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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Thursday, July 31, 2008

visit to the specialist

Yesterday John saw a Parkinson's specialist at Medical University of South Carolina, Dr. Bergmann. In our last visit, he said he wanted neuropsychological testing before he saw John again. John had that testing at the end of May, and I was upset when the psychologist presented the results as showing that John was not significantly impaired.

Dr. Bergmann viewed the test results quite differently. He said that a 37 point difference between verbal and performance IQ was not something you would see in normal Parkinson's. He said the block design test is the canary in the coal mine for Lewy Body Disease, and that was John's lowest score. He also thought John's 40th percentile on letter and category fluency was signficant.

He increased John's sinemet (to one 100/25 four times a day) to help his increasing Parkinson's symptoms but told us to be careful about dopamine discontrol syndrome and said that punding is particularly characteristic of Sinemet. He said to John that he needs to understand that one of the symptoms of the disease is lack of insight and that he needs to trust me.

Dr. Bergman didn't increase the Aricept above the 5 mg. John is taking. Dr. Bergman said that Aricept tends to makes the Parkinson's symptoms worse so he keeps the dose low, and that its positive cognitive effect builds up gradually over several months.

2 comments:

Spouse said...

OK, I'll try to catch up after being gone a couple days, then had to spend time on the bookkeeping now the computer is fixed.
I'm worried about your moving plans.
Are you sure that it would be good to make John's quarters in the lower level when the kitchen, etc is above??? I fear that you will soon tire of the constant up & down, once he becomes more disabled. At this point, We are in a one story home, and I am starting to use my laptop in the living room
so that when GW wakes from napping in his recliner, I can assist him in standing, as it is becoming more difficult for him to do alone(My office is down a long hallway).
There are times when he cannot remember which way to turn to find the bathroom. We have lived in this house since 1968 except for 14 years in the middle, but have been back 5 years now. Some times he cannot find things that are right in front of him. I'm glad I don't have to run up or down stairs each time he needs assistance.
I did have to put another TP holder in front of the toilet area where it is easier than on the side wall a bit to the rear. He needs armchairs to sit--This includes the toilet--We now use a portable commode with arms and a raised seat over the permanent toilet. It has become difficult for him to travel to our kids homes because the bathroom facilities are not easy to use. Even our own summer cabin requires the use of a transfer bench to get into the tub-shower combo, but he does not understand the principle of- sit down, place one leg over the tub, turn, bring the other leg over the tub.Then there is the fight with the shower curtain to make it fit over the chair,but keep water in the tub,and the hand held shower need to be aimed correctly also. We have both gotten so frustrated by this that I have decided that we cannot stay at the cabin more than 2 nights-no need to shower !!! What we take for granted as just an everyday movement is becoming very difficult for him. Grab bars are very necessary - the walker helps too. They are very expensive at the plumbing stores, reasonably priced at the Home Depot,or regular hardware stores. I've been looking at the ads for the walk in,sit down, and close the door tubs- need to talk to anyone that has tried it.
GW could not go with me this weekend to attend my 50th class reunion -we needed to stay at my parents home -their guest quarters is up narrow stairs with no handrails. He did well under our daughter's care. 1st time I had been away over nite for 6 years. I was quite surprised the day after I had come home when he asked me, When is Di coming home ?
Talk to lots of people working with similar handicaps before you make your remodel choices--
Di

Pam said...

Spouse: You are right that there there is something odd about my two level house plan. It is really about me being desperate to have a separate life from John. I realize I may end up having to spend my time downstairs with him, but I feel it would still reassure me to have a part of the house that sympolized my separate life. Since I expect to keep working outside the home, I'm also thinking that a separate space for him will work particularly well when we have a sitter with him.

My daughter asked me where I want to be when John is no longer at home. I said definitely the other house, not our current house. She said then do it.