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.


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 I thought he had withdrawn a year or so ago but it turns out he didn't. I will play the illness card on that one--tell them he has early dementia and doesn't like to admit it.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.