Our trip to hell and back! Really? Back? 

Hi everyone, sorry it has been so long since I last wrote but what started as a dream vacation two months ago, turned into a nightmare. A nightmare that has not yet finished.

It will take me more than one post to let you know what happened. For now, I’ll just give you a brief summary. More details will be given in further posts in the next few weeks.

It all started about a week before my wife Lisa and I were due to leave. We could smell gasoline in our car when it was idling, so we took it into our local repair shop. Two days later, the bad news arrived. The car needed a new engine.

We are on first name terms with the boss, so when he suggested our car be scrapped – that is exactly what we did. Then, and now, there’s not enough money in our bank to replace it. We are stuck at home. We are in the country, nearly a mile from the main road but even there, there is no bus service. And our nearest town is a good 20€ taxi ride away. A car of our own is essential.

Holiday dream shattered

Anyway, back to our vacation.

We had already pre-booked a ride to the airport. He was an hour late, great start.

Flight one, no problem, but flight two was delayed. This meant missing our connection and having to take a replacement flight the next day.

Flight three went without a hitch. Phew, we were in Los Angeles.

We stayed in LA for almost a week, but we didn’t visit anywhere or take a tour, as we gad planned, for reasons I’ll explain in another post.

That Sunday, we flew to San Diego and boarded our cruise ship, the Carnival Miracle. That turned out to be the worst cruise of our lives! Watch here to discover why.

Back in San Diego after the 7-day trip, we had a one-night stay in a hotel. The next morning, I was rushed to hospital by ambulance. Instead of going home, I was set for five days in hospital – and, not having travel insurance, now face a bill of nearly $40,000 .

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

To help me meet the costs of a wheelchair accessible vehicle and the hospital care, I have started a Go Fund Me page. Please help by making a donation, however small, HERE.

Thank you

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

 

Advertisement

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.

 

 

 

Steps towards Spain

Work 1 

Bathroom fitments removed and stored in bedroom while wet-room is fitted.

Preparations for our great move to Spain continue apace with Tuesday witnessing another step, actually two steps, along the journey. Then, one more step was taken this morning.

First step: Pictures have arrived showing the work in progress to turn the dream home we found into one that is absolutely perfect and one in which I can live comfortably with my disability. Although I don’t need it now, Lisa and I made the important decision to buy a home in which, if needed in the future, I could use a wheelchair indoors.

In truth, if it ever happens, that should be several years away but as we are making a big move, really a lifestyle change, we decided to be ready for whatever Multiple Sclerosis may hold for me in the future. We don’t want to be forced to move again.

One of the key improvements being made as part of the package of conversion works is the provision of a wet-room. The bathroom fitments have been stripped out already and a full wet-room is about to be installed complete with a fully accessible level entry walk-in shower that will also be suitable for a special roll-in shower chair,

Step two we made without actually needing to do anything more ourselves as we had already done our part. It came in the form of an email from Paul, the driver/courier from Anyvan. He let us know that our possessions have arrived safely in Spain and have been delivered into our new home. Nothing more can be done with those until we get there in November.

I have to say that Lisa and I are both so impressed with Anyvan’s method of operation in which any of its couriers who want a particular job bid against each other to win the business. That way the client can get the best possible price. What’s more, the professionalism, courtesy and willingness to be as accommodating as possible – as clearly demonstrated by Paul – show all of the company’s associated drivers in the best possible light. They really do seem to know everything about giving top-rate service and superb customer relations. We would have no hesitation in using their services again and would highly recommend them to others.

Step three took the form of a visit to the vets this morning. Having given both Pooka and Prissy a health check-up, the vet scanned the microchips they had implanted before their trip here from Florida in March 2012 and gave them both their rabies vaccinations.

Tomorrow, we have to go back to the vets – just us, not the cats – to pick up their ‘pet passports’ that will allow both of them to enter Spain without going into quarantine.

Just one more thing to do today, this time because of our holiday before we leave for Spain, and that is to telephone the cattery to book the cats in for their stay while we are in the USA.

