Why mummy takes medicine.

I’ve always been very open with my kids about the fact that I take medicine. They see me take my morning dose every day – usually before I’ve poured their milk but after I’ve picked up the Duplo bricks that have been strewn across the floor and are inconspicuously yet hazardously lying in wait for me to trip over them – and then intermittently throughout the day, if they are with me when I take one of my three other daily doses of Sinemet. But whilst I don’t hide the fact that I take it from them, I’ve never explained why. My son turned four in January and my daughter was two last November. They’re still very young. I wanted them to be old enough to ask me themselves and to hopefully understand my response.

This morning, this happened:

“Mummy, why do you have to take medicine?”

I have to admit that I handled the situation pretty well, all things considered. ‘All things’ being: a) not knowing when the question would be randomly asked; b) not knowing how the hell I would answer the question, especially as I would be completely on the spot.

It came at a good time, actually, because my son has been learning about the brain at nursery. I asked him what the brain does, and, after he’d given me his explanation, I told him that the brain also helps us to move our body parts by telling them what to do. For example, if he wanted to kick a ball, whilst he would just go ahead and kick the ball, it was actually his brain telling his leg/foot to do it.

Now, I’ll admit that the fact he was pretending to be Spiderman (spinning imaginary webs and eating breakfast cereal, as you do) was somewhat of a slight distraction, but it was a now or never moment, so I persevered.

I went on to explain that the part of mummy’s brain that sends the messages to move her arms and legs doesn’t work quite as well as everyone else’s, so I need to take medicine to help it work better. He seemed quite satisfied with this response, though when I asked him to relay my explanation, his response was that he couldn’t do ‘all that talking’. Not quite the response I was hoping for. Soon after, however, my husband came downstairs and offered us a chance to recapitulate.

“Charlie, why does mummy take medicine?”

“Because her brain doesn’t work.”

Kind of, I suppose.

At this point (having obviously corrected him by adding the word ‘properly’ to the end of his phrase), to avoid the potential scenario of him responding to a stranger asking ‘How are you today, young man?’ with ‘Mummy’s brain is broken’, I offered the supplementary information that mummy is in fact really quite clever, as well as (unrelated, I know) witty and attractive. Best get the important facts straight.

In seriousness, as my son gets older and both his ability and desire to know and understand develop and grow, he will continue to ask questions and I will openly answer him, and his sister. And I will use the word ‘Parkinson’s’ when I feel it’s necessary, but that time isn’t just yet.

For now, it’s a start, and not a bad one.

mde

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12 thoughts on “Why mummy takes medicine.

  1. Chris Macaskill

    Hello Ellie,
    I’ve just read your story on bbc news, and I hope it doesn’t sound patronising to say you sound like an amazing brave woman. I just wanted to contact you to ask if you have heard about the Ketogenic diet as a way of treating your condition. I have listened to a few experts on Parkinson’s and they are baffled as to how so many doctors refuse to see the obvious connection between glucose and this disease. I know it is easy for me to say “try this….” but from all I’ve heard it really can make a difference. Please -if you haven’t already- look into the connections between ‘ketogenic diet’ (high fat low carbohydrate diet)and ‘Parkinson’s’. Possibly YouTube Amy Berger and Ivor Cummins. Please ignore if you’ve already heard about this and sorry to bother you.
    Best regards
    Chris Macaskill

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  2. Sue Townsend

    How wonderful that you are sharing your experiences. I read your article on the BBC news and have now had a peep at your blog. It is a very hidden condition in younger people and it is great that you can help to inform others that, as you say it isn’t something that ultimately defines you or the choices you make, you live the life you choose and happen to have Parkinson’s Disease. Your children are so lucky to have you as their mum as you are aware of the need to be open and honest and your means of communicating with them will stand them in good stead if they are questioned by their friends.

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    • Rachel

      My hubby started with pd in his early twenties – he’s 72 now! We’ve always approached life as normal. You do right just to answer questions simply but always truthfully to your little ones – that we did with our son. When they are older they will probably read up about it for themselves but as everyone with pd is different every question you answer will be different. Enjoy the journey you have with them!

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  3. JC

    Hello Ellie, I read the article written about you by the BBC and was very touched by your story. My father had Parkinson’s and I saw his courage everyday trying to live his life to the fullest even with the challenges. I saw that one of the side effects of Parkinsons is cramps and it can really be painful and interfere with daily life. I am writing because I recently discovered an all natural product that you may want to try to relieve cramps within minutes (most people use it during sports activities to relieve cramps). I do not have any financial or other incentive to tell you about this product. Only want to mention it in case you want to try it because it may help you a lot going forward and it’s not medication. I believe all cramping remedies currently in the market are medicinal and this one is natural. You can read up on it here and can buy it at this website or Amazon: https://www.crampsaway.com/pages/crampsaway-science. I admire your courage and wish you and your family all the best.

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  4. Julie Eyles

    Hello Ellie, as Parkinson’s is autoimmune and so is Ulcerative Colitis, could I recommend a book – The Autoimmune Fix by Tom O’Bryan. Personally I think everyone should read it, but especially families with AI conditions as they are familial but can be avoided/reversed/slowed. Very best wishes to you.

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