Drug Trial latest

Yesterday I was up at Kings Hospital signing up for the second stage of the drug trial during which I will be taking the 'real' drugs! I started the first stage in November 2009, but don't know if I was receiving the drugs or the placebo (and nobody will find out until the end of the trial). I asked whether any trends had been observed over the last 18 months, but they wouldn't comment. This is partly because they also don't know who had which pills, but even if they had noticed a specific group progressing differently they wouldn't be allowed to disclose the information. Furthermore, any differences might just be the result of normal variations. However, my interpretation of his facial expressions while declining to answer, suggested that there might have been some noticeable results.


I guess on balance that I hope I haven't been taking the 'real' drugs and that switching to them now will have a positive impact (I really don't expect anything to be honest), although I am not sure whether I want to have progression slowed or even halted at this stage! Saying that, I remember thinking the same a year ago and now I would happily accept returning and being held at that stage. The drug company claim the possibility of neurone restoration, but of course it needs to happen at a rate greater than that which the disease destroys them.

Since starting the trial my progression has obviously continued in terms of both my actual physical ability and the FRS score used to measure it. In November 2009 my score was 23 out of 48 and its now 13. The fact that it has actually been at 13 since last September is unfortunately more the weakness of the FRS System as opposed to an arrest in deterioration. The FRS comprises 12 questions divided equally into 4 categories; speech & swallowing, arms, legs and respiritory system. Each of the 3 questions in each category has 5 possible responses scored between 0 and 4. The problem is that in my case my score is almost entirely achieved by my breathing still being sufficiently good to score 8 out of 12. The remaining points are awarded for my legs being able to bear weight and that I don't dribble ALL the time (I am a social dribbler!). Everything else reached zero over a year ago.  The deterioration can continue without there being any further reduction in the score creating a false impression of stabilisation.  The question about writing ability hit zero (can't grip pen) over 2 years ago but they don't have -4 for not being able to push a featherweight joystick on a wheelchair. By the way if I was offered the ability to grip one thing again, it wouldn't be a pen!

So I am still not planning to book the water skiing lessons just yet, but as my taxi drove past a Mercedes SLK AMG (my final decent car) on the way back home, I did endulge myself in a rare moment of day dreaming and thought f@@@ it, next time I will get the SLS; that's a promise.





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To elaborate a little....

Thanks for your comments on the previous post. I think I should elaborate a little on the situation.

The issue of me having sole charge of the boys has been raised by the counceller tracy has been seeing after discussing the separation anxiety one of the boys is suffering whenever Tracy goes out at the moment. I am not convinced that this is the cause of the problem but I have to put their welfare before my pride, and there isn't much point in seeking professional advice if you are going to ignore it. We have discussed it with the boys and while their viewpoint is important, one obviously has to take into account their alternative agenda but I do accept that being so physically disabled and unable to communicate easily, there might be a situation which I might struggle to deal with.

Also it was suggested that if something were to happen with them while I had sole charge, tracy could be exposed to social services sticking their nose in .

So I guess I will just have to live with it.


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"Father's" Day

This week I was told that it was no longer appropriate for the boys to be left alone with me because it placed to great a responsibility on them. Here isn't the place to voice my opinions on this viewpoint, but irrespective of whether the decision is correct, it has left me feeling redundant and resentful. It's going to make it difficult for Tracy to go out without coordinating it to when a carer is here or my mum being available to come over. This obviously is going to impact Tracy's ability to go out which isn't good for her and I don't want to be responsible for that. Throughout this illness I have aimed to minimise the impact of it on Tracy. I (with the help of carers) try to be self sufficient in terms of care and organising everything related to MND. I will be honest by saying that my determination to do this is largely driven by a trait I have always had,  which is hating being indebted to anybody. So until now I like to think that whilst Tracy is now effectively a single parent with the stresses that brings, I have minimised any additional work relating to my care. Being able to mind the boys when she goes out meant that she had one advantage over an actual single parent, but it will no longer be the case.


Being told effectively that I am no longer fit to look after my own sons is something I wasn't prepared for; that a carer, a virtual stranger is more suitable than me to care for them is difficult to comes to terms with. Like being PUT to bed at 9-30pm, it makes me feel like a criminal. Accepting the direct physical effects of MND is difficult enough but these consequential side effects which rob me of my freedom of choice or limits my participation beyond the limits imposed by the disease directly, are the hardest to bear.

