A day in the life

A day in the life

I get asked ‘How’s your health?’ regularly, and I always answer some version of ‘Fine thanks!’ Which is a limited answer I’m aware, but the alternative is quite long-winded. I always feel that when people ask this question, they really mean ‘How is your Parkinson’s?’, but can’t quite bring themselves to actually say it.

So I thought it would be valuable to provide a fulsome health report, on how I’m doing with the dealing-with-Parkinson’s thing at the moment. The symptoms that currently give me the most trouble are muscle rigidity and pain in my feet and lower legs, and in my hands and forearms, when I wake up at about 3am or 4am in the morning. I take a dose of Madopar when I wake at this time (one regular 125 tablet, and one rapid 62.5 tablet that is supposed to kick in faster). It usually takes about 45 minutes to get comfortable enough to go back to sleep. I’ve found that moving my legs, circling my ankles, crunching my toes, really helps. I’m experimenting with taking more magnesium as well, but haven’t noticed an effect yet. I take a melatonin supplement to help me sleep, and I think it works well, at least my sleep is fairly regular at one block of 5 or 6 hours, plus maybe one or two hours after that, depending on how bad my legs are, when I have to get up etc. I usually go to sleep after I’ve taken my overnight (slow release) Sinemet at around 10pm. I do get the very strange, very disturbing dreams which are common for people with Parkinson’s, and have been noticing the odd time where I’ve been acting dreams out (in minor ways so far, like kicking out in my sleep). Meditation and breath exercises are working really well to help me bounce back after disturbing nights.

I’ve also been noticing a cognitive effect – my search for words has, at times, gotten very slow! I don’t have so much dystonia in my foot lately, or slowness of movement. This has been heaps better since starting on entacapone (more on that later). My bowels are good – at least as long as I eat one kiwifruit a day. Constipation is one of the more worrying symptoms related to Parkinson’s and I’m constantly on the watch for it. I haven’t noticed any speech problems yet either, although sometimes I swallow very slowly. I am super fortunate that I only have mild dyskinesia.

My mood has been mostly positive in the last few months. I’ve been noticing fewer gloomy periods (where I begin to feel like what’s the point, and start making exit plans).

What keeps me well is a complex mix of the right amounts of sleep, breathing and relaxing, exercise, food/nutrition, water, mind training, socialisation, and medication. Its been a bit like having an extra full-time job trying to research and discover through trial and error the best practice on what the right mix is for me. Often there is a gap between knowing what to aim for, and knowing exactly how to put it into practice. I try to improve things little by little daily. I don’t feel like I have the nutrition side nailed yet. We as a family have significantly reduced the amount of meat we eat (at least red meat), and I avoid a lot of dairy although the kids eat a lot more of it. I can no longer just eat anything – the processes of the gut have a big impact on your brain. The effect your gut health has on your brain is huge – not only are your mind and body inseparable you may as well consider them to be one – your body is your brain! This means eating needs to be planned and carefully managed, not something done on the run. Protein is the hardest thing – getting it spread throughout the day, and not having it all at once in a big protein meal at night. If I get it wrong the list of symptoms I’m dealing with is significantly longer. I have to be careful not to limit it too much though, because then my weight goes down. I weigh about 57 kilos right now, which puts my BMI at about 20.2. Which is on the lower side, but not worryingly low. Although I can’t afford to lose much more. Losing weight as a person with Parkinson’s is a worrying sign, it is generally taken to mean you are getting worse, and is co-related with other concerning factors that I don’t need to think about right now!

I think the top three things that I credit how good I feel right now are:

  1. Mind training (dealing with fear and anxiety and other emotions, meditation, using the breath to calm, etc).
  2. Exercise, and
  3. Drugs. Ok?

Exercise

We are born to move. The less you move, the less able you can do the types of exercise that will keep you healthy. I focus a lot more on flexibility now than ever have before – probably more than strength building, and just as much as I work on the cardio side (getting the right intensity of effort going). One brilliant thing I have discovered is that the body becomes better at what you do. It might seem slow going at first, but persistence is worth it. The knowledge that you can do things you previously considered impossible spurs you on. Alongside that it has been proven to prevent neurodegeneration, which is super encouraging!

Mind, mindfulness, relaxing, breathing

Everything you do, including exercise, flexibility, and any aspect of your daily life, is easier and more enjoyable (and you do it better) when you are being in the present, enjoying the moment. Breathing. Yoga (in terms of the mind training and meditation side) and karate have helped me enormously in this.

Big Pharma

a range of pills taken daily

I get up at 7am and take 6 pills. Two are for anxiety/depression (40mg of citalopram hydrobromide which is a selective serotonin re-uptake inhibitor). I’ve been on this dose for a few years now, and I don’t see any point of considering ever coming off it, although I do not know what the effect of them are.

The other pills are Madopar (two pills of different strengths) – which is synthetic dopamine or levodopa. I take two Madopar pills at least 7 times a day, sometimes more. Without them I would move extremely slowly, shake all day, and have varying degrees of pain. And either be very grumpy, very sad, or not particularly motivated to do much. Or a combo – I don’t really know! I take my meds.

I also take 200mg of Entacapone along with the Madopar, four times a day. Entacapone belongs to a class of drugs known as COMT inhibitors. Entacapone blocks an enzyme in your gut that takes off with the levodopa I’m putting in and has parties with it. Actually I don’t think it is known why this annoying little bugger breaks down the levodopa and for what purpose. The effect of taking Entacapone is that it allows the levodopa to last longer. I usually have a full three hours mostly free of symptoms with this combination of drugs.

So that’s it! Easy! Any of that resonate with you?

7 thoughts on “A day in the life”

  1. Emma, you are amazing! Patient with your disease and meds yet reaching out in exercise and keeping great routines.

  2. That is so well written, an excellent blog which will be of interest to lots of people. I have similar, but not as bad, experiences. Not taking as much medication but I’m only 8 months since first diagnosis.

  3. Gosh Emma, that’s quite a regime to cope with. A lot of it resonates with me, though all in all it sounds as though I have generally milder symptoms. My approach at the beginning 6 yrs ago was to do as much as possible to mitigate symptoms before starting medication. The result is similar to your experience but a lot less meds.
    I have a few things that you might consider:-
    Have you had Vit D and B12 checked??
    Massage? Can be helpful
    Can you reduce stress – difficult with job and family, but if there are things you can give up, things you do that don’t serve you, then dump them.
    I take my extra Magnesium as almonds and pumpkin seeds! Yummy and no problem.
    Whilst I am passionate about the importance of exercise, I have found sometimes that I seem to do too much which can feel like PD symptoms, stiffness and rigidity.
    Hope that helps. If you want to exchange experience further do email though I am not Yopd

  4. I’m completely in awe Emma – your honesty, your pragmatism and your strength. I have a lot to learn from you, mate.

  5. Emma you’re amazing and I love you. This was a fascinating read and you are an incredible writer and life-live-er.

  6. I’m sorry I always ask but I genuinely want to know the detail and I try not to ask it first when we catch up as I know it doesn’t define you. You’re doing amazing Btw. Know you can always call me to chat xx

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