Bobby Murphy’s MSA-C journey
What is multiple system atrophy – cerebellar?
Multiple system atrophy (MSA) is a rare neurological disease that causes certain brain areas to deteriorate. Over time, this disrupts abilities and functions handled by the brain. It causes you to become completely immobile and requires assistance, including feeding, breathing, and toileting. Furthermore, severe cognitive impairment, including dementia-like symptoms, impacts the ability to understand and express oneself. Severe speech impairment and swallowing issues require a feeding tube.
Treatment includes medicines and lifestyle changes to help manage symptoms, but there is NO CURE. The condition gets worse over time and eventually LEADS TO DEATH.
*****We are to the point in Bobby’s journey that he is wheelchair-bound due to constant falls and balance issues. He has a feeding tube due to choking and swallowing issues.
His cognitive issues fluctuate daily (sometimes hourly). He may be able to carry on an intelligent conversation today and not be able to put a complete sentence together tomorrow or lose his train of thought and completely forget what he is talking about. Everyday brings a different and usually new challenge.
I still try to get him out of the house as much as possible so he can still have some quality of life. He does have a bucket list of things that he would like to do, but finances just don’t allow us to fulfill that list. Right now, we are struggling just to keep the necessities for him.
Donations are appreciated but most importantly please add him and our children to your prayer list.
