2015/5
I must point out here that a development early on in my Madopar usage was that at peak availability after medication I experienced an olfactory hallucination – I smelt wood smoke.
It happened in situations when I was doing little activity. I became adept at predicting when my need was less, based on my planned day, and using that to reduce the Madopar intake – especially the evening dose, without adverse effects. I halted the episodes of smelling the wood smoke by utilising this awareness. It became a very useful tool in the developments discussed below. Apart from walking the Burnie 10 (local annual 10 km event) as part of a ‘Parky at the Burnie 10’ team in the previous two years, I did not use more medication, choosing instead to live with any off periods that I brought on myself through pushing myself hard.
Reading ‘The Brain That Changes Itself’ (that I purchased early in September 2014) was an amazing time for me. I realised that what I had been doing in my Chess Set work, including the intense conscious mind involvement required to overcome the fine motor skill deficits in my fingers, met all the requirements of the Brain Changing therapies described by Dr Doidge. If I continued this with even more intensity I believed strongly that I could produce the same amazing Neurological changes that the inspirational people described by Doidge had achieved.
I now confidently knew “I could beat the disease” not just “let it beat me”.
I re-doubled my efforts with the chess set work. The additional effort meant that I began to experience “Off” periods in the late morning and especially by mid afternoon; the latter would not fully dissipate over the evening. By an hour or so after medication the following morning I would be OK to go again. I have a short video from the middle of April this year showing the typical very rigid walk back from my workshop to the Unit (only 30 yards or so) in the second half of the afternoon
INSERT VIDEO OF WALKING BACK FROM WORKSHOP
I met with Dr Evans in mid-May and convinced him that I needed to be better medicated to be able to meet my current life objectives; I did not tell him what I was doing with respect to Neurological change – I guess I was both unsure of the reception, and was also on a very personal experiment to prove that I could do it.
Andrew was quite challenging of me before agreeing to change my medication. I had been on 2 X 100/25 mg Madopar tabs three times per day. He prescribed 1 X 150mg Stalevo three times per day.
After Andrew’s questioning, I reflected on what had been happening recently. I became aware that the fine motor skills in my fingers had returned. I was able to do the things that had been difficult / impossible for many years. It is surprising that such a monumental change had not been recognised as soon as it happened; I guess that it had been a gradual thing that crept up on me, rather than being a sudden ‘aha’ moment. So sometime, probably in May, I had at least developed a new brain map for my hand functioning and for each individual finger – or could this have been the start of the more significant neural change that has evidenced itself since?
I attended the Parkinson’s Australia biennial Conference in Adelaide at the end of May. I had heard about Doidge’s latest book “The Brain’s Way of Healing” and purchased it on the journey to Adelaide. The book, in particular the chapter on John Pepper, made me even more certain I was close to achieving monumental change.
I decided to include the intensely mindful walking as described by Doidge in my armoury – on the Stalevo I was able to sustain this in a way that I couldn’t on Madopar; I had to begin walking slowly and was able to build up to a fairly intense walking rate within a month
When I attempted to do the dynamically mindful walking as described by Doidge – with conscious focus at the level of what individual body parts were doing and beyond that to what individual muscle groups were doing – I found it impossible to achieve the required focus for more than ten minutes or so. Unlike Pepper, I had no stability or walking issues other than back muscles that remained in tension continuously – my trunk had been operating as a single unit even in my best On state for a long time. My walking therefore was pretty much the same as it had been since I first learnt to walk
I therefore had to change all of my walking mechanics so that every part of it was sufficiently different to enable me to maintain the conscious awareness for extended periods. It was not too difficult intellectually, but extremely hard on my legs in particular. I was using them and their included muscle groups in a foreign way. It was a very painful process as I pushed through in my efforts to get the reward. I can now do an hour and a half of this sustained conscious walking. The pain actually helped with the focus required. The distances I was covering, and the pace, were both increasing.
INSERT VIDEO OF DISCUSSION OF WALKING
By the 8th of July 2015 I realised that I was having my olfactory hallucination all day – not just at peak availability
I was excited at the prospect of this being the last step in being able to live without Levodopa, but recognised that it may just be an excellent (unexpected) response to the Stalevo. I asked my GP for a scrip for reduced intake of Stalevo. After I explained what I was experiencing (he already knew what my final objective was) he was happy to do so (if I had asked for more he would have insisted on me waiting to see Dr Evans). I began 100 mg Stalevo doses the following morning.
The second day after this reduction I was having my hallucination continuously once again, in spite of the heavy intense walking workload I was managing to sustain.
I was continuing to do woodworking and my Parky Support Group activities throughout.
