A visit to Exbury Gardens

On Monday this week I had an opportunity to get out of what are now becoming all too familiar surroundings and to take some pictures with a couple of good friends from Eli Lilly. Robin and I had already spent an enjoyable day up in London back in May and were both keen to go out and do something else together. This time we were joined by Susie, another friend with a keen interest in photography. Our little band of photogs was steadily growing!! Anyone else care to join the party? I must say that going out with friends who share a common interest is so much better then going out alone and with my growing disability more of a necessity.

We settled on visiting Exbury Gardens, a place I’d not been to since 1984 but one which I’d had good memories of and felt confident in recommending to my friends. It was very much overdue for a revisit! Exbury Gardens are situated in the south of Hampshire down in the New Forest and are adjacent to the Beaulieu River. They are home to the world-famous Rothschild collection of rhododendrons, azaleas and camellias. The gardens, which were created back in the 1920s, offer over 200 acres of natural beauty to explore through a combination of walking, buggy rides and a steam railway.

We set off at 10:30am having first made a detour to the train station to pick up Susie, and then with the satellite navigation system programmed we headed off towards South Hampshire and Exbury. I sat there in the front passenger seat fascinated to hear this female voice coming from the electronic map display run off a string of instructions on where to turn and what exit to leave a roundabout at – and all with what appeared to be pinpoint accuracy. I’d never felt the need to have a Sat-Nav system all the time I was driving (being very much a traditionalist and quite happy with a 3 miles to the inch road atlas) but I must say it was a neat toy and no doubt had I not been forced to give up driving I expect I would eventually have bought one myself. I’m normally quite late in adopting new technologies!

We arrived shortly before midday and after a spot of lunch for which this time I’d remembered to bring a straw (a lesson I’d learnt from the trip to London because bottles of soft drink are now too heavy to lift), we decided it would be a good idea to take a buggy ride around the grounds first. That would give us an idea of the scale of the gardens and would enable us to make mental notes of interesting places that we could subsequently visit on foot later in the afternoon. We trundled along the pathways at a leisurely pace with a running commentary from the amiable driver. We saw rhododendrons of all sizes with some specimens really quite huge and obviously well established. Unfortunately we had missed their flowering season so only had green foliage to see but some of the leaves were massive. It was quite obvious that at the right time of the year the gardens would be a riot of colour and I made a mental note to try and come back next spring (and possibly this autumn too). Nevertheless despite the lack of mass displays there were sights to be seen and I found myself wishing that I could hold my camera up to my eye but unfortunately my arms have grown so weak and partially paralysed that I just cannot do much with them anymore when I am sitting down or in confined spaces such as in the buggy or a car. I really am quite helpless in those situations so all I could do was look on with envy as my friends clicked away whilst I just settled on admiring the lovely views. The gardens extend right out to the Beaulieu River and gave us a view of the numerous pleasure craft. Unsurprisingly the gardens are quite a popular venue for weddings and it has been known for the bride & groom to leave for their honeymoon aboard a boat moored at the nearby jetty. The buggy ride was scheduled to take up about 40 minutes of our afternoon but somehow seemed to swallow up twice that amount of time but no matter it was enjoyable anyway.

Exbury Gardens Guide-Spring


Exbury Gardens Guide-Summer

Before settling down to take some photos we headed off towards the rather grand sounding Exbury Central Station, the starting point for a 20 minute excursion on a 12¼” gauge railway featuring coal fired steam engines. The railway is a relatively new addition to the gardens and certainly wasn’t there when I last visited. We had some time to kill before departure so took the opportunity to try and get some photos of one of the steam engines sitting on a turntable outside the engine shed. I’d not taken any photos for over a month and in that time my arm and shoulder muscles had continued to weaken to the point where I found it almost impossible to hold the camera to my eye for more then a few seconds even when bracing my elbows against my body. I just about managed to get a couple of shots but even then managed to drop the camera once although fortunately the camera was on a strap around my neck. What makes it worse is that I now have to keep lowering the camera to make adjustments to the settings. Picture taking is a painfully slow process. I wish there was some way to have the camera on a swinging arm mounted to my shoulder. Anyone who ever saw the film Predator may remember that the alien had a shoulder mounted gun – well that’s what I want – only in camera form for a different kind of shooting!

The railway station itself was quite charming and was decked out in authentic looking posters from days gone by. Susie was as pleased as punch that one of the carriages on our train was emblazoned with her name! The whistle blew and we were off – over a small bridge and through a long tunnel. A group of tall Sunflowers made a colourful display alongside the railway track and here and there were metal and moss animal sculptures. We passed over a viaduct, made a short stop at Exbury North adjacent to the American Gardens and then continued along our way catching glimpses of several ponds and a lake before heading back along the tree and shrub lined route. All in all it was a very pleasant experience. There is something about old steam trains!