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Life is Like a Tube of Toothpaste

I have been trying to perservere with the new indoor wheelchair. It has been sitting in my ensuite toilet since before the holiday. The chair arrived 6 weeks ago but I have had to arrange for various people to fit other bits to it before it was useable. Having returned from the holiday to discover the current indoor wheelchair was now extremely difficult to drive, the prospect of switching to the new one which I already knew had a harder joystick and required greater accuracy due to its larger size, isn't one I have been looking forward to. I was forced to use it the day we returned from holiday because my current one hadn't been on charge for two weeks. I only used the new one for a few hours while the other charged up.


So today I decided to give it a go. I managed to use it for a few hours including a two trips between bedroom and lounge, but the second return trip was almost impossible being completely unable to manage any left movement. So I have reverted back for the remainder of the day to the old wheelchair. I have already arranged for the wheelchair technician to visit to make some more adjustments to the controller positioning, but I think the issue is beyond the point where it will help.

Trying to extract the last tiniest amount of strength in my arm is like trying to get the last bit of toothpaste from the tube. Last year I was rolling up the tube, at the beginning of this year I had cut the tube open to scrape out the remaining residue and now I am using a single toothbrush bristle to get at the almost invisible amount within the thread of the screw cap. Unfortunately this analagy doesn't extend to the step of getting a new tube out of the cupboard!

Cruise 2011 Photos

Cruise 2011 photos

Post Cruise Blues

So back to sitting in the garden and feeling rather low. Not primarily because the cruise is over but because some of the things which were getting difficult before the cruise are now impossible. There is an element of 'use it or lose it' with this. In any event you're going to lose it but refraining from something for a week or more will accelerate it.


In my indoor wheelchair I had been able, albeit with great difficulty, to pivot my right forearm upwards at the elbow, allowing me to use my strategically placed tissue to wipe my nose or scratch an itch on my face. I haven't been able to do this for some time on the outdoor wheelchair because of subtle differences in armrest positioning. So having been unable to do this action for 2 weeks, I have lost the ability permanently now I am back in the indoor chair. So when I have a coughing episode which causes my eyes to water (and subsequently sting like hell), saliva to run down my chin and chest and snot to stream from my nose, I have to wait for someone to clean me up and if I time it badly, it could be an hour or two.

Similarly the variation in joystick positioning meant that for 2 weeks the tiny amount of strength remaining in whichever muscle I used to turn left on the indoor wheelchair has gone completely. Finally I can no longer turn on my side in bed. Again, maybe this ability would have been lost over the next month or two but not being able to do it for 2 weeks has accelerated the process. Last night I woke feeling a little short of breath but was unable to turn on my side or even move enough to reach the bed control to raise the bed. I can't think of any solutions. I am also nervous about using the ventilation equipment alone in case I have a coughing episode.

I am running out of solutions to the problems, partly because solutions don't exist but also because I am running out of the will to find them; a situation which I find more difficult cope with than the actual problem.
 
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The Cruise 2011 -to sum up

So our cruise is over and like last year I am sad to be going home. It has been a great two weeks. It probably hasn't had quite the same magic as last year. There wasn't that surprise factor for either us or the boys and they have not revelled in the environment quite as much as before. But is still a great format and undoubtedly the best holiday option for me. Returning home is going to be a stark contrast; my boundaries reduced from 360,000 square feet of readily accessible indoor and outside space to the confines of house and garden. Evenings no longer full of live entertainment, party atmosphere and late nights. Bed at 9.30pm from tomorrow.


Getting around the ship has become easier throughout the holiday. Although physically harder than last year, it has been possible unassisted most of the time. Movement around the ship has been generally limited to necessary trips to specific events rather than last year's driving around for something to do, but I can live with that. Communication with other passengers has been a mixed experience. I have found the teenagers to be the best at actually listening to my computer's voice. A lot of people will walk straight past me waiting for a lift without volunteering to push a call button, even when I have asked. I think most just don't register it as a voice. Some people who push a call button then leave before I get a chance to tell them what floor I want. It doesn't occur to them I am as incapable of pushing buttons inside the lift as I am outside it. Another irritating situation is waiting for a lift and when one arrives, a 4 or 5 overweight people filing past from behind me before I have a chance to get in. With 4 lifts in each section, any one might arrive first, so if its busy I wait to one side to avoid having to turn around if a lift behind me arrives but it invites people to ignore me. Saying all this, many guests are extremely helpful. I had a couple of amusing incidents today. This afternoon a young girl came up and said "My dad has seen you on the ship and he told me that if I see you, to ask you 'have you been on tv and are you a famous scientist' ". The sunshine prevented me using the computer so I had to decide whether to shake or nod my head. I went for the shake and she walked away looking rather disappointed! Later, in a busy shopping prominade an older lady stopped me and asked if I had had a nice time to which I nodded my head. She then said "so are you a war veteran or have you had a terrible accident"!

