Friday, July 16th 2010

New wheels

As I predicted I got a much better night’s rest with no headaches or coughing spasms on waking up. Phew! I’m still being prescribed antibiotics several times a day but I have to say I feel a lot more like my normal self again.

Ronnie from Wheelchair Services dropped in this morning with my new wheelchair, an Invacare Rea Azalea Assist. What I have been given is something far more suitable for my current needs than the transit wheelchair I’ve been using for the past year. The improvement in comfort, thanks to the thick upholstery, is immediately noticeable as soon as I sat in it and was positioned correctly. The high backrest gives good support to my upper back and the fully adjustable neck support takes the load off my neck muscles. The backrest can be reclined on its own or the whole chair can be tilted. This will be a godsend when I simply want to lay back a little and rest for a while and let gravity hold me in position. This combination of features makes the chair a pleasure to sit in over prolonged periods – or at least I hope so. The chair has been left here at the hospice so I can get full use out of it before I go home. This will enable me to determine how comfortable it is to sit in all day long, whilst also allowing me more freedom around the hospice and its grounds.

Maria Miller, our local member of Parliament (and the person who I wrote to earlier in the year asking for help with my planning application) visited the hospice this morning although I never got to meet her. A photographer was called in to document the event and also to take some pictures of the patients for promotional purposes. I was asked, and readily agreed to participate so had my photo taken whilst Helen performed physiotherapy on me. Afterwards, Mark, the photographer, came to talk to me in the conservatory about photography after hearing me say that it had also been my hobby and how I miss taking pictures. My frustration must have struck a chord because he seemed very keen to want to help me take pictures again. So after a chat about some of the technicalities of photography he went away promising that he would look into it. For me, if nothing else, it felt good just to be able to talk to someone about one of my hobbies rather than about my disease.

An engineer from Possum has been to my house today to install a hands-free phone that connects up to my environmental control system. I’ll now have the ability to make phone calls myself once again and will be able to do so in both the study and bedroom.

Some members of the hospice staff have been out to my house this morning to do some assessments on how easy it will be to move me, my wheelchair, and my shower chair around upstairs. They’ve also looked at the ease of getting equipment upstairs and of getting me up and down the stairs in an emergency and concluded that the easiest thing would be to just remove the stairlift altogether. So it is starting to look like after only four months of use my stairlift is going to be retired and dismantled… Possibly.

Chris and Mo (both health care assistants) gave me a guided tour of the hospice and its grounds this evening. It was the first time since arriving that I’ve been able to venture further than my room, bedroom and conservatory which are all in close proximity. Having this wonderful new wheelchair has given me back some freedom of movement (although not independently of course) as I can now go places that my previous huge armchair-like seat was unable. And it was a lovely evening too with the sun shining and a nice breeze on the face. It felt good to be out and exposed to the elements instead of sitting in a room all day.


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Wednesday, May 19th 2010

Foot controlled study… and more

Jack from Possum called this morning bringing with him some equipment that has enabled me to start the gradual transition from an arm/hand controlled environment to one that is controlled using my legs and feet. This should keep me going for some time as I still have a lot of movement in my feet which is more than can be said for my hands. Well I hope it will anyway because I’m running out of limbs! smile_regular  Trying to operate all the switches on my desk has become so difficult lately that more often than not I’ll simply ask one of my carers to do it for me. But this is not how I want it to be; I still want as much independence and control over my environment as possible and fortunately there is a wealth of technology out there to enable that.

One of the pieces of equipment that Jack brought with him today was a portable floor stand for the Possum Primo, the infrared environmental control unit. The idea behind this is that we’ll be able to move the unit from room to room while still having access to all the equipment in that room from the Primo. So at night for instance the stand and its clip-on Primo unit will be placed by the side of my bed. This means that from now on I’ll be able to access the bed’s profiling controls by using my feet to press a large flat button fitted at the base of the bed. This switch connects via a plug-in lead to the Primo unit which in turn sends an infrared signal to a receiver unit that Jack has fitted to the bed and which connects to the bed’s electronics. Any thoughts of my carers coming in in the morning to find me sandwiched between the bed’s panels, with only my arms and legs sticking out as evidence of my being in bed can be dismissed, as the bed’s profiling controls have been programmed with a five second cut out smile_regular.

