I was diagnosed in July 2016 with ALS. It was a very devastating day and I was in shock. That day the doctor told me that my life expectancy was 2 to 7 years. Once I could come to terms with the fact that I was dying, I decided to live every day. Not complaining about being sick, but appreciating my life daily.
Today, I am still able to walk (with a walker), my breathing was in the 80’s in May 2023, and thankfully, I can still eat and drink. My doctors are amazing and the ALS Association has supported me since day one. I am very blessed and truly believe that God is my rock and my faith sustains me.
My only concern today is trying to make sure I can afford this disease and still have the money to enjoy living! One of my medications that I need to help me make it through the day is Nuedexta. This year for a 90-day supply, I have paid $1,600 and $1,200, It is time to order again and the price will be around $800 for 90 days. I have other medications that I take daily, but this is the medication that I might have to make a decision about whether I can go without it.
God forbid, I would have to make that decision. Please help us to live a fulfilling life without the worry of paying for medication that we have to take daily. I appreciate every day that God gives me. I don’t want to regret living because of the medication I have to take to live a fulfilling life.
I was diagnosed in July 2016 with ALS. It was a very devastating day and I was in shock. That day the doctor told me that my life expectancy was 2 to 7 years. Once I could come to terms with the fact that I was dying, I decided to live every day. Not complaining about being sick, but appreciating my life daily.
Today, I am still able to walk (with a walker), my breathing was in the 80’s in May 2023, and thankfully, I can still eat and drink. My doctors are amazing and the ALS Association has supported me since day one. I am very blessed and truly believe that God is my rock and my faith sustains me.
My only concern today is trying to make sure I can afford this disease and still have the money to enjoy living! One of my medications that I need to help me make it through the day is Nuedexta. This year for a 90-day supply, I have paid $1,600 and $1,200, It is time to order again and the price will be around $800 for 90 days. I have other medications that I take daily, but this is the medication that I might have to make a decision about whether I can go without it.
God forbid, I would have to make that decision. Please help us to live a fulfilling life without the worry of paying for medication that we have to take daily. I appreciate every day that God gives me. I don’t want to regret living because of the medication I have to take to live a fulfilling life.
I was diagnosed at 57 with ALS in 2021. My father and sister have already died from ALS. It was a horrible death and I don’t want to have to go through that. If the US government would allocate more money for ALS research, then they may be able to develop a drug that could prolong life. Most people with ALS live 2 to 5 years. So sad. Please help!
I was diagnosed at 57 with ALS in 2021. My father and sister have already died from ALS. It was a horrible death and I don’t want to have to go through that. If the US government would allocate more money for ALS research, then they may be able to develop a drug that could prolong life. Most people with ALS live 2 to 5 years. So sad. Please help!
This is not an ordinary story about ALS. My husband not only died of ALS, but his first wife died of this horrible disease as well. What are the chances of a husband and wife dying from this horrific condition? In 2019 when my husband Vince started falling, we never thought of ALS, or that it could invade his life again. Diagnosed in December 2019, he knew the future was “a death sentence.” Vince passed away October 2020.
This disease is rapid, it has no respect of age or sex. Every month brought a new challenge, a new problem, a new condition. Vince was 79. He thought at that age he couldn’t get the disease.
Government officials: this can happen to you, your loved one, or your family. It will touch you in some way. Today it’s finally getting diagnosed a little quicker, but not fast enough. Many times it’s too late to get help to families and patients who need the help and resources.
Our living room became a hospital room with me, his wife, caring for Vince 24 hours a day. I am very grateful for hospice who became my lifeline when I didn’t know what to do, along with the ALS Association helping me understand every step.
Funding needs to continue for research, doctors and medical groups. Please think of it as one of your own being saved from this horrible disease.
This is not an ordinary story about ALS. My husband not only died of ALS, but his first wife died of this horrible disease as well. What are the chances of a husband and wife dying from this horrific condition? In 2019 when my husband Vince started falling, we never thought of ALS, or that it could invade his life again. Diagnosed in December 2019, he knew the future was “a death sentence.” Vince passed away October 2020.
