Robert Joyce from Clifden in Connemara is delighted to be involved in a medical research programme related to the condition that he has had for 28 years – multiple sclerosis or MS.

It is a new experience for him and for National University of Ireland, Galway (NUIG), as Robert is the first patient and public involvement part-time employee to be involved in such research.

“Historically it hasn’t been the case that patients were involved in companies or academic settings that were developing medicines or therapies,” he says, “but we need that to happen everywhere. It has been the way of medicine for an awful long time that the doctor knows all and the patient knows little.

“However, that idea is changing in that patient involvement is now considered important. In my case, I have lived this illness for the last 28 years so I’m an expert on my own illness and can contribute to the knowledge base.”

Patient involvement is needed early in the therapy development process, he believes.

“It is quite a (scientific) sea change that this is happening now so I’m delighted to be part of the research here at NUIG,” he adds.

Robert, who writes a blog about living with MS called a30minutelife.com comes to this role after involvement in a European project called IMI Paradigm.

“This is a collaboration between industry-governmental agencies, academic and European agencies who promote patient involvement in the development of new medicines,” he says.

“I was invited there by the European Patient Federation (the EPF) as a patient, to hear my voice within that discussion. I spoke about the importance of sustainability of involvement.

“If patients aren’t involved all the way through the research, there’s no point in doing it. While programmes are not perfect – we are all learning – it is a huge improvement that patients are now being involved.”

He explains that the cognitive occupation-based MS (COB-MS) programme aims to help participants to maintain employment, social activities and manage home and self-care.

MS is a condition of the central nervous system where damage to the protective coating around nerve fibres – the myelin – may lead to the person developing problems with vision, sensation, co-ordination, movement and also bladder and bowel control, depending on where the damage occurs.

Not designed for those with disability

Getting to this workplace, for seven hours a week, does take a physical toll on Robert, however.

Robert explains his own history of MS before relating his challenging experience of the first few days in the job.

“I’ve got a secondary progressive MS. I started off with the relapsing remitting type and I had that for about 10 years.

“And then I went on a particular medication and I was symptom-free for 10 years which was absolutely fantastic. But five years ago, I was in a car accident and that re-ignited my MS and now I’ve got a progressive form of the illness.

“That means my mobility has been impacted severely. I’m not in a wheelchair, yet, but I do need help.”

Getting to his work location and reaching toilets, for example, involved huge physical effort.

“When I started the job, I didn’t understand the distances that I would have to travel on the campus. Even getting a cup of coffee involved a lot of walking. The HSE did provide me with an electric scooter quickly, but it still wasn’t easy.”

While the first few days were challenging and a bit frustrating he was also glad to be the person who is developing a new path where patients are involved in research.

“I accepted that there would be times I would hit obstacles that I shouldn’t have to hit, but as long as something is being done about it that’s OK because that means that the path for the person following me will be much easier.

“That’s my hope, my aspiration, my desire for the wider consequence of me taking on this position in the university.”

New equipment advancements

As well as an electric scooter Robert has invested, personally, in a functional electrical stimulation (FES)device.

“Effectively, this expensive piece of equipment is a strap that I attach to my thigh and under my knee that makes my leg work again.

“That helps me walk around the campus but it’s something I had to find for myself. I’m still waiting to see if I will get some financial assistance with this.”

The diagnosis

Robert was 22 when he first experienced MS symptoms, and it was on his 23rd birthday that he got the formal diagnosis.

But what symptoms did he have initially?

“I had numb heels. I had just started a new job in London as a trainee chartered accountant after finishing a BComm in UCG (now NUIG) and after flying back for my graduation my heels felt numb.

“I put it down to coming from warm London to damp Ireland but it happened again and I went to my GP. I was quickly referred me to an MS specialist neurologist in London who diagnosed me a few weeks later.”

This diagnosis was a huge shock for Robert.

“It was horrible and when I looked MS up in an encyclopaedia – before internet days – the outlook looked kind of grim. I stuck it out in London for 18 months but then came home.”

Robert says that he was fortunate on the work front that his parents had a craft shop in Clifden.

“I set up in a corner of it selling souvenirs for a while and it helped me recover. It was the only way I could work, being able to adapt my day to suit my illness.”

Life nowadays is very much about pacing himself, he says. “That’s the challenge and frustration of MS, trying to accept that your body can’t do some things anymore.

“Focusing on the stuff that you can do is a real challenge and continues to be so.”

Robert talks about the cognition difficulties he has experienced himself as a result of MS.

“You can forget what you went upstairs for – short-term memory is affected – so that’s the cognitive loss.

“Or you may not be able to think of a word when you want to or you can’t handle conversations where several people are talking.

“It gets all jumbled up into one big mess so going to places like a bar or restaurant, where there are crowds of people can be very difficult.

“Reading can be difficult too. You read a paragraph and you may not remember what you read.”

Cognitive loss can, of course, have a huge impact of people’s daily lives.

“It can actually mean that someone can’t drive anymore,” he says, “because they forget what to do. It can also affect your work because you can’t concentrate for more than half an hour if you’re being asked to think about something new.”

MS in the west

He points out that the incidence of MS varies across Ireland.

“There’s a higher predominance of people with MS in the west of Ireland, particularly in Donegal. If you take it that, overall, the country has an average of about 73 people with MS per 100,000. However in Donegal there are 290 per 100,000.”

But why is this?

“They don’t know for sure, but one factor may be the weather. Dampness and lack of vitamin D from sunshine as well as diet can be contributing factors. My desire is to live in Spain.”

Requirements

To participate in this research you don’t have to have any particular type of MS or be at any particular stage of it.

The only requirement is that you have the condition and are experiencing some cognitive difficulty. One hundred and twenty people are being sought.

“We will assess those who meet the criteria for the study and they will participate in a double blinded test.

That means that some of the people will receive the therapy and some won’t but those who don’t will receive it when the study is complete.

“There is no medication involved. It will be about learning techniques that will help them with their cognition.

“An initial meeting with an occupational therapist will be followed by a series of group sessions at a convenient location.”

If this feasibility study proves successful another study involving 1,000 people is planned.

He points out that there will be occupational therapists administering the therapy in each county so that participants won’t have to travel far.

“That’s important because the travelling can be an issue for people with MS.”

Cognitive rehabilitation

Dr Sinead Hynes is the principal investigator in the programme and a lecturer in occupational therapy in the School of Health Sciences in NUI Galway.

She has worked hard to develop the therapies that will be provided by occupational therapists.

“Through this research, funded by the Health Research Board, we are hoping to improve the daily lives of people living with MS. Up to 60% of people with MS have some degree of cognitive difficulty and yet there is little good-quality evidence available in the area of rehabilitation for these difficulties.

Services in Ireland are also limited and so we aim to equip occupational therapists with the skills to deliver cognitive rehabilitation programmes to people with MS and through this to improve functioning and the daily life of people with MS.

We’re hopeful that the programme (the COB-MS) will benefit people living with MS on wide-ranging outcomes.”

Participants with MS must be over 18 and experiencing cognitive problems. To participate in the programme or for more information email cobms@nuigalway.ie or call 087-449 1154 as soon as possible

For MS information and support see www.ms-society.ie or telephone 1850 233 233.

See Robert’s blog a30minutelife.com for tips on coping with MS via meditation and journalling.