I have a husband with
Parkinson’s and a 20 year old son with similar executive function issues but no
symptoms of Parkinson’s. Both also have extremely poor sense of smell and problems with constipation. I keep looking for some connection that would explain both of their issues
My husband was
diagnosed in 2008 with Atypical Parkinson’s/Lewy Body Dementia (both
started at about the same time but the physical issues are progressing faster
than the mental). There is a study in which
48% of people with LBD had symptoms of ADHD in their youth, compared to 15% of the control and 15% of the group with
Alzheimer's. This is an
issue I am interested in as the transition from my husband’s lifelong cognitive
pattern, which we understood as a variant of Attention Deficit Disorder, to Atypical Parkinson's
was so gradual and so much just more of the same. Now it is further complicated because my husband's diagnosis was changed in 2012 from Lewy Body Dementia to Multiple System Atrophy, a different form of Atypical Parkinson's.
Our son has similar ADHD with particularly
significant executive function issues and shows so much the same pattern as my
husband. Dr. Kenneth Bergmann originally
evaluated John at Medical University of South Carolina. He looked
at John’s initial neuropsych report and said “that’s not normal, that’s not
even normal Parkinson’s” to have a verbal IQ 37 points higher than performance
IQ. He saw that as one of several clear signs that John was on the path
to Lewy Body Dementia. But a year later our son Paul had a learning
disability evaluation before he started college, and his verbal IQ tested 26
points higher than his performance IQ. We kept saying that to Dr. Bergman
(who has since moved away to Washington) and he kept saying that it was
just that John must have had mild DLB symptoms going back many years.
That’s the standard answer I get from researchers on DLB. But it doesn’t
fit my experience--John has always been this way, it just got worse.
I have found two genetic illnesses that involve ADHD when young and
Parkinson's when older--subclinical Fragile X and Gaucher's disease
carriers. Fragile X would not link father and son and my son has been tested and does not have a high number of repeats. My husband has been tested and does not have the most common genetic defect leading to Gaucher's, but there is research showing its link to Parkinson's and LBD.
Sunday, December 09, 2012
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