This disease is rapid, it has no respect of age or sex. Every month brought a new challenge, a new problem, a new condition. Vince was 79. He thought at that age he couldn’t get the disease.
Government officials: this can happen to you, your loved one, or your family. It will touch you in some way. Today it’s finally getting diagnosed a little quicker, but not fast enough. Many times it’s too late to get help to families and patients who need the help and resources.
Our living room became a hospital room with me, his wife, caring for Vince 24 hours a day. I am very grateful for hospice who became my lifeline when I didn’t know what to do, along with the ALS Association helping me understand every step.
Funding needs to continue for research, doctors and medical groups. Please think of it as one of your own being saved from this horrible disease.
I recently attended the ALS fly-in meetings to meet with my congressional representatives. It was my first time as an advocate for ALS and of course, I was a little nervous. It really wasn’t anything nearly like what I thought it would be. Once the meetings began it was pretty much like talking to a friend. The Association gives you talking points that they’d like you to mention and you just fit them into your own story. It felt really good to know that I was helping spread the word about how ALS affects people and their families. At this point, I am committed to ALS advocacy as long as I can do it.
I recently attended the ALS fly-in meetings to meet with my congressional representatives. It was my first time as an advocate for ALS and of course, I was a little nervous. It really wasn’t anything nearly like what I thought it would be. Once the meetings began it was pretty much like talking to a friend. The Association gives you talking points that they’d like you to mention and you just fit them into your own story. It felt really good to know that I was helping spread the word about how ALS affects people and their families. At this point, I am committed to ALS advocacy as long as I can do it.
My wife and I had been together in an incredible life for 36 years. We were married for 34 years. In those years, we never had an argument where we raised our voices at each other. We truly had a blessed unbreakable bond.
In July 2021, while on a trip she had an incident with a fall but was not hurt, although this was very uncharacteristic of her. Her speech was a little slurred as well. My wife had a beautiful, resonant clear voice. Also, she had a persistent cough, short coughs like she was trying to clear her throat, and was having trouble breathing. She blamed it on allergies. As soon as we returned I told her we needed to go to the hospital to find out what was causing all these symptoms. She reluctantly agreed. As it turns out, the doctor suggested after a thorough checkup that she stay in the hospital for some tests.
When the results of the tests came back, a neurologist met with us. He performed some motor and strength tests. He said we needed to consult with a neurologist trained and experienced with motor neuron disease. After visiting with her, and motor/strength tests, she informed my wife and I that she has ALS. This was in early October 2021. I was devastated; my heart sank but I didn’t show emotion outwardly. My wife took the news in stride, never complained, NOT ONCE!
I won’t go into the details of the next 11 months other than, as each month went by, her ability to talk and eat got worse. In January 2022 she could no longer eat solid food, Everything had to be pureed. She was using a suction machine to clear saliva secretions because her throat muscles were failing. In March she was using a walker, By May she was in a wheelchair. On September 18 as I brought in her food, she told me she was done eating. I said ok, went back into the kitchen, put the food on the counter, went into the bedroom, closed the door and wept. She did not want to be on a feeding tube. She never seriously considered it. She did not want to be alive with all of her muscles failing. In other words, she did not want to suffer nor did she want me to provide all her care. She was thinking about how her disease affected my life. She was selfless, humble, and irreplaceable.
On September 26, 2022, the Lord took my beautiful, loving wife home.
