Today Starts a Documentation of Our Lives with Shy Dragers (MSA)

I hope that as we develop this page that we are able to comfort one another, share our experiences and shed light on such a rare disease.  It seems as this disease progresses and many syndromes appear, there is less and less time that is spent outside the home and so many past friends just fall away.  I don't understand, in such a time of need and support, why we as humans tend to ignore what makes us uncomfortable.  Isolation is the worst thing that can happen to a terminally ill person.  They have no hope when there is no cure and so little is known about the disease.  Support would be wonderful, a person to say they will stop by once a week or month or something just to chat.  An occurrence in the MSA person's life to give them to look forward to, a purpose for trying to get up and do what they can in preparation.  Instead, the text messages stop, the phone is silent, the social networks lay dormant for the person that once was so vital and gave so much of herself to others.  Why is this?  Why does she have to feel so alone?  I can not even imagine how it must feel to know you will die, not knowing how or which things will fail to cause it and then to add isolation to that fact.  My heart breaks every day even in my stress and emotional exhaustion.  I rarely see my own family and I struggle hard through school because my mind and free time is always with Sam.  Her children, her husband, myself, try so hard to make her life as full as it can be right now so that when the time does come, there is no stone unturned nor any item in her bucket list undone.  As this is written, it is a quick few moments between visiting my family and school work then back to the hospital where we had to leave her late last night after a suspected fifth stroke with her arch nemesis kidney infection also raging....the battle goes on.  My day will be spent at the hospital while her young adult kids take a much needed weekend away with their father and her husband works hard, even though retired already, in his own business to be able to pay the hospital bills and her 14 medications she must take daily.  I wish some one else would take the time to bring a little sunshine into her world as she did for so many years to yours.....