VIDEO: Sharing and caring at Parkinson’s support group

St John’s Hospice provides respite and care for people with cancer and other life limiting illnesses.

The hospice also works in conjunction with Parkinson’s UK to provide a support group for Parkinson’s sufferers.

Senior reporter Michelle Blade spoke to Pat Howard, secretary, treasurer and fundraiser for Parkinson’s UK Lancaster and Morecambe support group to find out more.

The Oak Centre at St John’s Hospice hosts a support group for people with Parkinson’s every Friday between 10am and 12pm.

The group, which held its first meeting on February 25, 2011, has 33 members, 14 ladies and 19 men, who all suffer from Parkinson’s to a varying degree.

Treasurer, secretary and fundraiser for the group Pat Howard, whose husband John suffers from Parkinson’s, said: “The hospice is not just for people who are terminally ill, it’s for people with all sorts of illnesses. My husband John discovered he had Parkinson’s 12 years ago when he was 51.

“It was quite devastating because everyone thinks its older people that get Parkinson’s.”

John Howard said: “My feet were going numb and I developed a tremor in my right hand. I was suffering tiredness and fatigue. I was sent to my GP who suggested I see a neurologist but there was a nine month waiting list.

“I paid to go private and saw a doctor who diagnosed me with it fairly quickly.

“I phoned Pat and said ‘I’ve got Parkinson’s. I didn’t know much about it so I got on the internet and found Parkinson’s UK and the Parkinson’s Disease Society.

“I joined both and got some free literature.”

Pat and John joined an exercise group for Parkinson’s sufferers that met at the Church of the Ascension in Torrisholme but eventually that folded.

Pat said: “A woman called Sheila Vogerly ran a small young Parkinson’s group and she got in touch with us. We used to meet at each other’s houses. At one meeting a lady came along and put it to our group about how would we feel about starting a support group, what it would entail and where it would meet.

“We decided to meet at the hospice and also have a physio. We would meet at The Oak Centre every Friday between 10am and 12pm.

“We held our first meeting in February 2011 and are still going strong two years later.”

Members of the group come from Lancaster, Morecambe, Garstang, and Heysham.

There is a free taxi service for members who can’t get to the meeting which Pat and John can arrange.

Members can enjoy massage, therapies and talks.

Over the past two years, the group has grown in numbers and achieved all sorts.

Fundraisers have donated money raised through various events and the Parkinson’s group holds various events throughout the year to raise much needed money.

Pat said: “We received £2000 from the Heysham Rose Queen Tilly, who had raised the money over the year. She raised £2000 for the stroke group as well.

awareness

“That £2000 paid for the group’s exercise classes from June 2012 to June 2013. The year before we approached the Galbraith Trust who paid for the exercise classes for the year 2011 to 2012. The current Heysham Rose Queen Elise is raising money for the Parkinson’s support group and Morecambe Road School between 2013 and 2014.”

During Parkinson’s Awareness Week in April, the group has a stand in St Nic’s Arcade in Lancaster to raise awareness of the condition.

However Pat said: “It’s not just about the money. We are a support group rather than a branch.

“Members of the group pay £1 a week and get a lunch in the summer, a Christmas lunch and two trips a year.

“We also arrange speakers to come to meetings and speak to the group. Past speakers have included Don Holroyd, the Bird Man of Torrisholme and a senior consultant from the Walton Centre in Liverpool came to speak about the medication available for Parkinson’s sufferers.

“Penny Foulds from Lancaster University is researching an early blood test for Parkinson’s and members went up to the university for a talk by her.

“The hospice let us use the room for free for a donation at the end of the year.

“We have what we call the Blackpool holiday project where a Parkinson’s sufferer and their carer can enjoy a week away in a hotel for just £240 each.

“We’ve done all sorts in the last two years.”

The group provides much needed support for Parkinson’s sufferers and relies on volunteers to help out at meetings.

Pat, 66, said: “My husband John is lead co-ordinator and I’m secretary, fundraiser and treasurer.

“We have volunteers Margaret and Tony Stephenson (Tony has Parkinson’s, Jean and Malcolm Townson (Malcolm has Parkinson’s) Geoff and Jane Ousby (Geoff has Parkinson’s) and Pam Walsh.

“Geoff is the meeter and greeter, Jane does the social organising, Margaret does the catering, and Jean talks to people. Not only for the sufferers, the meetings give the carers the opportunity to share their burden. Carers are forgotten and some people in the group can’t leave their houses because of their partner’s. The work is very demanding for the carers as well. Depression can get you down.”

friendship

Geoff Ousby social organiser for the group, said: “I think the main reason people come is to meet others in a similar situation, to exchange views, receive information updates from Parkinsons UK via Pat and just to enjoy the warm welcome and friendship which abounds.”

John Howard said: “It’s sharing the experience with a number of people who have the same symptoms as you.

“The group gives you the opportunity to meet people and enjoy their companionship and feel you are not on your own. It also gives people the opportunity to meet other sufferers.”

A member of the support group said: “When I was first diagnosed with the disease two years ago there was a lack of information at the hospital. Most information was available online and there I found the details of the group. The Oak Centre at the hospice is a lovely place for a coffee and biscuit with other people in the same situation. It is informal and friendly. There are exercises with a physiotherapist on alternate weeks and I find these very useful. The main advantages I have from going to the group are meeting people there both older and younger. Symptoms can be discussed in an informal way and the excursions are very enjoyable. There is a support worker who sometimes calls to advise on benefits and so on. I really can recommend this support Group for anyone with Parkinson’s.”

John Howard said: “The Parkinson’s Lancaster & Morecambe Support Group (L&MSG) fully supports the #Saveourhospice campaign, and recognises the importance of the work done by the hospice. Without the facilities they provide our group could not function as it does, meeting weekly and providing exercise classes and a drop-in social forum.

“The hospice is entirely funded by donation, so we ask that people give generously so that their and our work can continue.”

Parkinson’s Support group for Lancaster and Morecambe has a Facebook page which provides information about meetings and the nearest group to join.

To find out more visit https://www.facebook.com/#!/lancasterandmorecambeparkinsonssupportgroup.For more information about the Parkinson’s Support group call Pat Howard on 01524 770831, mobile 07772 885260 or email path1946@live.co.uk.