I know many people have been a little disappointed by the weather, but it has totally suited me. Not too hot or sunny. Most days have been warm enough and the afternoons have been fairly sunny. I have found some points difficult, particularly in the evening with everyone chatting, eating and drinking. Last year as well as being able to eat, I could manage some communication without the computer, allowing the occasional spontaneous comment. The complete dependence on the computer makes many comments redundant because the moment has passed. So, exploding fuel depots aside, it was a very good holiday.



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The Cruise 2011 Day 13

We have arrived at our final port of call, Vigo. This was the location of last year's puncture drama, so we decided not to tempt fate and stayed aboard. The boys spent the morning of what was probably going to be there last day in the pool. After lunch the afternoon was filled with Crazy Golf, climbing wall and the first attempt on the Flow Rider. Jake managed his 2nd complete ascent of the wall which scales 20 metres up the back of the ship's funnels. Daniel also managed his highest climb just short of the summit. Only Jake was tall enough for FlowRider, an artificial wave for surfing and belly boarding. After waiting 45 minutes in the cold wind as we left Vigo, we were rewarded by watching jake being swept to the top of the flowrider by the force of the water. Jake's light build simply couldn't put enough weight on the front of the board to keep him on the wave. Anyway he still enjoyed it. Tracy took the boys to Johnny Rocket's Diner for tea; I gave it a miss this time.


We all met again for the evening's show which was the final production by the ship's perfomers. The amusement arcade, the Rock Britannia street party (a final opportunity to attempt to be filmed by the roaming cameraman and get on the cruise DVD. Previous attempts are unlikely to make the final edit as they have invariably ended up as a squabble. We have higher hopes for tonight's performance by Jake doing his Townsend windmill air guitar), and our regular fix of Rock The Boat. Tonight's set including Led Zeppelin's Rock n Roll; the drummer providing a very impressive Robert Plant substitute. Almost 2am in bed!

The Cruise 2011 Day 12

Last night's game show was good fun, involving the audience being divided into teams with two captains each and being requested to produce various items as fast as possible or perform tasks. It was better if you were there!


So today was Lisbon, the last stop we had planned to go ashore. There was a shuttle bus to two locations, the first being the town centre followed by one at a monestary. The town was hard work and other than a couple of impressive statues was just shops and crumbling mosaic pavements on hilly streets. Other than the main pedestrianised section through the shops, it isn't wheelchair friendly. Cobbled streets with tramways, dropped kerbs that are still 3 inches high and obstructions on the narrow pavements don't make for a relaxing visit. But I can say I have been to Lisbon even if it was not enough to see it at its best.

The second stop was much better. The monestary and surrounding gardens, fountains and monuments were fairly accessible and the whole area was much more tranquil. The monestary itself had a beautiful outdoor quadrant within the incredible stone carved walls. The boys hadn't been terribly interested so far but enjoyed going to the top of the final point of interest; a 50 metre high sculpture overlooking the bay dominated by the impressive suspension bridge.

We returned to the ship and went up to watch our departure, worth seeing to witness the couple of feet clearance as we passed underneath out of the port. The evening's show was a group called Graffiti Classics, three violinists and a double bassist who did a humerous take on well known pieces. At most shows there are always a number of people who leave during the final 5 minutes, presumably to avoid the queues at there dinner seating but it is bloody rude. So when the double bassist, (who had been comically scathing of audience participation during the show) ran up the isle to physically drag people back to their seats, it resulted in a huge cheer from everyone. We finished the evening watching the band who were doing live karaoke.

The Cruise 2011 Day 11

Today we are at sea on the way to our penultimate stop at Lisbon. The day got off to a bad start when I was told that my wheelchair charger had been off all night because one of the boys had kicked the power cord out on the way to bed! The trip into alicante combined with a long day running the computer had drained the batteries yesterday so it was going to need the full 9 hours to recharge. I reckoned a 5 hour charge would suffice to keep it going until midnight and its now 9pm and its looking good! Everyone thinks I am paranoid about checking power cords on chargers but it's such a pain when this happens. I finally left the room at 2pm, in time for the belly flop competition at the pool; daft but very amusing!


Tracy managed a bit of yoga in the cabin while I (as you can see) got my blog up to date for the first time since Gibraltar. We met up at the ice rink for the second ice show. As usual, a good wheelchair space required me to be there an hour before show time!

After we met for a drink with my old work colleague, Mark and his girlfriend. The boys already knew that they had a junior suite with a balcony so they weren't going to get away without letting the boys see how the other half live. I hope they had the sense to blindfold them en route otherwise the last 3 days of there cruise won't be very peaceful.

