Unexplained Words From Doctors Can Lead To The Wrong Conclusions

A friend of mine recently had an appointment with her neurologist. She had been diagnosed with Parkinson’s for many years and her appointment was for routine follow up. Just another three month checkup.

Words without explanation

As Parkinson’s for most of us progresses slowly, a routine visit is not a cause for high or low expectations. Drug discussion, routine tests, questions asked and usually answered, and you are out of there with another appointment scheduled in X months time. Not so for this appointment.

The neurologist, in ending the appointment, said four things:

• He would not be seeing her again as there was nothing else he could do for her.
• He was changing her diagnosis to MSA Parkinson’s.
• He was recommending palliative care.
• Good bye.

My friend was so stunned by #1 that she didn’t really process anything else until she was out the door.

One can make excuses for the neurologist for not offering explanations: it was his next to last appointment. his day was running way behind, he may have made an incorrect assumption about his patient’s knowledge of certain terms, or one might blame my friend for not immediately asking questions.

In any case, my friend went home and began trying to find out what was going on.

MSA Parkinson’s

According to the Mayo Clinic, “Multiple system atrophy (MSA) is a rare, degenerative neurological disorder affecting your body's involuntary (autonomic) functions, including blood pressure, breathing, bladder function and motor control……..MSA shares many Parkinson's disease-like symptoms, such as slow movement, rigid muscles and poor balance…..but there is no cure. The condition progresses gradually and eventually leads to death.”¹

Not the words you want to read by yourself with no explanation. After more than a decade with a Parkinson’s diagnosis and suddenly your quality of life is going to worsen and your remaining life span is going to be shorter than you thought.

Palliative care

Palliative care to most of us is inextricably linked with hospice care and one’s mind immediately jumps to dying. That’s what my friends mind went to.
Actually, palliative care’s definition is, “Palliative care is a resource for anyone living with a serious illness, such as heart failure, chronic obstructive pulmonary disease, cancer, dementia, Parkinson's disease, and many others. Palliative care can be helpful at any stage of illness and is best provided soon after a person is diagnosed. In addition to improving quality of life and helping with symptoms, palliative care can help patients understand their choices for medical treatment. The organized services available through palliative care may be helpful to any older person having a lot of general discomfort and disability very late in life.” ²

My friend had to wait a month and a half to have her first appointment with the palliative care neurologist and his team only to be told that her diagnosis change was ten years later than most and the average longevity in her particular case was about the same as a person with regular Parkinson’s. Lessons that might be applicable from my friend’s experience: Always take someone with you to appointments to make sure your questions are answered. If a medical professional uses terms you don’t understand or recommends a treatment you don’t understand, ASK QUESTIONS!