First indication –

When my twins were but two and a half, I was pursuing a further acting career in voice over because Hollywood doesn’t like women over forty in front of the camera. While in a one on one coaching session, I noticed my mouth involuntarily moving too slowly once or twice. My teacher and I agreed it was probably because I was tired. But it kept happening as the weeks went by. I managed to record a good demo CD, but that career was not to be.

My father is a retired surgeon and my mother was a nurse, so I knew intrinsically that something was not right. I went to a Ear Nose and Throat MD when my mouth began to slur almost daily. After finding no organic structural flaws she gently suggested I consult with a neurologist. In the parking lot after that, my stomach made a fist and my breath came in more shallow as I hung my head. I’m married to a rare patient man in the music business and he comforted me upon returning home that evening.

The neurologist was gracious and kind, as I literally burst into tears when he entered the exam room. All the response tests he gave were fine, even the EEG. But he did want to rule out Multiple Sclerosis (MS) or a brain tumor/lesion, so he scheduled a MRI (magneticresonance imaging) for me. It came up negative for any lesions or tumors! I was joyous, my father and sister were joyous. My life returned to it’s busy normal self as we had two toddlers to raise and contend with. I had a nagging feeling however, and a garbled mouth, aka: disarthria.

Second indication –

Walking along down my residential street heading to the local village area, my left thigh hesitated ever so slightly when it was supposed to return, in it’s stride, up to the forward position. The moving body, in it’s stride is an amazing thing. Heck, any mammal’s body is sheer wonder if we would only stop for a moment and consider it! Seems only during the Olympics or during marathons do we stop to think, to marvel at the human body, the wonderful creation that it is.

But that hesitant thigh/knee was the dire confirmation clinching my dread, my awful suspicion that something was happening to me, my body. About this time, my husband’s music company requested he transfer to NYC, offering a quasi promotion and moving expenses. So we headed there amid speculation on my status, since my neurologist could find nothing on retesting and a second MRI. He only contended that something must be going on, and eventually something would show up on the MRI. How long before I would find myself in a wheelchair, I asked him? Maybe five years or so… I was by this time, an emotional wreck and that neurologist steered me to a psychiatrist for my unstable depression.

Before we moved to NYC area, I had my father arrange a referral for me to a good neurologist. Turned out he found one of the best at a leading hospital, Columbia Presbyterian in upper Manhattan near the Bronx. I went there to try and find a diagnosis. The neurologist specialized in movement disorders and we, my father and I, presumed it was something about that -since my leg was getting stiffer by the day. In fact, after foolishly rushing in the parking lot after a movie, I tripped and fell, breaking my ankle against the hard wood heel of my slip ons. My not so graceful butt came down hard against my ankle, impacting wood. Ouch! Of course I had to have surgery for a plate installation since it was a fragmented break. I felt a little like an automobile in for repairs.

My kids were to enter kindergarten that September, so we found a house in Scarsdale and moved in. My sister visited and she and I went to have the PET scan the new doctor ordered for diagnosis. I had planned the scan appointment around her visit. My husband was working nonstop, but he did accompany me to many of the doctor appointments.

Insult to injury, the PET scan cost $4,200! which my insurance refused to pay. I was still walking at that time, and I remember taking time to amble up a lovely tree lined path with my sister to the scan facility. She and I gazing at each other and rubbing shoulders over and over as if to recognize it was all true. And it was true.. I had MSA, a rare Atypical-Parkinsonian disease. (One can Google the condition to learn about it).
I’ve survived a lot longer than the seven to ten years typical of this, wahoo! and I have a great movement neurologist at UCLA that’s caring for me now that we’ve moved back to SoCalif.

-One doesn’t know what’s next on the journey, so have tolerance for those who are struggling. I’ve changed tremendously since 2000, but change is inevitable. You learn from it and gain humility. Being disabled provides a landscape of perspective where once, there was none.

The Take Aways:

-Appreciate what you have right now.
-Respect your body, what it can do.
-Everyone has some mess in their lives.
-Family is the best support you have.
-It can always be worse.
-Go out into nature for the refreshment of your soul.
-Always hold on to hope.

Heidi Morrell Bio:Heidi Morrell is a former T.V. actress, short film maker and college graduate in English. After having been diagnosed with an atypical movement disorder, MSA, she had to retire from acting and deal with her condition; however, she still and always has written fiction, poetry and essays. Heidi writes a column on disability and other topics, for examiner.com as: ‘LA disability’ examiner, please subscribe: http://www.examiner.com/user-hbmorrell.