ALS Ice Bucket Challenge Progress
I am the fourth generation in my family born and raised in the Central Valley of California. My parents greatly influenced my siblings and me through their examples of service to our local community. I married and had my own kids, and I, too, was involved in a variety of community organizations. After my eldest son entered the Army, my friends and I started our own nonprofit, supporting the families of active duty military and veterans. The importance of building a circle of support has always been a deep rooted value in my life.
After my first marriage ended, I was blessed with my husband, Terry. We share a blended family of five wonderful, adult children and one glorious grandchild.
Over time, I developed a series of unexplained symptoms, which included diaphragm cramps whenever I was crouched down too long. By early 2020, I was experiencing laryngeal spasms, unexplained shortness of breath, muscle wasting in both hands, shoulders and even tongue. By July, I noticed some trouble with enunciation and occasional slurring. After a nerve conduction study, I received an urgent neurologist referral. In November of 2020 at age 56, I was diagnosed with ALS.
Laura's combined family with husband, Terry.
I have many challenging physical limitations now. Managing utensils with my hands is often a messy, if not dangerous, challenge. Styling my hair or applying makeup is difficult, so I rarely do it. Getting dressed can be exhausting. When I fall, I can't catch myself, due to upper body weakness. My legs are strong, but when tired, I have foot drop. I also get painful cramps, from head to toes.
I have been extremely pleased with my multidisciplinary ALS care team at the Certified Treatment Center of Excellence that I attend. Through the clinic, I was put in touch with the Golden West Chapter and then connected with a Chapter Care Manager. I was scared, and trying to navigate my new reality was hard. My Care Manager has been an incredible guide, who has walked me through a lot, and is so thoughtful in responding to my questions.
The Chapter’s Care Services, offered free of charge, helped me access important health care resources, like voice banking, that I couldn't have found on my own. My Care Manager has also gone above and beyond in helping me navigate Medicare and Social Security. The Chapter excels at helping me access whatever is needed to make life easier, from answering insurance questions to providing resources for medical equipment and educational information.
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Laura at her "happy place" |
Since getting involved with the Golden West Chapter, I have been inspired every day by the stories I've read and of other people I've met fighting this disease. I appreciate the Chapter’s news and updates, and I always respond to advocacy alerts in support of public policy initiatives for our ALS community. I have also been connected to clinical trials. It has been an incredible opportunity to connect with others in Chapter support groups who know what I am going through, and I am amazed by those who participate.
In 2021, my family and I became involved with the Walk to Defeat ALS so we could take an active role fighting this disease. It was exciting to build a team and work together in a positive way, making a difference for other ALS families. Promoting and encouraging a team gives us some power in what often feels like a powerless situation.
Although I certainly have my low points, my faith directs me in choosing to take one day at a time. Being open to the beauty and possibilities around me, creating memories with family and friends, and seeing our children’s families grow, feeds my soul. I’m grateful for every moment and take nothing for granted.
The outpouring of love and kindness that I have received since my diagnosis is humbling. However, I know there are some who feel lost and unsupported. I truly believe as long as you can reach out to the Chapter, or designate one person in your life who can keep in contact with them on your behalf, you will never be alone on this journey.
I choose to say that although I have ALS, ALS does not have me. Team "Miller Time" is back for another year, and I anticipate us surpassing last year's effort! It is so important to get involved and do what you can to advance the search for effective treatments and cures for ALS.
Through community support, there is collective strength, comfort, and grace in the fight to defeat ALS. We just have to believe and ask.
Sincerely,
Laura Nielsen Miller
Wife, Mother, Grandmother, and ALS Ambassador
Team Captain, “Miller Time,” Walk to Defeat ALS
Proceeds from the Walk to Defeat ALS will provide critical funding for the Golden West Chapter's urgent mission priorities in the areas of ALS care services, public policy initiatives, and cutting-edge global research.
I am the fourth generation in my family born and raised in the Central Valley of California. My parents greatly influenced my siblings and me through their examples of service to our local community. I married and had my own kids, and I, too, was involved in a variety of community organizations. After my eldest son entered the Army, my friends and I started our own nonprofit, supporting the families of active duty military and veterans. The importance of building a circle of support has always been a deep rooted value in my life.
After my first marriage ended, I was blessed with my husband, Terry. We share a blended family of five wonderful, adult children and one glorious grandchild.
Over time, I developed a series of unexplained symptoms, which included diaphragm cramps whenever I was crouched down too long. By early 2020, I was experiencing laryngeal spasms, unexplained shortness of breath, muscle wasting in both hands, shoulders and even tongue. By July, I noticed some trouble with enunciation and occasional slurring. After a nerve conduction study, I received an urgent neurologist referral. In November of 2020 at age 56, I was diagnosed with ALS.
Laura's combined family with husband, Terry.
I have many challenging physical limitations now. Managing utensils with my hands is often a messy, if not dangerous, challenge. Styling my hair or applying makeup is difficult, so I rarely do it. Getting dressed can be exhausting. When I fall, I can't catch myself, due to upper body weakness. My legs are strong, but when tired, I have foot drop. I also get painful cramps, from head to toes.
I have been extremely pleased with my multidisciplinary ALS care team at the Certified Treatment Center of Excellence that I attend. Through the clinic, I was put in touch with the Golden West Chapter and then connected with a Chapter Care Manager. I was scared, and trying to navigate my new reality was hard. My Care Manager has been an incredible guide, who has walked me through a lot, and is so thoughtful in responding to my questions.
The Chapter’s Care Services, offered free of charge, helped me access important health care resources, like voice banking, that I couldn't have found on my own. My Care Manager has also gone above and beyond in helping me navigate Medicare and Social Security. The Chapter excels at helping me access whatever is needed to make life easier, from answering insurance questions to providing resources for medical equipment and educational information.
|
|
|
Laura at her "happy place" |
Since getting involved with the Golden West Chapter, I have been inspired every day by the stories I've read and of other people I've met fighting this disease. I appreciate the Chapter’s news and updates, and I always respond to advocacy alerts in support of public policy initiatives for our ALS community. I have also been connected to clinical trials. It has been an incredible opportunity to connect with others in Chapter support groups who know what I am going through, and I am amazed by those who participate.
In 2021, my family and I became involved with the Walk to Defeat ALS so we could take an active role fighting this disease. It was exciting to build a team and work together in a positive way, making a difference for other ALS families. Promoting and encouraging a team gives us some power in what often feels like a powerless situation.
Although I certainly have my low points, my faith directs me in choosing to take one day at a time. Being open to the beauty and possibilities around me, creating memories with family and friends, and seeing our children’s families grow, feeds my soul. I’m grateful for every moment and take nothing for granted.
The outpouring of love and kindness that I have received since my diagnosis is humbling. However, I know there are some who feel lost and unsupported. I truly believe as long as you can reach out to the Chapter, or designate one person in your life who can keep in contact with them on your behalf, you will never be alone on this journey.
I choose to say that although I have ALS, ALS does not have me. Team "Miller Time" is back for another year, and I anticipate us surpassing last year's effort! It is so important to get involved and do what you can to advance the search for effective treatments and cures for ALS.
Through community support, there is collective strength, comfort, and grace in the fight to defeat ALS. We just have to believe and ask.
Sincerely,
Laura Nielsen Miller
Wife, Mother, Grandmother, and ALS Ambassador
Team Captain, “Miller Time,” Walk to Defeat ALS
Proceeds from the Walk to Defeat ALS will provide critical funding for the Golden West Chapter's urgent mission priorities in the areas of ALS care services, public policy initiatives, and cutting-edge global research.
