Caregivers,
 
Just wanted to add my two cents to this question that is asked so often
of caregivers..
I am sending this to both lists.
 
I have been responding to this question for twenty years.
 
Early on it was easy, just like Janet Reno's press conference. ", Oh,
she is doing fine she is taking some mdications that are really helping
her and her spirits are quite good."  ( I did not share any of the long
term probibilities as that I had just finished reading about in books
like Dr. Duvoisin's).
 
Year 5. "Looks like we will have to give up tennis soon. Drugs are
still doing a good job but new side effects are surfacing. The furue
doesn't look very promising.
 
Year 10. "Nancy is strugggling. We have had to give up a lot of things
such as golf and most social events. She is often depressed. The kids
have been great (now 16 and 18). Nancy really perks up when their
friends come over or when Laura comes back from college for a weekend.
 
Year 13. Life has become difficult. It is like a giant rollercoaster
ride. Every one to three hours we cycle through periods of partail
paralysis with resting tremor, relatively normal body movements with
some limitations and then wild uncontrolled movements, caused by the
medications, called dyskinesia. We have been through some severe bouts
of depression and it has hit me as well. There is a new surgical
procedure called adrenal transplant and we are getting desperate and
plan to look into it. The University of Texas is going to do about a
dozen and we hope to be among them.
 
Year 14, Same as year 13 except we had the transplant and it appears to
have failed. The good news is that no injury occured. All testing
reveals no loss of any cognitive abilities and some minor improvement
in motor skills. The program has been discontinued.
 
Year 16. We have joined a local support group. Nancy is secretary. We
now have close to 20 people who are sharing their years of suffering
and how they have coped. It is really helping Nancy and me. We have
attended several excellent presentatons by doctors, social workers, and
a variety of therapists. Nancy continues on the dangerous roller coater
ride but we are learning how to constantly adjust her meds to get the
most out of each day. We now have a walker and wheel chair and use it
as needed.
 
Year 18. Have discovered the internet and a new source of insight.
There was a raging debate in progress about a new surgical procedure
called a pallidotomy. Nancy has joined a Parkinson's only golf group.
She goes when ever she can get a ride and loves it. A guy named Charlie
falls down backwards on evey other hole and the rest of the foursome
gathers around and picks him up and all keep playing. Nancy's spirits
are good. She has started to use the computer to write about her golf
experiences. They recently published some of them in the Houston Area
Parkinson's Society News letter. You see the physical aspects of the
disease, its pretty awful but controlling her depression with
medications seems to make her want to break out and do something.
 
Year 19/20.  Please keep us in your prayers. I am resigning my position
as church treasure for the past 10+ years to devote more time to PD. I
have joined the board of directors of HAPS to see what I can do to help
others.  We have decided to have a Pallidotomy done here in Houston by
the doctor who operated on Nancy unsuccessfully in 1989. While that
procedure was't successful she was not injured and we have a great deal
of confidence in Dr. Gildenberg. The surgery has risks including the
possibility of eye damage, stroke and other unpleasant side effects.
Our neuologist is opposed as are most across the country but from all
the information I could gather it looks like a great chance to improve
Nancy's quality of life. Its not a cure but we are optimistic that she
will get relief from the terrible uncontrolled movements called
dyskinesia.
 
Year twenty/today. The surgeries (two unilateral) were successful. the
dyskiinesia is gone. On Sunday 5 days after the surgery we walked
togeter to the communion rail and delivered the bread and wine. There
were tears of joy and disbelief everywhere. This truly was a miracle.
We had not been able to do that for nearly  ten years. We are having a
heck of a time regulating medications, dealing with feelings, our
interpersonal relationships have changed radically and we are seeking
professional counseling to help us through this incredibly comples
time. Nancy and i enjoyed our vacation in Myrtle beach and she actually
played a full 18 holes of golf. The first time in over ten years.  It
was the abbreviated PD course where she plays most holes as par threes,
but we had a blast. We have created a video of the before during and
after and have shared it with some support groups. We plan to speak to
the local Rotary during PD awareness month and both of us are going to
Washingto in May to tell our story to our senators and ask them to Co-
Sponsor the Udall bill. I went last year without Nancy because she
could not handle a trip like that. This year she plans to go with me.
We have changed her medication for depression and are having a very
difficult time getting things in balance. We both hope it does't screw
up our trip plans.
 
This is about how i remember it. After twenty years I feel like we have
seen just about all of it.  Nancy was diagnosed at age 33 about 3 years
after we first noticed the symptoms of tremor in the left side and a
stiffness in the left leg.
 
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Bob Martone [log in to unmask]
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------- FORWARD, Original message follows -------
 
 
> Camilla,
>         I have people ask how Becky is doing at times.  I generally
> respond with "She's OK."  I leave off the "for someone with a
progressive,
> degenerative, designer, disease."  There are times when she's had a
bad
> day and I might respond with, "I would say her attitude is good."
>
>         In my view, most people ask how someone is out of courtesy,
not
> with an honest attempt to find out.  They really don't want to get an
> organ recital, or hear about every ache and pain.  As a result of
this
> belief, I just keep my response short and move on to another subject.
>
> Jeff
 >
> >I think one of the frequent though minor irritations of caregiving
is
> >knowing what to say when friends politely ask,"And how is Peter
today?"
> >Peter himself never knows how to answer this, and I am often unsure.
If
> >it is a close friend, who really wants to know, one can be more
> >specific. But with casual people who are being thoughtful but don't
want
> >a medical rundown, it's awkward. There are only so many repetitions
of
> general
> >phrases like,"Well, we're on the PD roller coaster as usual", one
can
> give
> >before it gets stale.  I can now sympathise with a friend whose
husband
> has MS
> >for years and who had to deal with this...bvut we wanted her to know
we
> >thought of them both, hadn't forgotten him, etc.  Does anyone have
an
> idea
> >how to deal more gracefully with this burr under the saddle? I'm
getting
> >tired of invoking the"roller coaster" :-)
> >Camilla Flintermann  CG for Peter,76/6+ Oxford,OH
> ><[log in to unmask]>