Have MS? Don’t give up, join a support group

MS Synergy poster

Support groups have a very important part to play and none more so than MS Synergy that operates in North Wales, UK.

Groups like MS Synergy enable people with multiple sclerosis to meet others in a similar position – while carers, family members and friends can get together with their counterparts as well as MS professionals and anyone with an interest in the illness.

It gives everyone the opportunity to meet, swap experiences and socialise regularly.

Synergy is an independent support group, not part of any other MS body, and operates as a small charity under UK charity law. It raises funds to meet its own expenditure and it is run by volunteer officers who do not receive any form of payment for their work.

I have been honoured to be the group’s secretary for the first two years of its existence as an independent charity and now, even though Lisa and I have moved to Spain, we remain committed to helping out from afar.

The publicity poster reproduced above was written and designed by me. It’s message is a simple one: Just because we have MS, there is no need to give up on life. We are people who have a disability, we are living with that disability and, most importantly, we are people – just like everyone else. People everywhere, with MS or not, can all have fun and dignity.

There are many support groups around the world, not just in the UK. If you think one might help you, then look for one near you. And, if you live anywhere in North Wales, just contact MS Synergy. Just email secretary@mssynergy.org.uk or telephone UK number 01444 390392.

Ups and downs during journey to Spain

Joanne and us_edited

Lisa and I made our final farewell to North Wales on Saturday evening with a meal at the Paanshee Bengali restaurant in Prestatyn. We were delighted to be joined by Joanne Jones with whom we have become friends since meeting at MS Synergy. Thanks to Faruk Miah and his colleagues for yet another great meal and thank you, Jo, for being there.

Sunday started early when the wake-up call at Clayton’s Hotel, Manchester Airport, came through at 3.45am. Lisa and I got out of bed and made ourselves ready to catch the 4.30am shuttle to Terminal One.

We stopped first at the assistance reception. I was in my own wheelchair but Lisa had hurt her leg and was given an airport wheelchair.

Our Easy Jet flight to Alicante was due to take off at 6.40am and, usually, you can spend a great deal of time checking in and getting through security. This time, though, nothing could have been easier and left plenty of time to eat a good breakfast before boarding our plane.

By the time it came to board, it was wet and very windy – and that’s when we realised that we had left Lisa’s jacket in the hotel where we had stayed in Llandudno on Friday night. Too late! However, we boarded quickly and the aircraft was quite warm, so no harm done.

Arriving in Alicante, we were met by two assistants who quickly passed us through passport control, which was not staffed, recovered our luggage and we were soon in the public part of the terminal; neither of us noticed any customs area.

Gaining our hire car was next but this meant a delay as Goldcar had the most customers, probably because it had the best deal when we booked. The company has a new system for customers who had pre-booked – no need to line up, just tap a touch screen, gain a ticket and wait for your number to be displayed. Some people, mainly my fellow Brits, said they would complain about the long delays supposedly caused by the waiting system.

When I finished the transaction, one woman asked me if I complained, to which I replied: “No, there’s nothing to complain about.” You see, while Goldcar did contribute to the length of its own queue/line by having the best deal; the waiting time was not made any worse by that. It is just queue management, for the benefit of the customers. My only suggestion to Goldcar would be to put a notice about the ticket system at the start of the company’s area, not just by the touch screen on the counter. As it was, word got to newcomers by word of mouth.

Anyway, armed with car keys and papers we did not have long to wait for our wheelchair pushers to reappear. We set off for the car park and had left the terminal heading for the car park when I saw Lisa’s wheelchair catch a clearly visible ridge at the top of a dropped kerb. The chair jammed suddenly and Lisa was thrown forward into the roadway; thankfully there was no traffic there. She already had a painful leg, now she hurt in more places but hopefully nothing more serious than that. It took four people to help Lisa back into the chair and many apologies from the pusher who did not take sufficient care in his work and was negligent towards the well=being of someone in his care. It was an ‘accident’ but it was completely avoidable.

The drive from the airport to our new home was more or less uneventful. Well, apart from my legs giving way as I went down two steps quicker than intended having just stopped for coffee. Four Guardia Civil traffic officers ran to my aid and two of them helped me to my feet.  Lisa explained I have Esclerosis Multiple and they watched as I returned to the car without further incident.

Oh, almost forgot, weather here is warm and sunny.

 

North Wales MS charity set for year ahead

Future plans and activities for MS Synergy were decided by members at the annual general meeting held alongside its September monthly gathering earlier this week.

MS Synergy is North Wales’s own independent support group charity for people with multiple sclerosis and those affected by it, such as relatives, carers, friends or anyone with any kind of interest in the illness.

At the AGM, held at Prestatyn’s Paanshee Bangladeshi Restaurant on Tuesday 15th, members approved the annual report, adopted the accounts and took important decisions about future administration and organisation. These were finalised by making some minor amendments to the constitution.

After two years as chairman, Nigel Partington had already forewarned us that he had decided it was best for him to stand down. Naturally, everyone was sorry his health had prompted that decision and sent him their best wishes along with their hopes that he would attend future gatherings whenever he felt able.Kathy Ruane

In his place, the group was fortunate to be able to elect two Co-Chairmen. These are Christine Cooper  (below) and Kathleen Ruane (right). Kathy has MS and if her surname sounds familiar, that is probably because her brother is Chris Ruane, former Labour MP for Vale of Clwyd. He served as MP for 18 years before losing his seat at this year’s general election.christine cooper_edited

The role of secretary proved to be a little more difficult to fill but was resolved with the help of some lateral thinking and ingenuity. I have been secretary for the last two years but moving to Spain in November meant that MS Synergy needed a new secretary – or did it?

