Ra7y
New member
- Joined
- Jun 29, 2024
- Messages
- 1
- Reason
- Lost a loved one
- Diagnosis
- 03/2023
- Country
- US
- State
- TX
- City
- Plano
I am very sad to say that our good friend and love of my life passed away of ALS on Sunday, June 30. Her passing was a surprise and I still can’t talk about it but I would like to tell you how strong and brave and amazing Mar was in the face of this horrible disease.
During the last five months of 2022 Marilyn began to have trouble swallowing and speaking. She went to several kinds of doctors and had many scans and tests but there was no diagnosis. By January 2023 muscles in her throat and mouth had weakened so much that she lost the ability to speak. She was forced to communicate by handwritten notes, texts and text to speech software on her iPad. She tolerated this without complaint. Swallowing anything became so difficult she spent hours trying to eat a meal and lost weight and strength. In March 2023 she had a stomach tube placed so I could feed her a formula and water and her medicines through it. She never tasted anything after that day. I have not cooked bacon since that day so she wouldn’t smell it.
Her left leg became too weak to walk safely so she began to use a walker. She became housebound and had to stop bowling and abandon her volunteer work at the museum and library. She gave up her book clubs. These were important activities to her and she had many good friends in them. Over time she had less and less energy to maintain those relationships, but she did not cry. She did not fight this but accepted the changes without complaint. She always tried her best to accommodate the crippling changes she experienced.
In April Marilyn’s left arm and hand failed completely and so she became more dependent on me since even putting her glasses on was impossible. In June 2023 her breathing muscles were weakening and she began using a ventilator each night. By October her right leg weakened such that walking and standing became impossible. She was now living in a complex rehabilitation power wheelchair. She faced these catastrophic changes with strength, grace and a positive attitude.
Using her right hand to operate an iPad with a trackpad Marilyn continued to text and email her friends and relatives and me. She read a lot on Kindle on her iPad. She was able to play some word games. Then her right hand became paralyzed. Luckily in May 2024 she acquired an eyegaze-activated speech generator that allowed her to compose messages by looking at a keyboard on its screen. This was challenging and frustrating but she ultimately conquered those difficulties. She was strong. With the device she was able to play Wordle and Quordle, send texts, and control the home theater with her eyes. Even though she was locked in her body she didn’t cry or whine about it, she just worked and worked to maintain communication.
Looking back I am amazed how strong and uncomplaining she was in every response to greater loss and sickness. She quietly coped with the worst two years you can imagine. I didn’t think I could love her more, but now, after all this, I do. I certainly do. I miss her terribly.
A memorial is being planned.
Ray
During the last five months of 2022 Marilyn began to have trouble swallowing and speaking. She went to several kinds of doctors and had many scans and tests but there was no diagnosis. By January 2023 muscles in her throat and mouth had weakened so much that she lost the ability to speak. She was forced to communicate by handwritten notes, texts and text to speech software on her iPad. She tolerated this without complaint. Swallowing anything became so difficult she spent hours trying to eat a meal and lost weight and strength. In March 2023 she had a stomach tube placed so I could feed her a formula and water and her medicines through it. She never tasted anything after that day. I have not cooked bacon since that day so she wouldn’t smell it.
Her left leg became too weak to walk safely so she began to use a walker. She became housebound and had to stop bowling and abandon her volunteer work at the museum and library. She gave up her book clubs. These were important activities to her and she had many good friends in them. Over time she had less and less energy to maintain those relationships, but she did not cry. She did not fight this but accepted the changes without complaint. She always tried her best to accommodate the crippling changes she experienced.
In April Marilyn’s left arm and hand failed completely and so she became more dependent on me since even putting her glasses on was impossible. In June 2023 her breathing muscles were weakening and she began using a ventilator each night. By October her right leg weakened such that walking and standing became impossible. She was now living in a complex rehabilitation power wheelchair. She faced these catastrophic changes with strength, grace and a positive attitude.
Using her right hand to operate an iPad with a trackpad Marilyn continued to text and email her friends and relatives and me. She read a lot on Kindle on her iPad. She was able to play some word games. Then her right hand became paralyzed. Luckily in May 2024 she acquired an eyegaze-activated speech generator that allowed her to compose messages by looking at a keyboard on its screen. This was challenging and frustrating but she ultimately conquered those difficulties. She was strong. With the device she was able to play Wordle and Quordle, send texts, and control the home theater with her eyes. Even though she was locked in her body she didn’t cry or whine about it, she just worked and worked to maintain communication.
Looking back I am amazed how strong and uncomplaining she was in every response to greater loss and sickness. She quietly coped with the worst two years you can imagine. I didn’t think I could love her more, but now, after all this, I do. I certainly do. I miss her terribly.
A memorial is being planned.
Ray
