ALS fighter Mike Cook funeral fund
Donation protected
A story of a man and his battle with ALS...#fightwithmike
In November of 2015, after months of unexplained muscle weakness and weight loss, and test after test, Mike Cook was diagnosed with ALS at the age of 54. Since then, his and his family's lives changed drastically, learning to cope and live with this disease at the forefront.
What is ALS?
Often referred to as Lou Gehrig's Disease, Amyotrophic Lateral Sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need. There is no cure for this disease and there is only one drug currently approved by the FDA that they "think" helps with prolonging the life of an ALS patient.
How has ALS changed Mike's life since diagnosis?
Between his official diagnosis in November and the end of 2015, the ALS started to show much more. Every day tasks started to become challenging for Mike due to some of his early symptoms. It started with random muscle spasms and unexplained weakness in his hands, legs and arms. Showering became very tiring and his shoulders were not allowing him to reach and lift like he use to. Simple things such as carrying a cup of hot coffee or a plate of food down the stairs had turned into him dropping dishes and accidents happening right and left. His safety became a concern when he started to have episodes of falling down the stairs (multiple times) and his legs suddenly would give out for no reason. The stairs eventually were no longer an option as the fear of falling was always in the back of his mind. Mike had struggled with the idea of losing any self independence (like any normal person would) since the day he was diagnosed. Previous to his diagnosis, Mike has seen 2 of his brothers pass away from this terrible disease and also his niece. About 10% of ALS cases are considered "familial ALS" (FALS) and in these cases, more than one person in the family has ALS and sometimes family members have frontotemporal dementia as well. This also means that there is always a 50% chance of passing this genetic mutation to each of his or her children. "After you see 2 of your brothers pass so quickly, you can only pray and hope you will never have to endure the same pain someday". Unfortunately, Mike's life changed forever when he was diagnosed in November and he is now on the same horrific path his two brothers once endured. The disease “takes no prisoners” and attacks and debilitates patients and families, on many levels, without pause or remorse.
It is now almost February of 2016 and the ALS has progressed so rapidly that Mike now spends his days at home confined to a single room in a hospital bed. He can no longer stand or walk on his own, bathing/toileting, nor prepare meals independently. He is planning to have a feeding tube placed very soon in order to maintain his weight and nutrition. His respiratory levels have been continually declining and he does rely on the help of supplemental oxygen forms to help get him through each day. Eventually, Mike will need to have a trache placed, which could then lead to a ventilator which is a machine that would be doing all of the breathing for him (these are all possibilities as the disease progresses). At Mike's last doctors appointment in early January, his weight was stable which we were VERY happy to see, however, his respiratory levels were of concern. We are praying his breathing muscles stay stable enough to have the feeding tube placed and that he remains a candidate for the feeding tube surgery. Mike is becoming a prisoner in his own body and by the day he is losing his self independence. His arms, legs, feet...He is losing all control and his need for 24/7 nursing care in the home is mandatory. Although ALS has caused his physical appearence to change, Mike is still the same person as he was before. A man with a compassion for helping others and a heart of gold. This disease has been a total life changer for Mike because he has always been the type of person to never ask others for help. They call ALS a caregivers disease because an ALS patient will rely for everything from their caregivers. Some may say he is stubborn, but he is a very independent hard working man who has always believed in doing things for himself. ALS has changed his life completely and now he is a vulnerable man that no longer has the power to be independent. This is a very hard thing for him to accept and the depression of living with ALS has been trying to consume him daily.
A day in the life of Mike...
