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‘Give young women better support after Parkinson’s diagnosis’

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Lara Tompkins was only 33 and had just given birth to her first child when she discovered she had Parkinson’s disease. While distressing enough in what should have been a joyous time, the lack of any tailored support for a young woman – let alone a new mother – made it a traumatic period.

Here, Lara discusses why bespoke support for younger women is needed, why provision for young people with Parkinson’s needs to be less of a postcode lottery, and how Deep Brain Stimulation has gone on to change her life

As a first-time mother, feelings of being overwhelmed, uncertain about what to do after such a huge adjustment in life, are completely common. 

But for Lara Tompkins, that life-changing moment – and its accompanying euphoria, amidst the many challenges that accompany becoming a parent – was compounded beyond what most of us could comprehend by a diagnosis of Parkinson’s disease. 

Having suspected Parkinson’s during her pregnancy, after giving birth to her son, tests confirmed Lara’s fears – aged only 33. 

While with the right support that situation could have been made as positive as possible, Lara’s experience echoes that of many young people, in that she was treated as someone much older than their years – and specific support for her as a new mother with Parkinson’s was non existent. 

“I felt robbed of the joy of becoming a first-time mother, really,” says Lara, a clinical scientist in audiology.  

“It was a really awful time. I had just had a baby. I was working. There was so much to take on board, it affected everything.”

Having realised the lack of support – and the huge problems in provision through the ‘postcode lottery’ of NHS resources – Lara did eventually find both the clinical and peer support she so badly needed to help her rebuild her life after the trauma of the diagnosis, as well as her experience. 

After making the decision to undergo Deep Brain Stimulation late last year, happily things appear to be changing for the better – after seven years of battling symptoms, taking “what felt like a wheelbarrow full” of medication and seeing deterioration in her ability to manage, Lara has now returned to work and feels almost a new lease of life. 

“I think it got to that point where I was thinking’ Is this as good as it’s ever going to be’? And that was quite a miserable thought,” says Lara, now 40 and a mother-of-two. 

“I wanted a quality of life, especially for my kids. Being able to put them to bed at night, not being a complete wreck by 6pm because you’ve used up every ounce of energy, not being able to run around after them. 

“From feeling I just didn’t have it in me anymore, I feel now like my life is changing. It has already changed since the DBS, although we’re still seeing exactly how. It has been amazing and I have so much more hope for the future than I ever could have imagined.” 

 

I felt like an old person – nothing like a new, working mum

When Lara was pregnant with her eldest child, she noticed a tremor in her right hand. While assured initially it could well be carpel tunnel syndrome, which can be common in pregnancy, the fact it worsened meant fears it could be something worse were raised. 

“I had a stressful job and the tremor got worse when I was under a lot of pressure and had noticed that my handwriting had become very small and hard to read,” says Lara. 

“I was eventually referred to a neurologist who told me at my first appointment that he suspected that I had Parkinson’s. I didn’t know anyone else who had Parkinson’s and didn’t know anything about it.”

After giving birth to her son, a DAT scan confirmed the diagnosis as Parkinson’s and the symptoms began to worsen. 

“I started to dread any appointments where I had to undress and redress 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 poppers on baby grows,” Lara recalls.

“It was a constant mix of frustration and sadness about the situation, mostly because I was comparing myself to other mums in baby groups.”

For a woman of 33 who had very recently become a mother, the support in her local area in Wales, while well meaning, was actually quite traumatic. 

“The appointments I was given with physiotherapy were at the Parkinson’s day centre for elderly people, which had high backed chairs and played the White Cliffs of Dover. I was a new mum but all of a sudden felt very old,” recalls Lara. 

“I was given a leaflet by a nurse, which she printed off for me to give me some information, because she said she hadn’t come across anybody before of my age. I suppose she didn’t know what to do and was trying in her way to help. 

“But it was the most upsetting thing I have ever read. It was a story about a woman in the 1980s who was diagnosed and needed a carer, how she needed to be hospitalised and strapped down at one point, and there was a bit in there about how she saw other people with Parkinson’s sat in the corner dribbling, and she’d rather die than end up like that or be a burden to her family. 

