Over the past five and a half years, I’ve learnt how to overcome obstacles. I’ve hurdled over the tremor, stiffness, sleep paralysis, anxiety. I got married, gave birth twice, and forged a great freelance career out of the education I worked so hard for. I jump the PD hurdles every day. I sometimes stumble, but – with the support of my husband – I always get back on my feet, and honestly? We’ve been smashing it, considering how high we’ve sometimes had to jump.

However well you’re doing, though, it seems the hurdles just get higher. Or, as a friend put it recently, sometimes life throws rocks at you.

My husband has cancer. Testicular cancer, to be precise (well, his urologist is 99% sure – that tiny 1% and very unlikely doubt would only be discovered on analysis of the tumour). “You will be cured”, said the specialist on diagnosis, a matter of weeks ago. “If you had to pick a cancer to get, this would be it”.

My husband – the kindest, most patient man, who has been jumping the PD hurdles with me for over half a decade – has cancer. However curable, it’s really un-fucking-fair.

I have to hand it to the NHS for the rapid care Tom has received. Within 3 weeks he was seen by a GP, had an ultrasound, given the results, referred to a urologist on a 2-week wait, diagnosed, had blood taken, CT scan, pre-op and surgery (orchiectomy) to remove the tumour. He’s been resting at home for almost a week since his op, and is doing really well. We’ve barely had time to think; a whirlwind fortnight we’ve had, that’s for sure. Now, we must wait for the results to find out the type and stage. Testicular cancer has an extremely good prognosis – a 99% survival rate if caught at stage 1. It’s scary, but we’re feeling positive that everything is going to be fine.

It’s my turn to help my husband overcome this obstacle.

Good job I’m a pro-hurdler.



I haven’t had much time to write, lately. Another of those busy spells where I blink and we’re already a third of the way through the year, 5 months from my eldest starting school, and the summer term at nursery about to start. It’s true what they say about time passing as you get older; each year that goes by seems to go quicker – albeit no less uneventfully – than the last.

It was important to me to try to speak out for World Parkinson’s Day this year, so when I was contacted by the Media Team at Parkinson’s UK, I knew it was the right time to try to make an impact. Fortunately – given some unforeseen circumstances, which I’ll explain in due course – it involved little effort; a few phone calls and emails some weeks prior to its publication was all it took on my part, with the rest of the hard work done by Lucy Wallis, who wrote the piece, which can be found here.

I’ve had some wonderful feedback and messages since the article was published, only a matter of days ago, and these words of support from people who care, and appreciation from people who now feel less isolated knowing they are not alone living with this condition as a younger person, are the reason I talk about my Parkinson’s. They make it all worthwhile. It is so little known, little understood, and the only way it can begin to be tackled is by being spoken about – rather, shouted from the rooftops – by the Parkinson’s community: most importantly by patients themselves, loved ones and caregivers, as well as healthcare providers. It’s also vital that, in order to have an impact, the message is also heard by people without Parkinson’s, and I think this was achieved via the BBC.

Today I popped in to see a local company called the Farnham Foot Clinic, where an event was being held to raise funds for Parkinson’s UK. The team contacted me via Twitter, having seen the BBC article I featured in, and I was privileged to drop in for a coffee, meet the team and make a donation, all while trying to rein in the cherubs (who enjoyed a very delicious chocolate cupcake). You can read about the fundraiser being supported here. The clinic – which collected £173.13 in donations and whose staff are donating a further £416 from appointments today – is fundraising until the London Marathon takes place towards the end of April.

Anyway, this is just a short thank you to everyone who read the article and to all those who have reached out to me since. It means a lot.💙


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.



Some people say January feels twice as long as a normal month – the post-festive 31-day slump; the one where you’re poor, chubby and tired. Well, I’m frequently those three things, so there’s really nothing new there (along with my newfound exercise regime, I also seem to have acquired a liking for Cherry Bakewells: I ate three in a single day last week. Two, I think, might be passable as acceptable; three is definitely greedy.)