Prior to having ALS, Mike use to be the type of person that was always on the go, working outside in his garden, visiting friends or helping anyone out that he could lend a hand to when they needed him. Mike is a bone cancer survivor and became officially retired in 2005. After ALS changed his life completely in 2015, Mike now spends his days at home. He does not own an electric or manual wheelchair and requires the help of others for any form of transport. He enjoys watching a lot of television- including his favorite Western movies, Michigan Out-of-Doors and the Ellen Show (yes he loves to watch Ellen and every time she dances he still smiles and laughs at her!). He has always had a passion for the outdoors and is an avid hunter and fisherman. Many of his trophy bucks and fish mounts are on display for him to see daily in his living space. He loves to show off his mounts, however they are a constant reminder of an activity and passion that ALS has taken away from him. He is always watching the news and constantly calling his daughter Kim in Florida to give her the Michigan weather updates. Visitors are welcome to stop by to see him, since leaving the home is very challenging. Mike is now confined to just one room of his home, which has been turned into his own one bedroom studio. He enjoys the companionship of his 150lb bloodhound named Dozer who is his protector and overly large furball that will never leave his side. He relys strictly on a caregiver to provide him with everything he needs to live and feel comfortable on a daily basis (although he is far from comfortable). A few days each week, Mike has a physical therapist, occupational therapist and nurse that stop in to see him. These visits are very short and never long. The company that provides these services are more for "short term" care. It is evident that Mike needs more attentive care that is unfortunately not a covered expense by his healthcare provider.
Why we need your help!
The goal of this fundraiser is to raise money to help cover the costs of some of the necessary equipment and care that Mike needs to live on a daily basis as his disease progresses. Many of these expenses must be paid "out of pocket" or are not covered by basic insurance plans. Most of us would never budget for situations like this and extreme expenses that we would never think to happen. In Mike's case, some equipment has been received from community loaner closets and through Medicare. His only health insurance coverage does not cover the full costs of a powered wheelchair, manual wheelchair or for private nursing aides to be in the home. We would like to make him more comfortable by getting him the powered wheelchair and to help him live more independently. This chair will also reduce the risk of bed sores because as he lives and sleeps in the chair, he is able to tilt and take pressure off areas of the skin to keep it protected. A manual wheelchair is also needed to help with transporting him to and from appointments. Transportation is a huge challenge and it requires multiple people to help with unloading and loading him into a vehicle. We do not have the extra hands available and help is very limited! Eventually, transporting him in a small 4 door car will become more and more difficult and a wheelchair transport service would be more appropriate, which will mean more expenses in the future. Our biggest challenge besides finding him a wheelchair includes the need for more caregivers. The role of being a caregiver can be overwhelming and they call ALS a caregivers disease because it is that demanding. We do not have the funds to hire private nursing aides to be in the home. That is the kind of care that Mike desperately needs right now as his disease progresses. Mike's in home caregiver (a friend of his) has been a huge help with keeping Mike alive and comfortable when he is able to provide care. Out of compassion, this person volunteers to help Mike because he cares for him. He knows that if Mike did not have him around, he would have nobody else to rely on to make it through each day. These acts of compassion truely define a great friend. If ALS has taught us anything, we have learned that it is hard to find true friends or family that will stick by your side during times when you need them the most. His in home primary caregiver also helps with daily house keeping, preparing meals and anything that Mike asks of him and more. With available funding to hire nurse aides, we would like to offer respite services to allow his friend a break from the daily demands of providing care and to give this person time to meet the demands of their own life as well.
We are in search of funds immediately, to ensure Mike receives his powered wheelchair as soon as possible. With how fast his ALS has progressed, we do not have time to waste. Now that Mike cannot stand or walk and his condition continues to advance, the demand for care in the home is even more of a priority. He will also be having the feeding tube placed soon, which will require more care between his feedings and tube maintenance. Mike has decided to spend the remainder of his days in a place that is most comfortable to him, which is in the comfort of his own home. He does not wish to go to a nursing home. The financial impact of the degree of care that is needed for ALS is daunting for the family and nobody should ever have to feel as though they can't afford to live. This online fundraising effort will provide as a resource so needed care can be provided and family reserves are not further depleted. Prayers are always accepted and we would be forever thankful if you would like to make any kind of donation, large or small that can be put towards Mike's fight against ALS.
Our family will not stop fighting until there is a cure for ALS.
#fightwithmike.
