Watch what you wish for...

I know most if not all of you have heard the expression - "Watch what you wish for. You just might get it" (or similar). I can attest this is true.

During the time my wife and I have been dealing with this disease, I have often commented on the lack of interaction and contact between people dealing with it. With an estimated 4.6 people per 100,000 population, that does not give a large group to interact with. My wife and I are yet to meet in person  another patient with MSA, except for a MSA national conference and support meeting we went to a few years ago. This was in Tennessee (we live in N.C.), "promoted" nationally, and even at this event there were only ten or twelve patients.

Through this blog, my other "all purpose blog", facebook, and the various forums on MSA support and awareness pages; I have made contact and "met" eight or nine patients or caregivers of patients with MSA over the past six months or so. It has been great to communicate, even distantly, with people that can share and understand exactly what you are going through.

Now for the downside and the reason for the title of this disease. In the six months or so I have "known" these people, two of the people afflicted with this terrible disease have succumbed to it.
The contact I was wishing for (and enjoyed when it occurred) becomes itself a reminder of how insidious and relentless this damned disease is. One fourth of the people I have "met" that have this disease have died within six months of our first contact!

Damn I hate this disease. Bless everyone that is suffering from it - patients, family, and friends - even those that only meet like this.