When I was diagnosed with Young Onset Parkinson’s Disease at 29, I could never have imagined that I would be blogging about my life by 34, sharing my experiences in a bid to help the next “younger” person diagnosed with this infuriating condition; the next person to be told they have a neurodegenerative disease that usually affects “older” people; the next person to leave hospital feeling confused about the path ahead: who to connect with, how to cope, what to do?
I couldn’t have predicted that, post-diagnosis, I would be told by certain HCPs not to attend support groups because they would frighten me, they would show me what might be in store for me years down the line. With the best of intentions surely behind this advice, I’ll never know which path my Parkinson’s journey would have followed had I chosen to ignore it. It may well have been good advice. Who knows? What I do know is that I wasn’t satisfied with being warned not to reach out to the available support groups, so instead I started doing my own research, found an online network, made friends, connected, and began talking, because I had a story to tell, a need for an outlet, a desire to listen and share experiences.
It’s not impossible that I’d be the one setting up a small, informal support group for people with Parkinson’s living in my area. A coffee or two – and cake – and a chat amongst friends: such was my intention for today’s first meeting. Just five of us, all at different stages, with different stories, on different medication, and all with a common interest: Parkinson’s, and a desire to talk and support one another.
I write – talk – for many reasons. I talk because it helps me to understand my situation. I talk because I think it helps others to understand what is like to live with a chronic condition, namely Parkinson’s, and specifically YOPD. I talk because, frankly, if you know me, I like to talk. And I talk because I like to think it provides support for others who might be in a similar situation to me, who can perhaps relate to me, who may or may not have their own support network.
After six years of talking about Parkinson’s online, I’m talking about it in person, and I think it’s going to do me – and hopefully a handful of others – the world of good.
The day after my #dbs #deepbrainstimulation op this January was my son’s 9th birthday. How my heart hurt that I wasn’t there. That it took 3 attempts to hit the perfect spot for the left electrode. The resulting confusion and paranoia that followed over a 48-hour period and seemingly beyond to the neurologists was simply ‘transient’, but to me it was the most intensely traumatic few days of my life. A sacrifice surely only to be compensated by a successful ‘procedure’. A better ‘mummy’.
Yes, DBS is giving me so many benefits in both motor – and some non-motor – symptoms. But having holes drilled in your head and wires inserted is not easy, and having #Parkinsons is still hard. Because it isn’t a cure.
I met somebody today who stared at me when I was experiencing some mild #dyskinaesia and asked if I was OK. I explained I had #youngonsetparkinsons but that I’d had DBS 6 weeks ago and was doing all right, all things considered. He said, “Well, it can only get better”. I explained that no, it’s still a progressive, neurodegenerative disease, and that no, I wouldn’t get better. There is still so much to say about #PD for those who need to hear it. This is why I still talk about it. I’ll be contributing regularly to a podcast by the charity Spotlight YOPD, “Y:POD”. We recorded episode 1 on 29 Feb, and you can listen to it here.
I saw my consultant on Friday, who hopes the swelling will have completely gone in about 6 weeks’ time. I’m about 6 weeks behind, because of the 3 attempts to place the electrode. My hair hasn’t been washed for another 9 days – and won’t be for at least 2 more – because of the scab on my head, which will hopefully continue to heal and will be cleared by the specialist team on Weds, when I go back to clinic in London again. This said, I’m still doing pretty well.
Special shout out to the mums this week. The ones who lift you up, or catch you – literally – when you need to fall. I love you and appreciate you all very much.
Below: reunited with my children after the first week of being away from them for the first time in their lives. I was in hospital for 2.5 weeks.
New Year’s Eve 2013. Ten years ago. My 30th birthday. As the clock struck midnight, so began the uncontrollable tears. Looking back, it felt like the diagnosis of Young Onset Parkinson’s I’d received that summer had cast a dark, unfair, shadow on my future – despite only having minimal symptoms at the time to speak of – and, as we stepped into 2014, a rain cloud of uncertainty appeared and the tears would not stop falling.
And they fell for some time.