Contrastingly, though, I don’t feel like January dragged. I had a good month work-wise, and balanced exercising and volunteering quite well around that and (obviously) the kids. I need to work on getting more sleep, as I always go to bed too late and then struggle to switch off. But I know that, and I’m working on it.

Weather-wise, on entering February we seem to only just be hitting peak UK winter, because it’s freezing out there. With just a smattering of snow on the ground, my Parkinson’s symptoms are exacerbated by the drop in temperature. When out in the cold air, my left arm intermittently trembles and seizes up. It’s annoying but manageable.

I made it out to the leisure centre on Friday morning, anyway, for the kids’ swimming classes followed by soft play, so I felt pretty good on Friday afternoon – especially as they both then slept for a while. Got to love a double naptime. I should have also closed my eyes, but my brain was too switched on. While I can type, I will, I suppose. And while the kids still want to sleep, I will let them. They won’t be little for long.

We’ve had a quiet start to February, with few plans this weekend. I think it’s good to have nothing on from time to time, to just be a bit lazy. I did get out to the gym this morning for a quick personal training session, though, followed by an hour’s Body Combat class, and apparently it was minus 6 outside when I left at 8 am, so it hasn’t been completely sedentary. I’m really starting to see the benefits of more rigorous exercise – my gait and balance, in particular, seem to have improved – and should probably look into diet in more detail.

That said, I’m not ditching Mr Kipling just yet.



I haven’t written in while, I know. This is partly due to the hectic schedule I seem to be following at the minute, genuinely not finding the right time, and partly due to the fact that when I have things in my head to write down and need to type, my brain can’t seem to send the message to my left hand to contribute. Being a translator and transcriber, I often have to type a huge amount for work, and there’s only so much one-handed typing I’m prepared to do.

Talking about my hectic schedule, it’s been a crazily busy week. I’ve been so tired, I washed my hair with shower gel the other day (and the result is certainly not a look I would recommend).

My boy just turned four.

I went for a coffee with a friend the morning of his birthday, and we realised we were sitting in the very café where I had my baby shower – in labour – three weeks before my due date, four years ago. I suppose because he was slightly premature, I either didn’t realise at first that I was in labour, or I couldn’t get my head around the fact that he would be early. That’s probably why instead of saying ‘I think I’m in labour’, I said ‘I don’t feel very well’, so all my guests just thought I was feeling a bit poorly. I remember staring across the table at my sister in a desperate bid to send some kind of telepathic message to her, because at one point I began to find it difficult to talk, and couldn’t understand why she wasn’t receiving “I’m in labour!” loud and clear. Probably because all she was getting was the strange, constipated look on my face. On ringing the hospital, the midwives clearly didn’t think he was going to make an appearance, either, instructing me to go home and have a bath and two paracetamol, which I duly did, abandoning my guests with the promise of dessert another time from the café owner. We made it to the hospital with half an hour to spare before he joined us, all 5 pounds 11 ounces of him, two puffs of gas and air for pain relief later. I suppose not that many people can say they gave birth naturally after very little pain relief on the day of their actual baby shower. Perhaps as few as those who can say they are a new mother at 31 with Parkinson’s.

As I mentioned, I was quite unwell during my first pregnancy; not so much because of my Parkinson’s, but due to a gastrointestinal problem, which I’m glad to report has largely been under control since my son was born. As a result of being ill, however, I didn’t enjoy pregnancy in the way I always thought I would. I wasn’t that glowing or radiant expecting mother but pale – almost grey – and anxious about pretty much everything: had I been right to continue on a low dose of my medication? Would it have affected my baby? The scans didn’t indicate any kind of abnormality, and I was monitored more heavily than a standard pregnancy, but I was still worried. Would I cope as a parent with Parkinson’s?

