(c) 	Claire Fackler, NOAA National Marine Sanctuaries

The one skill I want my doctor to have above any other

The thing about a chronic illness is this. More often than not, once you reach a certain stage of disease, it becomes all about self management. Following Deep Brain Stimulation surgery and the early relatively frequent tweaks to the system to achieve optimal treatment, I am now on a 5-6 monthly rotation to see the neurologists at the hospital. In the meantime it is up to me.

Several of my last appointments at the neurology clinic were less than successful from my point of view. I was dissatisfied with the way my case was handled. I was equally unhappy that I didn’t feel it possible to say anything about this. Which for anyone who knows me well, will find that hard to believe, given that I am not known for not calling it as I see it.

Part of the problem is systemic. There is only one hospital in NZ which undertakes DBS (public or private) and the one neurology team including only two neurologists who specialise in DBS and post DBS management. The risks of “rocking the boat” are conceivably high. Another problem was that the doctor seeing me was the senior of the two neurologists, with many many years experience. It does make you feel that challenging his calls would be somewhat rude (when I was a practicing lawyer the one thing I hated above all else was being told how to do my job, followed by people refusing to take on board the advice given). Furthermore, spending 20-30 minutes with me twice a year is hardly (in my humble opinion) that reliable a gauge to my overall health and general well being. This is a problem of resources, which cannot be resolved here. I live in a small country with a comparatively infinitesimal population. Yet I am privileged to live in a society which values the health and welfare of its citizens and we are rightly lauded for having one of the best public health systems in the world. For that I am incredibly lucky and grateful, small complaints aside.

Another part of the problem is due to the effects of the disease itself. I am much slower of thought process, and general cognitive wherewithal, not to mention the physical slow down. During my last appointment I was perplexed. I had gone in with a plan to talk about tweaking my DBS settings and medications and when the plan was derailed somewhat by my neurologist’s comments, I could see the end goal slipping away from me and yet there was bugger all I could do about it. I was frustrated and dismayed when my hesitant questions were brusquely shut down by my doctor. I felt helpless and lacking any control of the situation. Unfortunately I was on my own that day- my loving and supportive wife was unable to get out of a work commitment to attend the appointment. So instead of having my lioness advocate to back my corner I was rope-a-doped, without the stunning comeback of Ali.

What people with chronic conditions like Parkinson’s want more than anything is a semblance of control. It may be illusory, but something is better than nothing. Having my questions dismissed out of hand doesn’t help me and makes me feel unable to control any aspect of the medical management of my condition. I am the first to recognise that doctors are people too and are just as likely to have good days and bad days like anyone else. I know that they can be frustrated by the constraints put on them by the public health system. But in my view, they should remember that while to them, you are just another 20 minute slot in their clinic diary, to the patient, to me, this is my one chance every half year to convey my questions, concerns, fears and anxieties to my primary medical professional. So try and act accordingly.

When I come into my appointment shaking and dyskenetic, don’t just tell me that you don’t think adjusting my DBS settings is warranted. When I ask why that is don’t tell me that I cannot just expect him to up the voltage every time I come in. When I ask whether we could tweak my medications, telling me that “frankly you are on a horrific amount of medications and I don’t want to contribute further to that” is unhelpful. Especially considering the only adjustment to my regimen was one made by you 18 months previously.

I am far from stupid. I may not be the sharpest tool in the box these days but most of my intellectual capacity remains untarnished. It may take me longer than in the past to process things and I may be confused about some things but please understand that in my self management quest, I spend parts of my day reading medical journals and research papers, trying to keep abreast of the latest in scientific and clinical thinking about treatment of Parkinson’s. I do this to be informed. To be a better patient. To be able to work with you, in partnership, to achieve the best outcomes for my health.

