearly. His frequent visits bolstered Steve’s spirits. But as much as Phil is missed emotionally, his absence has created a large gap in addressing Steve’s physical needs: Phil was immensely helpful, particularly on weekends when I have no other assistance. He came every Saturday and Sunday to help me with such tasks as moving Steve out of bed and getting him ready for the day. When Phil helped me with complicated tasks throughout the day, he was always gentle and made Steve feel safe.
We always knew how much Philip did for us but didn’t imagine the kind of financial resources we would need in order to replace his sustained physical assistance. Our Occupational Therapist has verified that in Steve’s current condition, moving him out of the bed requires two skilled people. This has left us at an impasse on weekends as we had depended on Phil every weekend for this help. As I care for Steve 24/7 days a week, I also need time to tackle additional essential technical tasks related to his nutritional and medical needs.
So, Phil’s passing not only broke our hearts but also created a severe practical difficulty for us. We have a much greater need for the help of paid aides beyond what Medicare will pay for, particularly on weekends.
If it is possible for you to make a financial contribution to help us cover the costs of this necessary additional care, we would be extremely grateful.
- Alisa
Note from Steve:
Philip and I were not only brothers but forever friends. We’ve been helping each other ever since our first years of learning to fish and ride a bike. He cheered me on when I tried new things like DJ’ing. He’s been with me through this ALS challenge every step of the way. He had the knowledge to help me and generously gave of his time and heart. I felt safe with him and Alisa was able to leave me with him to do errands knowing I would be safe.
Today, I can only communicate through my eye gaze machine. And I have no ability to move myself, not even a finger or my head. Your financial help so I can hire the additional aides to take the place of the physical support that Phil provided will be greatly appreciated.
It is a pressing and poignant time for us and hard for me to reach out to you once again. Many of you have helped us with Steve’s challenges as his ALS has progressed since his diagnosis in April 2015. Financial help and the efforts of many to ease his environment whether it by building adaptive equipment or sewing specially sized pillowcases. All is very much appreciated.
Words cannot say how much your help means to us, emotionally and practically. We’ve been able to do essential but costly retrofits in our small coop apartment so that we could meet the many intricacies related to all aspects of basic 24 hour feeding and care. Your donations also helped us purchase needed equipment and supplies not covered by Medicare.
ALS has continued to show its face in new ways. Steve’s needs for hands-on assistance has increased greatly—he no longer has any ability to move even a finger or to speak, and must be very carefully moved by two people to prevent pain and injury. Communication with Steve is challenging; the Eye Gaze computer is the only means of verbal communication. The computer tracks Steve’s Eye movement, he types sentences by holding his gaze on a letter, his held gaze causes the letter to click and then he selects the next letter. When Steve is moved from the bed to the wheelchair, a complex process involving a hoyer lift, this computer has to be disconnected. The process of being moved is both essential to maintaining his health and also the most painful, and during this time he has no way to explain that he’d like an adjustment to avoid or lessen pain. Hence, even with the necessary two people to move Steve, it is an extremely painstaking, technical and sensitive task.
All of this is daunting for us already. But we had an unexpected tragedy in June, when Steve’s dear brother Phillip passed away. With Phil’s passing, we are at an immediate impasse regarding care. Steve loved Phil dearly. His frequent visits bolstered Steve’s spirits. But as much as Phil is missed emotionally, his absence has created a large gap in addressing Steve’s physical needs: Phil was immensely helpful, particularly on weekends when I have no other assistance. He came every Saturday and Sunday to help me with such tasks as moving Steve out of bed and getting him ready for the day. When Phil helped me with complicated tasks throughout the day, he was always gentle and made Steve feel safe.
We always knew how much Philip did for us but didn’t imagine the kind of financial resources we would need in order to replace his sustained physical assistance. Our Occupational Therapist has verified that in Steve’s current condition, moving him out of the bed requires two skilled people. This has left us at an impasse on weekends as we had depended on Phil every weekend for this help. As I care for Steve 24/7 days a week, I also need time to tackle additional essential technical tasks related to his nutritional and medical needs.
So, Phil’s passing not only broke our hearts but also created a severe practical difficulty for us. We have a much greater need for the help of paid aides beyond what Medicare will pay for, particularly on weekends.
If it is possible for you to make a financial contribution to help us cover the costs of this necessary additional care, we would be extremely grateful.
- Alisa
Note from Steve:
Philip and I were not only brothers but forever friends. We’ve been helping each other ever since our first years of learning to fish and ride a bike. He cheered me on when I tried new things like DJ’ing. He’s been with me through this ALS challenge every step of the way. He had the knowledge to help me and generously gave of his time and heart. I felt safe with him and Alisa was able to leave me with him to do errands knowing I would be safe.
Today, I can only communicate through my eye gaze machine. And I have no ability to move myself, not even a finger or my head. Your financial help so I can hire the additional aides to take the place of the physical support that Phil provided will be greatly appreciated.
Organizer and beneficiary
Steve and Alisa
Organizer
Tarrytown, NY
Steve and Alisa
Beneficiary
