I visited with my
GP Dr Barry Mayes and I had
a small twitch in my thumb , Bary
did not think it was Parkinsons,
but gave me a referral to a
Neurologist Dr. John Watson at the
San Hospital... he
said I had fairly mild symptoms ,
some facial expression reduction,
with reduced arm swing on the
left... I did not start any
medication.
26th September
2005
Appointment with
Dr. John Watson
AS you know Mrs
Bowyer was to come today so I
could examine her before and after
a dose of L-dopa. She has done
extensive reading and is not keen
on trying L-dopa( Sinemet) at
present because of the important
but controversial issue as to
whether it leads to increased
dyskinesias.. so nothing started
at the moment .
6th March 2006
Appointment with
Dr. John Watson
Very little change
, her voice and expression was a
little flat slight reduction in
walking ability at times and no
worsening in her typing
ability...still not keen to start
medication.
Met a lady from
the Parkinson's foundation
her name is Cheri Rice she is 44
years old and had it for 17 years
with ten years on Sinemet, she was
to have the Deep Brain Stimulation
operation and I went to the RNSH
to visit her the day before her
operation and again the day
after her operation.... which
seemed a success.
4th September 2006
Appointment with
Dr. John Watson
Symptoms are a
little worse, example left little
finger is no good on the typing
keyboard anymore, walking is
slower general handwriting seems a
little trickier.Still not
interested in starting on
medication Had MRI
4th June 2007
Appointment with
Dr.john Watson
Parkinson's has
progressed some and stiffer in the
left foot and leg, slower ikn
walking and a little stooped at
times with a stiff neck, slight
tremor in left , Started on
Sinemet 100/25 expecting to work
up to 3-4 times a day.... but only
took 0.5 of tablet at 8am and 1pm,
things improved and ok on this
dose.
Starting a trial
of Cabaser ( agonist ) to work up
to 3-5 mg over the next 4 weeks
14th August 2007
Appointment with
Dr. John Watson
On Cabaser , 4mg
each morning, cut out the Sinemet
altogether , walking better,
better facial expression and voice
better.
27th November 2007
Appointment with
Dr. John Watson
Decided to come
off Cabaser from the 19th
November 2007 after cautious
reduction. as had bad
diarrhoea, which has resolved
since stopping the Cabaser
.. Other problem was mild hair
loss and thinning and then also
came out in large clumps..
Back onto Sinemet 100/25 half
tablet twice a day
3rd March 2008
Appointment with
Dr.John Watson
Hair loss is still
continuing which is of great
concern to me ... Dr Watson
suggested I try to stop the
sinemet for two months and see if
this makes any difference .
21st July 2008
Appointment with
Dr. John Watson
I came off the
Sinemet but after four weeks could
not stand the rigidity any longer
.. Dr.Watson suggested
starting on another Agonist after
I come back from overseas trip ,
would be for ( Pramipexole (
Sifrol ) ..
But I rang him on
6th September and cacelled further
appointments . I have since
just stayed on Sinement with my
local GP Dr. Barry Mayes
Appointment with
local GP Dr Alana
Sinclair who has referred me
to a Neurologist at
Westmead a Dr. Samuel
Kim
21st April 2012
Appointment with
Dr. Samuel Kim
On 1 x 100/25
sinemet 8 am and 12 pm but
keeping the afternoon dose of 1/2
tablet at 4pm but starting
to have some dyskinetic movements
in lower limbs
possibly Diphasic dyskinesia ,
because it is hard to break the
Sinemet I have been started onto
Madopar instead
19th May 2012
Appointment with
Dr. Samuel Kim
Was given a
levodopa dose cycle assessment and
observed for 3 hours , he
feels i am under-dosed.... Now
stopped seeing any Neurologist
again
April 22nd 2016
Appontment with
Dr. Dominic Rowe at North Ryde
Currently taking
Madopar 100/25 three times a
day he suggested
another MRI at Northside Medical
Imaging and blood tests which were
normal
He has changed my
medication to Madopar 62.6 taking
1 every three hours at seven , ten
one, four , seven and ten ... he
also hadded Sifrol ER 0.375mg 1 in
the morning, he suggested that I
may need to see Dr Paul
Silburstein for a future DBS.
