My Parkinson’s journey – Lara’s story11 April 2023
11th April marks World Parkinson’s Day. Every hour, two people in the UK are told they have Parkinson’s, turning lives upside down. Whilst most people develop symptoms after the age of 65, thousands of working aged people are also affected.
Lara is a working mum of two young boys, living in South Wales with her husband. She found out she had Parkinson’s Disease seven years ago, aged 33. Here, she shares with us her story of life with the condition.
It all started with a tremor in my right hand. I have a stressful job in the NHS and I noticed that when I felt under pressure my hand would shake and my handwriting would become smaller and harder to read. As I was pregnant with my eldest son my GP dismissed the symptoms as carpel tunnel syndrome – a common condition in pregnancy. But, as my pregnancy progressed, I saw no improvement in my symptoms. In fact, they got worse, to the point where writing with my right hand was near impossible. My GP eventually referred me to a neurologist, who, at my first appointment, told me that he suspected that I had early onset Parkinson’s Disease. How do you react to news like that? As far as I knew Parkinson’s was an “old person’s” disease – I was 33. It felt incredibly unfair. I had my whole life ahead of me, and now it was filled with uncertainty. It was hard not to feel very alone.
All new mums struggle, but not like this
Once my son was born, I was able to have a dopamine transporter scan (DaT scan) to confirm the diagnosis. Being a new parent is tough for anyone, but when you’re living with Parkinson’s even the simplest task can become impossible. I started to dread any appointments where I had to undress and dress the baby, or change a nappy in front of anyone, because I had to try and do this left-handed and struggled with the tabs on tiny nappies and fiddly poppers on baby grows. It was a constant mix of frustration and sadness about the situation, mostly because I was comparing myself to other mums in baby groups who seemed to find it so easy by comparison.
I started taking some medication, which helped me to move better. But, as a result, I was told I would need to formula feed my son because they weren’t sure what could be passed onto the baby through my breast milk. Whilst this was the right choice for me, as taking the medication helped me to be able to do so much more of the practical things involved in looking after a baby, I was very self-conscious about it, especially at first. When it seems all you see around you at baby groups are breastfeeding mums, and the message of ‘breast is best’ is being constantly reinforced, it’s hard to not feel like you’re failing; even when you’re doing your absolute best.
Getting the right support
My neurologist referred me to Dr Kathryn Peall at Cardiff University’s Neuroscience and Mental Health Innovation Institute, an expert in supporting younger people with movement disorders. I saw her for the first time a couple of months after my son was born. I can remember her assessing me for the first time, recording me walking and moving my hands and arms. The extent of my deterioration was clear, but I was very happy to be under Dr Peall’s care and appreciated her positive attitude and openness about the options available.
However, like many people across Wales, I live in a health board area where the provision of complimentary Parkinson’s support is focussed on elderly care. Attending appointments with a Parkinson’s nurse and physiotherapist in the Day Centre was demoralising and upsetting as they couldn’t meet my needs as a younger person with the condition. Eventually I was referred to a fantastic Parkinson’s nurse in a neighbouring area, and between her and Dr Peall I felt like my care was in safe hands. I knew I wanted to have another baby, so I underwent genetic testing which confirmed I didn’t have any of the known genes associated with Parkinson’s. This was a huge relief, and with the full support of my care team I welcomed my second son in 2019. During this time, I also took part in some research studies at Cardiff University, and it felt good to give something back to those who’d given me so much support.
Dealing with the increasing mental and physical toll
Parkinson’s is a progressive condition, and by the start of 2021 I was finding that it was increasingly affecting my day-to-day life. Despite taking several different medications, I was getting periods in the day where my medications were wearing off before the next dose would take effect. I was also getting a lot of extra involuntary movements as a side effect of the medication and painful cramping of muscles in my left foot and up my leg, particularly in the evening. My mental health started to decline. I was finding it hard to keep going with pressures at work and at home, and I had lost confidence in driving anything other than a short distance.
I decided I needed to make some changes. I started doing some volunteering with Parkinson’s UK, and I enjoyed helping others who we’re newly diagnosed. Due to the lack of available NHS care, I started seeing a private specialist physiotherapist and started attending private Parkinson’s Disease ‘Warrior’ classes every week, as well as trying out the various Parkinson’s exercise programmes available privately online. I found exercise of great benefit and noticed my symptoms and mental wellbeing improved as a result. I also started meeting with some peer groups – other local young women living with Parkinson’s. They have been such an encouragement to me because it can be so hard to explain what life with Parkinson’s can be like to those who aren’t living with it. They’ve taught me how to laugh at myself again.
Candidate for surgery
With Dr Peall’s encouragement, I agreed to be referred to the Deep Brain Stimulation (DBS) team in Bristol to consider whether this might be an option for me. I had my first appointment with the DBS team in January 2022. They were very good at explaining the assessment procedure, what the device would be like, and what the possible benefits and disadvantages were. The assessment took place in September 2022, and was the hardest part of the DBS process as I had to stop taking my medication and be admitted to Southmead Hospital overnight. All my symptoms came flooding back and everything felt excruciating. But it was worth the pain, as after being assessed both off and on my medication, I was told I was a candidate for DBS. The decision to have the surgery was an easy one. It seemed like the only way to improve my quality of life and avoid having to, once again, increase my medication and with it the accompanying side effects. The thought of having surgery on my brain was frightening, but the potential benefits outweighed any nerves I felt.
Switching on hope
I had the operation to put in the DBS system in December 2022, followed by six weeks of post-surgery rest and recovery. The ‘switch-on’ appointment was scheduled for the end of January 2023. I didn’t sleep a wink the night before the appointment as I had to stop taking my medication which caused painful muscle cramps in my legs, arms, and neck. I struggled to dress myself or eat because of the stiffness in my muscles. Even sitting down in the waiting room was uncomfortable. Then, the moment I’d been waiting for came. The nurses switched the electrodes on one at a time and I noticed an immediate improvement – the painful muscle cramps which had been plaguing me for years instantly disappeared. It was a wonderful, and overwhelming feeling of relief.
Setting up the DBS takes several hospital appointments over many months, increasing the stimulation given by the implant and decreasing the medications. The outcomes from DBS surgery can be varied, but over the past two months I have noticed a huge improvement in my symptoms and feel more like myself again. I’m taking fewer medications, which has reduced the extra movements I had been getting as a side effect. I am also sleeping better, and friends have commented that I have more natural facial expressions again. I am excited to see how things progress as further adjustments are made.
Being diagnosed with Parkinson’s Disease at such a young age has been a difficult, and oftentimes lonely road to face, but I’m extremely grateful to have been referred for DBS and for the support I have received from everyone involved in my care; particularly Dr Peall. With the incredible research into new treatments being undertaken at Cardiff University, and elsewhere, I have great hopes for the future of my life with Parkinson’s.