I am often asked about my pallidotomy and the results now that it has been
three years almost to the day -- May 8, 1993.  I have responded forwards,
backwards, upside down and standing on my head.  A story I have not told has
to do with the return trip from Stockholm.  A lady sitting near us on the
airplane, leaned over and said she had heard us talking about Parkinson's
disease.  She was from eastern part of Wyoming and had some friends with PD
who might be interested in what I had just done.  I gave her a copy of our
newsletter, Movers and Shakers.  That was the end of the conversation.

It was maybe 6 months later that I received a letter from a Shari Erickson of
Frontier, Wyoming, a small mining town in western Wyoming.  She had been
given a copy of a newsletter called, Movers and Shakers, and wanted more
information.  There wasn't a PD support group in Frontier.   I called her and
we talked off and on for maybe a few months. Don, her husband, was starting
to experience some dyskinesia.  Don was still working but family life was
changing due to Don's PD.   Recently she sent me the following letter.  As a
celebration of the three years since my surgery, I would like to share her
letter with you.

Dear Mr. Bonander,

It's been along time and a lot has happened since we last conversed. I'm
sorry it took us so long to communicate with you after all the help and
support you offered us when we really needed it. I've finally taken the time
to sit down and get this letter off to you before we get side tracked
anymore. I guess first and foremost I need to tell you that the reason you
haven't heard from us before is simply time, with both of us working and
especially Don trying to make it through each day at work.

Don continued to work the shift work trying to get his twenty years of
service in with the company (the needed amount of years to retire with his
full medical coverage intact.) This was very difficult since his condition
continued to deteriorate at a rapid speed. Some days were very good but bad
days were beginning more and more to be the norm.

On June 13, 1995, Don came home from his shift and told me that he could no
longer function at work safely. He had too many incidents that were
suspicious to himself and people around him. We found out that a lot of the
people he worked with were covering up for him and that wasn't good. So, he
put himself on the company sick leave.

We read in the Movers and Shakers that participants were needed for a study
at the University of Utah Medical Center for Parkinson's and Pallidotomy .
Dr. John Roberts was the man to make your first appointment with and if you
qualified you would be sent to Dr. Peter Heilbrun for evaluation for the
Pallidotomy surgery and further study. Needless to say, we called for an
appointment immediately. Don saw Dr. John Roberts and was evaluated and
examined. It was his opinion that Don was a perfect candidate for the
pallidotomy surgery. He set up an appointment for Don to be evaluated by Dr.
Heilbrun. Don was examined and found to be a perfect candidate for the
pallidotomy surgery. He was scheduled for surgery on October 5, 1995 at the
University of Utah. He went into the hospital on Tuesday of that week in the
Movement Disorder area, he remained there and was tested until Wednesday. On
Wednesday he was transferred to the Neurosurgery wing and the pallidotomy was
performed on Thursday afternoon. My oldest daughter and I went into his room
about an hour before the surgery to find an orderly trying to put Don up onto
the bed to wait until it was time for surgery, my daughter and I had to help
him, it took the three of us to put him up so he was comfortable. Within one
hour after the surgery, he had eaten the hospital dinner, a Wendy's burger
and fries, a vanilla milk shake and coffee; he had showered, changed into a
pair of sweatpants and tee shirt, walked down the hall to the payphone to
talk to his mother long distance with me and then went into the waiting room
and visited with the family of the man in the bed next to his. He then became
tired and my daughter and I tucked him into bed and he had a very good sleep.
He remained tired for a couple days but also remained very excited. My kids
said it was like turning the clock back 10 years and getting their dad back
again. Don was released from the hospital on Friday night and we went home
for him to recuperate. He had his cramping of limbs and his days of the
"pre-pallidotomy" symptoms, but when he went back for his two day stay with
Dr. Roberts to be tested on December 5, 1995, he was doing much better and
Dr. Roberts gave him a release to return to work at full capacity on December
11, 1995. On February 2, 1996 he went for his first visit with Dr. Heilbrun
and when he weighed in at the doctors office, he had gained all but 2 pounds
of the twenty pounds he had lost in the last 5 to 10 years.