If you wonder why we have a holiday just before moving abroad, the holiday was booked before we decided to move; then the money came through from my former matrimonial home. It is all a bit of an almost runaway train but one of our own choosing and in which we are enjoying the ride.

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?

Caring through love not duty

IMG_0334

High above New York City on the viewing gallery of the Empire State Building.

To misquote a well-known Shakespearean saying about greatness: some people are born carers, some people learn to be carers while others have the role of a carer thrust upon them.

In the case of my carer, the last one is most definitely true. Not that my carer thinks that what she does is any more than any loving wife would do but Lisa has to cope with quite a lot – which she does exceedingly well, without complaint, and usually with a smile. And this is despite her having diabetes and a touch of arthritis.

She says she does it out of love not out of duty.

Actually, we both had to laugh when we looked at the requirements for her to claim the UK’s Carer’s Allowance benefit. It says she has to provide at least 35 hours of care a week. Oh, if only it was so little. She provides me with many more hours of care than that. In fact, she rarely goes out leaving me at home alone; and it is almost unheard of for me to be allowed out by myself. And I do mean ‘allowed’ as while, in most cases I have the final say, where my health is concerned Lisa is in charge.

Care covers a whole multitude of things that most able-bodied people take for granted, such as preparing my food, cutting up meat so that I can eat it easily because I cannot hold a knife and fork at the same time, helping me to shower and dress, getting my wheelchair in and out of the car, wheeling me about, and physically supporting me if I try to walk a few yards using my walking stick.

And that does not include extra washing of clothes and/or bedding if I have an accident involving problems with my waterworks. Then there is responsibility for my medication, ensuring we have enough of each one, preparing correct doses and making sure I take the correct tablets at the proper times.

At home, although our new home in Spain is suitable for wheelchair use, I do not yet need to use one indoors. Instead, I get around by supporting myself on furniture and the occasional grab rail. Sometimes I fall and Lisa has learned not to rush to help. If she is in another room, she just calls out to ask me if I am all right. A negative answer or no answer at all would bring her to my side in seconds.

One thing that is remarkable about Lisa is that she married me knowing that I have MS when her only previous experience of the illness was her grandfather and he, it seems, chose to be a sufferer not a fighter.

As my wife and carer, Lisa has to cope with so much, day and night, seven days a week. She has to contend with my occasional outbursts of frustration, my impatience when something won’t go right first time and, sometimes, my determination to do something that I am no longer physically able to achieve – that usually ends in a fall. I often joke that the floor and I are on very good terms as we spend so much time together.

In the ‘CAN do’ attitude to life page on this website, Lisa says I am her hero because “He truly amazes me every day. I don’t think I know a more positive person.” However, in truth, she is really my hero, or heroine if that word is still used today, for all she does both seen and unseen by others.

Lisa is my love, my lady, my life, my very best friend and my carer. She knows that I have a positive outlook on life but she is my strength when I am weak, my support when I am in danger of falling, and, above all, the most wonderful person in my whole life.

 

 

 

MS is the driving force behind our move to Spain

There were a number of factors which lead Lisa and I to want to move, then to decide roughly where to go and finally to choose what we consider to be our perfect home but, without a doubt, multiple sclerosis was – and is – the main incentive.

Let me explain. Taking things in order, we realised that our present rented flat is not suitable to convert to being totally wheelchair friendly if my MS deteriorates enough for me to reach that stage. Currently, I do not use a wheelchair at home, only when I am out and about. But we had to think of what the future could hold, so we needed a place that either was already suitable or could be easily converted if the need does arise.

Secondly, we knew that my former marital home was for sale and a deal would be likely to be finalised by the summer and then I would have just six months to spend it on a new home without my benefits being affected.

So, having decided to move, we then started to look. We scoured websites like Rightmove that are popular ways for estate agents to advertise properties they have for sale but nothing seemed to match our needs.

We were getting fed up with the weather and we both wished for more sunshine. Also, we had noticed that my MS symptoms seemed to get worse as temperatures changed; more consistent weather was called for. Then, one day we were talking about our holiday two years ago when, on my November birthday, we had been sitting outside a Barcelona bar sipping Sangria in the sunshine. And that was when I suggested to Lisa that we should move to the south of Spain.

