It Was As If My Body Was Stiffening Into Bone

By C.F., Orlando, FL
I am a registered nurse and for 30 years I have worked for the same health organization.  In 2002 while I was working as a hospital administrator, I began to fall down while walking.  I developed a pain in my right forearm, I began to lose my sense of smell and my handwriting was losing legibility.  Having been in the field for so long, I knew how to navigate the medical system to get answers to these problems --- or so I thought.

I went first to my orthopedic surgeon thinking I had injured my shoulder during exercise hence the right forearm pain. An MRI of my shoulder revealed no injury.   Next I went to see my internal medicine physician.  He saw nothing wrong and attributed my symptoms to the stresses of my job and home life.

I then consulted in the hallways with several physicians that I had known for many years.  None felt that my symptoms were significant.  I began to fall down with greater frequency.   I then went back to my internal medicine physician and asked for a brain MRI and for a neurology consultation.  He agreed.

The MRI was done and after reviewing it, the neuroradiologist asked how we got from the MRI of my shoulder to an MRI of my brain.  I explained my symptoms and told him I knew something was wrong and that perhaps I had Multiple Sclerosis (MS).  His findings did not indicate MS nor any other disease process.

Then I had to wait two weeks for my neurology consultation.  In the meantime, there were calls between my internist and the neurologist.

The afternoon of my neurology appointment finally arrived, I found myself sitting in a waiting room with patients exhibiting a range of problems from the tremors of Parkinson’s, to the dementia of Alzheimers, to the effects of stroke.   I kept wondering what my fate would be. Then it was my turn.  
The neurologist and I have known each other since he served his residency. That was an advantage as he had a baseline from which to measure these new symptoms.  The visit started with a review of my medical history. When asked what my chief complaint was, I said, “I feel like I am ossifying”.   It was as if my body was stiffening into bone.  After we spoke for a period of time, he said he believed that I had Parkinson’s.  I asked why he thought that.  He said because during the time of our conversation, I had blinked only a few times. He said that is one of the signs of Parkinson’s.

You may wonder why I have written my story for INOD since, in the end, I was diagnosed.  It is because though Parkinson’s is a known disease process, it is not an easy one to diagnose.   There currently are no specific tests, like CT scans or MRI’s that will reveal Parkinson’s.   A form of brain scan referred to as a “PET scan” shows some promise but it is still regarded as experimental.

Diagnosis of Parkinson’s is made more complicated because the symptoms presented by patients with Parkinson’s differ greatly from one person to the next.  To be correctly diagnosed requires finding a very competent specialist.  Otherwise, the condition may go undetected.

The lessons I have learned from my experience are …

• To listen to my intuition regarding my health and illnesses

• To be assertive and persistent

• To be sure I get referrals to competent specialists

• To keep a journal of my symptoms and to be prepared to effectively communicate that informatio to my physician.  

• To prepare a written list of my medications including herbals and over the counter drugs.

• To do my own research and to discuss my findings at my appointment.

• To consider complimentary medicine therapies and when I do, to let my physician know which ones I am engaged in.

THE REST OF THE STORY:   The symptoms of the Parkinson’s progressed and treatment began to require additional medications. The medications caused disruptive tremors and dyskinesias. In 2007, I elected to have brain surgery for deep brain stimulation (DBS) implant on one side of brain to control the tremors on that side. The results were so good; I later chose to get a DBS on the other side also. The latter was done in late 2007 and as of this writing, it promises to be equally successful but some fine tuning of the DBS device is still needed.

Having seen healthcare through the eyes of a healthcare provider.  I was suprised that my healthcare was not as I had inticipated. My experience as a patient was revealing and disappointing.   It is possible that things can be made better for the recipients of healthcare but a great deal of work is going to be needed to make that happen.