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A PALS Journey by Cathy Speck
Patient_Newsletter_August_09_8.3.pdfA PALS Journey by.pdfA PALS Journey by
Cathy Speck
It was 1971, in Davis CA, when my mom and Dad asked us kids to sit down at the dinner table for a serious discussion. My parents had nine children, with four of us still living at home. We were a happy, active, warm family and my mom had always been robust and lively and immune to even the cold or flu. Or so it seemed. For about a year she kept going to the doctor with mysterious symptoms. Nothing seemed too horrible, doctors said. Probably bursitis, or "tennis elbow" or "hitchhikers thumb."
But that evening, when we all sat down and passed around a light blue brochure, we learned that Mom had ALS. We were told that she had a terminal disease and that she might live 2 to 5 years. She was only 50. We also found out that my mom's aunt, Mary, died of ALS at the age of 54, and that the disease wasn't hereditary but could run in families. I refused to believe that anything could kill my mom. She died Dec 19, 1972. I was thirteen. My family and the commu¬nity were devastated. And our lives were changed forever.
On May 6th 2008, my second oldest brother Larry was diagnosed with ALS. He died June 22nd the same year. He too had been misdiagnosed for quite awhile. Larry was willing to have his DNA tested so we could help researchers with familial ALS studies. Other siblings and cousins also sent in their blood. I felt like I had been "studying" ALS since I was a teenager, and I wanted more than anything to help find a cause and cure. I sent my blood to Northwestern University in Chicago. I told them I would do anything to help. I also contacted the Sacramento Chapter of the ALS Association to see if we could help in anyway by offering our music. Meanwhile, I was symptomatic, and went to my doctor and two neurologists. Then the news came that my brother had a rare SOD1 mutation, and I have the same one. Just like my brother, for decades I had this "gut feeling" that I, too, would get ALS.
So here I am with my neck brace and walker decorated with wacky flare, fun toys and a clown horn, laughing loudly and smiling as broadly as ever. The progression in my family runs a bit differently, so the experts tell me to look at how my relatives lived and died¬¬then ¬¬I might get some idea of what to expect.
My heart goes out to all of you and your loved ones who were diagnosed with ALS when you knew nothing about it. I can't imagine how terrified, confused and frustrated you would feel. But since you’re reading this newsletter, I hope you are all finding help through the ALS Asso¬ciation, Greater Sacramento Chapter.
We've been coming to the Sacramento Chapter support group since February, and I am so grateful for this community. What a wonderful and diverse group of people! I always feel better after seeing you all, and I'm amazed by the hardworking folks who keep this chapter thriving. This journey has renewed my faith in the potential for humankind. The kindness, generosity, compassion, and love being shown to me and my wife Linda, astonishes me. I am so fortunate to have Linda by my side, and I know not everyone is so blessed. But I do believe that we all can create a better way for ourselves by combining our determination, love and hope for each other, in the support group and in our day to day lives. This is a journey for us all, as our muscles become smaller and our hearts grow fuller.
Love powers this journey, and smiles light the way.
Cheers!
Cathy Speck
music@duvalspeck.com
Cathy Speck
It was 1971, in Davis CA, when my mom and Dad asked us kids to sit down at the dinner table for a serious discussion. My parents had nine children, with four of us still living at home. We were a happy, active, warm family and my mom had always been robust and lively and immune to even the cold or flu. Or so it seemed. For about a year she kept going to the doctor with mysterious symptoms. Nothing seemed too horrible, doctors said. Probably bursitis, or "tennis elbow" or "hitchhikers thumb."
But that evening, when we all sat down and passed around a light blue brochure, we learned that Mom had ALS. We were told that she had a terminal disease and that she might live 2 to 5 years. She was only 50. We also found out that my mom's aunt, Mary, died of ALS at the age of 54, and that the disease wasn't hereditary but could run in families. I refused to believe that anything could kill my mom. She died Dec 19, 1972. I was thirteen. My family and the commu¬nity were devastated. And our lives were changed forever.
On May 6th 2008, my second oldest brother Larry was diagnosed with ALS. He died June 22nd the same year. He too had been misdiagnosed for quite awhile. Larry was willing to have his DNA tested so we could help researchers with familial ALS studies. Other siblings and cousins also sent in their blood. I felt like I had been "studying" ALS since I was a teenager, and I wanted more than anything to help find a cause and cure. I sent my blood to Northwestern University in Chicago. I told them I would do anything to help. I also contacted the Sacramento Chapter of the ALS Association to see if we could help in anyway by offering our music. Meanwhile, I was symptomatic, and went to my doctor and two neurologists. Then the news came that my brother had a rare SOD1 mutation, and I have the same one. Just like my brother, for decades I had this "gut feeling" that I, too, would get ALS.
So here I am with my neck brace and walker decorated with wacky flare, fun toys and a clown horn, laughing loudly and smiling as broadly as ever. The progression in my family runs a bit differently, so the experts tell me to look at how my relatives lived and died¬¬then ¬¬I might get some idea of what to expect.
My heart goes out to all of you and your loved ones who were diagnosed with ALS when you knew nothing about it. I can't imagine how terrified, confused and frustrated you would feel. But since you’re reading this newsletter, I hope you are all finding help through the ALS Asso¬ciation, Greater Sacramento Chapter.
We've been coming to the Sacramento Chapter support group since February, and I am so grateful for this community. What a wonderful and diverse group of people! I always feel better after seeing you all, and I'm amazed by the hardworking folks who keep this chapter thriving. This journey has renewed my faith in the potential for humankind. The kindness, generosity, compassion, and love being shown to me and my wife Linda, astonishes me. I am so fortunate to have Linda by my side, and I know not everyone is so blessed. But I do believe that we all can create a better way for ourselves by combining our determination, love and hope for each other, in the support group and in our day to day lives. This is a journey for us all, as our muscles become smaller and our hearts grow fuller.
Love powers this journey, and smiles light the way.
Cheers!
Cathy Speck
music@duvalspeck.com
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