There have been many, many lows over the past ten years. Issues with medications and their side effects. A horrendous drug-induced impulse control disorder I am still pained to discuss openly. Not to mention the progression of my symptoms and the many side effects caused by the multiplying medications I must take daily to function even a fraction as well as I did back on that birthday a decade ago. Varying medications, dose increases, switches, trying for months on end to find the right balance and never achieving it. Medication-induced dyskinaesia (involuntary movement), which is frankly often more insufferable than the symptoms of the disease itself and so ironic to have as a side effect of the drugs taken for a movement disorder (though let’s not forget that PD is so much more than just the shakes). Painful dystonia, bradykinaesia (slowness of movement), tremor, sleep issues, anxiety, and fatigue, amongst many other issues all progressive and degenerative.
But, among all this, the joy. My husband, the calm, kind, grounding force in my chaotic world. My children. My beautiful, hilarious, fiercely intelligent whirlwinds, who bring meaning to my life daily and who I hope will understand, years from now, my choice to be their mother despite my diagnosis. My friends, old and new, who prop me up daily simply with their words of support, even when I still find it difficult to accept help in physical form. My parents and siblings, who I’m so lucky to have and are always there for me. The Parkinson’s community and certain specific members thereof, who I can relate to, turn to, and in turn, support, when I need to talk to someone who really understands, or likewise.
There is still no cure ten years on from my diagnosis, though in honesty I didn’t think there would be.
I have, however, tried to contribute to changing this. I’ve fundraised for the Cure Parkinson’s Trust and Parkinson’s UK (most recently with my 400 km walking challenge this year. I’ve tried to raise awareness of the disease, especially Young Onset Parkinson’s and Parkinson’s in pregnancy, through various articles such as this BBC piece from 2019, in the hope that the stereotypical image of a hunched over elderly man will no longer be how one is labelled with this diagnosis. In doing so, I’ve had messages of thanks from other young women who were, or hoped to be, mothers with Parkinson’s, as well as others who have found my story relatable and have found solace in knowing there are others like them and that their diagnosis is not a death sentence. It is for this reason I share.
I may be at my worst, symptomatically, in years, but I’ve had a good year. I moved house with my lovely family, got a kitten (and can highly recommend fluffy therapy), and brought music back into my life with a piano and by joining a local singing group run by a wonderful human who inspires kindness. I’ve continued to work when I can and have been lucky enough to volunteer in various places with some fantastic people. I’ve walked and talked through every season with many different people – some with PD, some who work with PwP, some who know PwP, and some who just simply love the great outdoors. And I’ve appreciated every single simple moment. I’ve changed pace, because I’ve had to. And that’s OK.
While there is no light at the end of the tunnel as long as there is no cure, I can see a torch ready to be switched on in the form of deep brain stimulation (DBS) in early 2024. It won’t fix me, but it might smooth out the fluctuations in my symptoms and side effects and put me on a more even keel, for a short or a long time – who knows? I’m hopeful that it’ll work. And, strangely, I’m feeling more positive and less fearful now than I did a decade ago. And that says a lot.
Why am I writing this? Perhaps to commemorate my 10th year since diagnosis, my 40th birthday, and to provide my own benchmark to look back on in ten years’ time. Because we can’t compare ourselves with each other – Parkinson’s is too personal. But we can reflect on our own journey, learn from our experiences, and change and adapt our perspectives.
As I sit here typing with my right hand, my left curled into my chest, fingers occasionally flicking outward, other times joining my right at the keyboard – a letter or two all they are able to muster before nestling back into their strangely comfortable, contorted position – I think about how much things have changed over the past year, let alone in the eight years since my diagnosis.
I could still speed type when I was 29. The tiny tremor in my little finger was just an irritation. The past couple of years have seen my typing decline to such an extent that I had to give up the transcribing part of my business. I had to accept that it no longer made sense to continue torturing my right hand in a futile effort to type in a way that is simply no longer possible for me. I continue to translate and proofread, work that is less typing-intense and in fact more profitable and enjoyable, but I remain stubbornly resentful of having to adapt to my medical condition, retaliating by establishing a “handmade” (oh, the irony) second business and continuing to regularly volunteer in defiance of my decreasing ability to walk in a straight line.
