Monday, 29 August 2011

A Busy Week

You probably spotted that my holiday diary ended early. I was aware that it was getting both repetative and gloomy. The Wednesday and Thursday entries would have followed suit so I didn't waste time writing them although we did have a nice evening on the Wednesday when David and Sarah, the farm owners, came over with a couple of bottles of wine and joined us for the evening. So in summary, not the best holiday. The travelling issues, wheelchair control and exclusion from so many activities combined to make it a rather depressing experience if I am completely honest.

Last week was a busy one by my standards with three outings in as many days. On Thursday evening the boys went over to my sister's to stay the night and we took the opportunity to go to the cinema to see The Inbetweeners movie at Kingston. We got into the TV program during its third series but have caught up on most of the others recently on CH4 reruns. Suffice to say it's not for those easily offended but it is possibly the funniest 'sitcom' in years and probably an insight into our boys social lives circa 2019.

Thursday was my Kings Hospital visit; always a chore, never a pleasure, even more so now with travelling difficulties. Previous checkup visits have been coordinated with the drug trial visits allowing me a) get an expenses paid taxi to save Tracy having to come and b) minimise the number of trips during the year. But this week was too early for the trial and also I might have needed help getting between the lung function unit and the neurology department.

The visits are a pain in the arse and if it hadn't been for the fact that they had ordered a new ventilation mask in, I would have cancelled it. The Palliative Care Consultant is perfectly pleasant but it's simply a chat and maybe a prescription to deal with the latest symptom; this time it was saliva control. But an email conversation and a fax to the GP would achieve the same in 15 minutes. The lung function tests were just a blood gas test and downloading the data from the previous nights oxymetry test, followed by a 10 minute session with the another consultant to discuss the results. Again, most of which could be achieved using the post and email. The whole trip takes over 4 hours. No significant changes in results, which I already knew but the new mask will hopefully allow me to use the eyegaze when I eventually need it. Next visit scheduled for December although if nothing has appeared to have changed, I might cancel it!

On Friday we took the boys to see Harry Potter at Kingston's 3D IMAX. I think this is only the second one of the series we have seen at the cinema and it was pretty good, although it was fairly similar to every other HP albeit with a bigger budget. Visiting the cinema in kingston is pretty easy, particularly after I discovered the fire exit route leading directly to the disabled parking area. It avoids the several hundred yard journey on the pavement to the main entrance and the two lifts inside. Tracy went ahead to get the staff to open the fire exit doors when we arrived and they are equally helpful after the film.

Tuesday, 23 August 2011

A Significant Breakthrough in MND Research?

This sounds like a significant breakthrough and of course its good news but it will take 3 to 5 years to develop a drug and prepare a trial, 2 years for the trial and 2 to 3 years to get approval if it works. I guess that missing a cure by 10 years is less depressing than missing one by 10 months but nontheless it was a somewhat bitter-sweet experience reading this news.


Saturday, 20 August 2011

Dorset - Tuesday

We split into two groups today; Jake, Daniel, me and tracy went to the tank museum and Sue, David, mum, Alisha and Luke checked out another local beach. We arrived in time to see the display and spent another hour looking around. After we went to the nearby Lullworth Cove and by 3pm the sun was out and I was sitting looking down on the beach where the dogs were being walked and the boys were paddling. It was the best weather so far and it was an enjoyable few hours. We got back to the cottage around 6-30 by which time Lauren (Sue's eldest daughter) had arrived to join us for the remainder of the week.

A plan had been hatched to return to Lyme Regis for a fish and chip supper. I would have liked to go but couldn't face another car journey, particularly the half mile rutted farm track. Two trips along that in a day is more than enough. Me and Tracy watched a DVD instead and everyone returned around 11pm. The boys had been allowed by David to drive his car on the private track, so were well chuffed.

Thursday, 18 August 2011

Dorset - Monday

The boys had their trailer ride around the farm this morning. They got to see the farmer's 'pet' grass snake which lives under some corrorgated metal sheets in a field. We then set off for Lyme Regis aiming to get some beach time before the forecasted arrived.