With no-one putting themselves forward, the meeting decided to re-elect me (below left) as secretary to do from Spain everything that I had always done on computer in Colwyn Bay. Let’s face it, that can be done anywhere in the world with access to the internet. The one important part of the work that needs a hands-on presence in North Wales, the organisationian gravatar_edited of the monthly meetings or ‘gatherings’, was given to another committee member.

Former long-term group organiser and, for the past two years, gwawr_editedtreasurer, Gwawr Jones (below centre), was re-elected to look after the finances while Eryl Thomas (below right) Eryl Thomas_editedjoined the committee as Gatherings Coordinator.

Three remaining committee member roles were left unfilled, allowing the committee to co-opt people in the future.

With me going to be many miles away, members agreed that future general meetings and committee meetings should include a free computer-to-computer video link to make it possible and feasible for me to take an active part and to take minutes. Isn’t modern computer technology wonderful?

One last piece of re-organisation agreed by the AGM was in regard to bank payments and withdrawals. The previous constitutional requirement was for each cheque to bear two signatures from any of the three officers. An amendment passed on the night now requires two signatures from any of the officers and committee members resident in the UK. That will make the treasurer’s work a lot easier.

  • MS Synergy is a ‘local small charity’ as defined by the Charities Act. As such, it is only allowed to raise up to £5,000 a year.

 

 

 

MS Synergy Independent Support Group looks to the future

Scan_mss poster

My beloved Lisa and I were out and about last night We weren’t exactly painting the town red but were attending the monthly social get-together of MS Synergy – our local support group for people who have MS, their families, carers and friends.

The group will be two years old next month, having split from the MS Society in September 2013 following abortive discussions about our desire, indeed our need, to have more of a say about our affairs without interference from the local area branch. When faced with an immovable object that absolutely refused to allow the group to operate free of branch controls but still as part of  the society, everyone involved in the support group decided unanimously to change our status to that of an independent support group.

Since then, the group has flourished. It is now a ‘small charity’ as defined by the Charities Act, the UK law that governs charities in the UK, it has its own health & safety policy including a laid-down risk assessment procedure, holds fundraising activities and is about to publish its second Annual Report.

In the year ahead, there are a couple of potholes in the road to continuing development. The first is that our chairman’s MS has caused his health to deteriorate to such an extent that he feels unable to continue in office; and the second is that Lisa and I are moving to Spain in November. In fact we are leaving on 26th October and going on a holiday to the USA before arriving at our new home.

With Nigel not standing for re-election as chairman and our departure to Spain (I am secretary and Lisa is a committee member), the charity has to look to other members to take on more responsibility. At last night’s social event, we discussed the issue prior to next month’s AGM and the outcome looks encouraging.

One member had already been asked to agree to stand for the role of chairman but she has not, so far, been very keen as she has a lot to cope with personally. She has MS, has three children of her own and two adopted children – quite a commitment. But, last night, another member said that she would be willing to be chairman. So, we were off to a promising start.

Organising the monthly gatherings, which is what we call our get-togethers, including booking the venues and sending out emails or text messages to our members and supporters, has been part of the secretary’s duties but we now have another member who is willing to join the committee and act as ‘gatherings coordinator’. Excellent. Although now retired, her experience as a solicitor may also be useful.

The biggest problem appears to be finding someone to replace me as secretary because no-one seems willing to undertake the role. After our discussion last night, however, we may have found a way through but it will be up to the AGM to decide.

When I detailed the duties our secretary needs to undertake, it became fairly obvious that in today’s electronic world most can be completed anywhere. Rather like working from home instead of commuting to an office. They could, we decided, be carried out as easily in Spain as in Colwyn Bay.

If that is the way that the AGM decides to go and I stay as secretary despite being in Spain, the secretary will not be attending committee meetings or future general meetings in person – but I could be there on a video link using the free Skype system. Of course, there would be a few other small points to clear up but, on the whole, last night the consensus was that we could make it work.

It may not be easy but what is a problem if not a challenge to be overcome?

Charity event in August, seaside resort in UK = clouds and rain

Just got back home from taking part in our last sponsored fundraising event before we move to Spain. Not the last event, just the last sponsored one.

This morning MS Synergy held its ‘wheel and walk’ on Llandudno promenade and the good news is that there was a pretty good turnout of walkers as well as those of us unable to walk very far and being pushed in wheelchairs. The number taking part this year was more than four times greater than last year.

Apart from raising money through sponsorship, we also took the opportunity to accept donations from people we met on the prom. I will let you know how much we raised as soon as I know.

Talking of a walk on the prom in a seaside resort town in August, it would be reasonable for you to think that we would have been blessed with sunshine and blue skies – but, sadly, this was not the case.

As is usual in the UK, the morning was heavily overcast but at least it was not windy. However, it did start to rain just as we were finishing.

The British weather was, in fact, the major factor in Lisa’s and my decision to move to Spain.

We are so fed up with rain, rain and more rain with only a rare appearance of any sunshine that we are moving to a place that has sunshine for at least 300 days a year. As for rain, where we are going, December is one of the wettest months of the year when rainfall averages just over 35 mm. And that works out at just over one mm a day. Colwyn Bay, on the other hand, has nearly 131mm in December while even its driest month, June, has almost 53mm. (All figures taken from World Weather Online statistics publicly available on the internet).

I think that the differences speak for themselves.

Although we are heading for the sun, rest assured that we are not doing so without regard to our health. We are both conscious of the damage UV can do to our skin and are fully prepared to take every precaution. Lisa, whose blood is half Sicilian, has a Mediterranean skin and she is used to the sun as, before coming to the UK, she had lived in Florida for 18 years.

By contrast, I am fair-skinned and burn more easily than I tan so sunblock will need to play a major part in my life. That goes for insect repellent as well because I was bitten a few times when Lisa and I visited the area in May but then I was not wearing any repellent.

You live and learn.