|
I visited with my GP Dr Barry Mayes and I had a small twitch in my thumb; Bary did not think it was Parkinson's, 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 has had Parkinson's for 17 years with ten of those years now being 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. Examples: Left little finger is no good on the typing keyboard anymore, walking is slower general and 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 with more stiffness in the left foot and leg, slower in 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 8 a.m. and 1 p.m. Things improved and okay 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 is 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 diarrhea, which has resolved since stopping the Cabaser. Other problem was mild hair loss and thinning and then also came out in large clumps. Back on 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, Pramipexole (Sifrol).
But I rang him on 6th September and canceled 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, Dr. Samuel Kim.
21st April 2012
Appointment with Dr. Samuel Kim
On 1 x 100/25 Sinemet 8 a.m. and 12 p.m. but keeping the afternoon dose of 1/2 tablet at 4 p.m. 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 on Madopar instead.
19th May 2012
Appointment with Dr. Samuel Kim
I 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
Appointment 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 added 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 presently on Madopar 62.5 at 0600 a.m. and 100/25 at 0900, 1300 and again half at 1700.
13th January2018 - now on Neupro patch 6 mg.
27th February2020 - still with Dr. Dominic Rowe and medication is now 100/25 Madopar at 0600, 0900, 1200, 1500, and 1800, plus the 6mg Neupro patch and 1 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. . . canceled visit with Dr. Rowe for August 2020 as not wanting to go to his clinic.
August 2020
Still walking the same, having 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 a.m. this morning until now at 5 p.m. 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 Prof. Dominic Rowe. It has been over a year since my last visit. He has now added a 62.5 mg Madopar capsule to my 6 a.m. and 9 a.m. times. . . will see how this goes. Next appointment will be in May 2021.
NSW seems to be Covid-free at the moment; let's hope it stays that way.
Update - 16th May 2021
Have realised just how many headaches I am having and looking back at my journals, 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 it 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 6 a.m. and again at 12 midday plus another Amantadine at midday.
23rd August 2021
Update - 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.
17th August 2021
Appointment with Dr.Rowe: I 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. So today I have added an extra half a pill to my 9 a.m. 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 since 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 Parkinson's, such dreadful disease I would not wish it on my worst enemy.
4th May 2025
First Diagnosed with Parkinson's in March 2005; it is now May 2025 so I have had this disease now for over 20 years.
Latest update
Latest pills update
6 a.m. 100/25 Madopar, 62.50 Madopar, I amantadine, I Comtan 200mg
8.00 a.m. 1 6mg Neupro patch
9.00 a.m. 100/25 Madopar, 62.50 Madopar
Noon 100/25 Madopar
3.00 p.m. 100/25 Madopar 62.50 Madopar
6.00 p.m. 100/25 Madopar 62.50 Madopar
I now have a hard time walking even with a walker, and I shuffle, still have hallucinations and seeing things.
I have very bad double vision; and no, adding prism to glasses does not help. . .so this makes it very difficult to work on the computer.
Significant stiffness in the legs, makes it difficult or hard to walk.
Freezing up when walking, legs suddenly become unable to move when trying to walk.
Difficult maintaining balance leading to increased risk of falling.
Difficulty swallowing, leading to aspiration and choking risks.
Insomnia and fatigue.
Problems with motivation.
I have been having more problems with falls and have had a few now, but only two of them were bad, but I did end up with major pains in lower hips and neck.
I have an appointment with Prof. Dominic Rowe on May 13th 2025, will update further if any changes.
Copyright Daphnes Graphics 2025
|
