grandmommyk
Distinguished member
- Joined
- Jan 30, 2011
- Messages
- 121
- Reason
- CALS
- Diagnosis
- 07/1995
- Country
- US
- State
- TX
- City
- Spring
My family has lived a very long with this disease. My husband was first diagnosed with PLS, then later ALS. He has been reevaluated several different times with different doctors. They all concur that the diagnoses is ALS. In some ways he has symptoms of both. The progression has been much too fast for PLS and much too slow for ALS.
One of our daughter's friend lost her dad to cancer this week. It prompted my daughter to write something on face book. I thought I would repost it here. I think in some ways it's a glimpse into our life.
Its the little things...
by Stephanie Ortiz Fry on Sunday, September 11, 2011 at 12:14am
One of my fondest memories as a kid was when I was about 7ish years old and I was beyond sick. My dad came home from being out of town working, and picked me up and held me in his arms. At that moment I remember feeling safe, loved and knowing everything was going to be okay. Another was around the same age, it was Christmas time and my family was penniless. My mom worked her heart out to make my sister and I pom-poms and my brother a stick horse. Those were the best gifts I ever remember getting as a kid.
Today a dear friend's father died of Cancer. When she told me I started crying uncontrollably and was overwhelmed with sorrow for her and her sweet family. As many of you know, my dad was diagnosed with Lou Gehrigs Disease (also known as ALS). We have watched him suffer for around 18 years with this disease. He has slowly lost his ability to walk, write, talk and so many other little things we all take for granted on a daily basis. We have been called to his bed side more times then I care to remember, because he wasn't going to make it through the night. But he has always managed to walk (or roll) outta the hospital. It has almost become surreal. We don't think about dad dieing anymore, or about not having him around, or messing with his hair to aggravate him, or turning off his wheelchair when he is trying to run us over. That is just how life is, that is just who dad is. I only have one memory left of him walking. Funny, I can't remember him walking any other time but that one. I don't remember what his voice sounded like, or how his laugh was before now. I do remember that he had beautiful hand writing. That all almost seems like another life, or like a distant dream. That isn't dad anymore. The man in the wheelchair who can't walk, who can't talk, who sits quietly in his office watching TV or playing on the computer is my dad. The man who loves his grandkids more then life itself, the one who still tries to be all tough and macho, but is nothing but a big old teddy bear, that is who my dad is. And the times that he does get really sick, its like reliving those words all over again, "your dad is going to die".
Today I realized that there are too many things in life I take for granted. Like that my loved ones will always be around. That I always be able to hear them say I love you, or that they will always be there to laugh at my stupid jokes, or shake their head at me when I start dancing in the middle of the store, just to embarrass them. Its the little things that I will miss the most. Like just needing a hug from my mom or dad when I am down, hearing my daughter say "I love you mommy", listening to my daughter and nieces laugh, my brothers witty remarks, and the crazy looks my sister gives me (you know the ones when you can tell she is thinking, how can she possibly be related to me?), the encouraging and uplifting words my mother has to say, or the silent comfort of just putting my arms around my dad and knowing he loves me, even though he can't say it.
I never want a moment to pass or an opportunity to pass by again, where I don't get the chance to say I love you to those who give me strength daily to continue on. And as we tragically loose the ones that we do love, be sure to thank God for the moments he did give to us. I don't ever want to live this life without those that I hold dear to my heart, but when the time comes, I know they will never doubt the love I have had for them.
One of our daughter's friend lost her dad to cancer this week. It prompted my daughter to write something on face book. I thought I would repost it here. I think in some ways it's a glimpse into our life.
Its the little things...
by Stephanie Ortiz Fry on Sunday, September 11, 2011 at 12:14am
One of my fondest memories as a kid was when I was about 7ish years old and I was beyond sick. My dad came home from being out of town working, and picked me up and held me in his arms. At that moment I remember feeling safe, loved and knowing everything was going to be okay. Another was around the same age, it was Christmas time and my family was penniless. My mom worked her heart out to make my sister and I pom-poms and my brother a stick horse. Those were the best gifts I ever remember getting as a kid.
Today a dear friend's father died of Cancer. When she told me I started crying uncontrollably and was overwhelmed with sorrow for her and her sweet family. As many of you know, my dad was diagnosed with Lou Gehrigs Disease (also known as ALS). We have watched him suffer for around 18 years with this disease. He has slowly lost his ability to walk, write, talk and so many other little things we all take for granted on a daily basis. We have been called to his bed side more times then I care to remember, because he wasn't going to make it through the night. But he has always managed to walk (or roll) outta the hospital. It has almost become surreal. We don't think about dad dieing anymore, or about not having him around, or messing with his hair to aggravate him, or turning off his wheelchair when he is trying to run us over. That is just how life is, that is just who dad is. I only have one memory left of him walking. Funny, I can't remember him walking any other time but that one. I don't remember what his voice sounded like, or how his laugh was before now. I do remember that he had beautiful hand writing. That all almost seems like another life, or like a distant dream. That isn't dad anymore. The man in the wheelchair who can't walk, who can't talk, who sits quietly in his office watching TV or playing on the computer is my dad. The man who loves his grandkids more then life itself, the one who still tries to be all tough and macho, but is nothing but a big old teddy bear, that is who my dad is. And the times that he does get really sick, its like reliving those words all over again, "your dad is going to die".
Today I realized that there are too many things in life I take for granted. Like that my loved ones will always be around. That I always be able to hear them say I love you, or that they will always be there to laugh at my stupid jokes, or shake their head at me when I start dancing in the middle of the store, just to embarrass them. Its the little things that I will miss the most. Like just needing a hug from my mom or dad when I am down, hearing my daughter say "I love you mommy", listening to my daughter and nieces laugh, my brothers witty remarks, and the crazy looks my sister gives me (you know the ones when you can tell she is thinking, how can she possibly be related to me?), the encouraging and uplifting words my mother has to say, or the silent comfort of just putting my arms around my dad and knowing he loves me, even though he can't say it.
I never want a moment to pass or an opportunity to pass by again, where I don't get the chance to say I love you to those who give me strength daily to continue on. And as we tragically loose the ones that we do love, be sure to thank God for the moments he did give to us. I don't ever want to live this life without those that I hold dear to my heart, but when the time comes, I know they will never doubt the love I have had for them.