Despite the 40 minute drive i was looking forward to going. If you have read last year's entry, you will know it had been a highlight of the holiday so was always going to be hard to match. Arriving early afternoon, the car parks were all full including the totally inadequate 4 disabled spaces, so I got dropped off near the beach. Last year, having arrived later, the beach wasn't too busy allowing me to drive the wheelchair quickly across the dry sand avoiding getting stuck, and on to the firmer sand where I could easily maneuver and be part of the action. Today the beach was packed and the tents, windbreaks, beach towels and brollies strewn across the sand would be impossible to navigate quickly. So again I had to sit somewhere else from everyone else. People took it in turn to keep me company and after an hour or so, and the boys were getting cold, everyone came back up to the prominade for a picnic. The rain arrived shortly after so I made a dash for cover while Tracy and David got the cars.

We drove to charmouth, a couple of miles away hoping the rain would clear and the boys could do some fossil hunting. But the shop hiring the hammers had closed and the tide was in so Tracy took the dogs for a walk and the boys played on the beach. It was still raining so I stayed in the car.

Have to say that I haven't enjoyed today. I guess its all down to the effort / reward balance. Being bounced around in the car for two hours on top of all the other hassle and having a day like today is rather disheartening. Especially as last year had been so much better. The balance has tipped irreversibly. Everyone has done everything to make things as easy as possible and I hope my general lack of enthusiasm hasn't put a downer on everybody else's holiday.

Dorset - Sunday

Today we visited Abbotsbury about 10 miles away. There is a swan sanctuary which we last visited when the boys were around four. We wandered around for about an hour, Rasa drove the wheelchair most of the time, leaving me to do the fine tuning once we had stopped somewhere. After a picnic lunch we drove another couple of miles to Chessil Beach. This is a shingle beach with a ridge running along its length. Conveniently there is a boardwalk running up to the top of the ridge although it didn't extend far enough for me to see the water's edge where the boys were playing.

As I sat there I thought how this represented the best and worst type of activity similtaneously. I can enjoy the sea breeze and sunshine as much as everyone else, an experience unspoilt by MND

But I am unable to participate in the most enjoyable holiday pastimes, an experience completely wrecked by MND. Which one you focus on is a good indicator of ones frame of mind. To rub salt in, my excellent view of the car park all afternoon had afforded me a great view of a TVR Tuscan just in case I had forgotten another enjoyable activity.

After a while everyone came back up to where I had been sitting and we stayed another hour before leaving. .

Tuesday, 16 August 2011

Dorset - Saturday

Today we decided to stay around the farm and avoid driving. David the landowner is happy for everyone to explore the extensive acreage of the farm. A picnic was prepared and we headed to the field with the stream running through the woods; a great place for the boys to find all sorts of wildlife. We entered the field off the farm track but soon realised that I wouldn't be able to go further. I had made it down the sloping field last year but the bumpy terrain was too much. Having someone else drive the wheelchair over rough ground isn't an option. I need to 'feel' my way over ruts and bumps in order not to be shaken out of the chair, someone else can't do it. Also the steep slope would require the chair to be tilted at various points so wheelchair control would need to be switched between me and carer as the gradient changed. With eyegaze communication knocked out by the sunshine, I decided that it was going to be too great a challenge and returned to the house. Everyone returned a couple of hours later after sufficient wildlife had been caught. The rest of the day was spent at the cottage and after the boys decided that they wanted to camp, tents were put up in the garden. I had expected them to creep back in by 1am but they managed to stay out until 6.

Dorset 2011

we are back at the Dorset farm for a weeks holiday. As with the cruise, the success of last year prompted us to book this year's holiday as we left. And as with the cruise I really didn't know whether I would actually make it. This break is actually more challenging than the cruise where everything is on hand without having to go anywhere. Travelling in the car has become pretty difficult. Even though the outdoor wheelchair copes well with compensating for the car's awful suspension, it can't counter the effects of the physical forces involved with accelerating, braking and cornering. So with ever weakening neck muscles, its fairly exhausting. To complicate things, wearing a neck restraint isn't an option because I need to tilt my head forward in order to swallow saliva without choking. The two and a half hour journey was spent fighting the acceleration forces, trying to control tilting my head forward every 30 seconds to allow me to swallowing and then struggle to lift it back up again. I try to coordinate all this with accelerating and braking to assist with movements. Trying to lift my head up while braking and going down hill is impossible, as is trying lower my head while accelerating. Needless to say, I was shattered when I arrived and my neck felt like I had been trying to balance a sack of spuds on my head for two and a half hours. I can't think of a solution and I am not looking forward to the return journey.

