Sitting with company and having to smack your foot or hold onto your arm. The movie ends and there you are, trying to get up but cannot as your foot seems to be glued to the floor. Feeling a sudden wave of fatigue, a fog which overtakes you. Tripping over a small rise in the sidewalk or temporary block. Trying to button a shirt or close a zipper. Swallowing suddenly seems to be impossible.
What is all that? They are all events in the life of a Parkinson victim. Suddenly, the small steps of life about which people think little or never at all, these steps grow to gargantuan proportions in the struggles of life. And one feels alone. One feels as if the eyes of all around are glued to you, their faces reflecting distaste, confusion and worst of all, pity. That last is the worst. And that feeling of loneliness is right there, overcoming all else.
Well, last night so many of us and our loved ones found we are not alone. Over a million people in the US alone have Parkinson. There are some very special and brilliant and dedicated people trying to not only find medicines which alleviate symptoms, but even more important, are trying to find a cure. Yes, a cure. The thought of it sparks hope within one's soul. Will it be on time for you? For one you know who is undegoing the torments of Parkinson? Will the continued degeneration be able to be halted right in its track?
And a packed, not one seat left, auditorium in Scripps Research, reassured us we were not alone. So many had Parkinson. So many were the loved ones who would be and are the caretakers. And so many were the dedicated people, those who volunteered; those who spend their days in labs trying to dicover hope; those who worked with us in therapy and exercise, understanding its importance. And we were not alone. So together we all exercised. Together we all shouted, as one, loud and clear, that we were ready to fight, to fight Parkinson disease with all that we had within us.
I was overwhelmed. I knew there were many of us as I see them every therapy session and we share the laughter and the tears, the joys of our everyday life, the struggles and the triumphs and we laugh together, we lean on each other and remind each other that our lives continue. However, to see all this in such large numbers, to see others trying to move their feet in order to stand, to know that there was and is help, that one is not alone - well, there is nothing better than that and it gives one the courage to continue the fight.
This month is Parkinson Awareness Month. Listen to what is said and shown. Learn that a victim is not really a victim. Learn that dementia is not synonymous with Parkinson. Learn that we are not hopeless and helpless, that we adjust, that while we might be somewhat frightened at the future and what it holds, we are also hopeful and determined to keep that future the best we can. We will fight. And we will not be alone.
What can you do? You can have patience with the person who has to walk slower than you. It is not laziness. You can have patience with the slow speech and do not read mental disease into that for it is just the deterioration of a muscle. Do not stare as a person, a grown person, picks carefully at the food on his plate, and chews for a long time. You can donate, for funds are always needed in order to keep the forward momentum. And you can insure that the Parkinson sufferer has company, is invited to join in socially, for social life is important - and to also understand that sometimes it is just impossible for the fatigue is just too much at that point.
Join with us in laughter and life. Have patience with a rigidity in body, for our souls and our minds are not. Understand that we live life, that most of the time we do not spend our energy on feeling sorry for ourselves, depressed to the nth degree. NO! For that is not us, especially as we realize we are not alone. And the comraderie is special.
Come join us in the fight against this disease and other neurological degenerative diseases. We can beat them all if we realize that we are not alone and should never feel alone. No human being should ever feel that way.
No, I am not alone. No, we are not alone.
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