Living With Parkinson's

A Patient’s Perspective

“The world is a tragedy to those who feel, but a comedy to those who think.” ― Horace Walpole.

     Today, I am thinking of perspective.  I will be attending my latest six-monthly neurology review.  This is to assess how Parkinson’s disease is progressing and to review medication.   It is an opportunity for my neurologist and I to explore how I experience Parkinson’s and for us both to ask questions about all aspects of that.  There will be two differences, in relation to this appointment, for me today.

     The first, and most significant, is that I will be meeting a different neurologist for the first time.  Since the day I was diagnosed in June 2017, I have seen the same neurologist; Timothy Lockington.  The appointment letter, advising me that I would instead be meeting with a Dr. Alsowaf for today’s appointment, was completely impersonal.  It offered no explanation as to the reason for the change in my neurologist.  I have heard that my neurologist was planning to retire and rumour had it that he had, but that was the last I heard.  There was, however, no formal notification.  This is short-sighted, on the NHS’s part.  They have given no recognition of the importance of the relationship between patient and neurologist and yet this change has caused considerable discomfort and even some anxiety in me, consequently.

     The second difference, is that the venue I attend for my neurology appointments has now also been changed.  Dr. Lockington saw me at Aldeburgh Community Hospital; just fifteen minutes drive from my village here on the Suffolk coast.  Instead, the appointment letter advised me to meet with Dr. Alsowaf at Ipswich Hospital; almost thirty miles away and around 40-50 minutes drive, depending on traffic.  This, in spite of the fact that the reason I was offered appointments in a local community hospital was because I tend to drive a maximum of thirty minutes to prevent the cramping that I suffer when I drive for longer.  So, this too has shown short-sightedness and inconsideration on behalf of the NHS here in Suffolk.

     I am not suggesting that services have to be provided to me that are not possible to provide.  I recognise that staff changes happen and I recognise that venue changes are sometimes necessary.  What I would say, having run NHS services myself, is that my experience in this situation is a complete lack of caring communication.  With nothing communicated to me about why my neurologist has changed and nothing communicated to me about why the venue has changed, given especially that my existing venue was based upon symptoms management, seems to be very poor treatment of a patient.

     I recently attended an appointment with a client of my own, close to Ipswich Hospital.  To manage the journey, I broke the journey down into stages with a fifteen minute comfort break before each twenty minutes had passed.  So, this meant that my journey there took me around one hour.  That was quite exhausting.  On my way home, that day, I ended up stuck in a diversion from the A12 which, with all of it’s consequences and the extra comfort breaks that I took in order to prevent cramping, took me one hour and forty five minutes to arrive home!  That evening, the impact of such long journey time, was significant.  I was in pain and discomfort as the symptoms of dystonia and tremor kicked in and, through fatigue, the symptom of bradykinesia hit me as well.

     These are not unexpected symptoms, following such a journey beyond my usual thirty minutes limit.  These are known to my medical team.  Yet, in spite of that, here I am holding a letter that requires me to attend a new neurologist and at a distant venue that is known to be very difficult for me to reach and with not the courtesy of an explanation or discussion.

     It is likely, on that basis, that by the time I reach Ipswich Hospital (and eventually find the almost impossible available disabled parking space) that my new neurologist is going to meet a very polite but very pained and disgruntled me!  This may not be the best start for any new neurologist-patient relationship.  All that is in my mind, today, is how I will manage the journey and how I will cope with the symptoms that will arise when I arrive home.  That’s rather unfortunate, for I should be thinking about what I want and need to talk about and ask.

     You see, the other factor is that there is a level of energy required for me to drive for an hour there (taking into account comfort breaks), to then drive around for the usual fifteen minutes of car park space searching, walking to the ward (which also requires that I stop to rest at points), waiting in the waiting room, attending the appointment (which lasts anything from twenty minutes to an hour and a half) and then taking another walk to my car, then a hour to get home (allowing for comfort breaks) and finally getting indoors.

     As I write this, I am remembering how easy it was for me, only a few years ago, to drive down to nearby Ipswich Hospital and work all day there in a demanding role in the NHS, myself. How times have changed and how quickly that change has happened.

     To prepare myself for this outing, as many people with Parkinson’s will identify with, I now have to spend the day, up to the point of leaving home, at complete rest.  In order to give myself the best amount of energy for achieving all that is required this afternoon, I literally have to go and lay down and rest.  This is a disruption to my day, but I have become used to managing life in this way.  I am just frustrated that I cannot attend Aldeburgh Community Hospital, for such a rest would be minimal, compared to the amount of time I have to give to resting today.

     Are you a person with Parkinson’s?  Have you experienced a change in your neurologist?  What was that like for you?  How were you prepared or pre-advised of that change in your treatment provider?  Do you have to build in comfort breaks after driving a certain amount of time?  How do you prepare for several hours of activity?  What type of after-effects do you experience, in terms of symptoms flaring up, following a busy few hours of activity and concentration?

     Are you a neurologist?  Have you seen your own patients experience such changes and how do you provide the best level of communication, support and care at such times?  What would you consider to be best practice in a situation such as this?  Has the patient’s perspective, that I write about here, occurred to you or not occurred to you?

     Wish me luck!  Let’s hope good things come from meeting this new neurologist and, just in case he does read this magazine, a huge thank you to Timothy Lockington for his utterly superb care of me over the past two and a bit years.  I am truly grateful.

(C) Dean G. Parsons.  2019.

4 replies »

  1. I hope your appointment has gone well today and you managed the journey okay and without any holdups. I also have a 50 minute drive to hospital when I see my Parkinson’s nurse, I tend to stiffen up after a long journey. I’m sure you will update us with how you thought the appointment went but I do hope you like your new neurologist. Take care.

  2. Have had same treatment for my wife who’s symptoms have changed for the worse since this happened I wish you all the best

    • Hi Robert. Thank you for reading and for commenting. I’m so sorry that your wife’s symptoms have worsened. I send you both my best wishes. I hope things improve, soon. Kind regards, Dean.

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