The rest of yesterday was ok, the hoist we had rented had arrived and my carer, Rasa arrived shortly after us having driven down in tracy's car. The whole carer arrangements had been a nightmare. I had found out only 4 days ago that funding for a carer hadn't been approved, and without which no carer would be provided. Also even if was agreed they wouldn't provide her with a car. Many emails later and with less a day to spare, we got everything sorted.

Friday, 5 August 2011

A Brave Man

Yesterday I got a comment on my blog from another MND sufferer who found the blog through the Patients Like Me website. He is only 36 (3 years younger than me when I was diagnosed) and I hope like me, has a relatively slow progression. He said that he has just read my entire blog from the beginning (hence the title), which is very flattering because it now comprises 150 entries!

He also has a blog which I read yesterday and will continue to follow. His first entry was interesting as it describes his diagnosis experience which was remarkably similar to mine, and since I never included this previously in my blog, you might be interested in reading it.

I hope that he found reading the blog more helpful than depressing and scary and that despite the challenging path that lies ahead, readin my experiences will make it a little easier and less bleak. There is no escaping the awfulness of MND but with determination you can (most of the time) have a 'living with it' outlook as opposed to a 'dying from it' one.

Tuesday, 2 August 2011


July wasn't the most prolific blog writing month was it. I think several factors contributed including apathy, tiredness and some prolonged computer use including a 15 hour stint over 3 days removing a virus off the boys' computer. This involved controlling 3 computers, 2 of them remotely, endless website searches, running time consuming scans with many utilities, editing registeries and doing countless reboots. Immensely frustrating but satisfying to crack and avoiding a complete reload.

But mainly the lack of entries is the result of apathy and lack of inspiration; even this entry was only started to explain my absence due to this lack of enthusiasm, maybe by the end it will have

progressed to something more positive. This frame of mind has become more prevalent since the cruise. I spending hours just sitting in the garden or sitting in my bedroom looking at the garden. The few opportunities I get to go out I often decline because travelling in the car is so uncomfortable. I don't even bother going into the lounge to watch TV because of the effort required to drive the wheelchair there. Also, until recently my eyegaze computer had a tendency to freeze when using its remote control function, leaving me completely stranded. I think I have got that sorted but I still keep wheelchair maneuvering to a minimum.

It has been almost 30 degrees for the last couple of days and it is completely wiping me out. Anything above 24 or 25 degrees saps the remaining drop of strength, makes breathing harder and is generally very uncomfortable.

I have made the effort to get out a couple of times. I went to the boys' sports day last week. Luke and Daniel did the sack race and Jake did the sprint. So less than a minute of participation for a 2 hour round trip. I know I should say now that it was worth the effort but more and more I can't convince myself that it is. During the sports day outing the computer mount slipped, resulting in the Computer pointing down towards the ground. I knew exactly what had moved but had no way of explaining to Tracy. One of the disadvantages of having carers is that when they aren't there, other people don't know how to do things. Tracy did her best to readjust it but the locking handle became too loose and the weight of the computer made the whole mount collapse. Although we managed to get it to a position where I could use it, I knew it would need resetting completely. So I spent the next hour planning how to explain to the carer how to do it; not easy when you have to explain words like slide or tighten.

We did manage an evening out with the boys to Sandown horse racing and Scissor Sisters concert. We had done a similar evening with Razorlight last year and apart from the wheelchair platform being completely useless at 18 inches high, it was a good evening. This time having been assured that following my complaint, future platforms will be higher, I could actually see the gig. The weather forecast had predicted an occasional shower so I decided to go without my eyegaze; a daunting prospect having communication severed for 5 hours. It was a good decision though as it drizzled all evening and it would have been very stressful worrying about the computer all evening and trying to keep it covered! We failed to back any winners but the concert was good.

We are off to Dorset for a week soon and have got the usual worries. It is the same place as last year but things have obviously changed since then, they have changed since the cruise 6 weeks ago.

So I am not a recluse yet but I am finding it increasingly difficult to muster the enthusiasm and courage to leave the easy, albeit boring environment of the house.