Wednesday, 26 May 2010


These days when it comes to helping with the boys' homework I am pretty hopeless! It is a stressful enough event with a full complement of communication skills so when I tried to help with jakes maths homework the other week, Jake only just beat me to breaking down into floods of tears through sheer frustration!

However this week, I was able to offer a little more help. He had been asked to find a poem which dealt with a dilemma. They just trip off the tongue, don't they? No. And they certainly didn't off a 9 year old boy's. A boy who lives in a house of boys more interested in poo than Poe!

Just as I was about to delve into Google with various permutations of words including "child", "poetry" and "dilemma" I had a better idea.

So the next day Jake was packed off to school with a printout of what has to be the best example of poetry on the subject of dilemmas; Should I Stay or Should I Go by the celebrated poet, Strummer.

It was apparently received well!


Thursday, 20 May 2010


.... to everyone who have left comments recently. I look out every day for email notifications of them being left so they are always read. Although I enjoy writing the blog, I probably wouldn't make the effort to write it if it wasn't being read and hopefully enjoyed by someone. If you are following it but tend not to comment, remember they can be left anonymously, so you can be as disparaging as you like with complete impunity! Keep them coming.

Wednesday, 19 May 2010

The reason for having wheelchair 3rd party insurance

So with the sun shining and my cold finally gone, I managed to get out on my other chair yesterday, what could go wrong. Well actually, nothing really. Apart from the usual choking session on an iced bun and suffering the patronising palace staff, it was a very pleasant day with my mum in the sunshine.

OK, sorry, have to elaborate on the guide in the palace who was called to help escort me to the lift. Having finished talking to the senior citizen in her wheelchair who was also seeking the lift, she approached me.

Now, maybe it was her overhearing my incomprensible slurrings to my mum, my slumped posture in my chair or the wonky smile I responded with after she said "OK Dear?" to me, but whichever it was, she decided to put to good use what she had been trained to say when dealing with a halfwit. After confirming that it was her expert opinion a lift would be required to get me to the 1st floor, she wanted to explain I would need to wait while she escorted the first wheelchair before escorting me. "It will be 5 (holding up open hand) minutes (pointing at watch ) before I can take you " she shouted, annunciating every syllable, thus covering the options of me being blind, deaf or simple. The fact that she felt the need to repeat the process... twice, suggested that she had concluded I fell into the latter category.

It was all wasted on me anyway (as I ignored her and simply followed on the (w)heels of the other wheelchair) because knowing where the lift was, it would save 5 minutes by simply waiting at the lift and not a 5 minute walk away. When you have a terminal illness every minute counts. And, more importantly I wanted her to know that not only was I not simple, I was smarter than her. Petty? Maybe, but when your only fully working faculty is overlooked, you feel the need to put it in the spotlight.

By the time we had reached the lift, my cunning plan had been spotted, but I was only rewarded with "OK You wait here, I will be back down for you in a minute, DON'T WORRY " Instead of ramming 250kg of wheelchair into her frigging legs, I did my crooked smile and made my "OK" noise. However, after subsequently being told that I would need to reverse my chair out of the lift I had driven into forwards and enthusiastically commended on how I (with limited mental ability ) managed to turn 90 degrees while reversing out, I regretted the missed opportunity.

Friday, 14 May 2010

Feeling crap

Just a quick entry to voice how pissed off I am having sh...y cold. Haven't enough puff to blow nose or sniff effectively, can't reach nose with hand to wipe, sneezing results in me biting my tongue and I feel crap. Just thought I would say.

Friday, 7 May 2010

Holiday photos

are now posted for anyone interested. Click on link on left

Biffy Clyro

Last night we went to see Biffy Clyro at Hammersmith. We had been given tickets for Christmas by Tracy's brother, David and his then fiance Becky (they got married just after Christmas). We have seen Biffy Clyro  before and they had put on a good show. For once we made it in time for the support, which turned out to be two bands. The first, Rolo Tomassi were interesting - a fusion of thrash metal and progressive rock with a keyboard player whose ipod probably had an unhealthy percentage of storage dedicated to Rick Wakeman! The female lead singer literally screamed her way through the set. I'm sure that they will have a devout fan base, but I can't see them headlining V or Reading any time soon. Saying that, at least they were memorable which is more than can be said for the second support, The Twilight Sad. I can't tell you much about them as I switched off after a couple minutes and started writing my next blog entry in my head! Biffy Clyro came on around 9.30 and played for a crowd pleasing 90 minutes. A good mix of tracks from their more commercially successful last 2 albums, some older ones along with a simple but very effective light show made for a good gig.

