Looking forward.

Today we woke up to the joyous realisation that Little Girl’s last suspicious-looking chicken pox blister was no more, and so – after a long-overdue Body Combat class on my part – we hopped in the car and started driving, Googling where to go as we left. We ended up visiting Clandon Park near Guildford; a National Trust-run stately home that was devastated by fire in 2015. The mansion is surrounded by scaffolding and, provided you agree to wear a chic hard hat and hi vis combo, you can enter part of the house and take a look at what’s left and the extent of the work to be done in what I believe is a 30 million pound rebuild. Crazy. We usually stick to walking around the gardens at National Trust places, this being the slightly less hazardous option when you’ve a 4- and a 2-year-old in tow (especially a 2-year-old who hasn’t been out for a fortnight). However, the simple mention of ‘giant Lego in the basement’ was enough to get the kids on board here; in we went, Little Girl singing Bob the Builder, C shouting about the aforementioned Lego and where we would find it.

We bought our National Trust membership around Easter time with the intention of using it when meeting up with friends en route to visit my parents in Northumberland, where we would have a long-deserved break, as well as, obviously, whilst up there and back in Surrey. Of course, that trip was cancelled when Tom was told completely out of the blue that he had cancer and had to have surgery almost immediately.

It’s been a stressful few months since. Tom has had chemo, and whilst he has recovered well physically, the mental toll of what he has been through in such a short space of time has been heavy on him as well as, to some extent, me. This has definitely been compounded by both kids having chicken pox one after the other, but they have finally recovered after a truly awful few weeks of being stuck in our tiny sauna of a house, with me rapidly running out of things to entertain them with and trying not to spontaneously combust.

My PD has been the last of my worries, but at the same time I didn’t need much of an excuse to let my exercise regime slip, mainly due to being stuck indoors with either one of the crazies for weeks on end. What I’ve come to realise during the past couple of months is that whilst I cannot always control my PD symptoms, even with drugs, I can control what exercise I’m doing and what I’m fuelling my body with, so I’m now making some positive changes in both respects: upping the exercise and watching what I eat.

In better news, Tom’s white blood cells are looking good after the chemo, both kids will be back at nursery this week (I do love them, but I also love my sanity), and we can finally start to clear our minds and look forward to some exciting upcoming events: our son starting school in September, for example. Our trip up north is also finally being re-scheduled for August, which means we’ll get some time and space away together as a family, and to see my parents and some good friends, which makes me very happy.

Time to look forward.

Hard hats on.

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PD / TC

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Not your average 30-somethings: husband and wife with Parkinson’s and cancer.

I’ve been a bit off the radar lately. Things have been a bit hectic since my husband’s cancer diagnosis, surgery, and, more recently, chemotherapy. Whilst he’s doing remarkably well, it has been a trying few months. Cancer is confusing. It’s a dark place; a pitch black, unfamiliar bedroom where, when you wake up, for a split second you don’t know where you are, your stomach turning momentarily until you realise you knew all along. It’s scary, because it’s unknown, but also oddly normal. It’s hard to explain.

I’m pretty tired at the minute, but that’s not unusual for me. I like to cram as much into a day as possible, so if I’m not working or looking after the kids, I’m volunteering at a local charity shop. I love my volunteering role, in part because I feel like I’m giving something back, but mainly because I adore the people I volunteer with (as well as many of the lovely customers), and they genuinely seem to care about me, too. If I don’t have enough time to stay, I often drop in just to say hello, have a coffee and a chat. It’s a little haven. A surrogate family. My exercise routine has taken a bit of a backseat lately, however. That’s something I need to work on soon, when things get back to normal, for want of a better word.

That all said, I’ve been stuck indoors for the best part of a week. To add insult to injury, my son caught chicken pox recently. Just what you need when your husband’s immune system is compromised. We were hoping he’d get it and be done and dusted with it before starting school in September, but the timing was truly impeccable. I’m still waiting for my two-year-old to show signs of having it, but nothing as yet. Having to sleep on the floor between their beds was a recent highlight, as getting up from my own bed every 30 minutes/hour to settle my son in the night was just too onerous. There’s very little you can do other than give cuddles, creams and Calpol, and it’s heartbreaking seeing your baby in pain, even if it is a common childhood illness that most kids get and passes quickly. Staying indoors for long periods doesn’t half take its toll on your mind, though. Considering he hasn’t been out at all, my son has coped amazingly well. I’ve tried my best, but I’ve definitely been very short-tempered at times.

Our friends have been amazing, as always. Friends who bring/send food, give lifts and provide entertainment, parent friends who offer to help with the kids even though we only know each other from chatting at the nursery gates. Friends who plan to visit from afar and then can’t come because of the stupid chicken pox. Friends who offer space. Friends who are just there, even if not physically. We are lucky to have so many wonderful people in our lives.

Parkinson’s hasn’t really featured lately, although obviously it’s always there, a recurring, perpetual motif.

When all this is over, we really need a holiday.

Who’s that trip-trapping over my bridge?

My daughter is fascinated with fairy tales at the moment. Funnily enough, her newfound love for the Three Billy Goats Gruff has coincided with my first ever experience of being trolled.

Off the back of the BBC article telling my story, which was published on World Parkinson’s Day this year, I was overwhelmed with messages of support and love, for which I am so grateful. I was approached about telling my story by Parkinson’s UK, who put me in touch with the journalist who wrote the piece. Just to get things clear: I write my blog to raise awareness, or consciousness, of Young Onset Parkinson’s (YOPD) and for the cathartic experience writing offers me. I do not write for any financial or other gain.

