First entry
I am still new to the forum and hope that I am learning to use it correctly.
My eyesight is not the best although I have new prescription glasses. So , please accept my apologies in advance for the large type.
My husband had ALS diagnosed in 1999 and died in 2012 , for anyone unfamiliar with it , It is 100% fatal no treatment exists to stop it. ALS robs the body fairly rapidly of any and all movement, including breathing and speech, but the mind stays intact.
My husband had what is called bulbar onset and lost his speech completely , but continued to communicate through various ways with a speech computer and when it wasn't available blinking the alphabet. In 2002 he went on ventilator and feeding tube. I learned how to take care of it all for years With 2 hours at a time of hired caregivers twice daily.
I guess what I am saying is that to me with,ALS you grieve every loss and by the time you somewhat adapt to that your hit with another one. My husband grieved every loss and so did I.
I miss him dearly always will. I still cry every now and then when I think of him. But , sometimes I can smile.
Today as I am writing this I am having problems holding back the tears .
So , I think that is enough of an entry today. Lisa
My eyesight is not the best although I have new prescription glasses. So , please accept my apologies in advance for the large type.
My husband had ALS diagnosed in 1999 and died in 2012 , for anyone unfamiliar with it , It is 100% fatal no treatment exists to stop it. ALS robs the body fairly rapidly of any and all movement, including breathing and speech, but the mind stays intact.
My husband had what is called bulbar onset and lost his speech completely , but continued to communicate through various ways with a speech computer and when it wasn't available blinking the alphabet. In 2002 he went on ventilator and feeding tube. I learned how to take care of it all for years With 2 hours at a time of hired caregivers twice daily.
I guess what I am saying is that to me with,ALS you grieve every loss and by the time you somewhat adapt to that your hit with another one. My husband grieved every loss and so did I.
I miss him dearly always will. I still cry every now and then when I think of him. But , sometimes I can smile.
Today as I am writing this I am having problems holding back the tears .
So , I think that is enough of an entry today. Lisa
Replies
Lisa, I am so very sorry for your loss! you have come to the right place for love, compassion and understanding. These people get it! Huge hugs, Michele
Michele, thank - you ..Lisa
Hi dear Lisa,
I really appreciated your journal...you and you husband endured so much during the last 13 years. ALS is a devastating disease. You are an inspiration to all around you. I understand the toll a disease like that takes it\'s toll bit by bit and every stage is a loss for you. A grieving time.
Now, you are grieving the final loss and it\'s unbearable. I am so sorry.
I empathize with all my heart.
Sending you thoughts of love and hope during this trying time,
Sandra
Sandra,
Thank- you for your kindness .