My husband passed away from ALS 22 years ago at the young age of 48. It is a devastating, horrible disease that robbed my three children of their father. I would like to see more funding go towards ALS research to find better medication and a cure! We have come a long way, but I would have hoped we would be closer to a cure. My husband was a nurse, suffered from ALS, and now, I watch my good friend suffer with ALS. Watching them suffer truly breaks my heart.
My husband passed away from ALS 22 years ago at the young age of 48. It is a devastating, horrible disease that robbed my three children of their father. I would like to see more funding go towards ALS research to find better medication and a cure! We have come a long way, but I would have hoped we would be closer to a cure. My husband was a nurse, suffered from ALS, and now, I watch my good friend suffer with ALS. Watching them suffer truly breaks my heart.
There was so much we were planning to do in our retirement years: travel, attend grandkids’ sports events and school activities, volunteer, enjoy our Florida condo, and the new friends we met. It all came to a quick end when my spouse was diagnosed in June 2022. My spouse has a very rare and aggressive form of ALS (3% of ALS patients have Respiratory Onset ALS). We are trying to embrace each day and enjoy our time together. We have learned the importance of Faith, Family, and Friends as we face the challenges of this disease. This journey is difficult but we are thankful for the support and love that has been shown to us.
There was so much we were planning to do in our retirement years: travel, attend grandkids’ sports events and school activities, volunteer, enjoy our Florida condo, and the new friends we met. It all came to a quick end when my spouse was diagnosed in June 2022. My spouse has a very rare and aggressive form of ALS (3% of ALS patients have Respiratory Onset ALS). We are trying to embrace each day and enjoy our time together. We have learned the importance of Faith, Family, and Friends as we face the challenges of this disease. This journey is difficult but we are thankful for the support and love that has been shown to us.
I was diagnosed with ALS on 12/14/17. In April of 2017, I started experiencing weakness and a loss of dexterity in my left hand. At first my orthopedic doctor said it was carpal tunnel syndrome, so I let him do the surgery. I had no improvement in that hand. Then I was referred to a Neurologist. After his exam, he was sure it was ALS. He wanted to do one test first, an EMG (electromyography), which he scheduled for the following week. The test confirmed that I had ALS. I used to be a very active person. I used to ride my bike, walk, kayak, dance, play Bingo and do things around our house. As time passed, I began to experience slow progression. I started experiencing foot drop and needed to wear an AFO (ankle-foot orthosis) on my right foot. After a few falls, I started using a cane. From there I graduated to a rollator (walker with wheels). I used that for a while before giving in to a power chair. Now, five years and four months since my diagnosis, I live in my power chair (24/7). Yes, I even sleep in my chair. I am almost totally dependent on others for all my activities of daily living. I have had many blessings throughout this journey. My ALS Clinic has helped me with most of these blessings. I’ve had grants that covered large co-pays for very expensive medication as well as large deductibles for equipment like my eye gaze computer and my power chair. I’ve been blessed by so many people, some I’ve never even met. And now as I am close to total paralysis, I struggle with how I can continue on in such a state. I will lean on the Lord for that.
I was diagnosed with ALS on 12/14/17. In April of 2017, I started experiencing weakness and a loss of dexterity in my left hand. At first my orthopedic doctor said it was carpal tunnel syndrome, so I let him do the surgery. I had no improvement in that hand. Then I was referred to a Neurologist. After his exam, he was sure it was ALS. He wanted to do one test first, an EMG (electromyography), which he scheduled for the following week. The test confirmed that I had ALS. I used to be a very active person. I used to ride my bike, walk, kayak, dance, play Bingo and do things around our house. As time passed, I began to experience slow progression. I started experiencing foot drop and needed to wear an AFO (ankle-foot orthosis) on my right foot. After a few falls, I started using a cane. From there I graduated to a rollator (walker with wheels). I used that for a while before giving in to a power chair. Now, five years and four months since my diagnosis, I live in my power chair (24/7). Yes, I even sleep in my chair. I am almost totally dependent on others for all my activities of daily living. I have had many blessings throughout this journey. My ALS Clinic has helped me with most of these blessings. I’ve had grants that covered large co-pays for very expensive medication as well as large deductibles for equipment like my eye gaze computer and my power chair. I’ve been blessed by so many people, some I’ve never even met. And now as I am close to total paralysis, I struggle with how I can continue on in such a state. I will lean on the Lord for that.
I was diagnosed in 2013 at the age of 39. After hearing that if you have ALS you usually only have 3-5 years to live, it was hard to accept and I went into a deep depression and developed bad anxiety. With the help of prayer and my family I started to live again. Now 10 years later my two kids are grown, my daughter is married with two adorable children, my husband is attending college to become a counselor, and I have a wonderful pup who gets me outside. My advice to all ALS patients is to pray, live, and enjoy the time you have left, which may be longer than you think.
I was diagnosed in 2013 at the age of 39. After hearing that if you have ALS you usually only have 3-5 years to live, it was hard to accept and I went into a deep depression and developed bad anxiety. With the help of prayer and my family I started to live again. Now 10 years later my two kids are grown, my daughter is married with two adorable children, my husband is attending college to become a counselor, and I have a wonderful pup who gets me outside. My advice to all ALS patients is to pray, live, and enjoy the time you have left, which may be longer than you think.