Lancaster designer creates Parkinson's diary to help patients live with the condition

Antonella Caputo lives in Lancaster with her partner - fellow designer and comic artist - Nick Miller, who has Parkinson’s.

Together, they want to raise awareness of the condition and the issues currently facing patients in the UK with Parliament in the hope of instigating change in support for patients.

Parkinson’s is a progressive neurological condition, where parts of the brain become progressively damaged over time, and the brain is unable to create enough dopamine to properly control movement. There is no cure.

Patients deal with a wide range of symptoms, beyond the stereotypical movement issues that Parkinson’s is more often known for. Sufferers can experience severe problems with sleep, speech, memory loss, mental health conditions, lowered inhibitions, pain, amongst other symptoms - including tremors and body rigidity.

Antonella – who is originally from Rome and has more than 20 years’ experience in copywriting and visual marketing – hopes that My Parkinson’s Diary can help sufferers with the condition to deal with day-to-day symptoms and self-care, along with having a written record to monitor their health and wellbeing.

She said: “It’s well-established that writing things down not only helps you to remember them, but also helps you to deal with things more proactively.

"Based on our personal experience – with Nick as a person living with Parkinson’s and myself as his carer, we’ve created this diary with the aim of helping people with Parkinson’s Disease as they go through one of life’s more difficult challenges.”

Antonella and Nick have experienced a dangerous shortfall in expert health services in their area.

The lack of specialist nurses and help for Parkinson’s patients is well noted across the country, and Parkinson’s UK have recently started a campaign – Can’t Wait – which reflects the issues Antonella and Nick face, in the NHS staffing crisis resulting in reduced and underfunded patient care.

The couple are calling for the government to prioritise improvement in services for Parkinson’s patients. They want to see better and faster access to trained professionals – neurologists and Parkinson’s nurses.

Reports last week outlined how a former nurse and Parkinson’s sufferer in the Midlands was forced to adjust her own medication after being unable to get hold of a consultant due to a staffing crisis, and was left in constant pain.

Antonella and Nick’s experience has also meant Nick has had delayed access to essential medication.

Antonella said: “The last time Nick spoke with his neurologist was in June. In April we saw the GP who couldn’t help with the insomnia because he honestly said he didn’t know enough about Parkinson’s medication, but he did offer to contact the neurologist. When Nick’s medication was changed, he hasn’t had a good night's sleep.

"His insomnia caused by the lack of dopamine can last for days. There is nobody we can talk to about this.”

Both Antonella and Nick have found essential support in a local group: ‘Lancaster shaken but not stirred freshers group’.

The group is run by Fiona and Andy Kennaugh. Fiona has lived with Parkinson’s for 11 years. They created the group with the aim of helping people diagnosed with the condition and sharing information that otherwise would be difficult to find from official sources.

Nick’s dedication to keep on drawing every day as long as he is able to hold a pencil, helps him deal with some of the more debilitating Parkinson’s symptoms.

He said: “Drawing is something I live for and I just can’t let go of. I’ve been doing this since I was a nipper, and as long as I can hold a pencil, I’ll continue to do so.

“My Parkinson’s Diary has been designed to keep on track with medication and possible side effects, the daily diet, mood and activities.

"This is information that can help the physician to monitor the progress of the condition. Having Parkinson’s affects memory and it is quite difficult to keep in mind daily occurrences. This diary helps me to keep records so I can give more precise information to my neurologist.”

Lancaster MP Cat Smith is planning to visit Antonella and Nick to talk further on how to make their case for more specialist care for Parkinson’s patients.

She said: “12 years of Tory cutbacks in our NHS are really clear to see. Antonella and Nick’s experiences show that we desperately need more support for Lancastrians living with Parkinson’s.

“I am taking up their case with ministers so make the case for more support for those getting on with living whilst managing this disease.

"I really commend Antonella’s helpful diary and hope that it will offer hope and support to others living with or caring for someone with Parkinson’s.”

What is Parkinson’s?

Parkinson's is a progressive neurological condition. This means that it causes problems in the brain and gets worse over time.

People with Parkinson's don't have enough of the chemical dopamine in their brain because some of the nerve cells that make it have died.

Around 145,000 people live with Parkinson’s in the UK – and it's the fastest growing neurological condition in the world.

Further information about Parkinson’s

*My Parkinson’s Diary can be purchased online at www.lulu.com/shop/ – there is also a German version available.

*Parkinson’s UK – a charity dedicated to improving life for everyone affected by Parkinson’s

*Anyone looking for further support can go online at www.parkinsons.org.uk

*Those looking for local support can find the ‘Lancaster shaken but not stirred freshers group’ on Facebook.