Thursday, 6 May 2010

Independence of the Seas for the disabled

As blogger seems to be well searched by Google, I have added this entry for other disabled people conteplating a cruise on Royal Caribbean Independence of the Seas. I hope the information is useful for any disabled passenger as well as anyone specifically with MND Motor Neurone Disease ALS. Getting on and off the ship was easy enough, although depending on tides, it could be quite steep, but help was always on hand.

Getting around the ship was no problem. Automatic doors almost everywhere with the exception of deck 13 going to sports deck. The corridors down to the cabins are wide and wider still outside disabled cabins allowing the biggest chair or scooter to turn in. The door into the room is heavy with no automatic opener which means wheelchair users will need assistance. The disabled cabins are very spacious with room for wheelchair and hoist without them getting in the way. The shower room / toilet is also a good size but toilet and shower seat are small so getting on them with hoist sling on is tricky and if, like me you have body core weakness, they are not the easiest to sit on. There is also a small ridge on the door threshold making it hard to wheel a hoist in. The bed is comfortable, but although a large double, it is comprised of two singles so you can't sleep in the middle for extra security. There are both 110v US and 230v European sockets. There are alarm buttons in bedroom and bathroom but if your arms are as weak as mine they are unusable.

Lifts are big, easily accommodating 2 wheelchairs. Call buttons are well positioned and pressable with nose or forehead, but wheelchair users might struggle with buttons inside as they are positioned in the corner on either side of door (see blog for how I managed ).

Access around the dining areas was good, however my only real complaint with the ship was height of the buffet food selection. From a wheelchair it is difficult to see much of the food and the labels were high up making them difficult to read. For MND sufferers with eating difficulties, not being able to see the consistency of food is a real pain.

Finally, wheelchair spaces in the main theatre and ice rink are limited and with the relatively high number of disabled passengers, you need to get there early - upto an hour for ice shows and more popular theatre productions, but they are worth the wait.

Despite some of the issues, I think for disabled people cruises are a supurb holiday option, particularly if you can depart from and return to your own country. please read the preceding blog entries for more info on our holiday.

Tuesday, 4 May 2010

Bon Voyage

so this is the last day of the cruise. I'm sitting in my favourite spot in the partially enclosed solarium on deck 11. Probably the sunniest day we've had but at only 54 degrees its not sunbathing weather. Its been a great holiday. Its probably the first holiday where I have not reached the stage of wanting to go home. I know it is partly because now I can do so little, being in an environment where I can easily and fairly independently go between indoors and outdoors, between peaceful solitude and bustling bars and shops, be entertained or fed on demand; its all so easy, especially with my carer being available at any time and I am going to miss it all.

We have had a quiet day and although Tracy has been packing, she has had some time to relax before returning to hectic home life. As you can see I have taken the opportunity to bring the diary up to date. I have enjoyed writing it and hope somebody is reading it, and that if they are, I hope it has been as enjoyable to read.

We are now sitting in the main theatre waiting for the farewell show to start. Having missed getting wheelchair space initially we have been arriving well in advance and depending on the show's popularity we either get the first or last of the 12 spaces!

So a success all round! We have been impressed with just about every aspect of our holiday. Ok, the weather could have been better but it hasn't spoiled anything. These ships are incredible and are floating villages and luxury hotel, lavishly equipped and finished. Luke noticed one of the many attentions to detail. Each lift has a section of carpet with the current day of the week woven in. Somebody has the job every morning of going round all 15 lifts and changing them! So that is it... Until next year. We decided last night to rather optimisically book a 14 night Med cruise next May. Keep your fingers crossed

Moonlight Golf

Having just read through the holiday entries and cringed at the typos, spelling mistakes and poor punctuation (sorry, at 50p a minute they will remain) I think I should apologise for deviating from writing the diary in the the time honoured order; chronologically. I won't go into the many reasons why this has occurred and hope the content is enough to work out the right order. And before I go any further, having read previous entries, Tracy was keen to point out that she also managed to reach the top of the climbing wall. Oh yes.... Twice.

