Parkinson’s Awareness Week in the UK – #incontrol – Day 5 – “you have control”

PAD2014

 

Day 5 of 7 of Awareness Week 2014 and after an appointment with my GP (family doctor) this afternoon, my thoughts turned to how to be  #incontrol of the relationship with medical and health professionals.

During the appointment, my GP made reference to my “exotic form of parkinsonism” and while I understand his choice of words (my symptoms arrived fairly well developed and out of the blue in 2006) I suppose the “exotic” label could be applied to pretty much everyone with a parkinsons diagnosis.

The disease has been called a “designer” disease, or one that is “tailor made” for the individual, because there are many many motor and non-motor symptoms under the umbrella label of Parkinson’s Disease but each individual experiences some of them, rarely all of them, in varying degrees.

In aviation, when one pilot is handing responsibility for the aircraft over to a colleague, the phrase often used is “you have control” and the pilot taking over replies “I have control”.

Medical and health professionals have a wide range of diagnostic tools, therapies and drugs at their disposal to help each of us with parkinsonism.  Once a diagnosis has been reached, we need to decide how we are going to interact with these professionals going forward.  For me it is simple.  “I have control”, I want to be #incontrol of my parkinson future.   I choose to take full responsibility for fighting the battle against the insidious and encroaching symptoms of the disease and I will seek expert review on an appropriately regular basis.

In addition to reading widely about the condition (anecdotal articles in magazines to scientific papers somewhat beyond my comprehension!) I joined Parkinson’s UK, I support Cure Parkinson’s Trust, and I identified which medical and health professionals should form my home team, to help me keep #incontrol of my disease.

In the beginning, compared with now, my symptoms weren’t nearly as intrusive, but nevertheless I divided them up according to which medical and health professionals would be best at helping me manage them.

Speech and Language 

I didn’t really know much about this therapy (I probably still don’t, if I am honest) but assumed that it was mostly to do with the spoken word.  Wrong!  Speech and Language Therapy is essential for those of us with parkinson’s who experience problems with swallowing as well as problems with speaking (volume and tone as well as word-forming) and understanding the spoken word.  Over the years in addition to attending an annual review session, I have been included in a parkinson’s group therapy based on LSVT LOUD.  I have a note of exercises to be done to maintain vocal chords and to help keep my tongue muscles properly mobilised.   I experience auditory dysfunction which prevents me following conversation when more than one person is speaking, so I have been given strategies to help me manage this. When I find others asking me to repeat what I just said, or replying with an answer to something I didn’t just ask, I know I need to work harder at my SaLT exercises – they really do make a world of difference.

Diet

Protein can impact the efficacy of parkinson’s medications, so it is important not only to take meds at least 30mins before food but also to reduce the intake of protein overall.  As gut motility can be affected by parkinson’s, a healthy and well-balanced diet is essential, as is drinking plenty of water every day and, obviously, to use common sense when partying or drinking alcohol.  I have a complex of non-parkinson issues that affect my gut and I regularly see a gastroenterologist for these so as the parkinson’s problems have begun to encroach, although it has taken a long time to get tests scheduled, I am beginning to regain some semblance of being #incontrol…for now!  It is also possible to be referred to a dietician if you find it difficult to find ways to modify diet (residue and fibre) to keep the system working effectively.

Neurologists

There are many kinds of neurologists but the “type” people with parkinsonism should ideally see are movement disorder specialists preferably with a special interest in Parkinson’s Disease/parkinsonism.  There are no cures (yet) for PD, so the best any neurologist can do for us once a diagnosis has been arrived at, is to identify the moment at which medication should be introduced.  Many parkinson’s symptoms are similar to those of other diseases and the pace at which symptoms progress can indicate something other than classic idiopathic parkinson’s, so neurologists have the unenviable task, sometimes, of having to adjust a diagnosis.  There is no single test that can confirm parkinson’s ab initio and for most people, the diagnosis is established when symptoms respond well to medication.  There are many medications now in use to help us, and many of them have unpleasant quasi-toxic side effects.  It is therefore vital to take the medications prescribed, exactly as prescribed, and to report accurately on the effects felt.  Only then can a neurologist, or Parkinson’s nurse practitioner (who you may see instead of a neurologist), truly help you find the drug regime that suits you best.  Deep brain stimulation and new research is opening up the world of possible treatments available for some who may be eligible to benefit from them so… make the most of those precious moments with your neurologist.  They are pure gold and can really help you stay #incontrol!

Occupational Therapy

I haven’t yet needed the advice or help of occupational therapy, but as I wish to remain as independent as possible, I know that these will be the experts I must seek out when I am no longer #incontrol of even routine activities.  Parkinson’s UK has an excellent explanatory leaflet here.

Physiotherapy

Most of us may only have worked with physiotherapists if we’ve suffered a sports injury, or needed help with mobilisation after surgery.  The idea, then, of seeing a physiotherapist before there is a major problem is a little alien, but it is really important to learn how best to exercise and move to keep parkinson’s problems at bay and stay #incontrol of mobility.  Walking, turning, trying to swing arms, not bumping into things, avoiding tripping, maintaining balance can all be helped by physiotherapy.  Since 2006 I have requested physio once and was referred to a rehab physio department where I had 8 one-to-one sessions and came away with a list of exercises which I have continued to do, pretty faithfully, up to now.  I think at some point during this year I may find out if I can be re-referred as my symptoms are so very different now.

GPs (family doctors)

Last in my list but by no means least are our beloved GPs (family doctors).  The majority are very busy individuals who see a huge number of patients with a wide range of problems every day.  Some may have an interest in movement disorders and even parkinson’s disease, but even if they don’t, they are our first port of call for all our medical needs.  We can’t expect them to be experts, but we can expect them to support the recommendations of our neurologists, listen to our medical concerns, prescribe the medications we need and refer us, as appropriate, for therapy sessions.  it is important to have a good GP to help us identify which new or different symptoms may be part and parcel of our parkinsonism and which may be unconnected.
Thanks to these experts I believe that I continue (mostly!) #incontrol

@joannekarma
#RCtheParrot

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jsbcoo7

Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

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