In my professional career, that of a trial lawyer, I learned
a lot of medicine. Particularly in the ten years I was National Counsel for
third largest chemical company in the world. It was in that period that I had a
Doctor with certification in the field of Industrial Medicine who was assigned
to give me 100% of his time. He was charged with teaching me the medicine of
each case we handled, researching the medical issues of each case and
connecting me with the top specialists in each field of medicine to help and to
testify on the medical issues raised in the case.
We travelled together from state to state, case to case, and
had a lot of time to discuss medicine. I took advantage of the source and
learned all I could. It was this background and training and the balance of my
43 years of practice with which I came to this new world of Alzheimer’s Disease
(AD).
When I arrived I was appalled by the confusion in definition
of AD, the explanation of what it was that I had. Definition was all over the
board, supported by the biases of the person having an opinion and giving a
definition. It also seemed loaded with hidden agendas.
I did the usual thing I did then and continue doing now. I
totally immersed myself in the field participating in every way I could. When
first diagnosed my wife Diane made contact with our local Alzheimer’s Chapter. As
follow up I met with an officer who had recently been appointed and charged
with organizing their outreach program.
Starting there I was put in contact with other’s carrying
the same diagnosis as mine. Soon I was participating in a meeting given to
investigating ways and means of helping people diagnosed in the early stages of
the disease. Most of the social service groups in our metro area wishing to provide
services for us were in attendance. Those of us with AD were there as the real live
specimens.
We learned a lot. Out of those meetings I met 3 other guys
with AD who participated. We started to pal around together and formed a
support group of the four of us and our wives our caretakers. Three of us were
ex-lawyers, the fourth an officer with an international construction company. Above is a picture of us showing the "Three Amigos." First is Jerry, second Earl, I am on the right. At that time our number dwindled to 3 Alan, the fourth having deteriorated very quickly and had to enter a Nursing Home. His disease had the genetic component which in his case produced a whirlwind of deterioration. The others of us are going more slowly.
We were contacted by a representative of a group who did Day
Care Programs. She met us at the meetings held at Alz.Assoc. The particular Day
Care Program was conducted at Oak Knoll Lutheran Church in Minnetonka. It was
known as the Gathering. It was operated by a Lutheran Group formed by congregations
in the metro area. We were told it would suit us well, geared to Early Stage folks.
We became involved and found it was no more than a baby-sitting service.
Not given to sitting back we objected and started meeting
with the director. I was one; the construction guy was the other. Our point of
objection was the operation was geared to mid and late stage AD, not to those
of us in early stage. For us sitting in a chair doing exercises, watching
reruns of “I Love Lucy” having one of the volunteers go through the morning
paper explaining the news articles and a variety of other infantile activities were
boring and insulting. They were not consistent with the program as represented
to us when we were asked to join.
The director had us meet with all of the volunteers to
discuss our concerns. I am pleased to say they all heard us and started to
modify the program. They also invited us to join in the program planning which
we have done enthusiastically.
That was more than three years ago. Now the program is
excellent and every one of us looks forward to attending every other week as it
is scheduled. There is plenty of activity involved in the meetings, that
include field trips, one of our favorites is going in group to a program called
“Feed our Starving Children” which prepares and packages food for starving
children in Africa. We go there and spend a half a day packaging the dried food
for shipment.
We are offered the opportunity to conduct programs as well.
I am actively involved doing computer art. Jerry, the construction guy, and I
put together a program demonstrating doing art on computer with Photo Elements,
an easier form of Photo Shop. We arranged computers for everyone and we went to
work as artists.
One of the volunteers is an active graphic artist. He often
leads us in activities in the graphic arts. We have 4 year olds from the day
care program conducted by Oak Knoll come in every time we gather and spend an
hour with us. Each child brings a craft. We work one on one helping them
complete the craft project.
We
have grown to love these kids. Last Christmas we put on a Christmas party for
them. We had games, a little gift exchange, trimmed a little Christmas Tree and
I gave each of them a copy of my children’s story entitled “How Philip the
Firefly Saved Christmas” which was also read to them at the party. For anyone
interested the book is available on amazon.com, click on How
Philip the Firefly Saved Christmas to go to Amazon to look at it.
For May Day we put
together a program for the kids making May Baskets. We put together a simple paper
cup, silk flower and pipe cleaner kit for each of the kids and they made this:
Jerry built a May
Pole and we conducted a May Pole dance with the kids:
My purpose in detailing the Gathering is this: It fits our
needs so well. It came from our involvement in working within the system to
help ourselves and getting the system to help us. In the five years I have been
involved in AD World I have seen many changes for the better. Nonetheless there
is so much in which they are missing so many good things that can and need be
done.
This introduces the next phase of my topic. That is the
history of what has not been done and the confusion I have for one person as to
why this happens to be.
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