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I'm staring at the words of the email with a mixture of emotions. Grateful for technology but lamenting losing my voice. "Your voice is now ready." #endals #useyourvoiceforgood
Sandra W. Marlowe
3,118 posts
Sandra W. Marlowe
@sandrawmarlowe
Married to the love of my life. Christ follower. Mom of five. Mimi to 14! Entrepreneur. Diagnosed with Bulbar ALS 3/30/2020. Fighting to live.
- Hi friends. I'm Sandra's daughter, Rachael. Jesus called her home peacefully on November 12th. She finished her race and we know her impact was great. Thanks for joining us on this ALS journey. Our family would love to hear your "Sandra story" - rb.gy/xzw6z0 . #endALS
- ALS is a thief. In 18 months it took from me: speaking, singing, my hobbies, my strength, the ability to eat and drink, walking, and driving. Breathing is difficult. I hate this disease. Grateful for those fighting for us and with us. #ENDALS #thisisALS
- Google serves up old photos. I look at the ones before ALS dx. I can't help but stare at my arms and legs. When they had muscles, not just skin over bone. Now I'll probably stare at my neck before tracheostomy. Having surgery Monday morning. I ask for prayers.
- 1st road trip since #trach surgery. My care requires time, organization, and equipment! Bumpy roads in car and uneven gravel trails by wheelchair make me wish for shock absorbers on the trach tubing. But joy--got to see my son and his family AND fall colors! #nottodayals #endals
- I can't speak, sing, eat, or drink. I can't swim, hike, bike, or kayak. #ALS is a cruel, cruel thief. It takes away the active life we once enjoyed. It is painful. We MUST find treatments. And the cost should not require mortgaging the house. #ENDALS #MND #thisisALS
- I have Bulbar #ALS; have not been able to eat or drink by mouth for a year. I miss everything! I love watching football but the commercials are torture. Nachos, wings, pizza, garlic breadsticks, bowls. I miss them all. And cold lagers. We need treatments! #endals #mnd #thisisals
- We know it is coming. Yet we never feel prepared. When I read Seth's goodbye, I put down my phone and wept. What a good man. We must #ENDALSThere is a beginning and end to every story; this is the end of my story, but this is not goodbye; it is a see you later. In the end, it's not the years in your life that count. It's the life in your years. Friends and family, THANK YOU. Please continue my fight to #EndALS.
- Average lifespan from symptom onset with #BULBARALS is 27 months. For me, that's this month. A flower lover, last year I wondered if I would see another spring. Today I saw blossoms of daffodils, azaleas, and crabapples. I'll just be over here smiling all day. #grateful #ENDALS
- Getting ready to go back for a 4 hour ALS multi-disciplinary clinic appt. We will be discussing my end of life wishes. I am tired. Praying for strength and stamina. #thisisALS #EndALS #ALSawareness
- This picture of my grandson makes me smile. A boy. His dog. A hug. And a whole lot of love.
- ALS extracts a toll on the body. One year ago I could speak, eat, drink, take walks, hike in the woods, climb stairs, dress myself. Those activities are no longer possible. My lung function has dramatically reduced. ALS is a living nightmare. #ENDALS #thisisALS #ALSawareness
- I woke up from my nap just in time to say good by to my son and his family, who had spent the afternoon with us. I hate missing time with them. My 3 y/o grandson Jacob sensed what I was feeling. He patted my hand in empathy. "It's okay, Mimi. I have to take naps, too." #EndALS
