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 .

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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

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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.

Kayla is an amazing winning athlete – oh, and she has MS

kayla 1

Although I might be in danger of being accused of sounding like a broken record, absolutely no apology is coming from me.

If you have read the ‘CAN do attitude to life’ page on this website, you will know that my approach to having multiple sclerosis is to concentrate on and enjoy what I can do. I refuse to waste my time regretting things that can no longer be achieved, nor to worry about what the future may or may not hold. It is a matter of doing what you can, controlling what you can and to hell with everything else.

What’s more, it seems that I am in good company as I have recently discovered the following quote on the fantastic Ireland, Multiple Sclerosis & Me website of fellow blogger Willeke Van Eeckhoutte. The quote is from Stephen Hawking, renowned scientist and director of research at the Cambridge University Department of Applied Mathematics and Theoretical Physics, who has motor neurone disease or ALS. He said “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.”

On a Facebook page, I discovered the inspirational story of a girl who embodies this undaunted spirit to which all of us should aspire. It is the story of Kayla Montgomery

Kayla is one of America’s best long distance runners but the amazing thing is what she has had the emotional strength and perseverance to achieve – despite having multiple sclerosis.

Now aged 18, it was when she was 14 that MS was discovered. She was then an avid football (soccer to my American readers) player but a fall led to a loss of feelings in her legs – and that was the start of a painful voyage of medical tests ending in diagnosis of MS.

She had to give up contact sports, so she started running and kept running.

At first she had only an average ability and was not very fast – but genuine commitment and a trainer whom she told to push her as far as she could go has led her to great success. Title after title, record after record have fallen to this young lady from North Carolina.

She says that during a race her legs go numb, starting with her feet and working upwards so she feels no pain but, of course, she gets hot from the exercise involved and that is something that all of us with MS know is going to exacerbate symptoms if only for a short space of time.

At the end of each race, as she stops running, Kayla’s legs give way and she collapses into her coaches arms. He carries her off the track and her temperature is brought back to normal using ice and water.

It seems a high price to pay but Kayla is a brave and determined to use her legs as long as she can.

You can catch ESPN’s video called Catching Kayla on You Tube.

Dream the impossible dream…..but sometimes our dreams do come true

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Left: The beautiful Na Pali coast, Hawaii in December. Right, reindeer in Norway, in July.

Dream the impossible dream? Ok, ok, what’s he rambling on about now?

To tell you the truth, my dreams only really started to come true after I met Lisa. Let me explain.

I first married in 1977. It was on 26th February to be exact, I was 24 years old. Over time, the relationship deteriorated until we were finally divorced on 5th September 2011. Somehow it had managed to last nearly 34½ years. It should have ended years earlier but inertia kept it going.

It was not a life in which I was happy. Of course, there were good times but overall neither of us were enjoying the marriage.

My earliest dreams that I never, ever thought would come true were as a youngster. My mum (who would eventually become a top breeder, exhibitor and international judge of Pembroke Welsh Corgis) sold a couple of dogs to someone in Honolulu. It sounded so exotic but was so far away, so out of my reach.

Australia was another country on my dream list, also sparked by mum exporting dogs there.

Similarly, at high school there was a trip to the USA but it was expensive and I thought it was too much money to ask my parents to find. So I said that I didn’t want to go but, in reality, I would have loved it.

During my first marriage, I wanted to go on a cruise but that was not to be. In fact, I had dreamed of crossing the Atlantic on a liner since that form of travel caught my attention as a child watching television.

Then it all changed. I won’t bore you with exactly what happened and when; it is enough to say that Lisa and I met virtually at first, playing a computer game. That was in October 2009 and after two years, and two divorces, we married.

married2  Lisa and I on our wedding day at sunset.

Not any old marriage ceremony for us though. We married on a beach in south western Florida, where Lisa then lived. It was at sunset on 31st October 2011, it was attended by Lisa’s mom, sister, brother in law and two of our friends whom we had also met online. That was my very first trip to the USA. A dream wedding in a dream location, with dolphins playing just off the beach.

A cruise holiday was next on my list and that came true in 2013 after I received a £1,200 grant from the short break fund of the UK’s Multiple Sclerosis Society. It was great, two weeks on board with various shore visits in and around the Norwegian fjords. That was on Lisa’s dream list too as her dad’s family were from Norway, so she is half-Norwegian.

A second, week long cruise, followed a few months later. This time we few to Milan for a circular cruise around the Mediterranean. A day on Sicily ticked off a second dream on Lisa’s list as her mom’s family came from there, making her half Sicilian.

Last year, we enjoyed an absolutely magnificent holiday. In December, we flew to Honolulu (childhood dream) and enjoyed three full days there visiting a luau and Pearl Harbour– among other things. After that we boarded a ship for a seven day cruise around the Hawaiian islands, with shore excursions every day. The whole trip was warm and sunny, even in December.

We then flew to New York (high school dream) and spent three full days there. My ex had never wanted to go to NYC but Lisa was born and brought up there and so I was given my own personalised tour with a very special tour guide. Highlights were riding to the top of the Empire State Building, going to the famous Radio City Music Hall to see its Christmas Spectacular, Times Square, Central Park, the 9-11 Memorial which I found very moving, the Rockefeller Center and store windows all decorated for Christmas.

Added to that, we travelled a little outside the city to meet up with Lisa’s other sister and her husband, plus their children and grandchildren.

Needless to say that the weather in New York was more wintry than in Hawaii but we went prepared for both.

This year, we are in for quite a busy time this autumn. In October we are sailing on an eight-day Atlantic crossing (childhood dream) from Southampton to New Jersey, then spending nine days touring several north-eastern states. We fly back – and then we are moving to Spain. There we will be able to escape the rainy British climate and be able to soak up sunshine for much of the year. And that is fulfilling a dream that I only had early this year.

Do I have dreams left on my list? Oh yes, a cruise taking in Australia, an African safari (photos only, no shooting), a Caribbean cruise and a second trip to Hawaii are all high up there.

But my biggest dream has already come true and I live it everyday. I am talking about meeting and marrying Lisa. She is the one true love of my life, my soulmate, my lover, my best friend – my everything. We make each other so happy and so full of life that my illness, my multiple sclerosis, pales into insignificance. That’s what dreams are made of.

 

 

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.

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.