I’m OK, though. No, really, I am. I’ve increased my PD meds, refused deep brain stimulation for the time being, and I’m medicated again for my IBD (incidentally, this second chronic condition can seem more devastating than the Parkinson’s when it strikes). My brain is yet to convince my body (or is it the other way round?) to start exercising regularly, but with a 4- and 6-year-old, I’m active enough. That’s something I recognise I need to change, though. And that’s a good enough start.
My whirlwind girl “graduated” from nursery today. Such a change for her as she moves up to ‘big school’, but she is so ready. Whether or not I am is another question.
Despite my blatant disease progression, my children continue to see beyond my symptoms; I’m still just their mama. And for that, for as long as it lasts, I am grateful.
If there’s one constant in my life, let it always be them.
I’ve struggled to find the time or energy to write lately, but my recent silence is not for want of having anything to say; I just hadn’t figured out where to start.
At the start of 2020, we joked about how things couldn’t get much worse than last year: what with my husband’s cancer diagnosis and treatment in the spring, the kids getting chicken pox successively at the time of his chemo, the cat getting run over in the summer, and then our next-door neighbour setting their house on fire a few days before my son started school, amongst other things. I’m not going to lie – I’ve had better years. But a pandemic in 2020? You’ve got to be kidding me. I cried in the kitchen when it was formally announced that the schools were closing back in March. Everything over-spilled upon realising the severity of the situation. As much as I love my kids, and love having them at home, I’m sure every parent can relate when I say that I also loved our routine as it was. A bit of breathing space for us, fun for them with their friends, the run-hug at pick-up, smiling faces, yet another accident form for bumping ears with another child. Yes, ears. The chat with the other parents at the gate, an impromptu coffee, a consolatory hug. The thing is, I genuinely never took these things for granted before. I didn’t need Covid-19 to come along wreak havoc for me to realise how lucky I am, to know how vital and valued human contact is in my life. I live with a chronic neurodegenerative condition: I spend all of my spare time volunteering so as to be around other people and not confined to home. Because one day (sooner than I’d probably like), it is possible that I will have no choice but to be confined to home.
At the start of lockdown, I plunged myself into the ‘home-learning’ (mainly craft, let’s face it) side of things with the children, which I enjoyed very much at times – as did they, I think – but also to distract me from all the small, yet hugely important, things I was missing so much. Growing up, I always thought I would be a teacher, like my parents, so I’d be lying if I said I didn’t take some pleasure in setting up activities for the kids, seeing them not only enjoy them, but taking pride in what they achieved, however small a task.
But it hasn’t all been plain sailing. As the weeks went by, enthusiasm from both sides did wane. What seemed novel to the kids to start with fast became habitual and, as such, not as fun. Cosmic Yoga was cool for the first few weeks, but soon became a chore. Even the Pokémon one, and that’s saying a lot. With my husband working throughout in our loft, he and his customers had no choice but to endure my kids’ frequent screaming (and mine). We are fortunate, though, that he was able and already set up to work from home, selling wine throughout lockdown to supply the nation with a popular coping mechanism. I put every ounce of energy into making sure the children were happy and entertained that I possibly overlooked my own health in doing so. I have been exhausted, and with no access to my usual exercise routine, I have noticed a definite decline in my motor function over the past three months. I could go for a run, do something in the evening, but that’s easier said than done. By mid-morning by left-hand side is usually slowing down; by mid-afternoon my walking has deteriorated to the extent that my left-hand-side drags along, trying to keep up with my right.
With this in mind, the decision to send the kids back to school/nursery for the few remaining weeks before the summer holidays was a fairly easy one, and I don’t have any regrets – it was the right choice for us. It’s a much debated topic and every parent will have different reasons for keeping their kids at home or sending them back, but having been all cooped up together in our small house for so many weeks, for the sake of all our sanity and my health – not to mention for them to be in a different, stimulating environment before spending another six weeks at home – we didn’t hesitate for too long when going back became an option. As a younger person with Parkinson’s, it’s unclear to me how vulnerable I might be in terms of susceptibility to Covid-19 or complications in the event of catching it. The school have done an amazing job; I feel a lot of confidence in them.