In November of 2015, after months of unexplained muscle weakness and weight loss, and test after test, Mike Cook was diagnosed with ALS at the age of 54. Since then, his and his family's lives changed drastically, learning to cope and live with this disease at the forefront.
What is ALS?
Often referred to as Lou Gehrig's Disease, Amyotrophic Lateral Sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis. Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries. This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need. There is no cure for this disease and there is only one drug currently approved by the FDA that they "think" helps with prolonging the life of an ALS patient.
How has ALS changed Mike's life since diagnosis?
Between his official diagnosis in November and the end of 2015, the ALS started to show much more. Every day tasks started to become challenging for Mike due to some of his early symptoms. It started with random muscle spasms and unexplained weakness in his hands, legs and arms. Showering became very tiring and his shoulders were not allowing him to reach and lift like he use to. Simple things such as carrying a cup of hot coffee or a plate of food down the stairs had turned into him dropping dishes and accidents happening right and left. His safety became a concern when he started to have episodes of falling down the stairs (multiple times) and his legs suddenly would give out for no reason. The stairs eventually were no longer an option as the fear of falling was always in the back of his mind. Mike had struggled with the idea of losing any self independence (like any normal person would) since the day he was diagnosed. Previous to his diagnosis, Mike has seen 2 of his brothers pass away from this terrible disease and also his niece. About 10% of ALS cases are considered "familial ALS" (FALS) and in these cases, more than one person in the family has ALS and sometimes family members have frontotemporal dementia as well. This also means that there is always a 50% chance of passing this genetic mutation to each of his or her children. "After you see 2 of your brothers pass so quickly, you can only pray and hope you will never have to endure the same pain someday". Unfortunately, Mike's life changed forever when he was diagnosed in November and he is now on the same horrific path his two brothers once endured. The disease “takes no prisoners” and attacks and debilitates patients and families, on many levels, without pause or remorse.
It is now almost February of 2016 and the ALS has progressed so rapidly that Mike now spends his days at home confined to a single room in a hospital bed. He can no longer stand or walk on his own, bathing/toileting, nor prepare meals independently. He is planning to have a feeding tube placed very soon in order to maintain his weight and nutrition. His respiratory levels have been continually declining and he does rely on the help of supplemental oxygen forms to help get him through each day. Eventually, Mike will need to have a trache placed, which could then lead to a ventilator which is a machine that would be doing all of the breathing for him (these are all possibilities as the disease progresses). At Mike's last doctors appointment in early January, his weight was stable which we were VERY happy to see, however, his respiratory levels were of concern. We are praying his breathing muscles stay stable enough to have the feeding tube placed and that he remains a candidate for the feeding tube surgery. Mike is becoming a prisoner in his own body and by the day he is losing his self independence. His arms, legs, feet...He is losing all control and his need for 24/7 nursing care in the home is mandatory. Although ALS has caused his physical appearence to change, Mike is still the same person as he was before. A man with a compassion for helping others and a heart of gold. This disease has been a total life changer for Mike because he has always been the type of person to never ask others for help. They call ALS a caregivers disease because an ALS patient will rely for everything from their caregivers. Some may say he is stubborn, but he is a very independent hard working man who has always believed in doing things for himself. ALS has changed his life completely and now he is a vulnerable man that no longer has the power to be independent. This is a very hard thing for him to accept and the depression of living with ALS has been trying to consume him daily.
A day in the life of Mike...