Exbury Gardens Railway Map

Time sure flies when you’re enjoying yourself and by this time it had become obvious that we would not have time to see everything on foot. Instead we settled on revisiting several features that we thought offered opportunities for photographs. First up were a few exterior shots of Exbury House itself and then on into Home Wood where there was a large pond full of huge carp that swam towards us. Judging by the amount of photos she was taking I think Susie was determined to take a portrait of every single Carp in the pond :D. There were also some friendly ducks who seemed more then willing to pose for us. Robin got some cracking shots of them but I didn’t have a long enough lens to fill the frame. We then followed a little stream to a small bridge where I watched the water tumble across the stones before ending our day photographing some beautiful blue hydrangeas.

Exbury Gardens Map

I knew that there was no way I was going to be able to hand hold my camera for so long once we started to take pictures so I switched to using a small lightweight travel tripod I’d brought with me and was itching to try. It’s nowhere near as solid as my ‘proper’ tripod but then again that is just way too heavy for me now. However, even using a tripod when you have limited upper limb movement is not without its difficulties. Even though the tripod only extends to 1 metre it is still quite a challenge for me to raise my arms up that high to operate the controls, and because I am loosing the precision dexterity needed to adjust such small controls it makes it even harder. It’s only when you have to compose a picture with a tripod mounted camera do you realise how time consuming it is compared to hand held photography where it is possible to make subtle adjustments to straighten out the horizon or improve the framing almost intuitively. Compare that to using a tripod whereby you need to continually make adjustments to the height of the legs or swivel the pan head to get everything level, constantly bend down to peer through the viewfinder and adjust the zoom ring to fill the frame and then pick up the whole camera/tripod assembly and move it to another location. The whole thing turned out to be a very frustrating process and I became a little dejected at how few pictures I was able to take and how many photo opportunities I lost because I am slowing down and cannot respond to a situation quick enough. It was even more frustrating when the following day I noticed that a few of the shots were not that sharp. I’m guessing that the act of pressing down on the shutter release caused the camera to move slightly on what is really only a fairly flimsy tripod. In future I’ll have to look at using a remote camera release.

The trip to Exbury proved that I am loosing the ability to go out photographing on my own. I’m at the stage really were I need an extra pair of hands…or two – a support team! I even need help putting the camera strap over my head these days – just cannot raise my arms high enough. But despite all of that it was a great day out in the company of good friends and for me a most welcome change of scenery. The weather was very kind to us and we were lucky that there were so few people about. In fact at times it seemed like we almost had the place to ourselves – it was so peaceful. Ideally it would have been even better if there were more flowers in bloom but I am not all that familiar with flowering seasons for specific plants – I just enjoy looking at them and marvelling at the near infinite variety of Mother Nature.

As the MND spreads it is making my life an increasingly difficult challenge. I hate the way this disease is systematically dismantling my life, taking away everything that gives me some joy in life. Naughty neurones – go to your room! 👿

I don’t really have much in the way of photos to post this time but I know that Robin & Susie took plenty, particularly of us so I may be able to upload some of those in a companion gallery along with a few of my own. Stay tuned!

Before I go I would like to offer my heartfelt thanks to both Robin and Susie. It was great spending the day with you folks and I really enjoyed it. Thanks for all your help, kindness and consideration, for ferrying me around, carrying my camera kit, for being patient whilst I tried to take a shot and for generally looking after me. Thanks too for all the photos you both took of us. Look forward to being able to do something together again soon. Oh, and an extra thank you to Robin for doing all the driving.


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Carry on computing!

No, not one of the classic British comedies but an account of my efforts to retain access to the world of computing and the Internet in the face of a progressive disability. But first a little history…

I am what I suppose you might call an experienced computer user. I’ve been using computers in one form or another since the beginning of the eighties when fresh out of an apprenticeship I entered a busy production control office and began working on what was at the time quite an impressive IBM System/34 mini computer. This was in the days when computers were the size of filing cabinets (and these were the mini computers!) and the (dumb) terminals took up half the desk, had tiny curved screens and green glowing phosphor characters. Floppy discs were truly ‘floppy’ and about the size of an old 45 RPM record! Printers were dot matrix and floor standing and would churn out huge amounts of works orders and other production related data on fan-fold paper. And to keep the noise down they were fitted with acoustic hoods.

