My dad, Steve Norden, has always dreamt of retiring one day in Florida. In October of 2016, he finally left Clinton, Iowa and purchased a small waterfront mobile home located across the street from a 150 acre nature preserve in Flagler Beach, FL. The house itself was nothing special, but he didn’t plan on spending much time indoors.
He purchased a kayak to be used on the canal located right in his own backyard. He also bought a motorcycle which he would often ride to his favorite hang out spot; a local bar and grill situated right on the Intercoastal Waterway. Nearly every morning involved going golfing with some of the MANY new friends he has made. He even befriended the deer, wild boar, and various other wildlife who began visiting his house daily to partake in the snacks he would set out for them. He also enjoyed many of the amenities offered by his mobile home community, like swimming in the pool and exploring many of the wilderness trails.
[Below] Florida living before ALS
[Below] My dad with some of the new friends he has made in Florida (including Santa!).
In early 2018, he began having some difficulty with walking and would often trip and fall. Walking progressively became more difficult, and by March of 2019, he was only able to walk with the aid of a walker. It was at this time, at the age of 60, that he received the devastating diagnosis of Amyotrophic lateral sclerosis.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord that control voluntary muscle movement. Over time, my dad will also lose his ability to move his arms, as well as lose his ability to speak, eat, and ultimately breathe on his own. The average life expectancy is 2-5 years and death usually occurs from respiratory failure. There is no cure for ALS.
Although he has recently received a motorized wheelchair; he has sold his kayak, his motorcycle, and his golf clubs as he can no longer do these activities without the use of his legs. He also is no longer able to visit his favorite bar and grill, as there are steps that he cannot go up in order to enter.
The only way he can leave the house at all anymore is if he uses a manual wheelchair that someone has to push him in, and he needs to be physically lifted and transferred to and from the car. This is not feasible, as my mom is not strong enough to lift him.
He will now require a wheelchair accessible van that has been modified to allow him to drive his motorized wheelchair directly into the vehicle with no transfers and with no assistance. Their current vehicle is not able to withstand the weight of his motorized wheelchair.
Calling 911 has become an every-other-day occurrence, as he often falls while being transferred from his wheelchair to recliner/bed/shower/car/etc and needs lift assistance from the fire department. He has also been taken via ambulance twice within 2 weeks due to severe pain due to complications of ALS that can occurs from a lack of mobility and exercise.
[Below] Life with ALS
Because people with ALS retain their mental functioning abilities, they are aware of their progressive loss of function and may become anxious and depressed; which is the case for my dad. My mom once overheard him in an emotional state talking to his dog as he lay waiting for the fire department to arrive to lift him up off of the ground, saying, “Ladybird, I don’t want to die...” Thoughts of becoming a prisoner inside his own body is a horrifying reality that he will one day have to face.
In-home physical and occupational therapists visit him periodically, but he isn’t able to access many of the specialized therapies or large equipment that can be utilized at actual facilities. With the use of a wheelchair van, he can seek more specialized care, as well as astronomically improve his quality of life by simply having the freedom of leaving his house and interacting with the outside world again.
It takes time and money to obtain the necessary devices and to carry out home modifications so that a person who is disabled can be able to sustain the best quality of life as possible. But time is not something that ALS patients have.
In addition to these assistive devices and home modification costs, ALS patients face extraordinary medical and incidental expenses as well. Medical costs alone are estimated to be around $300,000 each year.
This GoFundMe campaign was established so that Steve can live the best life possible even with this devastating diagnosis. A fellow ALS patient once said, "The saying, 'When life gives you lemons, make lemonade' is for normal people. 'When life gives you a turd sandwich, make THAT into lemonade' is for people living with ALS."
We would be honored to receive any gift amount, large or small, so that Steve can turn this "turd sandwich" into delicious "lemonade".
He purchased a kayak to be used on the canal located right in his own backyard. He also bought a motorcycle which he would often ride to his favorite hang out spot; a local bar and grill situated right on the Intercoastal Waterway. Nearly every morning involved going golfing with some of the MANY new friends he has made. He even befriended the deer, wild boar, and various other wildlife who began visiting his house daily to partake in the snacks he would set out for them. He also enjoyed many of the amenities offered by his mobile home community, like swimming in the pool and exploring many of the wilderness trails.
[Below] Florida living before ALS
[Below] My dad with some of the new friends he has made in Florida (including Santa!).
In early 2018, he began having some difficulty with walking and would often trip and fall. Walking progressively became more difficult, and by March of 2019, he was only able to walk with the aid of a walker. It was at this time, at the age of 60, that he received the devastating diagnosis of Amyotrophic lateral sclerosis.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord that control voluntary muscle movement. Over time, my dad will also lose his ability to move his arms, as well as lose his ability to speak, eat, and ultimately breathe on his own. The average life expectancy is 2-5 years and death usually occurs from respiratory failure. There is no cure for ALS.
Although he has recently received a motorized wheelchair; he has sold his kayak, his motorcycle, and his golf clubs as he can no longer do these activities without the use of his legs. He also is no longer able to visit his favorite bar and grill, as there are steps that he cannot go up in order to enter.
The only way he can leave the house at all anymore is if he uses a manual wheelchair that someone has to push him in, and he needs to be physically lifted and transferred to and from the car. This is not feasible, as my mom is not strong enough to lift him.
He will now require a wheelchair accessible van that has been modified to allow him to drive his motorized wheelchair directly into the vehicle with no transfers and with no assistance. Their current vehicle is not able to withstand the weight of his motorized wheelchair.
Calling 911 has become an every-other-day occurrence, as he often falls while being transferred from his wheelchair to recliner/bed/shower/car/etc and needs lift assistance from the fire department. He has also been taken via ambulance twice within 2 weeks due to severe pain due to complications of ALS that can occurs from a lack of mobility and exercise.
[Below] Life with ALS
Because people with ALS retain their mental functioning abilities, they are aware of their progressive loss of function and may become anxious and depressed; which is the case for my dad. My mom once overheard him in an emotional state talking to his dog as he lay waiting for the fire department to arrive to lift him up off of the ground, saying, “Ladybird, I don’t want to die...” Thoughts of becoming a prisoner inside his own body is a horrifying reality that he will one day have to face.
In-home physical and occupational therapists visit him periodically, but he isn’t able to access many of the specialized therapies or large equipment that can be utilized at actual facilities. With the use of a wheelchair van, he can seek more specialized care, as well as astronomically improve his quality of life by simply having the freedom of leaving his house and interacting with the outside world again.
It takes time and money to obtain the necessary devices and to carry out home modifications so that a person who is disabled can be able to sustain the best quality of life as possible. But time is not something that ALS patients have.
In addition to these assistive devices and home modification costs, ALS patients face extraordinary medical and incidental expenses as well. Medical costs alone are estimated to be around $300,000 each year.
This GoFundMe campaign was established so that Steve can live the best life possible even with this devastating diagnosis. A fellow ALS patient once said, "The saying, 'When life gives you lemons, make lemonade' is for normal people. 'When life gives you a turd sandwich, make THAT into lemonade' is for people living with ALS."
We would be honored to receive any gift amount, large or small, so that Steve can turn this "turd sandwich" into delicious "lemonade".
Organizer and beneficiary
Sarah Norden
Organizer
Clinton, IA
Steven Norden
Beneficiary