Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

Introduction

11 Comments

This blog is about living with Parkinson’s disease.

Although many people with this condition are older (symptoms most commonly appear after the age of 50), it is possible to get Parkinson’s at a younger age; this is known as Young Onset Parkinson’s.

I was diagnosed with Parkinson’s in the autumn of 2009, at the age of 38. I have two young children (they were 5 and 3 at that time), and a career that I am still hoping to return to.

Although I have contributed to a multi-author blog in the past, this is my first attempt at blogging solo. My intention is to record how I was diagnosed, how the condition progresses, the medication that I use and any other related topics. I’ll also look out for any relevant news items or useful sites.

Read ‘First Symptoms’

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11 thoughts on “Introduction

  1. Hi Amanda

    We are following your blog and finding it very interesting.
    Conchita and I send you love and strength from Madrid. You are in our thoughts and we wish you the very best.

    Big hugs from

    Andrew and Conchita

  2. Amanda,

    We could pass the link to Conchita’s co-workers around the world, as I think you know she works in clinical research.. It might be a way of getting a wider audience and hopefully stimulating a little more debate/interest in the ideas you have and the whole issue in general. I won’t do anything until you give me permission to do so but I feel it could be a good idea. The more people who get involved in dealing with the issues you are facing and the more contact you can generate here with people in the same postion, the more this initiative will mean and the more meaningful support you could receive. (IMO, of course – you may disagree for which reason I don’t want to try to involve people before checking with you.)

  3. Go for it, Maki. It’s a public blog, I’m writing it so that others affected by the condition can read it. Hopefully we can all learn more about the progression together.

  4. Will do then. The response may be overwhelming or otherwise but they are present in some 50 countries. We’ll get the link posted on their intranet. Cheers!

  5. I just spent the last little while reading your blog and I just wanted to say how much I appreciate blogs like yours.

    I’m going through some possible early onset Parkinson’s symptoms with my boyfriend, he’s been to see doctor’s and whatnot but we still haven’t found any answers yet. Hopefully we’ll know either way soon. He’s only 28 and the love of my life, so I’m hoping it’s not what we’re suspecting.

    Anyways, I just wanted to say hi and let you know that I enjoy your posts 🙂

  6. Interesting to find this blog. Having recently been diagnosed with Parkinson’s and in the process of getting my medication regime sorted I was looking for information about dark chocolate and dopamine. And I find someone reasonably local in Hampshire blogging about the subject (I’m in Berkshire, UK).

    Anyway, after reading about this earlier I just got back from Tescos, armed with a couple of bars of dark chocolate, 85% variety. Me and chocolate have always had a close acquaintance, but up til now I’ve largely been committed to the milk variety. I hadn’t realised that dark chocolate might be a help for my PD….

    Anyway, best wishes and thanks for sharing your experience

    • Andrew, thank you for your comments. I was particularly interested (albeit in a theoretical way) in your description of the DatSCAN in your response to Deciding on Medication.

      When you said “Berkshire” I immediately thought “Newbury!” (which is less than 10 miles away from us) but you mention elsewhere that it’s the eastern end of the county, so I’m guessing that you are closer to Maidenhead. Still, nice to have met you (virtually), and I hope you continue to drop by, possibly with a nugget of information or insight, or just to say hello.

      • Bracknell, actually. Northern side, closest to Maidenhead/Windsor. However I grew up in Eastleigh so I am familiar with southern Hampshire. We still have family there so I’m using the M3 now and again.

        DaTSCAN was very worthwhile, but unlike MRI is a precious and limited resource. I was informed that as they have to ship the radioactive material in specially from Germany, missing the appointment would cost £700 – the tracer could not be kept and would have to be thrown away. And that’s just the cost of the tracer – staff and hospital costs would be on top. As this has to come out of your GP’s budget it tends not to be used regularly. But it’s about as close as they can get without doing a biospy.

        DaTSCAN can measure levels of dopamine, whereas MRI can only see physical mass.

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