My intention is not to be preachy- I just want to share some of my experiences with you.
Some of you know me- I'm Karin (Bolette) and have had Bulbar ALS for a little over 2 years. I have tied up most of my loose ends and am now trying to live each day doing what I love, which are many things. I also thank God for giving me each day because I know at any time I may die; from ALS, from crossing the street, from the onset of another disease. So we live well while we can.
I did palliative care in the community for 20 years and cared for clients suffering from all different cancers, neurological problems, strokes, MS, FD and various forms of it, the list goes on and on, and yes of course ALS. I know exactly what is coming down the road for me and I know that when my time comes I will be ready to move on. I will have done what I can while I could. Anything that I can't do I only hope that my friends and family will forgive me. Every person who I have spent time with in the last few days of their life, reguardless of the disease process have been ready to go. Even when they fight till the end- they accept their final breath and move on.
I have read on this site how horrible a disease ALS is. Yes it is, I have now seen it from both sides; but I've not known one single terminal disease that is not horrible and does not make one loose they sense of diginity and independence; and that does not end in a difficult death. Just as birth is tramatic so is death and we can not avoid either.
I think what we are really afraid of is that our prognosis gives us a time frame in which we may die. Our first reaction is fear and a feeling that our lives are being taken from us; and a sense that we will not do what we want before the end comes.
I have always hoped that I would not have to live for years following a severe stroke; being unable to speak, move my body, feed myself, wear diapers and not recognize the one's I love even if in my mind I know them. To live like that for 10-15 years to me would be hell. At lease I am given the time, albeit not much time, but time none the less to live while I can.
To those of you who do not have ALS move on. Be grateful that your symptoms are not ALS, but none of us can ran from our evididable death. Maybe I'll end up with breast cancer before I die of ALS- in life anything is possible. So live for the day and do what you can- Blessings to all Karin