Out of this story, I hope that all those suffering with ALS, including caregivers and family members, may come away with some advice. Small symptoms may be a sign of larger health issues. Don’t ignore seemingly insignificant things. The ALS patient should have final say about their wishes. Although we don’t want to lose our loved one, consider what they are going through. This disease is a huge struggle for them. Probably the biggest one they have ever had to endure. Since there is no cure, do everything possible to ensure your loved one’s comfort. There will be times when their patience is low. They may snap at you from time to time. Some victims of ALS may even become very hard to deal with. This is the disease taking it’s toll on them. We cannot know the stresses and frustrations they have if we have never been through it. Try to be tolerant and loving. The ALS Association has many programs to assist caregivers. Be cautious about making important decisions in the aftermath of your loss. You are at the highest stress level you have ever been in all likelihood. Work closely with family members when making burial arrangements. Be patient with them and act in a spirit of love. It will take time to readjust to living without your loved one, perhaps a year or more. Allow yourself to grieve. The pain of loss will sometimes seem overwhelming. Please use the resources of the ALS Association.
I know what you are going through. And I know this letter may be hard, maybe even harsh to read. Please know that I wrote this out of love and empathy for you. These words are a difficult reality and reflect life. I will pray for all those who are experiencing this devastating disease.
My wife and I had been together in an incredible life for 36 years. We were married for 34 years. In those years, we never had an argument where we raised our voices at each other. We truly had a blessed unbreakable bond.
In July 2021, while on a trip she had an incident with a fall but was not hurt, although this was very uncharacteristic of her. Her speech was a little slurred as well. My wife had a beautiful, resonant clear voice. Also, she had a persistent cough, short coughs like she was trying to clear her throat, and was having trouble breathing. She blamed it on allergies. As soon as we returned I told her we needed to go to the hospital to find out what was causing all these symptoms. She reluctantly agreed. As it turns out, the doctor suggested after a thorough checkup that she stay in the hospital for some tests.
When the results of the tests came back, a neurologist met with us. He performed some motor and strength tests. He said we needed to consult with a neurologist trained and experienced with motor neuron disease. After visiting with her, and motor/strength tests, she informed my wife and I that she has ALS. This was in early October 2021. I was devastated; my heart sank but I didn’t show emotion outwardly. My wife took the news in stride, never complained, NOT ONCE!
I won’t go into the details of the next 11 months other than, as each month went by, her ability to talk and eat got worse. In January 2022 she could no longer eat solid food, Everything had to be pureed. She was using a suction machine to clear saliva secretions because her throat muscles were failing. In March she was using a walker, By May she was in a wheelchair. On September 18 as I brought in her food, she told me she was done eating. I said ok, went back into the kitchen, put the food on the counter, went into the bedroom, closed the door and wept. She did not want to be on a feeding tube. She never seriously considered it. She did not want to be alive with all of her muscles failing. In other words, she did not want to suffer nor did she want me to provide all her care. She was thinking about how her disease affected my life. She was selfless, humble, and irreplaceable.
On September 26, 2022, the Lord took my beautiful, loving wife home.
Out of this story, I hope that all those suffering with ALS, including caregivers and family members, may come away with some advice. Small symptoms may be a sign of larger health issues. Don’t ignore seemingly insignificant things. The ALS patient should have final say about their wishes. Although we don’t want to lose our loved one, consider what they are going through. This disease is a huge struggle for them. Probably the biggest one they have ever had to endure. Since there is no cure, do everything possible to ensure your loved one’s comfort. There will be times when their patience is low. They may snap at you from time to time. Some victims of ALS may even become very hard to deal with. This is the disease taking it’s toll on them. We cannot know the stresses and frustrations they have if we have never been through it. Try to be tolerant and loving. The ALS Association has many programs to assist caregivers. Be cautious about making important decisions in the aftermath of your loss. You are at the highest stress level you have ever been in all likelihood. Work closely with family members when making burial arrangements. Be patient with them and act in a spirit of love. It will take time to readjust to living without your loved one, perhaps a year or more. Allow yourself to grieve. The pain of loss will sometimes seem overwhelming. Please use the resources of the ALS Association.
I know what you are going through. And I know this letter may be hard, maybe even harsh to read. Please know that I wrote this out of love and empathy for you. These words are a difficult reality and reflect life. I will pray for all those who are experiencing this devastating disease.