Hi Listfriends,
My wife Faye asked me to translate a letter I sent to the Dutch Parkinson
list. Because of the translation done anyhow, I decided to share my
thoughts with you. Feel free to give reactions or suggestions. I realize
that it is very personal and for every patient the things are different.
Meanwhile I had an accident with skiing. I slid on my back with my head
pointing downhill. With the back end of my right ski dug in the snow I
waited for my ski to go off. Unfortunately the ski didn't go off but made
my calf extend extremely. The pain was bad for a few hours but now i have
just a sore muscle and I can't ski for a few days. I tried to get it better
by doing fitness for an hour yesterday, but as soon as I give my leg rest
it gets stiff. What it has to do with PD? Well probably nothing, but on the
other hand I was going off. Maybe i should have taken my medication sooner.
An update about my PD from our holiday address in the ski resort Crested
Butte where Faye and I are staying at the moment. Faye is attending medical
meetings from 6.30 - 9.00 am and from 4.00 - 7.00 pm, for 5 days. In the
time between the lectures we can ski. Sure, after 10 years of PD I ski
downhill, although I am certainly not a reckless skier. In March last
year, on our honeymoon, I skied for the first time downhill. I enjoyed it
that much that we will go this year twice. It is very difficult to be "on"
at the right time and length of time and not "hyper" reactive. But I have
the same problem when I play 18 holes with golf. Playing 18 holes cost me
about 4 hours and it is very difficult to be 4 hours "on" and not "off" or
"hyper"
It is a pity, but I must make the conclusion that after 10 years of PD the
disease gets more and more a burden in my daily life. I am
not complaining, because my life is wonderful, but here are some facts. It
is some time ago that I passed the 50 % borderline. With the 50 %
borderline I mean the deviation of "good" and "not good". "Good" is when I
function as a reasonable healthy person. "Not good" is when I can not-,
hardly- or with much effort- do certain things. Don't think that I'm down
and feel pity for myself. That doesn't suit my character. On the contrary I
am searching for the best possible way to cope for the next 5 years,
because I am convinced that I will be one of the lucky people who will be
cured of this awful illness.
Until that time I try to have the best quality of life as is reasonable to
be expected. How ? That is where i am seriously thinking about. and I will
really appreciate any input from your side. I have several possibilities en
maybe the solution can be found in a combination from some of the
possibilities. It is not so weird to think that the future treatment/cure
will be found as an improvement of the now available treatments.
Okay, here is my list
* Medication, especially those which give a strong reduction of
Sinemet or of other L-Dopa agents. I still use Tasmar but have every 2-4
weeks my blood checked on the well functioning of my liver. So far is
everything okay. I still try to use as little medication as possible. I
take the next dose when I feel that I go "off". This leads often to periods
in which I go very hard "off'", I try to minimize that effect by chewing
a fast working Sinemet 62,5. At this moment I use about the following
medications per day : TASMAR 2 X 200 MG, SINEMET CR 5 X 125 MG, SINEMET 4
X 62,5 MG and PERMAX 5 X 1,5 MG. This gives me the best relation between my
3 choices "ON" , "OFF" and "HYPER", each 33 %. There are several new drugs
in the pipeline and there are several drugs that I haven't tried yet.
Ropinirole and Entacapone are on my wishlist..
* Keep on moving is to my opinion the most important activity
of a Parkie. Sport and fitness without any restriction than those given by
your constitution. To give an example : I am by nature not a runner and
that is something I won't do. I can walk for hours. I play golf because
that is a good sport for me. I walk quite a distance and besides that I use
by hitting the ball rather many muscles. It is here in the USA not as
expensive as in Holland. Further is bowling an excellent sport for me.
Faye and I play in a league for beginners. Further do I do exercise on a
complete fitness center at home. I feel not much worse than 10, 15 maybe 20
years ago. I just have to get rid of some overweight:) I already lost 6
pounds, but I need to loose at least 20
* SURGERIES is the last group of treatments of which I consider
to be a serious method for me . There are many possibilities with
variations which make it difficult to make a choice. pallidotomy and
Thalodotomy are two methods of which I am not so pleased. In the first
place, because it is irreversable and in the second place because I have
seen too many bad or not so good results in the people around me. Much more
trust do I have in the deep brain stimulation, Especially the Pallidal
stimulation. Geert Arien had a pallidal stimulation four years ago and has
been able to return to a job for 40 hours a week. Unfortunately PD is
effecting his other side so Geert Arien will have a bilateral pallidal
stimulation in the next few months. The DBS treatment is still improved and
the results are very promising. AND it is reversible. The electrode can be
removed when the cure has been found, although I wonder what happens with
the tissue around the electrode. Will it not be to much attached to it??
The third possibility is the implantation of cells in the brains. Sometimes
there will be added a growth factor (GDNF). There are several varieties and
all are still experimental and I believe they do not accept new patients.
There is one research project where are still patients required : The
implantation of porcupine cells. The results of this surgery are very
promising.
* OPTIMISM is definitely of a great importance. My optimistic
lifestyle has played a huge roll in my life as a Parkie. By thinking
positive always and everywhere and respect others and try to feel and think
what they experience, I have been able to cope well with this rotten
disease. There are a few things I will never do. 1) I will never
personalize PD, because a person can think and one can discuss with a
person. PD is just a mean disease which doesn't follow any rule and it is
hard to treat it. When you think you have it under control it strikes
again. 2) I will never give up fighting PD and I will be the boss in my
body. 3) I will never stop again doing this things that I like to do, but
there is the possibility that I start disliking things so that gives me a
reason to stop. 4) I never get angry, because that makes me loose my
control of PD. Other emotions do the same, but I need them to have a good
quality of life. 5) never stop making plans for the future, because the
future is near.
* Do the things I enjoy is of course just a matter of
time/money/opportunity, but they make me feel happy and when I am happy I
have my PD better under control. I enjoy writing (poetry) working on my
computer, fishing, playing golf, bowling, working in the garden, going to
church, the world on which we live, skiing, people and many other things
(not necessarily in this order). My writing is maybe a little childish, but
that is because my English lexicon is still limited. The things I don't
like to do I tell myself that I like them to do (or my lovely wife Faye
does them).
I want to end this letter with a few general remarks
I want to be cured and want to live as a normal citizen in the United
States, work the 15 years I lost with PD (I have PD for 10 years and will
be cured within 5 years).
And tomorrow? Tomorrow I go skiing again. I want to go very badly. We are
at the moment in Salida. This is our second ski trip this year. After
Crested Butte we had a week rest and we travelled last Saturday and Sunday
by car to Salida. Today I had a private lesson from a man named Bob. He is
67 and he admired my perseverance to learn skiing with my PD. I didn't feel
any pride, I felt just humbled because I think I am a lousy skier. I am
grateful to Bob, because he gave me a lot more pleasure in skiing.
And after this week? I hope to start my own business named "Use it !" per
May 1. I will teach people how to use their computer or how to improve
their usage of their computer. Further I like to become a father of Fayes'
children and to see them grow up in our new place that we are planning to
build on our lot, just outside of Waco. And I want to bowl a perfect game
(300 pins, my record is 235) which means 12 strikes in a row.
Feel very welcome if you are passing (close) to Waco to stay with us and
give us the opportunity to enjoy your company. We will love to meet you.
Warm greetings,
Kees Paap
P.S. I have written about 100 poems of which about 25 about PD. If you are
interested I can send them to you as an attachement or in the body (=on
this spot) of a message. The files are in the ".TXT" format, which can be
read by any wordprocessor. I Will post in a separate message one of my last
poems.
