THE BLOG
04/07/2014 02:50 pm ET Updated Jun 07, 2014

Fighting a Rare Illness, Finding Community on Facebook

There it was, a request on the Multiple System Atrophy Coalition's Facebook page noting if a caregiver or patient wrote about MSA that the blog post might be published in The Huffington Post. It was early Monday morning, and it was my wife, the beautiful 59-year-old woman with MSA, who pointed the post out. She then began scrolling down the page and suddenly exclaimed, "Here's a post from a Teri S., and a picture. It says 'Al passed away this morning at 8:30 to be with his Lord. Another MSA angel has gone to heaven.'"

Colleen -- that's my wife -- came to Facebook late. She was diagnosed with Multiple System Atrophy Type C (for Cerebellar) in March of 2013 after five years of falls, infections and increasing problems with continence. She learned on that cold March day the disease she has takes away the autonomic nervous system, the part of the body that regulates our bodily functions, and lifespan from onset of disease is approximately 6.3 years. No known cause, no known cure the doctor said, meaning this disease is a death sentence without an execution date.

"Are you posting a comment? Let her know our thoughts and prayers are with her."

As she started to type the message she began crying. "I can't go through this. I just can't do it, Larry. Look at him (there is a picture of Al accompanying the post, laying in a classic position for an MSA patient). I don't want to end up like that." More sobs, coming almost uncontrollably now.

As she cries she reads the comment that was just below the initial post. "Al was so lucky to have you. No sister ever cared more for her brother, gave more time or more of herself. He was well taken care of because of you. Thank you so much for that."

"I can't keep putting you through this." She continues sobbing. "Think what you'll be like when I die. I can't do this anymore. Please don't make me do it."

I get up and walk behind her and hug her around the neck and kiss her head. "Honey, you make so many other people stronger you can't be going there. Think of our son, our daughter-in-law and our grandchildren. Your Angel and all her friends love you and think about the strength you show them every day. You can't just give up."

This woman has been a fighter. In the 15 years we've been married, she has had a neurodegenerative disease for 14 of those years, going from one that just causes pain to one that just causes death. She has done so much with what she was given and she inspires her husband every day. "Honey, we're in this together and you don't worry about what will happen to me. There are friends who'll help me and you know the children and grandkids will help."

Finally she begins to regain her composure. She finishes the post and then comes up with her final wish. "Why can't I have cancer. At least it takes you quickly. This disease just takes a little at a time. You don't see it but I do. Little minute changes in things I can do. I don't want to do this anymore. Please understand." More sobs and more hugs, and then, mentally exhausted, Colleen shuffles slowly to the bedroom to nap and recover some of the energy she just expended.

Only that isn't what happens. When she arises she'll still need help getting out of bed. She'll need her husband to rub and shake her legs to relieve the stiffness so she can shuffle with her walker to the bathroom. When finished she'll shuffle to the living room or kitchen, swaying at each step and plopping into the seat once she gets to her destination. Then she'll get her tablet and once again start checking out her Facebook page. There's another story to read, another comment to make, another person to cheer up. I told you she is strong!

The Multiple System Atrophy Coalition is a national 501c3 dedicated to finding a cure for MSA, a rare and fatal neurodegenerative disorder affecting approximately 50,000 Americans.