amywiller
11-13-2007, 03:16 PM
Hello all,
what a great site, i am thankful I found you. My dad was dx'd w/ ALS in August but says he couldn't grip his golf clubs correctly two years ago. He is one of 16 children and three of my aunts (his sisters) have passed from ALS already. I see from two sides how this will probably go. I am horrified that my father has this even though given the family history maybe i don't have a right to be surprised. Also, I am a speech pathologist so I see not only the family/caregiver view but also the clinical one. I am grateful that I have some specific skills that can help my dad in addition to being his devoted daughter, but the distance between us (I am 100 miles away) stresses me. Obviously when the time comes I will take a leave from my job to be with him, but my family is really relying on me to be strong and in control and in the dark at night I am petrified as to whether i will be able to keep it together for everyone. my dad has strongly indicated he wants nothing invasive (no tube or vent) and he will stand by his decision, he is a man of strong opinions and convictions and obviously we will respect his decisions, but as this year draws to a close I am both dreading and loving what the next year will bring. What I mean is, this disease takes away so much but at the same time it draws out the wonderful- all the love, care, concern of family members, friends and even strangers really renews my faith in the goodness of this world. I am so thankful that I have found a place to share my thoughts with people who will understand, as not even the therapists I work with have necessarily seen ALS firsthand.
Take care everyone, my thoughts are with you all.
what a great site, i am thankful I found you. My dad was dx'd w/ ALS in August but says he couldn't grip his golf clubs correctly two years ago. He is one of 16 children and three of my aunts (his sisters) have passed from ALS already. I see from two sides how this will probably go. I am horrified that my father has this even though given the family history maybe i don't have a right to be surprised. Also, I am a speech pathologist so I see not only the family/caregiver view but also the clinical one. I am grateful that I have some specific skills that can help my dad in addition to being his devoted daughter, but the distance between us (I am 100 miles away) stresses me. Obviously when the time comes I will take a leave from my job to be with him, but my family is really relying on me to be strong and in control and in the dark at night I am petrified as to whether i will be able to keep it together for everyone. my dad has strongly indicated he wants nothing invasive (no tube or vent) and he will stand by his decision, he is a man of strong opinions and convictions and obviously we will respect his decisions, but as this year draws to a close I am both dreading and loving what the next year will bring. What I mean is, this disease takes away so much but at the same time it draws out the wonderful- all the love, care, concern of family members, friends and even strangers really renews my faith in the goodness of this world. I am so thankful that I have found a place to share my thoughts with people who will understand, as not even the therapists I work with have necessarily seen ALS firsthand.
Take care everyone, my thoughts are with you all.