Don was, to all who knew him, 100% improved. But, just about 2 weeks before
his visit with Dr. Heilbrun, some of the dyskinesias returned and it was
quite frightening to both of us. Dr. Heilbrun, during our visit, quite
expected this but did not know how much there would be. The reason he
expected this is because he knew it had moved to Don's left side and this was
what he would be left with after the surgery. This put us at ease and made a
lot of sense also, we knew it had moved into his left side but the right side
was so pronounced that it really was hard to tell what part of his body was
not moving. We still consider the improvement to be 100% because the problems
that he deals with today are not even 1% of the problems he dealt with before
October 5, 1995. I see his left foot moving constantly while we watch TV or
while he's riding in the car almost always. He still has some palsy like
movement in his head at times, noticeably more when excited about something
(baseball game etc.)

This disease is not only physical but also mentally disabling. Don withdrew
into himself over the years from being talkative and outgoing to being like a
recluse. He was to the point of being rude and he couldn't or wouldn't talk
in normal conversation during visits with the kids or even really at home
just the two of us. He didn't want to do anything even go out to dinner. He
was always afraid that if the medication was on, he'd be moving
uncontrollably and if the medication was off, he would not be able to cut his
food or even adjust his chair or have the voice strength to speak to the
waitress let alone having to get up and shuffle out of the restaurant like a
100 year old man. Things are different now, he loves to go. He visits and is
trying to get back his always not so funny sense of humor. He has some
problems with the interaction now but I think he's just out of practice. He
says that some times it's like the sentence or thought is on his mind but it
won't come out of his mouth properly. I just know that it's like having him
back again and we go out to dinner and we go out of town and we go shopping
together and he has life in him again. He still has Parkinson's, he still
takes medication, and he still has some visible signs of the disease, but
nothing compared to what it was. We will deal with the left side as soon as
it becomes a problem and the doctors want to keep him monitored for the rest
of his life.

In my opinion, this is the greatest surgery ever and Drs. Heilbrun and
Roberts are the greatest in the country, bedside manner and skills. Both
doctors, upon examination after the surgery, smiled from ear to ear and said,
"Boy, you can't even tell he's got the disease anymore." His weight is back,
his coloring is back, he has facial expression and he feels great.

Anyway, Mr. Bonander, I thought that I needed to get this update off to you
as you were so supportive when we had nowhere to go and no one to talk to. I
am going on-line with my computer probably next month and will get in touch
with you again, I have more time as I have now quit my job, temporarily, for
some much needed rest and time to get some things done for me, I think you
know what I mean. I went through ten years of people saying "how's Don?" "Don
doesn't look well, is he O.K?" "How's Don feeling? This must be tough on him"
You never hear anyone ask, "How are you holding up?" I worked everyday
knowing that I had to help him but deal with the reality of what his and my
future might be. I was tired and Don said "go ahead and quit, you deserve
it". We are planning to relocate in Reno, Nevada soon. Our grandson and our
oldest daughter live there. Don wants to take some classes at the University
and then find a job that is less strenuous than the shift work. Things seem
good now, we take everything one day at a time.

We are also wondering how you are feeling, and how things have gone since
your pallidotomy surgery. The last we spoke, you had been put on disability.
What are you doing now? And more importantly, how are you and your family
doing? By the way, I also remember one thing you told me when we spoke, "you
said Parkinson's patients don't sleep all night." Don never lost his ability
to sleep, he had restless nights, hallucinations and bad dreams, tossing,
talking and yelling in his sleep. I remember them well, he woke up in the
morning just fine and rested (he said). He still has some bad dreams, he
sometimes strikes out in his sleep, I don't wake him but I protect myself,
this happens less and less as the time goes on.

Yours truly,

Shari Erickson
Frontier, WY.


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Thanks to Shari and Don.  And Shari, how are you doing?