I miss my family. My parents live a few hundred miles away, so there’s no option to pop our heads round the garden gate to say hello at a safe social distance. They live slightly north of Durham, but it’s not like we’re going to do a Dominic Cummings. No trips to Barnard Castle (or Northumberlandia) for us. We video chat, and I’m grateful for the technology we have in this day and age to be able to see them, albeit not in person. But it’s not the same as a hug with your mam or dad. Even parents need parent-hugs.
I’m a realist verging on pessimist, so I struggle to be positive about anything to do with the current situation – the death toll, the impact on the economy, the uncertainty of what the future holds is all too serious to sometimes see beyond. When you live with a chronic condition, time is precious; when you don’t know what your state of health will be in the next year or two, it’s hard to look forward to plans for subsequent years. However, this time spent at home with my husband and children will be time I will look back on fondly in years to come. More family meals around the table, drawing together, learning. Growing. It feels like the children have grown up so much in such a small space of time. My son lost his first tooth and it felt monumental. The world may be testing us, but there is pleasure and joy in the small things.
Let’s face it: 2019 was shit. For a lot of people. For many reasons.
Moving into the new decade, I took the decision to take a brief hiatus from blogging (which I only ever do for the pleasure), with the intention of focussing on my family, my work, and an anticipated house move, hoping to reduce any potential stress that could exacerbate my Parkinson’s symptoms and slow me down. The prospect of my disease progressing – which, of course, it will, is daunting. Our reality today, however, is extremely unsettling. So with the confusion and chaos of Coronavirus rife, and the prospect of self-isolation on the horizon, if not yet on the cards, what better time to resume blogging?
It is unclear what the impact of COVID-19 will actually be, if contracted, for people with Parkinson’s, it being a novel virus. As a younger person (age 36, dx at 29), it would appear that there is no increased risk of me either catching the virus or of it having any more serious an impact than for any other person. As we all know, though, the majority of people with Parkinson’s are older than I am, and more likely to have comorbidities, thus falling into a higher risk population with regard to complications related to any flu, pneumonia, or even Coronavirus. We must look to support everyone around us at this time – albeit most likely from a distance.
Anxiety is prevalent in people with Parkinson’s, and the current hysteria surrounding the novel virus, apparent in local panic buying, is sufficient a trigger; I have to admit that I was relieved to pick up my latest two-month prescription this weekend, the timing for its renewal for once just right, in spite of my recent spate of bad luck.
I’m also fortunate enough to finally find my IBD in remission. A change in diet on 1st January, cutting out all meat, has vastly improved my ulcerative colitis to such an extent that I have completely stopped all medication for this, which is in stark contrast to last year’s dark autumn days, when I was flaring, on steroids, suffering from insomnia, and extremely concerned about my mental health as a result. Had this turnaround not happened, the next step would have likely been an immunosuppressant; the prospect of taking such drugs alongside my PD meds would have made my anxiety skyrocket right now. Again, I’m lucky to be in a good frame of mind amidst today’s confusion and uncertainty. Others may not be. Check on your friends and family. Find out how they are doing. Reach out if you haven’t heard anything, talk where you can. It’s as important to keep calm and keep minds at ease in the unknown.
Looks like I’m back. For a while, anyway. Let’s see.
After deliberating for a very short moment, I decided not to write a blog post about my highlights and lowlights of 2019, not seeing fit to waste precious typing time recapping what I can only describe as a challenging year. I’ve tweeted a bit, posted on Facebook a few times, but I haven’t found it in me to go back over everything. And that’s OK: I don’t think I need to. It’s time to look forward.
I’m not one for making resolutions either – they’re all too easily broken – but this year I hope to continue to try to make the most of every day, to keep working as hard as I can, to keep volunteering, which I love, and to bake a bit more, which I enjoy. I want to capture as many memories of my children as I can, to start a memory jar (to be opened on my birthday, the last day of the year).
My birthday gift from my children.