My bright, energetic, inquisitive four year old would indicate that I was right in every decision I made. Don’t get me wrong, I’ve had some extremely challenging times, not just with physical issues, such as those related to holding and dressing my baby, but emotionally, too – breastfeeding was something I always thought I would do, but on being advised that there was a high risk of drug toxicity passing into my milk, we prepared to bottle feed. My milk came in only for a day or two with my son; there really wasn’t much there. The emotional turmoil at this point was quite traumatic for me, but only because I felt Parkinson’s had taken away my freedom of choice, not because I think bottle feeding isn’t OK. I’m a firm believer of fed is best. (With my daughter, and on different medication, I actually produced no milk at all, which, combined with being a pro bottle feeder – knowing what you’re doing helps – minimised the emotional impact the second time around).

Ultimately, though, having children was the right decision for me and my husband. It’s what we wanted. They keep us on our toes and keep us moving forward without dwelling on the potential gloom of my diagnosis. They give us so many other things to think about, they quash any selfish concerns because they are our number one priority. And when you have children to think about, it’s hard to find time for self-pity or fear for the future. Because your future looks brighter with them in it.

With love.

baby charlie



  1. A group of people living in the same place or having a particular characteristic in common.
  2. The condition of sharing or having certain attitudes and interests in common.

I was diagnosed with Parkinson’s in August 2013 at the age of 29. For quite some time, I kept my diagnosis to myself, only revealing it to my close family and friends. My coping mechanism at the time was to throw myself into my work; I didn’t take a single day off during or in the months that followed my diagnosis, only time out for hospital appointments, blood tests, brain scans, etc., returning to work or working from home in and around these. Outwardly, I did my best to ignore the fact that there was anything wrong with me. I was scared, but desperately didn’t want anybody to feel sorry for me. I didn’t want it to become an excuse for anything. And it wasn’t. I continued to do well at work, my friends and colleagues thought I was fine. Looking back, however, keeping quiet took its toll on my mental health.

I trawled the internet but found few resources and little information about Young Onset Parkinson’s; on the Parkinson’s UK chat forum, even the other people with PD would say how, being so young, and pregnant (which is uncommon, or perhaps just unspoken about), they felt sorry for me, which was the last thing I wanted to hear. Then I crossed paths with Zoe, my first beacon of light: a 30-something living with Parkinson’s who was also looking for younger people to chat to, to relate to. This was the beginning of the start of my acceptance of my condition. Meeting Zoe and knowing that (sadly) there were other younger people like myself with PD, being able to just talk about what was happening to us, was, in some way, healing.

Then, in June 2015, a friend sent me a link to an episode of the Jeremy Vine show on BBC Radio 2 along with a kind message of support indicating that having listened to the show, which featured someone with young onset Parkinson’s, they had some idea of what I was going through.

So I listened.

I was astonished to find that I was hearing a young man, David, diagnosed at 29, just like me, talking about his Parkinson’s on the radio. In the early days of my diagnosis I could barely say, “I have Parkinson’s” out loud without wanting to cry; my emotions were all over the place. I immediately emailed the Jeremy Vine show to ask how I could reach out to David, but I heard nothing back.

As fate would have it, however, Zoe had connected with David, who had in turn reached out to several other people, including Martin Taylor, with whom he established the (now defunct) Young Parkinson’s Network. This was the real turning point for me. There were people like me with PD. Working age people. People with young children. And whilst we only sporadically chatted via Google Hangout video calls, by posting content or replying to posts on our forum, I knew they were there, and that was so important.

“I want to communicate with real people who live with it every day. See it like me from my perspective. Know how I feel… There is no-one to blame. So don’t hide away, or be afraid of what people might say. We have Parkinson’s. We are special, not different. You can still make a difference.” – David Sangster

Roll the clock forward a few years and you don’t have to look as hard to find an ever-growing online network of young people with Parkinson’s, on Facebook, on Twitter, and I haven’t stopped listening since.

