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.

 

                              

 

 

 

 

 

 

 

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