Parkinson’s, Observations of a Son and Carer

Laughter may be the best medicine, yet what happens when your body quite literally won’t let you?

I know this chap who is a qualified laughter therapist, no really. There’s some interesting analysis surrounding forced or faked laughing that makes for thought provoking reading for anyone needing a lift.

But I digress. Those who know me will not be surprised that I can take a tangential turn even before beginning to discuss a topic and as someone once commented, I write straight from my mind emulating my preferred form of communication, speech. Like Billy Connolly I always remember and return to the original thread though!

Parkinson’s then, another mystery of our mind and body, basic processes disrupted with devastating consequences to daily life if not mortality. ‘They’ say Parkinson’s won’t kill you, it just makes everything more difficult.

I’m not going to go into any exploration of the illness here beyond the experiences and trials my mother has endured and observations on the discussions we have had both with various medical professionals, carers and specialists. The extra impetus I have in writing this comes from seeing some of the people who are writing about their own struggles with a mental illness, showing and sharing with others to advance understanding and treatment of many varied afflictions.

As I hope to touch on, many aspects of the mind and body can be developed in differing ways to approach one’s own particular challenge. I believe discussing and sharing ideas surrounding the common approaches and benefits these methods can bring in treating many differing aspects of health. It is even becoming more widely accepted in western medicine that maintaining a fit mind is an aid to prevention of illness in your lifetime. I say fit as a differential to healthy there purposely.

(Blimey, just writing then recalled my mum, brother and I running a stand at the Mind, Body and Spirit festival back in the early 1980s, printing off Biorhythm charts on my brother’s Commodore PET computer. Even then I knew I’d make a crap hippie as I couldn’t take the smells, chanting and weird music. Hmm, conversely those comments could be applicable to me by those who think me to be a hippie!)

Realising that a symptom or impact, you felt was personal to you, is shared amongst other sufferers even if not recognised by the empirical scientific approach of western medicine, can help to relieve some of the associated stress that you may be suffering. Hence my writing this and my mother attempting to spread the idea of ‘The Parkinson’s Walk’ that she developed for herself to aid mobility. Knowing you are not alone and learning other ways to cope or work around your particular challenges can be a major aid to your struggle.

As my mother now approaches her 80th birthday, she has been suffering with Parkinson’s for about 15 years with a stoicism anyone who knows her would expect. Whilst fortunate enough to not be suffering with the most severe and debilitating form of the disease, I can assure you that, even so, the effects would test the strongest of wills. She lives alone and I live an hour’s drive away, so the support I have been able to give, barring several months of closer care, has been limited to telephone calls with her and liaison with authorities/carers.

My mother’s approach to any obstacle is to bash(her term) through it basically. Armed with pig headed stubbornness and a will to survive learned through a lifetime of striving, even allied to her innate strength, it made little difference when the dopamine suddenly wasn’t there. The old ways of pushing through didn’t work.

So the impacts in her case became the dual fight against the onset of the illness combined with a set of mental challenges that her conscious and sub-conscious hadn’t been fully prepared for. If additionally you are someone who lives alone and needs to rely on organising your own care by dealing with local authorities and the fragmented health service of the UK then you will also be faced with a whole other set of mental and emotional challenges, if not also being placed at risk of harm from unmonitored ‘carers’.

Okay, in preparing to write this, I’m starting to realise that in the past fifteen or so years we have gathered a lot of data and as my mother is likely where I get my over-analytical bent from we’ve explored many concepts. How best to present a diverse topic has been nagging at me recently so I think the idea of splitting the list of areas into topics is probably the best way to go. Otherwise my rambling flow will probably bore the keenest reader in trying to tie them all together!

The following topic list is therefore what I’m now going to try and set out in a series of posts to give them better focus. I will also see if I can group them in categories such as treatment, impacts and support for example.

  • Cause
  • Depressive face/outlook
  • Essential routine daily/weekly/monthly checks to counter mistakes made by medical, local government and care professionals.
  • Specialists, trust them but take your time to understand what they say and impress your perceptions upon them
  • The Parkinson’s Walk
  • Primitive brain – bypass route, instinct
  • Tai Chi and other forms of exercise
  • Movement perception – distraction causes conscious intervention to existing plan
  • “I am old so I must act old”
  • “Is this it?” Existential angst – The ‘Waiting for god’ syndrome
  • Religion or lack of
  • Oriental influence – Jackie Chan, ambassador to the West?
  • Local authority support
  • Police support
  • Carers
  • Care agencies – The BUSINESS of caring – monitors, controls and working conditions
  • Assisted living. What assisted living?
  • Medicine preparation and delivery or not
  • Anxiety/Depression – Avoiding becoming your own worst enemy.
  • Sleep deprivation
  • Care home, easiest option, only option(sleep deprivation)
  • Stoic because she’s in this on her own
  • What if this is the time I’m wrong? A thirty year promise following a school service.
  • Study on effects of cannabis on receptor influence. Learning from contrary indicators in ‘healthy’ minds.
  • MDMA tests on sufferers
  • Patients coordinating their own care
  • How treating care as an industry has destroyed the provision of care in the UK
  • If so little is understood how can valid treatments for symptoms continue to be ignored by those who claim ignorance?
  • The placebo loop.
  • Health care or liability avoidance, the mantra of modern medicine and care.

 

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