But if you want me to understand something, don’t leave me to infer that is what you mean from your comments. Be direct and upfront. I won’t be too offended. If you don’t think I am looking after myself as best I can tell me. Yes I know that I am carrying far too much weight. And I appreciate that this may have an impact on treating me. But if that is what you wish to tell me, please do so, plainly and slowly so that I can understand. I will tell you that it is hard to shift that weight when I can only move as fast as a sloth on barbiturates. Not to mention that at least half of the 10 different medications which I am prescribed list weight gain as a common side effect. With that understanding, together then we can formulate a plan to do something about it. I want you to understand that I am trying to exercise and fight the apathy that goes with this disease. If you think I need a kick up the backside, do it.

I want to understand why you don’t think it is warranted to up the DBS voltage settings. How high can they go? What is the trade off if you go higher now versus long term effectiveness of the treatment of the disease modified by my progression. Shouldn’t I get a say in whether I am prepared to make that trade off? Why should you be the sole arbiter? Of course I am going to listen to your advice. You have many years experience and I would be a fool to disregard it. I understand that part of this is the great unknown and you cannot give me definitive answers in some situations. But at least help me understand why that is and take on board my thoughts and feelings. My kids are still young and need a fit able dad more so now than later. I would trade off more functionality now for less time that DBS can benefit me. Do you see that?

When I ask about tweaking my medications don’t just shut me down. I chose my words deliberately; I wasn’t asking you to increase my already prodigious drug intake, I was hoping to talk about whether there was any changes we could make that would maximise the existing regimen. If there were any substitutions or timing shifts that we could make to take account of my on/off periods. I want you to understand when those are, when I need to be on (like after school so I can help with post school activities and early evening so I can prepare dinner for my family).

What I want from you, most of all, is to listen.

That is the one skill I want from you my doctor, more than any other.

3 Responses to “The one skill I want my doctor to have above any other”
  1. Judith Gunnyon says:

    As a fellow person with Parkinson’s I really appreciate this beautifully written article.
    Adjusting and fine tuning medication for maximum effect and minimal side effects is a very delicate balancing act.

    I believe that I am the expert about my own wellbeing now and in the future and appreciate my Dr and neurologists support, but They do not see me on a day to day basis. The Health system would not survive be burden of care, so the relationship depends on an understanding partnership . I need to be able to express my concerns and have them listened to and worked through.

    I am fortunate to currently have good medical support and I have training and knowledge to make adjustments to medication. I can only hope this will continue and that others will have a good supportive relationship with Health professionals with support for self management.

  2. Tony Leather says:

    I’ve been having symptoms for about 25 years, and I’ve had an official Parkinson’s diagnosis for 20 years now. Since then, I’ve taken an astounding number of pills. I’ve been through physical therapy, speech therapy, and occupational therapy. I’ve tried acupuncture, reflexology, tai chi, green tea, cinnamon, curcumin, fish oil, CoQ10, coconut oil, and supplements I can’t even spell. I’ve given up sports, working for a living, protein and gluten, sugar and financial responsibility. I’ve installed a variety of electronic systems in my house, my car, and my brain and some of them even work. I have volunteered with varying degrees of success as a fundraiser and patient advocate for the Parkinson’s community and have benefited from the friendship and kindness of the many friends I’ve met. I’ve made mistakes, broken some glass, tried to do the right thing and got it wrong occasionally, and in general muddled my way through. I did not do any of it alone; I have had the unfailing support of my family and a wider circle of friends than I ever deserved.

    Parkinson’s doesn’t care – it progresses anyway, and nothing that I’ve done, no matter how beneficial, well-intentioned, or potentially helpful, has had even the slightest impact on the progression of the disease. I knew that intellectually some years ago, but now I am starting to feel it in my heart – this disease is incurable, and after almost 200 years of study, we still don’t know what causes it. I feel a strongly worded letter coming on, but I don’t know who to send it to.

  3. Robin says:

    WOW. So succinct, timely, specific, with problems and issues listed along with suggested fixes.Thank you for taking the time to write this out so brilliantly and completely. I’m printing this out and using it when we interview brain surgeons for John’s DBS which is likely to happen before the end of this year.

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