By Friday the 17th July 2015 (I will never forget that day) I was convinced that the only explanation for my work capacity combined with the “smoke” phenomenon was that my brain must be producing dopamine again – and in significant quantities.
Saturday 18th July 2015: I took a single two thirds strength Stalevo tab at usual time early a.m. No medication at noon. Then went for a 1.5 hr intense, mindful walk after lunch. Covered 8 km. Walked back into Unit and showed Marjorie that I was not only still ON, but could jump up and down and demonstrate an ease of movement that I had not been capable of for more than 10 years – I don’t just mean in the sense of being unmedicated. I also tested my trunk movement, and was surprised to find that I had a range of movement that was amazing. I have not taken any Levodopa since.
I was able to contact Dr Evans the following Monday by email with the story since my last visit to him. He got back to me the next morning and indicated two things.
The first was that the Stalevo could hang around in my system for up to 4 weeks – the implications were plain. The second was that he was happy for me to stay off the Stalevo; I had asked him if he was concerned about me continuing cold turkey.
I had commenced reduction of my Clonazepam in consultation with my Clinical Psychologist. I also commenced reduction of all other Parkinson’s related medications (with the help of GP who provided me with weaning off doses and timetable) – what a surprise for the Dispensing Pharmacist!! – once I found that I no longer needed them either, with the exception of Azilect (potential disease modifying properties). These were:
- Movicol
- Enablex
- Endep (Amitriptyline)
- Clonazepam
As of Saturday 8th August 2015 the only medication relating to my history of PD I am still taking is Azilect – I find that I am still smelling smoke in the period following the taking of this, and will discontinue it once the 4 weeks post-Stalevo period is up.
I have had no OFF periods since and continue to function at a level of at least 13 years ago (then age 54)
The following points highlight my current status:
- Now off all Levodopa since 18th July – 24 days;
- Off all other PD meds excluding the Azilect;
- I am sleeping well, have no problems getting to sleep;
- I have no masking as was occurring prior to the recent changes particularly in an OFF state; I can raise my eyebrows and wink – bloody marvellous!
- I am mentally very alert, and physically “alive”;
- I feel full of beans;
- I have walked more than 110 km at good pace since the 17th July – even though I have been forced to have days off and reduce my distance and pace because of a flare-up of Psoriatic Arthritis in my knees (I had forgotten about this as I had not been able to work at a rate that caused problems for at least the 13 years mentioned earlier).
Since the change the only surprising element has been at the level of emotional and mental functioning; I was expecting the physical changes based on my understanding of and attachment to the science. I am very pleasantly amazed by my capacity to feel a fully nuanced range of emotions. These span being brought to tears by an Andre Rieu open air concert, the wonderment of feeling embarrassment (I had often been anxious but never able to feel embarrassed for so many years) and depth of feelings of love and appreciation of Marjorie that I was unaware I had lost.
My reading of this is that even though I had not been on any anti-depressants since treated with Levodopa, I am now aware that Parkinson’s has had a similar effect – emotional responses were never of “the black cloud” variety, but neither had they reached the heights. I now realise that they had been dampened down for many years.
I am also able to quickly assimilate complex information. I have gone back to McNamaras’s book and found that I only need to read it once to take it in. So different from the effort of a few years ago. I can also recall most of it without difficulty. I have found that things from my past experience pre-PD which I thought I had lost from my memory are now available to me. For example, whenever I tried to recall the medical specialty involved in arthritis management or the name of the specialist who diagnosed my psoriatic form I could recall neither. As soon as my knees began to trouble me a couple of weeks ago I instantly recalled the Specialty – Rheumatology – and the Specialist’s name.
Another serendipitous happening over this recent rapid change period is that I had been examined by a Physiotherapist with training specific to PD only a week before it all happened. She recorded her findings with respect to the rigidity in my back in particular, provided me with a set of stretching exercises, and told me to repeat them 3 times a day. She also said not to bother coming back for 2 weeks as it would take time for any change to be seen. On my return to her the following Tuesday the 21st July she struggled to believe what she was seeing as I bounced around like a youngster. She was even more amazed to hear that I had been off LD since the Saturday. She has documented all of this for me.
I have many more insights into what has happened over my years with PD. I want nothing more than to be challenged by experts in all aspects of this story from a brutally scientific perspective. I would also love to have a functional MRI or alternative diagnostic examination able to shed light on exactly what is happening in my wonderful brain. Some of these go further than appears to be the case with John Pepper. The changes are global – not restricted only to the functions that I specifically worked on during the therapy. I do not have to be mindful to walk etc, all of these functions are automated.
How I beat my Parkinson's Disease 