She was unsure at first as she didn’t want me to later regret leaving the nation of my birth. No such trouble for her though, as Lisa left the USA more than three years ago. Also, for the 18 years before she moved to Wales she lived in Florida so had become used to hotter temperatures. Anyway, once she was reassured about my feelings, she was as enthusiastic as I had become.

Picking an area of Spain was a little more difficult as we did not want to be far from the sea but wanted to live close to Spanish people and did not want to be surrounded by tourists. We settled on Almeria province but not the city itself, the home we found is within easy reach of a little village but only a 15 minute drive from the Mediterranean.

After looking at details of many Spanish properties online, we knew we had to take a trip out there, which we did at the end of April. It was so worth it. We knew as soon as we entered the second property that it was for us. It felt like our home and while I was sitting talking to the owner, Lisa was already working out in her mind what could go where.

Our living room in Spain looking from the back door through the wide arch into the kitchen diner. Beyond the display cabinets on the left is another wide entrance way into the hall that gives access to the wetroom and two bedrooms

Some work needed to be done before we move in but this is already in hand. We agreed the details and accepted a quote and the seller, who lives nearby, agreed to oversee the work for us. When I received my share of the money from my previous matrimonial home, we completed the purchase of our dream home that will be wheelchair accessible right from the start. Actually, we received the money into our bank account on a Friday and we completed the purchase on the Monday.

The work includes stripping out the old bathroom and installation of a wet room complete with a large shower area with a fold-down seat, fitting a new wider back door and fly screen leading from the living room out onto the decking, a ramp from the back garden up to the decking and a levelled and resurfaced walkway from the drive to the back garden. There is other work being done as well but these are the main items to make life easier for me.

It really is ideal and living in the warmth with plenty of natural vitamin D will be perfect.

As an added bonus, we even have a second bedroom so friends and relatives can stay.

It’s official – Cloudy skies are bad for our health

Just had to allow myself a little smile of satisfaction when scientists agreed that Lisa and I were correct in making our decision to move to sunny Spain from cloudy, rainy Britain.

Well, of course, that is not what the actual report said – as no boffin is really going to analyse our decision-making abilities – but what it did say was the main reason behind our forthcoming move to a warmer climate.

The news was revealed in The Guardian, a UK national newspaper, in a report headlined Britain not sunny enough for healthy vitamin D levels, say experts.

According to scientists who jointly advise the UK government, people in Britain suffer from a vitamin D deficiency because of a lack of bright sunshine. They say that British weather prevents much of the population from receiving healthy amounts of the essential vitamin from sunlight, and that natural food sources alone are not enough to boost levels.

Their answer to the problem does not urge following us in a mass emigration but does suggest that people generally should increase their vitamin D intake with supplements.

The advice is contained in draft recommendations from the scientific advisory committee on nutrition (SACN). Although I, for one, had never heard of this worthy group before, apparently it is an independent advisory body to the government and their view could lead to new guidance being issued on the subject.

Even more interesting for me is that the committee made its recommendation after studying the links between vitamin D levels and multiple sclerosis along with a range of other health problems including musculoskeletal health, heart disease, type 1 diabetes and cancer.

Living with MS, I have known for some time of the link between the illness and vitamin D deficiency and had been advised to take daily supplements by my MS Specialist Nurse. The potential health benefit to me of more sunshine, so more vitamin D, was a key factor in our decision to move.

Speaking to another newspaper, the Independent on Sunday, vitamin D specialist Dr Adrian Martineau said the new advice marked a “sea change” in thinking.

He said “Before this, the general assumption was that adults were able to make all the vitamin D they needed from sunshine, and didn’t need to have any dietary or supplementary intake. The action of sunlight on the skin in the UK is highly variable for different populations depending on the time of year and the latitude – you’ll get more UVB in Brighton (south of England) than in John o’Groats (north of Scotland) – and finally, how much skin is exposed and the colour of skin.

“SACN was right to say that we can’t rely on sunshine in the UK to meet the vitamin D requirements. That’s a major and important change. It’s a big step forward that this is now officially recognised.”

Need I say more?

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.