We are now sitting in the Viking lounge with panoramic views out to sea. In half an hour we are returning to the ice rink for a event called The Quest, based on a TV show of the same name. I will report back tomorrow!

The Cruise 2011 Day 10

Alicante today. The weather has been the warmest so far but we still ventured into town for an hour or so. The previous days' driving had taken its toll on my arm and I struggled from the start and after 20 minutes opted for sitting in the shade, but from what we saw it was a very attractive town. We returned around one and went to the afternoon screening of The Last Three Days, a fairly decent film with Russell Crowe. It finished in time for us to get to Deck 12 to watch our departure, accompanied by the deafening three blasts of the ships horn. Today's was performed by guests who had won a charity auction at night's show. I had been tempted to bid for the boys to do it but as the bidding exceeded a hundred dollars I had second thoughts. It finished at over three hundred dollars!


We braved the comedy act in the evening. It seemed to go down well with the audience but we couldn't get into it. We have been disappointed by the shows. They have consisted almost entirely of single performance acts, designed to appeal to the older audience. Last year there were more big productions and the single performances had broader appeal, like the Elton John tribute act. Maybe they are saving the best for the final couple of days.

Tracy was feeling a bit wiped out, so I took myself to the 80s night where Rock The Boat played until almost 1am. They are the best entertainment on the ship, a covers band that play as well as the bands they cover.

The Cruise 2011 Day 9

Our second day in Palma, we took the shuttle bus into town. They have good wheelchair access on the buses although the elevating ramp with no side rails or raised edges was a little scary 8 feet in the air. We spent a couple of hours walking round the streets and visiting the cathedral, I managed most of the wheelchair driving myself but got driven for the last bit. The boys weren't very interested in walking around having been dragged away from the Cartoon Network Channel. The afternoon was spent back at the ship where the boys played crazy golf, tabletennis and went swimming. The evening show was OK; a singer catering for the older guests. He had a pretty good voice and sounded a bit like Neil Diamond, he should have just done his songs instead of some of the obscure covers.

The Cruise 2011 Day 8

Today we arrived in Palma, Majorca for a 2 day stop. We chose to have a relaxed day on the ship and go into Palma tomorrow. The weather is overcast and we can see a thunderstorm over the mountains. So playing various games with the boys seemed a good plan. They were screening The Social Network at the cinema so while the weather was not conducive for sunbathing we went to watch it. Our comments on last year's feedback form had been completely ignored as they still had a crappy projector. For a ship that cost almost one billion dollars, they could have spent a grand on a decent one. We suspected some of the more senior members of the audience hadn't read the summary in the film guide or maybe we were being prejudiced and that Mabel and Cyril were avid Facebook users who wanted to find out about the man that had brought them together. Twenty minutes in, I had to move a second time for each of them to pass me as they left; a little irritating as most of them had arrived only ten minutes earlier, forcing me to move after the film had started. I was tempted to type out 'they sell watches on deck 5' but I would have missed even more of what was an excellent film.


In the evening, the band from yesterday played at the pool party which kept us entertained until after midnight, although it turned out that Rock The Boat did have a wedding reception setlist.

By the way, for the grammatical perfectionists reading this (I know one person who probably whinces throughout) I am well aware of the mixed tenses within my blogs but they are often started in the present and completed later. My preferred text editor doesn't have a spell checker and I can't be arsed to copy everything into Word before publishing. And at 65 cents per minute for an internet connection, only the most embarassing mistakes get corrected online.

The Cruise 2011 Day 7

Barcelona today. Tracy had indepenently arranged a private tour with a company providing wheelchair accessible taxis. We had agreed to meet them at the ship at 1pm. We had been informed last night that the ship would dock at a different pier from usual (maybe there were oil storage tanks on the usual one). We emailed the company to notify them hoping they weren't insulted by the inferrence that they wouldn't spot a quarter million tonnes of ship was a few hundred yards out of position.


Our taxi was waiting when we got off the ship, it was exactly the same car as ours so it was a promising start but our hearts sank when it was discovered that a minor collision the day before had caused the rear bumper to buckle up, preventing the tailgate opening. While tracy went back to the cabin to get the Barcelona tour guide in preparation for a DIY tour on the bus, three officers from the port authority armed with a hammer managed to reshape the bumper and got the tailgate open.

Our driver and guide, Jordi took us for a 4 hour trip around Barcelona. We started at the Olympic stadium and National Gallery where we had a great view over the city. We then went across town to Temple de la Sagrada familia, a stunning building inside and out. We stopped quickly at Park Guell before returning to the ship via Las Ramblas, a 2km long stretch of pedestrian area which is like a combination of London's Southbank and Covent Garden with markets and street perfomers.