With that, I’ll leave you with David’s latest Parkinson’s awareness video – the Parkinson Appendix – which he has created for the World Parkinson Congress in Kyoto later this year. As an ambassador, he can’t win, but his creative talent should be shared far and wide.

This is our community.

Thank you, David Sangster, for helping me and so many others to find our voices, our community, and a better understanding of our Parkinson’s.


When I first went to see my neurophysiotherapist, I didn’t have any expectations. I suppose I didn’t really know what it would entail, or what the aim would be; it certainly hadn’t crossed my mind that only a few weeks later, I would be signed up to the gym and exercising five times a week. But having heard from countless sources that exercise is possibly one of the best ways to look after yourself when you have Parkinson’s, and now that my kids are both at ages where, whilst I still feel tired, I no longer feel like a maniacal zombie, I seem to have found a motivation to become active that I never, ever, thought would exist in me.

Whenever I’ve exercised in the past, it has nearly always been part of a drive to lose weight. About 10 years ago, when I had only lived in the south for about a year, I was actually a member at my local leisure centre – the one I’m currently signed up to – and I categorically hated going to the gym. Classes, I enjoyed. But the gym? It really wasn’t for me. Skip ahead 10 years and for the first time in my life, I am 100% motivated to be as active as I can, but this time, for a very different reason. Because I want to be strong. Because I want to be able to look back in another 10 years and thank myself for trying. Because I have to, and I want to. And yes, going to the gym plays an important part in the training I’m doing. And honestly? I love it. Whilst I already lead quite an active lifestyle (given that I walk everywhere, often with a buggy and two kids in tow), I want to be physically fit, and I want to see benefits – whatever they may end up being – in relation to my PD.

I was going to sign up to my local leisure centre anyway, but then I remembered something Heidi Reynolds* told me some time ago about a GP exercise referral scheme, where you get a 12 week referral to exercise with structured personal training throughout, with a view to achieving your desired goal. It’s certainly not something that is widely advertised – I consider myself well-informed when it comes to my condition, and hadn’t heard of it – but it’s definitely worth looking into if you’re thinking of starting to become more active. On mentioning the scheme to my lovely neurophysiotherapist – having already kick-started my exercise regime on a free 7-day pass, and, I suppose on seeing how keen and committed I was – she rang the leisure centre the same day, had the forms sent over and filled them out, then called me to pick them up from her that same afternoon. And so I did.

In my area, the referral costs about £85 (including the initial £15 sign-up fee) for 12 weeks of pre-paid unlimited access to the gym, classes, and pool, but, most importantly, you get regular one-on-one personal training sessions with a qualified instructor at the gym, who will create a tailored workout for you based on your exercise referral: mine is, unsurprisingly, all about strength. There is the option to pay-as-you go, but I’m a firm believer that if you’ve paid for a subscription up-front, you’re more likely to want to get the most out of it.

How frequently and intensively you work out on this scheme is entirely personal to the individual. Last week, for example, I did my 30-minute cardio/weights training programme on three different days, a 45-minute Body Combat class, a 30-minute swim, and my usual 30-minutes in the pool at my daughter’s swimming lesson on Friday morning (apparently, flinging my toddler around the baby pool singing nursery rhymes counts as proper exercise – who knew?). And I have to say: I am already seeing benefits. Whilst I did feel a bit more rigid in the first few days, I now feel like my tremor is slightly more muted, and although I’m still tired, I somehow feel more energetic, if the two aren’t mutually exclusive; perhaps I just feel stronger. My appetite has changed, and I’m craving healthier choices than before. Other health benefits I hope to see include improved sleep and balance/gait.

And the best bit? Mentally, I feel like I’m in the perfect place to succeed. The best bit is that I’m only just getting started.

*Heidi was diagnosed with Parkinson’s in her late 30s and set up a closed Facebook group called Start Living Today PD, with members across the globe; an online community where both people with Parkinson’s and their friends and family alike can find support and support one another.

