Parkinson’s disease: latest research and carer’s perspective

World Parkinson’s Disease (PD) Day takes place annually on 11 April – the birthday of Dr James Parkinson, who was the first to describe the condition ‘paralysis agitans’ in An Essay on the Shaking Palsy in 1817. Read our quick facts about the disease and latest research initiatives, followed by the experience of a daughter who cared for her mother with PD.

Quick facts

Parkinson’s Disease (PD) is a degenerative disorder of the central nervous system, which affects 6 million people worldwide. Nerve cells in the substantia nigra part of the brain are lost, reducing levels of dopamine, a chemical that controls movement.

The main symptoms are tremors, slow movement and stiff muscles, although people with the condition can experience a broad range of physical and psychological effects.

The cause of the loss of brain cells is not clear, although many believe it is a mix of genetic and environmental factors.

Most people with PD exhibit symptoms over the age of 50, but one in 20 develops symptoms when they are under 40, with men more likely than women to have it.

Although there is no cure at present, various treatments are available to control symptoms, including medication to restore dopamine levels and deep brain stimulation.

Numerous research studies are being funded by charity organisations such as Parkinson’s UK and the Michael J Fox Foundation for Parkinson’s Research in the US. Several are focusing on finding ways to diagnose the condition, as doctors currently rely on the person’s medical history and a physical examination, which can result in missed or incorrect diagnoses. Discovery of a biomarker would not only help with diagnosis but also assist the tracking of disease progression.

Latest research

Last week, Pfizer and IBM announced a collaboration to monitor PD patients around the clock and then analyse the data generated. The project will place up to 200 participants – those with PD and control subjects – on rotation in a research facility designed to look like a standard house but which will be fitted with a network of connected sensors. The hope is to discover which sensors provide the best insights for PD patients, with the ultimate goal of putting them in people’s homes so that doctors can manage their patients more holistically using the real-world results. Pfizer plans to use the infrastructure to test its newest Parkinson’s drug candidate PF-06649751, which is being developed to improve movement, although it won’t enter phase 3 trials until 2019.

Stem cell trial

In March the first trial of a stem cell treatment in people with PD was announced, which aims to grow new dopamine-producing brain cells to replace those lost to the disease. The 12-month trial is being run by International Stem Cell Corporation subsidiary Cyto Therapeutics in Australia. It will involve 12 people with moderate-to-severe PD, who will have replacement brain cells transplanted into their brains. The study will investigate the safety of the approach and scientific experts have cautioned that it is still early days. Interim results are expected in October 2016.

Living with PD: thoughts of a daughter/carer

The following is a genuine diary experience of a woman whose mother had PD:

Two years ago

My mother used her walker to move herself into her office to inform me she had Parkinson’s and exactly what this meant. At least as much as she could tell us. If she is a ‘textbook case’ she has several years before being completely bedridden and 10-12 years from the onset of symptoms (so, 7-10 years) to live.

My world was shattered. What would the future be? Each time I saw her for the first 6-9 months or so, she was noticeably worse. She went from walker to wheelchair, to being incontinent and not leaving the house, to losing control of her right hand. She had to learn how to feed herself with her left hand and her speech slowly left her. Every time I left the house, I cried.

Since diagnosis

She had good days and bad days. She lost her appetite on many days, but for the most part she was holding pretty steady and doing as well as someone could with minimal control over their own body and limited communication skills.

I gradually became more comfortable. I would distract myself with dreams of the future, however short. Would there be a possibility she could attend my wedding one day? (I’m not engaged or anything, just imagining). I occupied my mind with thoughts of how we could throw her a surprise 60th birthday party this August or a 40th wedding anniversary party with my dad in a few short years. I knew and understood the prognosis, but I didn’t want to feel it anymore.

Somewhere in the illogical part of my mind I thought that maybe she’d remain this way – not the mom I grew up with or even the mom from a few years ago – but the mom who could at least still laugh and share stories and visit family, forever. I felt hope.

Deterioration

But of course that’s not how these things work. Over a couple months it grew harder and harder to understand her. Anyone who hasn’t dealt with this can’t understand how upsetting it is to have to ask ‘Are you in pain?’ or ‘Do you need something … because I just can’t understand you?’ I knew a while ago that one day the plateau would end and probably start the real end. But, this wasn’t supposed to happen yet. She was supposed to have years before she was bedridden, not months. She was supposed to have 7-10 years with us, not just a few. I’m not ready for it right now. Why did this have to progress so quickly?

Need more time

She signed a DNR [do not resuscitate]. The hardest part for me is that she signed something saying she doesn’t want an IV or a feeding tube. Which means as soon as she can’t swallow, she will have a week, give or take, to live and I know she’s already having trouble. So I don’t know right now how much longer I have with my mom. Her 60th birthday is in August and at this point I don’t believe she’ll be here for it. I hope to God I’m wrong. I hope the grief I’m feeling now is just a rehashing of what I originally felt and that I don’t have to experience the real grief that I know is in my future for a long time to come.

This article was written by pharmaphorum and includes a real patient’s experience from Treatment Diaries’ website, where you can read more, share if you like or join in the conversation. Making sure you feel less alone when navigating any diagnosis is important. Treatment Diaries connects people to others who can relate and provide support.

Read another patient perspective:

Patient experience: living with glaucoma