As my condition progresses, my dexterity decreases, so I need to make the most of being able-bodied. This means going to the gym as much as I can, and forcing my left-hand-side to do tasks that it now finds difficult and unnatural. When I was first diagnosed at 29 – over six years ago now – my only motor symptom was a tiny tremor in my left little finger, and, I suppose, my reduced arm swing. Now, having just turned 36, my tremor is much more visible, but I also get very stiff and, at my worst ‘off’ times, really shuffle when I walk, having to kind of drag my left-hand side behind me. I’m due to see both my nurse and consultant in the coming months, and I wonder whether there will be any changes to my medication. We’ll see.
On the IBD front, there’s nothing much new there. My wonderful nurse has just left the Trust, so I’m hoping that I don’t find myself lost in the system. I do wish her the best of luck, as she is wonderful at her job and my loss is certainly many more patients’ gain.
One of our top priorities this year is a house move, which is difficult for us for various reasons. We are now faced with weighing up the sacrifice of losing our current town centre location – being in walking distance of everything I need access to, including my son’s school, daughter’s nursery, GP surgery, hospital, the shop where I volunteer, not to mention the shops, park and meadows we are so very fortunate to have on our doorstep – in favour of having more space, which we so desperately need as the children grow. But we will figure it out. We have to. We’re lucky to be homeowners, this I know, but for the sake of our mental health this move needs to be top of the list, especially now that my husband is healthy – which is another huge relief. If it wasn’t for my son’s school, we would likely seriously consider moving back to the North East, but while this is still an option, we’ve made this town our home. That said, if it came to it, we’re not averse to change.
I’m looking forward to seeing what the coming decade has in store for us, but sod the roaring twenties; I’ll be hoping that the next few years move along quietly and as slowly as possible.
Best wishes for an uneventful Twenty-Twenty and excitement in the ordinary.
As autumn starts to fade into winter, with once-crisp-and-colourful, now dark-and-soggy, leaves underfoot and my shouts of “don’t run!” – in the hope of avoiding an early morning trip to A&E – expediting the boy’s daily sprint to the school gates, so begins my reflection of the months that have passed and events that have occurred over the course of the year that have led me to where I am now, and I wonder: what is normal?
Things seem relatively ‘normal’
right now, after what’s felt like a turbulent year.
My health has fluctuated from feeling better than ever in the first few months of 2019, with the introduction of a gym membership following a neurophysiotherapist referral, regular attendance at Body Combat classes, and boxing with a PT at the gym, to the worst, with severe side effects of a steroid medication used over several weeks to treat a fairly nasty IBD (ulcerative colitis) flare in more recent months. I wouldn’t say I’m in an active flare right now, but with my calprotectin (inflammatory marker) results in the thousands, something isn’t right. Further tests are imminent to try to establish what.
Then there was my husband’s testicular cancer diagnosis back in March. Good grief. Talk about a whirlwind of emotions, fear, and relief. Caught early and treated with surgery and chemotherapy, and now being monitored for many years to come, whilst an utterly shit thing to go through we can only feel lucky that it was one of the most treatable types of cancer there is. I’ve never felt the force of our friends and family rally around us as much as they did at that time, and for that I’m eternally grateful. Parkinson’s is slow burning, progressing over years and stealing little bits of you gradually enough for nobody to really notice, while cancer threatens to snatch your life away, screaming in your face as it intimidates you. Neither are pleasant, but cancer is cancer and, let’s face it, it’s not to be fucked with.
Tom’s surgery fell on 11 April, which was World Parkinson’s Day this year and happened to be the day on which the BBC published an article about my experience as a mother with YOPD and young children. It was well received, I felt, as I read comments and responded to messages from friends and strangers alike from the hospital waiting room. In honesty, it was a somewhat stressful distraction at a difficult time, and it’s a little unfortunate, perhaps sad, that I consequently didn’t really feel anything much about it, such was it rendered insignificant to me due to the importance of Tom’s surgery. The main thing I remember from that day was how cold my husband’s hands were when he came round and how relieved I was that he was going to be OK. Orchiectomy can be life-saving and all that is required to achieve remission of pure seminoma in some cases, the chemo that followed in June apparently reducing the risk of the cancer recurring to a very low percentage, which seemed a no-brainer. In the face of Tom’s potentially devastating diagnosis, we were relieved to already have had our two wild, clever, beautiful children. Decision vindicated. By August, he was given the all-clear, and that’s hopefully that short-lived albeit horrendous episode over forever.