For more info on the exercise referral scheme, talk to your GP.

My (birthday) girl

My baby is two tomorrow. Two whole years of my whirlwind girl.


When I fell pregnant with my daughter, I wasn’t in the best headspace with my Parkinson’s, to put things mildly. My son was only 22 months old when she was born, and it was hard for him to share me with another tiny human. It was also hard for me, it transpires.

I was quite unwell during my pregnancy with my firstborn, but not because of my Parkinson’s: being very much under-medicated didn’t really matter when I fell pregnant for the first time, as I was less than a year post-diagnosis and we were still yet to get my meds right. No, it was something else. At about 6 months’ pregnant, I was diagnosed with another incurable long-term condition: ulcerative colitis. Currently in remission, I think I’ve only relapsed twice in five years, which is good as it’s a particularly shit disease to live with (excuse the pun). I actually find UC flares more painful, embarrassing and uncomfortable than my PD symptoms, though I’m lucky that, up until now, it’s been quite manageable. During my first pregnancy, however, I was persistently ill with it. I lost a lot of weight. I was terrified of how being so poorly – with all the various issues I was experiencing – would impact my baby. Turns out he was just fine, making a 3-week-early appearance on the day of my baby shower – after two paracetamol and a bath for pain relief – though that’s a whole other blog post right there.

My daughter, on the other hand, was an easier pregnancy in many ways. I was feeling much healthier, and when I went into labour, I was ready. I wasn’t ready to be told, however, that she was back-to-back, and that if I didn’t hurry up and push her out I’d be taken to surgery. I was exhausted, though having gas and air the second time round certainly helped, as well as provided some amusement for the husband for the first few hours of my labour, during which I talked nonsense and generally found everything quite funny. Well, until it wasn’t funny anymore. With us narrowly avoiding surgery, my daughter was eventually born with the help of a ventouse. Swollen, round, with the darkest mop of black hair you’ll ever see on a child. And despite feeling very much in harmony with her, to her cries, her needs, at first I didn’t recognise her. I cried for my son in the hospital. I felt guilty for abandoning him. I was on the same ward, in the very same hospital bed, as I had been with him and perhaps I’m mad but it felt strange, somehow, that she wasn’t him.

We were quickly discharged from the hospital, at my request, despite me being in a lot of pain (but somehow unscathed from the delivery, goodness knows how). I looked at this little bundle and wondered how she was mine. Then, on her first night at home, lying on her back in her Moses basket – right next to my bed – she choked on her milk in her sleep after a night feed. And I didn’t hear her.

Somehow, the lightest sleeper in the household didn’t hear her. But my heavy-sleeping, loud-snoring (wonderful) husband heard something. I remember him asking me whether I’d heard a noise, and sleepily responding that I hadn’t. Rousing myself further to double check, I have never in my life felt my motherly instinct kick in as strongly as when I discovered my baby silently choking right in front of me. And I hadn’t heard her. Instantly sweeping her up from her bed, I somehow did whatever needed to be done for her to come back to her normal self. It’s a complete blur, to be honest; a flurry of emotions which, in that precise moment, led me to understand my real feelings for her.

Although now, looking back, I understand it was because of the trauma of the birth, I still feel guilty about how I felt when she was first born. But I have been hopelessly and desperately in love with her since. My beautiful girl.

mumand baby


Just when I thought perhaps I had been forgotten about again, lost in our underfunded and overstretched, albeit indispensable, healthcare system, I found a letter on my doormat with the referral I had been waiting for.