Among the many positive responses to the article, I only received one heavily critical Tweet about our decision to have children, in which the OP indicated that my children hadn’t chosen to be “born into misery”, and how selfish I am for “putting kids into the world, while knowing she won’t be able to give them the care they need”.tweet

I was then asked to explain how I care for my kids. “Or not. Be honest.”

So, I give you: a day in my life. Today, in fact. Why not? It’s pretty representative of our routine. You might find this blog entirely boring. But it’s a clear reflection of what we did today.

I start my day in the early hours; awoken in the middle of the night by my 2-year-old. She gets in our bed and starfishes, out for the count for the next few hours. Husband snores away. I get a bit more sleep but at 6 am, when my son wakes up and joins us, my husband gets up with them for a bit as he knows I didn’t get much sleep due to being perched on the outside of the bed. He also knows I’m going to be on my own with them for two days, so he gives me that little lie in. I’ve been doing most of the lates and earlies lately, so this gesture is gratefully received.

I get up at about 7:30 and take my meds, drink my coffee, then get myself and both kids ready and pack everything up for their swimming lessons. Anyone with two kids under the age of 5 will tell you how long it takes to get out the house just to go to the shop; preparing for swimming lessons is an operation requiring military precision.

(Forgot to mention that my 2-year-old is potty training: add having a nappy-free 2-year-old to every step of today for the ultimate parenting experience, featuring several wins, and some losses, i.e. when bum and toilet don’t quite meet. Fortunately, today, the wins prevail.)

I get us out of the house on time (another win), and off we go to the leisure centre. Did I mention I walk everywhere? My daughter goes in the buggy, and we have a buggy board, so my son rides on that. As far as I’m aware, I just look like any other (tired) parent in town.

My son goes in the crèche – which he loves, as it’s like soft play – for an hour, whilst I take my daughter to her toddler swimming lesson. I swim with her. It’s a lovely 30-minute session that we get to have together every Friday. I get us both showered and dressed afterwards and we go to pick up my son for his lesson.

I get my son ready for his lesson, and drop him at the poolside with his instructor, then I buy my daughter a packet of Pom Bears for her to eat whilst we watch my son in his class. I took him swimming myself earlier in the week, and he jumped in for me (which he never usually does for the teacher), so I’m keen to see if he’s brave enough today. He is. Proud parent moment. I give him a big thumbs up through the glass and he grins. Melty heart moment.

I get my son showered and dressed and they both have a drink and a snack, and we go straight home today as I know I already have everything I need to make lunch, but we often pop to the supermarket or in to say hello to the staff at the Oxfam shop where I volunteer on an ad-hoc basis, as it’s on our way home. Living in the town centre definitely has its benefits. I love being able to walk everywhere. We go out more than once pretty much every day.

We get home and the kids are tired, so I let them watch some fairy tales whilst I make their lunch. Just sandwiches, strawberries, cheese, etc. I call this “picnic lunch”. They love it. Whilst they eat, I do some work. They don’t go to nursery on Fridays and I don’t usually work when I have them, but I have a deadline and a couple of things to check, so on this occasion I work for a bit while they eat. And, when they both sleep after lunch – which they do today, mainly as they are shattered from swimming – I work throughout their slumber, knowing I’ll get finished, so that when they wake I will be able to give them my full attention.

As soon as my daughter wakes, we watch the rest of Aladdin together, having started it earlier, pausing it when my son drifted off), then we go out to buy ingredients for DIY pitta bread pizzas. I treat them to a trip to the Oxfam book shop – we have a really lovely one in Farnham – and spend £1.98 on a Spiderman DVD and Humpty Dumpty book (the latter has already been kicked under the sofa).

When we return, after popping into a few other shops, I Skype my parents whilst I chop up pizza toppings. The children tell their grandparents about jumping in the pool and about their ‘new’ book and DVD. I talk to them about how I’m on my own for a few days whilst my husband works at an event in London; that I’m glad he has that distraction this weekend given that he’s seeing an oncologist early next week about his cancer treatment; it’ll take his mind off it.

The kids make their pizzas up and I cook them for them. They are delicious, and quickly scoffed. We eat together.

The kids play, and I run their bath. I bathe them, washing their hair also, since we went swimming today. I then dry them, dress them for bed, blow dry my son’s hair for 20 seconds into a crazy style, which he finds hilarious, jumping up twice to look at himself in the mirror, then read them a Moomin story before putting them to bed at 7:45 pm.

I work on another job until after 9, then I browse my social media, after eating nearly a whole box of orange Matchmakers. Well, I did parent solo today, and tonight, and will tomorrow.

And then I notice an unpleasant Tweet from nearly a week ago. My urge to write, to explain, to educate, to advocate, returns.

I care for my kids. EVERY DAY. I care about them. EVERY DAY. I am a good parent. EVERY DAY. I have Parkinson’s. EVERY DAY. In that order.

The troll lives on its own under a bridge. I live on the other side where the grass is green because I make it so for my kids.

And that, quite frankly, is that.*

fptbty

*Oh, and if anyone else doubts my parenting competency, I’m not writing out what I’m doing tomorrow. I’ll be too tired, as I’m taking the children to a birthday party, and kids + cake = mayhem.

Hurdles.

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.

Awareness.

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.

mde

January.

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.

fptbty

Four.

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

Community.

/kəˈmjuːnɪti/

  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.

https://youtu.be/FnNr8gNZ8pc

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.