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Can you hear me now? Parkinson's support group

Parkinson’s support in Dublin

Every month, a group of 12 or so people assemble in a meeting room on the Navan Road in Dublin. While they look like a bunch of friends discussing the latest news, this simple gathering has been helping to transform the lives of those in attendance.

Video: Can you hear me now?

Promotional video for the 'Can you hear me now?' Parkinson's support group

This is the voice and support group for people living with Parkinson’s Disease, set up last year as part of the HSE Speech and Language Therapy Services in Primary Care based within Dublin North City locality.

They have been sharing their stories and the invaluable services provided by the support group and the HSE speech and language therapists on the new Our Health Service website.

The group meets every second Thursday of the month in the Navan Road Primary Care Centre.

Voices and values in action

It focuses on different areas; continuing voice exercises to help maintain a loud, clear voice, and to give time to practice using a louder voice in group conversation.

Providing education and guidance on living well with Parkinson’s Disease, there’s an emphasis on close collaboration with fellow professionals in the HSE, such as physiotherapists, occupational therapists, dieticians, psychologists, and clinical nurse specialists. Other speakers from voluntary organisations and acute care settings have also contributed to the education sessions.

The group also provides a regular positive, supportive environment for people to share stories and experiences about living with the disease. As an evidence-based care pathway, this group is meeting the needs of clients living with chronic conditions and is an example of the values of Building a Better Health Service – care compassion, trust, and learning – in action.

Bill Hughes from Cabra, who has had Parkinson’s Disease for four years, revealed that the group is one of the few outlets he has:

“Some days are good, some days are bad. I look forward to coming here every month. This is the only outlet I have, and fishing.”

Gary Boyle, a fellow group member, agreed:

“I was diagnosed in September 2009. I was 44 at the time and I was devastated. I was lucky at the time to be referred to speech and language therapy and I did a very intensive course with Ruth which we have all done. The name that we came up with for the group was very important too - ‘Can you hear me now?’ It really fits with what is going on here,” said Gary.

Speech and language therapy sessions

Aideen Lawlor and Margaret Creevey are the Speech and Language Therapy Managers in Dublin North City Area and the two Speech and Language Therapists involved in running this PD group are Caoimhe McDermott and Ruth Talbot.

Aideen explained that there are over 12,000 people living with Parkinson’s Disease in Ireland and the vast majority of these people at some stage are going to have problems with their voice.

“The earlier you intervene the better so we identified a list of people on our case load who needed intensive speech and language therapy and that involves 16 sessions in four weeks. It was best practice then to offer a top up service so they maintain the skills they have learned in the session and the people who attended the individual therapy session all identified that they would like to do this in a group setting,” said Aideen.

“It’s a progressive disease and things can change. Because they see them every month, it’s very easy then for the speech and language therapist to act as a gate keeper and as a support for them to say ‘well why don’t you contact such a service, maybe the physio, maybe you need to go and see your GP’.”

Parkinson's Support Group, Declan Moriarty, Barry Kehoe, Bobby Warren, Bill Hughes, Gary Boyle, Jimmy Fitzgerald, Patricia O’Connor and Alice Roe
‘Can you hear me now?’ Group members: Declan Moriarty, Barry Kehoe, Bobby Warren, Bill Hughes, Gary Boyle (Top row L-R). Jimmy Fitzgerald, Patricia O’Connor and Alice Roe (bottom row L-R)

Improving outcomes through a holistic approach

Through inclusion of other medical professionals in managing these conditions, an evidence-based care pathway has been developed that’s seeing real improvement for patients, who are finding it helpful to be able to talk to people in similar circumstances, learn new things, share ideas and experiences, and know that they’re not alone in their diagnosis.

In typical treatment for individuals, there is an absence of the peer and social supports which is known to have such a positive impact on the person’s health and overall well-being. Providing this support reinforces the need for a holistic approach to the treatment of chronic diseases such as Parkinson’s.

Speech and Language Therapist Ruth was full of praise for the service users who are attending regularly.

“We did always say that we wanted it to be their group and we wanted them to take ownership of it. And they have done just that in a way we could never have expected. It’s just this really safe space where they are all very comfortable with each other.

They are very open and they can get great support from each other."

They can talk and get comfort in a way that family members or people who don’t have Parkinson’s or a similar condition wouldn’t be able to.”

Declan Moriarty explained the challenges that people with Parkinson’s Disease face.

“I find that people don’t understand Parkinson’s and think that you are drunk. You are unbalanced, your speech is slurred. My fingers are stiff, my feet won’t move sometimes. On a bad day, I am a wreck. On a good day, you wouldn’t know I had it. That’s the stressful thing, you don’t know what’s coming your way that day,” he said.

Coping together

Alma Keating revealed that things have been getting worse for her lately and the group has provided great support on the bad days.

“I’ve been going grand for 10 years but now all of a sudden I’m falling, my swallow is getting narrow and I can’t eat. I’m only 46 and for me, that is a big thing. Telling my kids that I had Parkinson’s was very hard. I find coming here is very beneficial. It’s helping me and I’m learning more. People are different, we all have different ways of dealing with Parkinson’s. I don’t normally talk in groups either. I don’t shut up now,” said Alma.

Chris Rogers urged fellow Parkinson’s Disease sufferers to join a group near to them.

“At times you get very down and get very depressed but then you get up and you have a good day and you are back on your feet again. And then you come into this group and you get a bit of slagging. There’s no respect for age at all. It’s a great group, they are friends, they are colleagues. I look forward to coming to the group and I am very grateful to be allowed to join the group,” said Chris.

“If you have a group like this in the locality, I would say join up. It’s the only way you are able to vent some of the frustrations that you have. Join up.

Even two people in a group having a chat for an hour once a week or once a month is beneficial. It worked for me.”

How to join the group

The group meets on the second Thursday of every month from 10am to 12pm in the Navan Road Primary Care Centre, Navan Road, Dublin 7. The group can be accessed through referral into Speech and Language Therapy services within Dublin North City area and the clients have all attended for individual therapy within the service previously.

Individual outcomes of client’s participation in the group are positive with self-reports of clients being able to communicate more effectively in their home environment with increased confidence and insight into how to manage life with Parkinson’s Disease.

It is hoped that it’ll be possible to set up further groups in the area due to the high demand from clients on the Speech and Language Therapy caseloads requesting this group.  Another group has been set up in the area since July 2017, the structure and format are being replicated in the Ballymun based clinic.