The cabin arrangements throughout the holiday have had Tracy and 2 boys in one cabin and the 3rd taking it in turn to share with me. The latter is considered a bit of a chore for the elected individual as they may occasionally have to assist with adjusting a pillow, rearrange the duvet (which they had probably kicked off), or wiping my eyes with a tissue. In fairness they all did their bit without complaint. However as an incentive they were allowed to stay up later. Tracy and her room mates have normally been back in their cabin by 10.30, but I have wanted to stay out longer, so I have had some one to one time with each of them, wandering round the ship, eating late night pizza and playing crazy golf in the dark. I have really enjoyed it although I suspect it was getting the ten dollars on the amusement arcade card which was the boys' real reward. As an added bonus for me, the night I had luke with me, the winds were creating a little more role and luke, who is generally not the most tactile of the boys, snuggled up and held my arm. I'm sure if he reads this he will claim it was just the ship's movement which resulted in the close proximity, either way it was a nice moment.

Monday, 3 May 2010

Not the best day!

our final stop today was Vigo, Spain. The day started well with sunny skies and warm...ish. It was also the most attractive location, particularly compared to the rather ugly Canary Island ports. With only a 4 hour gap between arrival and departure, we went ashore as soon as we arrived at 11. After visiting a gift shop we headed up the steep lanes towards a park at the top of the hill. With wheelchair accessible paths getting scarce tracy and the boys climbed to the top while I continued on the road hoping it might get me to the summit from another direction. After about quarter of a mile, I noticed the tell tale signs of the dreaded puncture in one of the main drive wheels. This was seriously bad news, particularly as I was by myself in spain. I managed to turn the chair round and nurse it back to a point not too far from where I had arranged to meet tracy half an hour later, I just hoped they would spot me. My off road chair is a brilliant bit of kit especially with fully inflated tyres and it has improved my independence immensely. Although it is called the All Terrain wheelchair, this really only refers to where it is capable of going and in this respect it is truly unbeatable. However you can't really prevent pneumatic tyres from getting punctures so ironically by the nature of the terrain one is capable of travelling on, a puncture is actually more likely than on a less capable chair. Nevertheless, we now had the challenge of getting 200kg of wheelchair and steve the mile or so back to the ship. although I always travel equipped with spare wheel, tubes, pump and tools I drew the line at carrying a bulky jack. We were faced with having to reinflate the tyre, go as far as I could, before repeating the process. So tracy, with the help of two kind fellow passengers who had come to our assistance started the first of probably 10 tiring stages. We reached the boat an hour and a half later where we were finally given some help and got the wheel changed.

With little time to recover, Tracy took the boys to the ice skating session they had been promised where..... Jake fell and smacked his head! So not the best day. With Jake ordered by the doctor to have a quiet evening, we were grateful for the Rasa agreeing to child mind while we had a quiet meal and go to watch an Elton John tribute performer, who was very good. We continued to finish the day on a better note as the boys joined us for the Rock Britannia street parade.

Pleasantly Surprised

the entertainment on board has been first rate and considerably more varied than you get might expect. There has been one Jane McDonaldesque experience; a celebrity vocal coach, Zoe someone or other, Tracy knew her from some of the talent show programmes, but she did actually have an incredible voice. Other shows would not have been out of place in the West End with impressive sets, amazing choreography and very professional performances and production. Two of the shows are ice shows of which we have seen one so far. Again despite a fairly small rink, the skaters from the US and Russia put on a great show. Last night we watched a hypnotist show which we thought was good, but then we would... wouldn't we!

Sunday, 2 May 2010

Canary islands

Ok, I have skipped a few days as I haven't had a chance to write much and even now I only have 20 minutes before we go to the second ice show of the cruise. Day 6, 7 and 8 were spent at Tennerife, Grand Canaria and Lanzerote respectively. The weather has been rather disappointing; cool, windy and cloudy with only occasional appearances from the sun. We have just been hoping that the Snow has returned in the UK! It isn't a major problem; the boys have still managed spells, albeit brief in the pool and the only island of the three we went ashore, Grand Canaria, we visited a surprisingly impressive science museum. With all the islands, you really need to book the excursions to see anything worthwhile and neither us or the boys were bothered enough to endure the hassle of arranging them! So the last few days have been comprised of climbing wall, getting pizza, football, basketball, getting pizza, getting wet, getting coke, watching shows, going ice skating, getting pizza and coke, watching the latest Harry Potter (if you haven't seen it, don't bother; too long, very dull ) and getting pizza. Have just watched another very impressive ice show and looking forward to the final theatre show later.