My very first personal computer - the Sinclair ZX81

In 1982 I bought my very first personal computer, a Sinclair ZX81 which came complete with a massive 1K of memory! To put that into perspective a blank Word document these days takes up 10K – not much less then the 16K memory expansion ‘brick’ I bought a little later! Back then there were no dedicated monitors for home computers so I used to connect the whole thing up via the loop aerial socket on a portable black and white TV. Even when switched on it was hard to tell apart from a small cursor, and if you wanted it to do anything you would have to program it. I can just about remember buying a magazine called Sinclair User which used to contain program listings that you would have to faithfully key into your computer line by line on the terrible membrane keyboard. I would spend hours typing in these listings only to find I’d made a typing error somewhere! Happy days! They don’t make computers like that anymore – thank goodness!

Fast forward a quarter century (my goodness, doesn’t it sound ancient when you say it like that!) and the world of computers has changed out of all recognition. They have woven themselves into the very fabric of modern society and certainly here in the Industrialised world it’s hard not to have some form of contact with them even if only in the form of government, health and other such record systems. At the beginning of the computer revolution in the days of mainframes one computer would be time-shared with many people. Then came the desktop revolution and suddenly everyone had their own Personal Computer at work and at home. Now as we enter the third age of computers we have many computers for each person: a desktop with a large widescreen monitor, a laptop to move between work and home, a PDA or mobile phone with internet access, a media centre hooked up to a hi-def TV, and possibly even a home server! Computers are truly becoming ubiquitous.

As my disability progresses my dependence and access to the outside world via computers will only increase in importance and need. Like a lot of people I use them for a wide range of tasks which encompass everything from keeping in touch with family and friends via email, Instant Messenger and Skype, managing my finances, shopping, booking tickets, following world and special interest news, keeping informed of developments in the world of MND, pursuing hobbies & interests, participating in forum discussions and contributing my own content via online photo galleries and of course this blog.

By the beginning of this year I was starting to experience my first computer usage problems. As my shoulder muscles continued to weaken and atrophy I was finding it increasingly difficult to pivot my arms across the full width of a standard sized keyboard. Despite the number of years in which I have been using computers I have never become a touch typist but I have become one of the fastest hunt and peck typists in the West! Under normal circumstances I have been able to reach a decent level of words per minute. But all that swift movement places a strain on shoulders and arms and I was starting to find that my arms were tiring quickly and that I would need to take frequent breaks. But not only was it becoming difficult to move my arms rapidly but it was becoming increasingly difficult to hold them up.

My Occupational Therapist from Adult Services came to the rescue when she provided me with a pair of pivoting arm rests (called Ergo Rest). They’re actually designed for ergonomic use in the workplace by providing arm support to people who are using computers for extended periods of time. As can be seen from the photos below they clamp to the edge of the desk and the arms pivot at three points along the arms and support cushions whilst an adjustment screw allows them to be raised or lowered to provide clearance over the desk and keyboard. At first I began to use them as intended i.e. with my lower arms resting in the support cushions and immediately I noticed a big improvement in my ability to type. Because the weight of my arm was now being supported and very little effort was required for my hands to travel across the keyboard I didn’t feel so exhausted.

My workspace


Close-up of the Ergo Rest arm supports

So for a while I was a happy bunny again but then I began to experience problems with my hands and fingers and difficulty supporting the wrists. I moved to using the cushions to support my wrists instead with the fingers dangling over the edge and my arms resting on the swivel chair arm rests. This was half successful but the real problem was that there was insufficient travel in the Ergo Rests for my fingers to reach all the keys. I’m right handed so type predominantly with that hand. To overcome this problem I began to look around at keyboard alternatives that would be small enough to reduce the travel distance of the Ergo Rests. Eventually I came across one by Keysonic called the Nano which certainly lives up to its name (if not literally) because it is a very diminutive 215mm wide x 100mm deep. You can get some idea of how small it is by comparing the photos below with those above or by clicking here to see a promotional photo in use.

Ergo Rest arm supports and Nano keyboard


My updated workspace

As far as overall size goes the Nano is ideal because the entire width of the keyboard falls within the swinging arc of the Ergo Rests which makes one-handed typing quite practical. At first I wondered if I would be able to type on something so small but I have grown used to it now. Inevitably with something so small compromises have had to be made so function and modifier keys are somewhat smaller then on a full size keyboard and this can at times lead to miss-typing if you are not precise enough. Nevertheless the Nano has enabled me to maintain a fairly normal typing speed. As for connectivity the Nano plugs directly into a spare USB port and seems to happily coexist with my full size Logitech keyboard. So far, so good. Unfortunately the one area that lets it down is key response. I have found that you really do need to hit each key square on. If you just hit the side of the key then chances are that it will not work and because of this I often find when I review what I have just written that letters and spaces can be missing. So not really the ideal replacement and the hunt for a decent small form factor keyboard goes on…

Another problem that is solved by using a small keyboard is that it is now possible to drive both the keyboard and the mouse without having to remove my hand/arm from the support cushion. Everything now falls within the swing radius of the Ergo Rest arm supports. With my right arm now becoming so weak it was starting to really tire me out just trying to lift and stretch my arm to reach the mouse.

