By Dan Brooks
In 2005, I began at the age of 50 to have balance problems, changes in articulation, and my eyes were showing signs of struggling to move horizontally. I developed tremors and was unable to drive within eight months of the onset of symptoms. Along with this, my neurologist told me I had Parkinson’s-plus, and it could be either PSP or MSA. Later, he decided on MSA.
In May of 2006, it was necessary for me to retire from my position as a public school administrator, a career that I loved so very much. As time has gone along, I have had a great deal of difficulty with walking, swallowing, breathing, heart rate slowing, blood pressure, eye movement, urination, and digestion. So, the autonomic issues have become of paramount concern.
In January 2020, MSA caused my vocal cords to obstruct my airway, and I nearly died. I was given a tracheostomy and a feeding tube, both of which are now permanent. I look for ways to spend my time with our grandchildren and my musical interests. Life is very confined for me and I’m unable to walk without assistive devices and need a wheelchair when we leave home.
My wife Karrie is a wonderful caregiver and has learned so many methods for caring for me at home, which takes a lot of courage. Her loving efforts keep me from living in a nursing home.
I really appreciate The MSA Coalition and want to express how much it has meant for us to have its friendship and support over the years.