Day 5

we are already on day 5 of the cruise and it is all good so far. Our first stop 2 days ago was Madeira where we got off for a couple of hours. We only got a chance to walk round the town of Funchal at the port but it is a very attractive town with terracotta roofed buildings lining the hillside leading up from the port. We avoided the early morning scramble to get off, opting for a post lunch visit. It was the warmest day we have had and by the time we had walked the 20 minutes into the town, the boys were making it quite clear that another afternoon in the ship's water play area would have been a much better idea! Despite this, we managed an hour there before returning. It was nice to have a change of scene for a bit, but as we were already aware, by virtue of quarter million tonne ships needing lots of water to stay afloat, mooring is confined to large docks which are not usually the most picturesque part of a country. Although on some cruises they moor offshore and use tenders to shuttle people ashore, it wouldn't have worked for us.

Yesterday once more!

Around the pool, music is piped through the pa system throughout the day. Considering the average passenger age is probably over 70 (the fact that there are plenty of children and people of our generation will lead the more mathematically minded of you to the fact that there is a large contingent considerably older ) the music is not at all bad. Jim Reeves, Vera Lynn, perry Coma and Andy Williams haven't had a look in once. Instead we have a selection of music that falls into the "guilty pleasure " category on many an ipod playlist. ELO, early Queen, Early Elton John, Carpenters, Bee Gees, Joni Mitchel, David Bowie and even some early Aerosmith! So basically the best contemporary music 1973 to 1975 had to offer. Appying the same 35 year gap, it would be like us going on a cruise in our eighties and being treated to golden oldies from Muse, Kaiser Chiefs, Lady Ga Ga and the Killers which would be great. However, I just don't see the current average octogenarian having a clue who Queen, ELO or Aerosmith are. The point I am trying to make is,( apart from the older passengers being pissed off with the music ) that current bands have a much wider audience age group and that our generation maybe has an interest in current music until an older age than previous generations.

Saturday, 1 May 2010

How to keep amused

I thought while I am waiting in this lift I would explain the pros and cons of lift travel in a wheelchair. Ok, the pro is singular but essential to avoid a very dull 10 days travelling the length of the second deck cabin corridor, I'm sure I could come up with some ideas to pass the time. Maybe, corridor roulette; a full speed run down the length of the corridor without hitting any passenger not paying attention as they emerged from their cabin. I would imagine that by day 2 I would have renamed it corridor skittles, with a score assigned to types of passenger. The cons are more numerous. Lift travel when it is busy is easier, despite the hassle of waiting for one with enough room for my chariot. There are other people to push buttons and so the only challenge is getting someone to understand the floor number I am trying to say before we go hurtling past it. "what floor would you like? ", "Alivath", "ok, seventh", "alivath", "i'm sorry, three was it? " "no, alivath", normally and thankfully another passenger will pipe up with "I think he wants eleventh ". I daren't say thank you for fear they will think I said fourteenth, so I just nod and smile. Job done!

when its not so busy I have 2 options. The first and rather dull one is to wait in lobby for another lift bound passenger, hope they are going in my direction and embark on above procedure.

the other, more exciting option is to operate the call button with my nose and wait for lift. If it arrives occupied, thats the end of the game; refer to option one. however, if it is empty, I get in and wait for door to shut; lift lottery has started! Inside the lift, none of the buttons are accessible, including the door open button. So I just have to wait until somebody calls it. The first element of this game is the waiting time, best so far 5 seconds, worst until now 3 minutes. The other element is the floor the where doors open next. Best result is someone on my intended destination deck calling it, bingo I have arrived. Next best is it being called from a floor between me and destination, but only if they continue in the same direction. I won't bore you with all the permutations as I'm sure you can already see what a hoot this game is. By the way the first half of this was written during the what has now been the worst time to date, 8 minutes!

Daniel's independence of the seas

The first 2 days have been spent at sea en route to Madeira. It has given us a chance to look round all of the ship's facilities which include an ice rink, 1500 seat theatre, 8 restaurants,, a shopping arcade, at least 10 pools and hot tubs. Kids clubs run all day until 2am! although I think we will struggle to convince the boys to attend that often. It may not be a problem as it has already turned out that the self contained and secure environment of the ship has brought out a level of independence in the boys we have not seen before. Daniel in particular has been taking himself off on little sorties in the knowledge that he can find us again easily. He normally checks back in every half hour with an update of the previous 30 minutes activities which generally comprise of visits to the pizzaria in the shopping prominade (or "downtown" as it is rather sweetly called by Daniel, referring to the kids shopping Mecca in Disney) or to the bar to top up his never ending drink of coke! Jake and Luke have enjoyed the freedom, but have not relished it to the same degree as Daniel.