30th July
2016 Doctor Rowe started
me on 2 mg Neupro
patch
1st November
2016 Now on 4 mg Neupro
patch
19th May 2017
Appointment with
Dr. Dominic Rowe
I am at present on
Madopar 62.5 at 0600
am and 100/25 at 0900 , 1300
and again half at 1700
13th January
2018 now on Neupro
patch 6 mg
27th February
2020 still with Dr. Dominic
Rowe and medication is now 100/25
Madopar 0600 , 0900,
1200, 1500, and 1800. plus
the 6mg Neupro patch and I
Amantadine for dyskenisia.
March 2020
We now have COVID 19 ( Corona
Virus ) in Australia so keeping a
low profile and not going out at
all.... cancelled Dr. Rowe
visit for August 2020 as not
wanting
to go to his
clinic ....
August 2020
Still walking the
same , good days and bad days ...
on a bad day I struggle to walk
and mainly shuffle. Still on
same medication as in February
2020
Still
driving on occasion but stick to
my home zone mainly
December 30th
2020... Well things have changed
for the worse as I am now
having trouble walking and can
only shuffle and stagger... took
pills on time but still no luck in
walking
December 31st 2020
... Same again today can't walk
from 6 am this morning until now
at 5pm... I hope this is not
permanent but this is a
progressive disease and maybe my
time has come to get to the latter
stages... very scary thought.
Covid has now come
back into NSW full on so the
States are now in Lockdown..
although the stupid government is
allowing people to still see in
the New Year but not in large
groups , what is the difference
between 10 people or 50
people , Covid does not pick
and choose.
February
2021 Appointment today with
Proff Dominic Rowe, it has been
over a year since my last visit...
He has now added a 62.5 mg Madopar
capsule to my 6am and 9am
times .. will see how this goes
. Next appointment will be
in May 2021
NSW seems to be
Covid free at the moment , lets
hope it stays that way.
Update;
16 th May 2021
Have realised just
how many headaches I am having and
looking back at my jounals it is
once every two weeks since
starting on the 4 mg Neupro
patch.... I have an appointment
to see Dr. Rowe on
the 28th May 2021
Appointment today
28th May 2021 with Dr Rowe...
mentioned all about my headaches
that I have had every 2-3 weeks
since 2016 and he said not to
worry is just old age but I think
it is too coincidental that it is
when I started on the Neupro
patch. so no change to any
medications ...
Latest appointment
with Dr Rowe was on the 17th
August 2021 I am now having
more trouble with off time and
then have lots of trouble walking
and freezing of gait which
can be very debilitating
.. he has increased my
Madopar by adding a Madopar
62.5 at the 6a.m and again at the
12 midday plus another
Amantadine at midday.
Update the Covid
has now taken over the state of
NSW plus other states and there is
about 835 cases per day and we are
in full lockdown. 23rd
August 2021
17th August 2021
Appointment with
Dr.Rowe andI am now taking
an extra Amantadine at
Midday. but
stopped taking it in October
2021
17th December 2021
appointment with Dr. Rowe..he
prescribed a new medication
for me to try called ... Xadago
but after two weeks on it I gave
it up as I was getting
hallucinations.
4th February 2022
... I am having more
problems with mobility and when I
walk I freeze up a lot and I
feel concerned about falling
over. I even have trouble
walking with my walker now. ....
I am just
experimenting with my pills
so My
normal routine is 6 a.m one
and Half Madopar
25/100...... 9.a.m one and
half madopar and one
Amantadine .... 12 midday
one and half Madopar...
3 p.m 1 madopar
and at 6 p.m one madopar..... sos
today I have added an extra half a
pill to my 9.am and Midday pills
to see if any thing changes..
31st August
2022 Nothing much has
changed , pills taken still the
same, but I am experiencing some
hallucinations early hours of the
morning, I see men at the window
or children playing in the yard,
and the latest was a gargoyle
that was at the window.. I
do know they are not real and just
tell them to F off, as it is
impossible for me to see out of my
window as it is covered in foil as
I need a dark room to sleep in.
It is now 17 years
since I was first diagnosed with
Parkinsons.. such dreadful
disease , I would not wish
it on my worst enemy.
Copyright
Daphnes Graphics © 2022
|