“This same nurse also said about how my son could become a carer when he was older, he could help me with the washing. She had a friend with Multiple Sclerosis whose son helped her with the washing. 

“This was my introduction to this – as a woman with a career, with a baby. It was awful.”

Lara’s initial interactions as a new mother were also negative – “they’d tell me I wouldn’t be able to breastfeed because of the medication just as a statement, without thinking how that would make me feel” – and the fact her case was so uncommon was something regularly remarked upon by medics. 

“I was horrified by the lack of knowledge. Sometimes the medical staff would seem like they’d won the lottery because you’re an interesting case. They would get very excited about it – lucky me,” remembers Lara. 

“I’d see doctors who hadn’t read my notes in advance, they didn’t know anything about young onset Parkinson’s, they haven’t looked into it. There is nothing more demoralising than someone saying to you ‘I’ve never seen someone with your condition before. What do you think we need to do?’

“As a clinician myself, if I didn’t know something, I would look it up. That’s what you do for a patient, isn’t it, if they come to you with a condition you don’t know anything about? You research it before they come, or tell the patient you’ll look it up before their next appointment. I did find it all very negative and upsetting.”

The postcode lottery of provision

Living in Wales, with a wide and sparse geographical area for NHS resources to cover, care can be – at best – patchy. 

Despite living a 20 minute drive from Cardiff, the health board covering Lara’s postcode had almost non existent provision for a young person with Parkinson’s.

“There are no specialist physio classes and no specialist psychological support available in our area, and referrals to Cardiff were not accepted,” she recalls. 

“I went to six classes with elderly people who had survived stroke. I was the only one who could stand up to do the warm up and I was thinking to myself ‘This is crazy’.

“But I did feel it was really important to be able to see someone, it was affecting everything. There was so much to deal with and I feel very strongly that this support is something everyone has access to.”

Thankfully, Lara was able to see a visiting neurologist from Cardiff, who then referred her to Dr Kathryn Peall, a clinician-scientist Fellow at Cardiff University and an honorary consultant neurologist. 

“After everything that had happened so far, Dr Peall was amazing. She said her job was for me to tell her what I would have wanted to do if this wasn’t happening to me – and her job was to make it happen,” says Lara. 

“I remember being really moved by that, it still makes me a bit tearful. It was lovely. And that has made a massive difference, she has made a massive difference. I am so very much to end up seeing her. 

“I told her all about the experiences I’d had with the nurse and everything else. She then get in touch with Louise Ebenezer, who is my Parkinson’s nurse. I’ve now ended up with two very amazing people.

“But it was very fortunate I was able to meet Dr Peall in the first place. Had I been reliant on what is offered by the health board where I live, things would have been very different.”

Over the years since her diagnosis, Lara has built a group of peers, young women who live nearby all of whom have Parkinson’s, and have become friends.  And her own experience of the postcode lottery of provision is replicated across the group. 

“Through this fresh group of friends I’ve made, I have come to realise how inconsistent the care is that people are getting across different areas,” says Lara. 

“But for something like this, where there is so much to take on board, and where your circumstances are very different to the group who Parkinson’s care and support is often still geared towards, it is very important.”

One particular area highlighted by Dr Peall was the potential for Lara to undergo Deep Brain Stimulation as a means of helping to minimise some of her symptoms. 

“For other people I have come to know, who live in different areas with different health boards, they have different consultants, but it doesn’t seem like something that is mentioned to them,” says Lara.  

“I don’t know whether that is because of their particular range of symptoms or their circumstances, but it seems very strange to me.

“For me, this was mentioned as an option very early on, whereas if I hadn’t have seen Dr Peall, I’m not sure it would have been, probably not. 

“And for something that is so life-changing, that is very strange.”

The life-changing DBS

After the birth of her second child and 2019, Lara found her symptoms more difficult to manage, and by the start of 2021 it was increasingly affecting her day-to-day life. 

“Despite taking a number of different medications I was getting periods in the day where my medications were wearing off before the next dose would take affect,” she says. 

