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.


Sunday, October 30, 2011


I'm not posting much, but what posting I am doing is now back on my original blog at: http://deeplanguage.blogspot.com/

Thursday, March 18, 2010

A Poem

By my cousin Patti Carey, struggling with cancer in her 30s:

Let It Go

Let go of the ways you thought life would unfold;
The holding of plans or dreams or expectations –Let it all go.
Save your strength to swim with the tide.
The choice to fight what is here before you now.
Will only result in struggle, fear and desperate attempts to flee
From the very energy you long for. Let it go.

Let it all go and flow with the GRACE
that washed through your days
whether you receive it gently
or with all your quills raised to defend against invaders.
Take this on faith: The mind may never find the explanations that it seeks,
but you will move forward nonetheless.

Let go, and the wave’s crest
will carry you to unknown shores,beyond your wildest dreams or destinations.
Let it all go and find the place of rest
and peace, and certain

Wednesday, February 24, 2010

Two years

It is about two years now since we realized John had Parkinson's disease. He was diagnosed as soon as we saw his family practitioner and sent to a neurologist and then to the Movement Disorder Specialist who said Lewy Body Dementia.

John is doing better than I had expected. Our son, who isn't very observant, said he thought John hadn't changed significantly in those two years. The changes I see are that John is slower and gets confused more easily. But he is still taking care of himself except for wanting help putting on his socks and he still doesn't have hallucinations. He did a driving evaluation with the occupational therapist at the rehab hospital and passed. I think our new renovated house has improved our lives--he can deal with his sleep issues by watching tv or listening to books on tape in bed or sleep on his back and snore. We have a caregiver/cleaning person twice a week who does her best to keep his chaos under control. I'm happier anyway now that I have my own peaceful space.

He is in somewhat more denial about the cognitive issues, but he admitted recently he can't handle financial matters and the like when he asked for my help with a situation where he has been dropping the ball for years--serving as executor of the estate for some people who were important to him when he was young. I thought he had withdrawn a year or so ago but it turns out he didn't. I will play the illness card on that one--tell them he has early dementia and doesn't like to admit it. We also have arranged for an accountant to help aunt Florence with her finances so she doesn't keep asking John for help.

John and I talked a little about how he is doing better than I expected after two years. He wondered how much of it is due to his taking coconut oil and MCT oil? No way of knowing. He does have impaired glucose tolerance, so if some dementia is a kind of diabetes in the brain he is likely to be in that group. And that is what the oils are supposed to address by providing ketones as an alternative fuel for the brain.

We saw John's neurologist yesterday and the doctor was pleased with John's muscle tone. John is working with a better physical therapist and she has even motivated him to do some exercising on his own. He has even gone out for a walk a couple of times in the last few weeks. I just wish he didn't have such a tendency to decide to go for a walk or to go see his aunt Florence at dinner time.

Wednesday, January 27, 2010

fairly stable

We are now pretty well settled in the renovated house. We have a woman who comes twice a week and cleans, does John's laundry, and straightens up his area. He doesn't like it when she tries to organize his things but he doesn't get around to doing it himself. I tried to suggest that when he can't do things himself he needs to accept someone else doing it not exactly his way, but he doesn't buy that.

He will let her help him with some things like putting on his socks. I tried to push him that he needs to shower more than once a week but his answer was that putting on his socks was too difficult. Sigh.

Today he went out for a walk for the first time in months and called me to come get him because he had been too ambitious (he went nearly two miles). It would be good new if he would get back to exercising. He has a physical therapist he likes and now goes there twice a week. Maybe she has finally found the trick to get him to make the effort to exercise.

He did a driving evaluation with an occupational therapist at the rehab hospital and he passed. It worries me that he came home exhausted by the effort because he had to change his usual habits for the evaluation (for example staying under the speed limit). But so long as he has no hallucinations and does this three hour driving evaluation once a year I won't fight it. Despite how slow he has become his reaction time tested as good.

Tuesday, December 22, 2009

I miss having someone to share the work

Yesterday I went with John to the urologist, who again recommended more surgery for his benign prostate enlargement (or the scar tissue from the first surgery). They did say they could do it without general anaesthesia. John wants to try a dilation procedure first, but if that doesn't last very long he wants to find a high-ranked doctor farther away. Sigh.

I'm wishing for help with Christmas. Our daughter and I went and got a tree today and I got it up, but no one has offered to help with decorating it so it isn't decorated. John hasn't been feeling well this afternoon/evening, so I shouldn't complain about today specifically. But more generally, Christmas is too much work to be trying to do mostly on my own. I'm ok with cooking a traditional meal even if I have to do most of the cleaning up too. But even if my daughter will help me some with decorating, having to do the cleaning up makes the decorating seem too hard. I need to think about what I would want in a simpler Christmas.

Tuesday, December 15, 2009


This week our focus is on moving John's aunt's things out of her assisted living apartment, as she has moved permanently to the nursing home at her retirement community. We have one helper who is very good at sorting through things and making decisions. John is not so good at that but he did arrange several people to pick up things.

I've been trying to set up an alternative for our son, who is in his first semester of college and flunking out. I wanted to make sure he had another choice and doesn't have to stay home and deal with his father's illness unless he chooses to. And today I heard the good news that he is accepted to what was originally his second choice college for the spring. I'm hoping he has had enough time to learn his lesson, but I think a fresh start will be a relief for him.

John was complaining yesterday that I don't tell him things. Actually, I make a pretty good effort to keep him informed. Sometimes he forgets, sometimes I don't tell him because I don't want to spend the time and answer his questions and have him second-guess me, and sometimes I don't tell him because of my resentment that he doesn't share the burdens more. He said he thinks I am angry at him for getting sick. I said I am angry at what has happened to my life but he is just going to have to live with my strengths and weaknesses. I'm good at working things out practically, but I'm sometimes going to be impatient or irritated.

Friday, December 11, 2009

interesting study

This isn't information I need yet, but it is so clear I thought it worth linking:

Clozapine is the only antipsychotic shown to be efficacious for the treatment of PD psychosis, although quetiapine is more frequently used because of convenience. Concerns about antipsychotic sensitivity in DLB patients may prevent antipsychotics from being tested further in this population. There is also preliminary evidence that cholinesterase inhibitors may have antipsychotic properties in both PD with dementia and DLB.

source: "Presentation and Management of Psychosis in Parkinson’s Disease and Dementia With Lewy Bodies," Daniel Weintraub, M.D., and Howard I. Hurtig, M.D. Am J Psychiatry 164:1491-1498, October 2007 http://ajp.psychiatryonline.org/cgi/reprint/164/10/1491

Wednesday, December 2, 2009

end of my rope

Moving was hell. We had two particularly intense two day periods, when the professional movers came and when some people with pickup trucks helped us finish clearing out the old house. Then I pushed to get as much unpacked as possible before Thanksgiving. I thought things were settling down now, or at least I could focus on my job, but now John's aunt who lives in our town has to move from assisted living to the associated nursing home. Clearing out her crammed apartment is going to be a nightmare.

Right now I need to go check on her. They didn't have a room ready for her in the nursing home until today so I had to arrange round the clock care for her. John was coping with helping her until the bad news came, but then last night he said he couldn't bear to go back.