My lovely PD nurse who I finally met with in August had passed my details on to the neurophysiotherapy team at my local hospital; I had jumped at the chance of being assessed, although – to be perfectly honest – I wasn’t really sure what it would involve. On asking some fellow people with Parkinson’s whether they had any experience of it (so as to gain a bit of insight) it transpired that some have regular sessions and others have never even heard of it before, much like I hadn’t, or, rather, hadn’t known that it was a service at my disposal. Such is the individuality of Parkinson’s: not only does every single patient experience the condition itself differently, but each patient receives different drug therapies, advice and referrals to ancillary services, it seems, depending on the individual perspective and practice of their treating physician. At times I wonder whether there shouldn’t be certain systems in place across the country to ensure that every patient systematically gets to see a PD nurse, for example, but I think we all know it’s really not that straightforward when it comes to NHS resources. I for one, in any case, am very grateful for the care I do get.

Neurophysiotherapy is basically what it says it is. If we split the word in two, we can deduce that:

  • Neuro: relating to nerves or the nervous system
  • Physiotherapy: the treatment of disease or injury by physical methods (such as exercise) rather than by drug therapy or surgical intervention

I’m always at my most symptomatic when I have hospital appointments. There’s something about sitting in a hospital waiting room that triggers every single motor symptom going. It was unsurprising, though, given the time of yesterday’s appointment; my morning dose of meds had well and truly worn off. Unlike when this happens at appointments with my specialist consultant, however – where being symptomatic seems to instantly correlate with increasing drug dosages (which is certainly not always a bad thing, just something I’m keen to put off for a while longer) – I think there was some benefit to attending this appointment at my ‘worst’, so to speak. It really gave the physiotherapist a good idea of the extent of my illness, and what we can consequently do to prolong my physical well-being, as well as giving me a big reality check of where I am right now in terms of mobility.

An introductory chat about my background and medications, etc., swiftly moved on to a physical strength assessment, involving the usual pushing, pulling, stretching and, of course, walking exercises. Idiopathic Parkinson’s tends to be unilateral (one-sided), rather than bilateral (two-sided), at least until the more advanced stages, so it was unsurprising to learn that my left side is noticeably weaker than my right, given that it is my affected side. Five years ago, the only symptom I was experiencing was a tiny tremor in my left little finger. Yesterday, my left arm was a deadweight, my left hand for the most part clasped in a fist, squashed under my left thigh to stifle the obvious tremor being emitted every time I was asked to move it. My left leg is now weaker, also with a light tremor, and my gait is also affected; my balance is far from perfect, though I explained I usually have my kids’ buggy as a prop when out and about, which I rely on more than I realise when walking. When asked whether I ever fall over, my honest answer was that I don’t, but I do occasionally trip, though whether or not I can attribute that to having Parkinson’s is unclear given how uneven much of the cobbled paving is in the town in which I live. But then, on walking towards the mirror, I had moment. A horrible moment of realisation. When I’m not walking with the buggy, I sometimes shuffle. A little shuffle, but a shuffle all the same. And that’s why I trip.

And then the tears came. There’s something about appointments you know you needed, with lovely, helpful, caring staff, and moments of realisation like that, that open the flood gates. For just a few moments, that’s all. But do you know what? I needed it. I’ve always held an element of doubt about my diagnosis in the back of my mind, joking, even, with the consultant that he might have got it wrong. But yesterday I think I finally accepted it. Five years on. Crazy. I’m progressing, which was always going to happen. But I needed this. I need to embrace this realisation and start doing everything I can to improve my self-care so that I can live my best me for as long as possible.

I actually left the appointment feeling really positive. Instead of going home, I went to the leisure centre to enquire about memberships, and came across a staff member who recognised me – it’s hard not to be noticed when you’ve got… no, not Parkinson’s… two very energetic (read: noisy) and, if I do say so myself, attractive, children who attend swimming lessons at the same place, and was given a free 7-day pass. I haven’t mentioned my Parkinson’s yet, but I’m hoping to get some advice on exercises to complement those given to me to practise by the physio, which I duly brought home and intend to complete.

I learned a lot yesterday. Acceptance is crucial. Our disease advances, but we progress.