“I was also getting a lot of extra involuntary movements as a side effect of the medication and I would experience painful cramping of muscles in my left foot and up my leg, particularly in the evening. 

“I was finding it hard to keep going with pressures at work and at home, I had lost confidence in driving other than a short distance. It was very worrying.”

In her very first consultation with Dr Peall, the concept of Deep Brain Stimulation (DBS) was raised as a potential option for Lara. While the treatment is not available in Wales, there was the option to receive DBS in Bristol. 

DBS is the main type of surgery used to treat Parkinson’s and can be effective in improving motor symptoms. It works through the implant of a pulse generator into the body which is connected to wires inserted into the brain. When the pulse generator is switched on, the stimulation changes some of the electrical signals in the brain that cause the symptoms of Parkinson’s. 

While initially she regarded it as an option for the future, as Lara’s symptoms became more profound, it was a choice she was keen to make. 

“When she first mentioned it, it did feel like it was something quite scary. But as time went on, and my symptoms got worse, it’s weighing that up against the quality of life you can potentially get back – and that made it an easy decision,” says Lara. 

After her first appointment with the DBS team at Southmead Hospital in Bristol in January 2022 which explained the process, Lara underwent the assessment in September, being monitored both on and off her medication before being confirmed as an eligible candidate for the procedure. 

The DBS was carried out on December 21 last year – “it was good as I got to lie on the sofa over Christmas, which was quite nice,” says Lara. 

After the implant was made, it was switched on six weeks later on January 28. The process of balancing the settings on the DBS device with Lara’s medication is ongoing, but in the last few months, the changes to Lara’s life have been profound. 

“It has been pretty amazing,” she says. 

“I used to take what felt like a wheelbarrow of medication, but now that has reduced a lot. 

“I feel like I can sit still again, I was getting some bad dystonia in my left leg in the evenings, it was really painful, the kind where you’d have to kneel down and just breathe through it. But I haven’t had any of that since it was switched on. 

“I feel I can move much more naturally; I can laugh and my face feels like it used to. I feel so much different. I feel lighter, if that makes any sense.”

The process of adjustment is still ongoing, with regular visits to Southmead supporting Lara’s ongoing progress. 

“I have a controller which records beta waves in the brain and they can get feedback from it,” says Lara. 

“So when I go to my appointments, this information is downloaded onto an iPad and they can see the on and off periods I’ve had just from looking at my brainwaves. They can then advise on when I can turn up the device in response to that. 

“There was a period shortly after it was switched on when I got COVID, and there have been some ups and downs along the way, but it is all part of getting used to it and finding the right balance. 

“In my last appointment, the peaks and troughs on the trace are becoming much flatter, which shows that we are getting there. It’s all really positive.”

And the impact on Lara’s life is already being particularly positively felt. She is on a phased return to work, having previously believed the end may be in sight for her career, and is also regaining the confidence to spread her wings. She is also a volunteer with the First Steps programme, for people newly diagnosed with Parkinson’s. 

“I work in a non-clinical job now for two and a half days a week, but I did feel that had I carried on the way I was, it was something I’d have to give up, I did feel it was coming to an end,” says Lara. 

“Whereas now, this has given the a chance to continue. This is the best chance I have to be able to carry on. I enjoy my job, I like the people I work with, and this gives me the opportunity at least to try and see if I can continue. I hope I can. 

“I also have friends in other parts of the country who I’d love to visit. I used to be the kind of person who would get in the car and drive to wherever. But I got to the point before my surgery where I lost confidence in driving. Now, if I feel good, I will drive places again. It’s lovely to be able to do that.”

While medically not everyone is eligible for DBS, many people are put off by the thought of it. Lara felt similarly initially, but is now an advocate for potential candidates to give it due consideration. 

“I think some people are put off by the idea of having something in the brain and the surgery, but it’s not bad. I have been through it, and for me, the assessment process where I had to come off my medication was the worst part,” she says. 

“I have spoken to people who have declined it, because they’re scared by the idea of it. But in comparison to the quality of life it could give, and the hope you can regain, for me, I definitely think it is worth the trade off.”

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