Evelyn's journey with ALS
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You see the ribbons during awareness month. You see the posts for walks. You’ve seen the million ice bucket challenges. You may have even done one yourself. But you still don’t know what ALS is until it directly affects you or a person you love.
A brief summary: A nervous system disease that weakens muscles and impacts physical function. In this disease, nerve cells break down, which reduces functionality in the muscles they supply leading to full paralysis. The cause is unknown. 100% fatal. Time is unknown. A harsh reality that hits hard and is unexplainable with no definition.
Anyone who knows Evelyn, knows she is a selfless person. She has worked 60+ hours for years. She is definitely a person that will help anyone and everyone before asking for help herself. She never turns anyone away when in need. The funds raised will help offset her medical expenses, home modifications and the purchase of a van for her power chair. All of this is needed to help with her quality of life. A key factor in fighting this awful disease. Being forced to disability, her income has been cut in more than half and her expenses have drastically increased.
Her story:
Evelyn’s journey began April 2018. The first thing affected was her speech and swallowing. The first procedure was dilating her esophagus....didn’t last even a day. So then began the numerous tests, scans, etc. That Fall she lost mobility in her right foot (better known as drop foot). This is when her job forced her to short term disability due to being a fall risk. Finally on January 15, 2019 she received a diagnosis of PPMS (primary progressive multiple sclerosis). Some relief came from finally getting an answer. A treatment plan. She even received two half doses of Ocrevus (an IV infusion drug for MS) the following June and July.
So we thought.
Then came the nightmare. Her symptoms began to progress rapidly from August to September. Her ability to swallow-gone. Speech-gone. Her mobility-rapid decrease. Could no longer use just a cane, even with her foot brace. Rapid weight loss and weakness. After an appointment with her neuro concerning the rapid progression and not getting any answers or better treatment plan, her daughter made an appointment with a neuro that specializes in MS. He immediately knew it wasn’t MS. She had been misdiagnosed. He ordered a new MRI that day. Two days later, she was back to see the ALS specialist. He performed a new EEG (nerve) test and ran more blood work. The new diagnosis was officially given a week later, October 16. Bulbar ALS. Three days before her 60th birthday.
Fast forward a few days to the 21st—she was quickly scheduled for a PEG tube placement. She was malnourished from losing the ability to swallow and eat. She was down to 94 pounds. She was literally dying from starvation. The procedure went well and she was moved to recovery. Then that afternoon she received a dose of morphine for pain. That’s when everything spiraled downward, quickly. The morphine caused her to go into respiratory distress. She became unresponsive and went into acidosis. She was moved to ICU. She spent four days there recovering. Then two days back in a normal room. Due to the malnourishment and the rapid respiratory set back, everything quickly changed. Evelyn had to immediately move in with her daughter and have daily private care. Unfortunately, insurance does not cover more than an aide to come in twice a week to give a bath and change sheets and she doesn’t qualify for Medicaid.
With all this, comes the out of pocket expenses. She has three medical machines, private care, formula, doctors visits and the list goes on. A power chair is needed. Along with an assisted speaking device, home improvements and an accessible van will be needed. I’m sure there’s more I’ve left out and even more that will be needed in the future.
As awful as this disease is Evelyn, being who she is, has remained positive (another key factor) and is fighting every step of the way. She has a life goal to see her grandkids graduate❤️ Any and all help is appreciated. No donation is too big or too small.
Most importantly prayers. With God’s grace and will, Evelyn will remain strong and her needs will be provided.
Please share and help Evelyn #fightALS
A brief summary: A nervous system disease that weakens muscles and impacts physical function. In this disease, nerve cells break down, which reduces functionality in the muscles they supply leading to full paralysis. The cause is unknown. 100% fatal. Time is unknown. A harsh reality that hits hard and is unexplainable with no definition.
Anyone who knows Evelyn, knows she is a selfless person. She has worked 60+ hours for years. She is definitely a person that will help anyone and everyone before asking for help herself. She never turns anyone away when in need. The funds raised will help offset her medical expenses, home modifications and the purchase of a van for her power chair. All of this is needed to help with her quality of life. A key factor in fighting this awful disease. Being forced to disability, her income has been cut in more than half and her expenses have drastically increased.
Her story:
Evelyn’s journey began April 2018. The first thing affected was her speech and swallowing. The first procedure was dilating her esophagus....didn’t last even a day. So then began the numerous tests, scans, etc. That Fall she lost mobility in her right foot (better known as drop foot). This is when her job forced her to short term disability due to being a fall risk. Finally on January 15, 2019 she received a diagnosis of PPMS (primary progressive multiple sclerosis). Some relief came from finally getting an answer. A treatment plan. She even received two half doses of Ocrevus (an IV infusion drug for MS) the following June and July.
So we thought.
Then came the nightmare. Her symptoms began to progress rapidly from August to September. Her ability to swallow-gone. Speech-gone. Her mobility-rapid decrease. Could no longer use just a cane, even with her foot brace. Rapid weight loss and weakness. After an appointment with her neuro concerning the rapid progression and not getting any answers or better treatment plan, her daughter made an appointment with a neuro that specializes in MS. He immediately knew it wasn’t MS. She had been misdiagnosed. He ordered a new MRI that day. Two days later, she was back to see the ALS specialist. He performed a new EEG (nerve) test and ran more blood work. The new diagnosis was officially given a week later, October 16. Bulbar ALS. Three days before her 60th birthday.
Fast forward a few days to the 21st—she was quickly scheduled for a PEG tube placement. She was malnourished from losing the ability to swallow and eat. She was down to 94 pounds. She was literally dying from starvation. The procedure went well and she was moved to recovery. Then that afternoon she received a dose of morphine for pain. That’s when everything spiraled downward, quickly. The morphine caused her to go into respiratory distress. She became unresponsive and went into acidosis. She was moved to ICU. She spent four days there recovering. Then two days back in a normal room. Due to the malnourishment and the rapid respiratory set back, everything quickly changed. Evelyn had to immediately move in with her daughter and have daily private care. Unfortunately, insurance does not cover more than an aide to come in twice a week to give a bath and change sheets and she doesn’t qualify for Medicaid.
With all this, comes the out of pocket expenses. She has three medical machines, private care, formula, doctors visits and the list goes on. A power chair is needed. Along with an assisted speaking device, home improvements and an accessible van will be needed. I’m sure there’s more I’ve left out and even more that will be needed in the future.
As awful as this disease is Evelyn, being who she is, has remained positive (another key factor) and is fighting every step of the way. She has a life goal to see her grandkids graduate❤️ Any and all help is appreciated. No donation is too big or too small.
Most importantly prayers. With God’s grace and will, Evelyn will remain strong and her needs will be provided.
Please share and help Evelyn #fightALS
Fundraising team: Evelyn's Elves (3)
Millie Gregory
Organizer
Hooks, TX
Kassa Ashmore
Beneficiary
Evelyn Winkler
Team member
