LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Tuesday, November 4, 2008

Parkinson's specialist

The Movement Disorder Specialist we saw in Charleston has moved to Washington DC to work for the FDA, so John's local neurologist recommended a specialist in Atlanta, which is a lot closer. We saw him yesterday and were not happy with him.

It was an interesting experience for me because the doctor was taking the approach that John's Parkinsonism was mild and he didn't yet show all the signs of Lewy Body Dementia. John's response was to argue with the doctor that he is more impaired than the doctor realized (John had been working on his Social Security Disability appeal so he had been thinking in those terms). For me, having John acknowledge what I'm finding hard outweighed having the doctor ignore it. The doctor just didn't seem to be interested in subjective experience, only in the measurable symptoms. He made a big deal of how smart John was (having read the neuropsych testing report from May) as if he didn't expect to see Parkinson's patients who are smart. I finally said if John was 80 we would think he was doing great but this isn't what we expected at 63.

At the beginning of the appointment a nurse took John's vital signs and medication information and then sent him back to the waiting room. The doctor himself came out to the waiting room to get John and introduced himself to John. But the odd thing was that the doctor didn't acknowledge my existence when I got up and walked with John. Initially when he asked John questions I didn't speak up because I thought it important for him to see where John got confused. But he never did ask me for my perspective, though I did start giving it anyway.

4 comments:

Anonymous said...

I would love to know who the neurologist was as he/she is certainly not what I am looking for for my husband who I suspect has Parkinson's. Have you found a neurologist in Atlanta who is a Parkinson's specialist and that you like? As an RN myself, I would understand if you would not want to share the name of the first neurologist, but if you have found another one, please let me know.

Pam said...

We gave up on Atlanta (which is closer for us) and went back to the movement disorder group at Medical University of South Carolina, where we saw Dr. Hinson in August. If you want to email me at pam55sc at gmail dot com, I will give you the name of the doctor in Atlanta we didn't find helpful.

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