Hello Gerald,
When my husband and I found out he had als we were both shocked and very frightened. We sat in front of the doctor and listened to his words. He spoke quietly and then handed us a pamphlet and said he would see us in three months to see how my husband was doing and that if we had any questions he would answer them for us. He said please call the number on the paper and they would be there for support. We left his office with tears in our eyes that would fill a bucket. I could barely see in front of me. My loved one was shaking, we held each other in the elevator. We left the hospital and went to our car not knowing where we go from here.
ALS, ALS, ALS, those three letters would not leave my brain, they got louder every second. I looked at my husband and said do you feel the way I do? Empty, scared, lonely, isolated. We just got handed this horrible news and now the doctor is on his way home to live his life and we are sitting here feeling lost and alone.
I truly believe there should have been more support that day. I believe that there should be people there to comfort those who have recieved this kind of news. Not a piece of paper saying what this is and who to call.
It took us a while before we could reach someone for support and at that time a manual was given to us to read. I picked it up, looked at it briefly and put it away and never again opened it till recently, after almost one year. The fear it brought was to much. Where is the hope in this manual? It is a journey they say, I am sorry this is not a journey to me. My husband and I searched for support and found very little. It was like being on an island. What do we do? I have to say this site gave us hope. Here the people are caring and very supportive but as far as other help it is very hard to find.
I believe there should be ongoing care and support, not just every three months. They should be giving hope. There needs to be more compassion. The symptoms of als are not the only thing that needs to be looked at, behind the symptoms is a human being with feelings. Those feelings are just as important. . Give patients hope, fight the fight with them and help others feel that the disease can be cured some day.
sandy.