After dealing with cancer anything else seems manageable, despite it feeling like the odds continued to be against us. Our cat was run over and killed in August, and in September our next-door-neighbour intentionally set fire to her house – in broad daylight, luckily, or goodness knows if we’d still be here, our houses being joined by wooden beams.
But whilst it’s easy to get stuck on the negatives, some good things have of course happened. Amongst other things, I’m sure, like the constants of having a wonderful family, my work going pretty well, setting up a new social group for PwP in my area, and the prospect of things always possibly being worse, which is pretty much my mantra, two key things began this year that have been absolutely positive distractions for me in the dark fog that I have felt begin to envelop me at times: the first is my volunteering for Oxfam, where I have made some wonderful friendships in a vibrant group of people, all from different walks of life, and which has really kept me sane. The second is my son starting school, where he is thriving, learning, and increasingly confident, sounding words out to himself and writing secret notes for his friends. I’m still getting my head around his newfound love of Pokémon cards (who knew this was a thing?), though I’m enjoying learning with him and watching him grow. And there’s also something about the schedule, the routine, the (pretty full-on) involvement of the parents in school life that I am really enjoying. I feel lucky to be surrounded by some like-minded, caring, empathetic people, and whilst my son finds his feet and forms friendships in reception, I am finding my feet, too.
So what is normal, then? What is normality?
Parkinson’s at 29 is my normal. I’m doing my best.
What could possibly be in store for us next (year)?
This is becoming a staple comment when I blog these days, but life gets in the way, and whilst I continue to post on social media – something I’ve done a fair bit of lately – I only blog when I feel I’ve something to say that merits more space on the page. Here I find myself this evening, typing one-handed, tired but having had a good weekend with my family; the first since my little boy finished his first full week at school.
My last blog was written in the car as we drove home from our week away last month; a drive that took nine hours due to a nail in one of the tyres. A slow puncture. That’s pretty much what Parkinson’s is, really: a slow puncture that you can fix up temporarily, but over time, no matter what you do to patch it up, things will stop functioning as they should unless you can eventually replace the tyre. If only brains were as straightforward as car parts.
I was wondering what could possibly go wrong next, what with us experiencing such a ridiculous spate of events as a family this year, then, a couple of weeks ago, just after the tyre incident, our next-door neighbour set her house on fire. I was at home with my son when a passer-by (who I confusingly interpreted as a delivery person) knocked on our door and told us to get out of the house, as next door was billowing smoke. Cue a minor frenzy, an excellent and reassuring fire brigade, and quite a lot of police, and, thankfully, ultimately no-one was hurt (though one person was arrested). You really can’t make this shit up.
After feeling pretty confused and angry about the whole thing since it happened, what with our lives and home having been put in danger (the beams cross through the houses right the way through this old terrace of cottages), my IBD flare consequently resurging and having to start on a pile of new tablets to curb it, and with my son starting school and talking about houses burning down upon seeing smoke, today something clicked and I genuinely felt sorry for the neighbour, who was allegedly dragged out of the building by some bystanders. She was already out on the grass verge by the time we got outside, and when I’d asked her if she was OK, she simply looked up at me for a matter of seconds before bowing her head again. What state of mind, what depths of darkness and despair does it take to do something like that to yourself, whilst consciously endangering the lives and homes of others?
It has also really put things in perspective for me in terms of what I have and how lucky I am. I might have a slow puncture, but I have my home, which I love, even if space continues to be a stress factor as our children grow; I have a loving husband; I have my work, my volunteering, and the new playing field that is being mum to a school-aged child. And it’s made me realise that I need to start prioritising myself a bit more – to do what I want, with less stress, to be a bit more selfish – whilst there’s still pressure in the tyre. Because it can’t be replaced.
pdmama 