Prior to having ALS, Mike use to be the type of person that was always on the go, working outside in his garden, visiting friends or helping anyone out that he could lend a hand to when they needed him. Mike is a bone cancer survivor and became officially retired in 2005. After ALS changed his life completely in 2015, Mike now spends his days at home. He does not own an electric or manual wheelchair and requires the help of others for any form of transport. He enjoys watching a lot of television- including his favorite Western movies, Michigan Out-of-Doors and the Ellen Show (yes he loves to watch Ellen and every time she dances he still smiles and laughs at her!). He has always had a passion for the outdoors and is an avid hunter and fisherman. Many of his trophy bucks and fish mounts are on display for him to see daily in his living space. He loves to show off his mounts, however they are a constant reminder of an activity and passion that ALS has taken away from him. He is always watching the news and constantly calling his daughter Kim in Florida to give her the Michigan weather updates. Visitors are welcome to stop by to see him, since leaving the home is very challenging. Mike is now confined to just one room of his home, which has been turned into his own one bedroom studio. He enjoys the companionship of his 150lb bloodhound named Dozer who is his protector and overly large furball that will never leave his side. He relys strictly on a caregiver to provide him with everything he needs to live and feel comfortable on a daily basis (although he is far from comfortable). A few days each week, Mike has a physical therapist, occupational therapist and nurse that stop in to see him. These visits are very short and never long. The company that provides these services are more for "short term" care. It is evident that Mike needs more attentive care that is unfortunately not a covered expense by his healthcare provider.
Why we need your help!
The goal of this fundraiser is to raise money to help cover the costs of some of the necessary equipment and care that Mike needs to live on a daily basis as his disease progresses. Many of these expenses must be paid "out of pocket" or are not covered by basic insurance plans. Most of us would never budget for situations like this and extreme expenses that we would never think to happen. In Mike's case, some equipment has been received from community loaner closets and through Medicare. His only health insurance coverage does not cover the full costs of a powered wheelchair, manual wheelchair or for private nursing aides to be in the home. We would like to make him more comfortable by getting him the powered wheelchair and to help him live more independently. This chair will also reduce the risk of bed sores because as he lives and sleeps in the chair, he is able to tilt and take pressure off areas of the skin to keep it protected. A manual wheelchair is also needed to help with transporting him to and from appointments. Transportation is a huge challenge and it requires multiple people to help with unloading and loading him into a vehicle. We do not have the extra hands available and help is very limited! Eventually, transporting him in a small 4 door car will become more and more difficult and a wheelchair transport service would be more appropriate, which will mean more expenses in the future. Our biggest challenge besides finding him a wheelchair includes the need for more caregivers. The role of being a caregiver can be overwhelming and they call ALS a caregivers disease because it is that demanding. We do not have the funds to hire private nursing aides to be in the home. That is the kind of care that Mike desperately needs right now as his disease progresses. Mike's in home caregiver (a friend of his) has been a huge help with keeping Mike alive and comfortable when he is able to provide care. Out of compassion, this person volunteers to help Mike because he cares for him. He knows that if Mike did not have him around, he would have nobody else to rely on to make it through each day. These acts of compassion truely define a great friend. If ALS has taught us anything, we have learned that it is hard to find true friends or family that will stick by your side during times when you need them the most. His in home primary caregiver also helps with daily house keeping, preparing meals and anything that Mike asks of him and more. With available funding to hire nurse aides, we would like to offer respite services to allow his friend a break from the daily demands of providing care and to give this person time to meet the demands of their own life as well.
We are in search of funds immediately, to ensure Mike receives his powered wheelchair as soon as possible. With how fast his ALS has progressed, we do not have time to waste. Now that Mike cannot stand or walk and his condition continues to advance, the demand for care in the home is even more of a priority. He will also be having the feeding tube placed soon, which will require more care between his feedings and tube maintenance. Mike has decided to spend the remainder of his days in a place that is most comfortable to him, which is in the comfort of his own home. He does not wish to go to a nursing home. The financial impact of the degree of care that is needed for ALS is daunting for the family and nobody should ever have to feel as though they can't afford to live. This online fundraising effort will provide as a resource so needed care can be provided and family reserves are not further depleted. Prayers are always accepted and we would be forever thankful if you would like to make any kind of donation, large or small that can be put towards Mike's fight against ALS.
Our family will not stop fighting until there is a cure for ALS.
#fightwithmike.
Organizer and beneficiary
Kimberly Shuck
Organizer
Cedar Springs, MI
Kimberly Shuck
Beneficiary