I managed to operate the wheelchair myself throughout including the precariously steep ramp into the car, but I was pretty knackered when we got back.

While Tracy took the boys ice skating and for something to eat, I relaxed in the late afternoon sun on the top deck with views across Barcelona. There was also plenty of activity to watch in the port as other cruise ships arrived or left. Daniel takes great satisfaction from comparing the size of other cruise ships with ours as invariably ours wins by a significant margin every time!

We went to the evening show which was the first of the three big productions. Again we had seen it last year but it was still excellent. After we went out to watch the ship leave port. As we were walking around the section of deck that overhangs the ship, daniel said he didn't like this bit because it might 'snap off' which amused us no end. Having recovered from the excursion, we decided to check out the band in the lounge bar. They were just finishing a line dancing session but said they were returning shortly to play hits from the 50s to 80s. With the audience of predominantly over 70 we expected a typical wedding style playlist, so were pleasantly surprised to have some Thin Lizzy, Rolling Stones and Queen covers. They played until almost 1am, finishing with Another Brick in the Wall! Most of the older audience had already left by then.

So a good day; probably the best so far. I have got around the ship indepenently, including lifts for the first time and even tried lift lottery for the first time - see last year's entry.





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The Cruise 2011 Day 6

We arrived in Cannes this morning and the weather is wet and windy. This stop required a tender to ferry passengers the last half mile to shore and although they are wheelchair accessible, it was fairly obvious the gangway wasn't going to be wide enough for my chair, so before navigating the zig zag platform I returned to to the ship leaving Tracy and boys to go ashore. It may have been a blessing in disguise as within 5 minutes of them landing, the skies opened forcing them to take shelter in a nearby Mcdonalds. My computer wouldn't have appreciated a soaking. It was a little disappointing not to get off the ship again but damaging the computer would be disasterous. I spent the morning on deck 11 where I bumped into an ex co-director from work, so we had a couple of hours catching up.


Tracy and the boys returned in the after by which time the sun was out and it was very pleasant sitting in the sun on the top deck with a view of the Cannes' coastline. The ship set sail at 5pm and as the breeze stiffened we moved to a more sheltered deck. The boys had enjoyed their trip and had seen the Film Festival venue and spent time on the beach.

We went to the early show which was a comedy variety act, which was a bit naff but quite amusing nontheless.

The Cruise 2011 Day 5

Today has been spent at sea travelling to Cannes. This is the last sea day for a while, the next hops are done overnight. The weather hasn't been great today although it brightened up this afternoon. A lazy day for everyone. Found another quiet spot on the outside of deck 4 and Daniel joined in a game of deck coites with another family giving Tracy a few minutes peace to read her book. This evening's show was the Jane Mcdonald spot; not really our cup of tea but last year's equivalent was actually very good. By the end of the show (which wasn't great) we were in quite rough seas so plans to go up to the higher decks were abandoned in favour of the cabin. The ship information channel on Tv was reporting winds of 70MPH and waves were reaching our cabin window. Lying down was the best bet so we went to bed.

The Cruise 2011 Day 4

We arrived at Gibraltar around 9 this morning. Tracy took the boys ashore and walked into the town to get the cable car to the top of the rock. The 20 minute walk through busy streets would have been too difficult for me and I wouldn't have been able to get on the cable car anyway, so I stayed on the ship. The boys returned around 3 and decamped to the pool. They had enjoyed their trip and had encountered the famous Gibraltar apes. They'd had no problem sniffing out the Fruit Loops in Jake's bag and had promptly nicked them.


Our departure from Gibraltar was rather more speedy than planned after the oil depot a few yards from the ship exploded. I had been sitting on deck 12 with Tracy and Daniel when we heard a loud roar

like a jet engine. As we looked overboard, the roof section was being hurled into the air on top of a ball of flames. I couldn't actually see what it was but another passenger was saying the adjacent tanks might also go. It was a bit surreal, I have to admit it was quite worrying because it was within just a few yards of the ship and we didn't know if the ship had been damaged or covered in burning fuel. Also Jake and Luke weren't with us. After various instructions from the ship's bridge directing passengers to get inside, the ship set sail (within an apparently impressive 4 minutes of the incident )

Tracy had already gone to round up the boys and 10 minutes later we were all back on Deck 12 watching Gibraltar under a plume of smoke as we sailed away.

In the evening we went to see hypnotist show where 10 of the passengers were humiliated for our entertainment!
 
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