How I beat my Parkinson's Disease

2015/2

2002/3

With the benefit of hindsight, the earliest development of health issues that eventually was understood to most likely be part of the disease progression, occurred around 2002/3 (episodes of depression and rather extreme anxiety involving feelings of panic and at times, profuse sweating unrelated to environmental conditions or physical effort).

I had not had a history of depression, and previous mild anxiousness had been at the level of normal responses to more stressful life situations. I recall a single previous panic episode in the order of ten years earlier, but as it coincided with a very difficult phase in my work life, I am unable to conclude that it was a likely part of the disease process

2005

By 2005 I was feeling flat all of the time, both physically and psychologically.

• Physically still able to do most things, but always tired; general life activities were just more difficult;
  
• Mentally, my thinking seemed to be slowing and requiring more effort;
  
• Psychologically, I was more often anxious and the “black cloud” was a more frequent part of my life (although at no stage have I had suicidal ideation). By then my new partner Marjorie was finding life with me less joyful and more demanding at least some of the time.

In the period circa 2005, my Consultancy clients were mainly in the North West and Western regions of Tasmania, and Marjorie and I lived on our small farm North East of Launceston (Central North of Tassie). We commuted from our base at the farm to work each week, staying in rented accommodation and returning to the farm for weekends. It was tiring but until my health deterioration, had been a busy, exciting and rewarding lifestyle.

In 2005 we sold the farm and purchased a large dwelling on a little over 4 acres in a rural setting close to Devonport; both the dwelling and land were in need of a lot of work, but I was close to my client base. I expected the removal of the farm involvement and significantly reduced travel would make it all manageable again.

Through the refurbishment of the new home and land, while initially less demanding than the previous lifestyle, the slow (seemingly inexorable) deterioration continued.

The physical work was continuing to take more effort.

I was finding getting into position to complete tasks like painting skirting boards and door frames very difficult, I was less flexible and less energetic.

I was having moments of sudden outbursts of anger (with only the slightest of provocations) in contrast to my normal relatively balanced state of mind.

2007

By 2007 I had lost all sexual functioning and interest / libido – which understandably added to the depression.

2009

By 2009 Marjorie and I had managed to complete the work on our home and land to a level we found acceptable, but I was finding life so difficult by then that I was struggling to maintain the gardens and lawns. Even tasks like driving a large zero-turn mower to cut the acres of grass was getting to be beyond my capability.

In 2009 we sold the rural property and moved to an average sized home on a town block in Devonport – surely I would be able to cope with that!

Around this time, and for the next few years, I was working with both my GP of the moment and my Clinical Psychologist on trying to sort out both the physical and psychological problems I was facing:

Psychological

• Guided by my Clinical Psychologist, my GP tried a number of anti-depressants. SSRI’s helped my depression somewhat, but I had increasing numbers of rather extreme anxiety attacks – at the “cut and run / panic” level.
  
• This made working in my consultancy business increasingly difficult, only my considerable determination allowed me to continue.
  
• By 2011 my response to the SSRI’s was such that I was diagnosed with Serotonin Syndrome and stopped taking them.
  
• I was increasingly questioning my own sanity and life for Marjorie was immensely difficult.
  
• I was often making rather hasty decisions – in stark contrast to my earlier thoughtful, planned (at times almost obsessively so) approach that had allowed me to run a successful business for many years.
  
• As the time of eventual diagnosis approached, I was spending more and more time just sitting in an apathetic state. I still managed to force myself to get something to eat at noon, and made myself walk around the town block in which we lived once a day. The remainder of the day just passed by – it seemed that Marjorie left for work and then she came home. I was sitting in the chair when she left and was still there on her return.
  
• Mental processing and capacity to concentrate were continuing to deteriorate further. Thinking was slow matching my movements.

Physical

• Increasing fatigue progressing to a constant state of exhaustion and ongoing reduction in my capacity for the daily activities of living.
  
• I was sent for an ultra-sound heart examination – to check if that could explain the lack of energy – and was told my heart was amazing for my age.
  
• Worsening of a burning / tingling sensation in my feet and then hands’ which my GP diagnosed as Restless Legs – and started me on Sifrol. The only apparent benefit was a slight improvement in sleep. The feet especially, continued to be a problem with the main effects felt at night.
  
• By the time I saw Dr Evans in 2012 I was getting only 2-3 hrs of broken sleep each night – I felt exhausted all of the time.
  
• I was having increasing problems with breathing; at some point my GP found what he called an exhalation wheeze which he treated with normal asthma medication. It had no effect (as I later found, it was PD related issues with my diaphragm, but at the time was just another health issue where normal medical approaches did not work).
  
• My daily ‘around the block’ walks from home were taking three quarter of an hour – normal pace would only take 10-15 minutes. I felt as though every movement involved working against a huge opposing force. Every step required all of my substantial determination.
  
• Eventually my walking was not only slow and immensely difficult, but also made me feel as though I was (what I called at the time) “Spastic” – I now recognise that it was simply cog-wheeling.
  
• Over this period (it was so gradual that it is hard to pinpoint a definite time of onset) I recognised that my fine motor skills had deteriorated very significantly. Marjorie had to help me shower, she shaved me, at times she helped me clean my teeth and had to do up my buttons and other daily activities needing fine motor skills I no longer had.
  
• In the latter part of 2011, when I presented to my GP and was barely able to walk into his room, he recognised that there must be something significant happening neurologically. He still had no idea it was PD – he had only seen a few PD patients before, all with the typical tremor dominant presentation. A referral to a Neurologist was completed. The earliest appointment was six months ahead, but at least something was underway.
  
• That six months remains the most difficult time in my life. All of the health issues I have discussed above were continuing to be more impactful. The apathy took the edge off it to some extent, but that was certainly not the case for Marjorie – her life could only be described as close to impossible.
  
• Marjorie and I decided that it made sense to reduce the demand of home and garden maintenance further, and moved into a Unit. Time has proven the move to be a wise choice.

Diagnosis [and determination]