Over the past few months I’ve also been taking a look at some software solutions that might make computer usage a little easier for a disabled person. For the first stop I didn’t have to travel far as Microsoft’s most recent Windows operating systems (XP and Vista) have a range of what are termed accessibility options already built in. I’d been aware of them for years but had never had the need to investigate them. One feature I found useful straight away is called StickyKeys and I use it all the time now. What this basically does is to allow you to use Shift, Ctrl, Alt or the Windows Key by pressing one key at a time. So for instance instead of holding down the shift key with your left hand whilst at the same time pressing the F7 key with your right hand, you can just hit the shift key and it will stay ‘stuck down’ until after you press another key. With this feature one handed keyboard operation is possible.

Microsoft Windows also has a built in on-screen virtual keyboard which I played around with for a while and even used for typing some emails. I soon found however that using the mouse to click on each letter was an incredibly slow way to write a letter, so I have great respect for those folks who have no choice but to use this input method. I also found that the Microsoft offering is a bit basic and I was rather disappointed to see that it has not been developed further in Windows Vista. Nevertheless it is better then nothing but I was determined to see what else was available on the market and after searching the Internet for some time stumbled across one called Click-N-Type. This little piece of software is gold dust; it offers all the features that I identified as missing in Microsoft’s offering. It was developed by someone who actually cared about the product because it was close to his heart and he became frustrated at all the expensive offerings out there which he felt were just exploiting disabled people. But the best thing about it is that it’s free!

Virtual on-screen keyboards - Microsoft (above) and Click-N-Type (below)

Click-N-Type is a fully featured on-screen virtual keyboard with numerous features. For a start it has a word prediction facility so it will try to guess the word you are typing as you write it by presenting a list of alternatives from which you can select. To speed up the search frequently used words are placed at the top of the list. You can see an example of it working here. Even better the user can add to or delete words in the word list. Another very useful feature is macros and the ability to store a string of keystrokes against a predefined key to automate tasks and then save them as a file. In fact you can store multiple sets of macros which you can load depending on the tasks to be performed. In the picture below (with the Microsoft keyboard as a comparison) you can see keys assigned to macros as being highlighted. As an aid to identifying which keys perform which function you can add labels which pop up when you hover over the keys. I find the ability to automate tasks to be a very useful and time saving feature and use it for such things as logging into mail accounts, pulling information from one application and placing it into another etc. One other feature of Click-N-Type worth mentioning is the ability to select from a variety of different keyboard layouts which can be resized to suit. Even better, there is a companion program that allows the user to design their own keyboard layouts – very useful if you find a different arrangement of keys to help minimise movement of hands and fingers.

My pocket dictation machine - the Sony IC Recorder ICD-UX80

One last thing I thought I’d mention which I’ve found quite useful considering how much I tend to write is a dictation machine. When I first began to experience problems typing and my speed started dropping I would find my mind racing ahead of my ability to type and by the time my hands would catch up my mind would have forgotten what I was going to write! So I bought a neat little Sony digital voice recorder which weighs next to nothing and can plug directly into a computer via a USB port as can be seen in this promo photo. It’s a great little device to just carry around to record your thoughts or ‘brain dump’. Sound quality from the tiny internal speaker is not very loud or of good quality but once you download the mp3 sound files to a PC they sound very good.

So this is where I am at the moment with my attempts to maintain full use of my computer systems. As the nature of this disease is progressive I will revisit this subject again when the current solutions I’ve put into place are no longer adequate. Actually this blog entry is rather timely as I have recently started work on one of several self-imposed and labour-intensive computer projects that will hopefully benefit me further down the line as mobility becomes impaired. I’ll save these projects for a future blog entry but suffice it to say for now that they are already presenting their own unique problems and it sort of feels like I am in a race against time to get them completed before I grow too weak and the paralysis spreads too far.

The solutions I’ve devised at present will never give me back the speed I’m used to or enable me to be as productive again but at least I still have my window on the world and can carry on computing!


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