With the stand-mounted Primo unit placed by my desk in the study I now have access to all the equipment around my desk via a plug-in foot switch. Previously you may remember me mentioning being given a little black box that enabled me to activate a desk light, ceiling light, television and photo frame. Well, the infrared codes for all these items have now been programmed into the Primo so I no longer have to have my arm supported in the ergo rest to access any of this equipment. In addition I can also operate the intercom and front door release catch – all by tapping a switch with my right foot and cycling through the options on the screen. Eventually it may become too tiresome to use my foot and if that becomes the case then I will simply have the switch mounted on the inside well of my desk and activate it using my knee.

The one remaining piece of equipment in my study that still requires me to use my hands is the telephone. A replacement that can be connected up to the Primo unit is due to be installed in the coming weeks. It was due to be part of the installation process today but apparently there is a delay with obtaining the equipment. But even so today’s adaptations have made life a little bit easier for me once again, and for that I am truly grateful.

My increasingly cluttered work environment. However, without the microphone, arm supports, foot switches, phone cradle etc I simply could not function. To the right of the picture you can see the newly mounted Primo unit on its portable stand, whilst at the bottom of the picture you can see the red foot switch.


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Tuesday, April 13th 2010

Moving to foot control

I had a visit from Marion early this afternoon. She brought Paul along from Possum to come and take a fresh look at ways of helping me to independently controlled things. At the moment I’m still heavily dependent on using my arms and hands to reach out and press buttons to operate such things as my telephone, intercom unit, and the little box of tricks that fires off infrared beams to operate the TV and lights etc. Of course I can only do this if my forearm is supported in the ergo rest and then have to rely on using my body to push the arm forward. But just lately this is becoming increasingly difficult as my upper body strength fades. So today we’ve been looking at bringing the Possum Primo environmental control unit upstairs and linking it up with a foot switch which could be used to cycle through the options on the Primo display. This would then enable me to access all the equipment which we would program into it thus giving me a ‘hands-free’ means of control. For me it is the next logical step as there is very little I can do now with my upper limbs. My legs on the other hand although not very strong in terms of keeping me standing up for long can at least be moved easily enough so pivoting on the ball of my foot to operate various switches presents no problem at the moment. In a similar fashion we plan to attach a large soft action switch to the foot board at the bottom of the profiling bed so that I can if necessary elevate or recline it myself. However, to be able to operate equipment in both the bedroom and the study will require moving the Possum Primo from room to room and then reconnecting the foot switches.


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Monday, January 4th 2010

A peaceful night

In complete contrast to yesterday I managed to get a really good night’s rest and didn’t wake up once managing a whole 10 hours rest! Even my back was behaving itself for a change. If only every night was like this. Normally I wake up at least once if not twice during the night so uninterrupted sleep is really appreciated. It didn’t do a lot for my energy levels though. I couldn’t even blow a hair off my computer keyboard, I had so little puff.

Let there be light

Paul, an engineer with Possum called this afternoon to fit some infrared switches to my study so that I would be able to activate ceiling and desk lights while sitting at my desk. They are all controlled from a handy little control unit that is capable of storing up to 16 infrared codes. Being able to control the lighting has made such a difference. I’ve been struggling for some time now to flick the wall switch on. In fact I have to throw my right arm against my left and hold it there whilst bumping against the switch. As for the desk light, well I’ve not been able to use it for a long long time because I cannot reach down and activate the corded switch. So for months I’ve had to endure a bright overhead light which causes reflection on my computer screen when I’m trying to watch a movie. Being able to just have a desk light on which casts only a small pool of light is much more restful on my eyes and more atmospheric. Paul has also captured the infrared codes for basic operation of my small flatscreen TV which I shall be moving into the study shortly.


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Home automation – first steps

Living alone with a debilitating disease like MND brings with it a whole range of problems that are not experienced to the same degree when there is always someone else around to lend a hand. Of course even in these cases a person is likely to want to preserve as much independence and dignity as possible. Now that I have homecare I at least have a couple of opportunities each day to ask for help from one of my carers. But for most of the day I am by myself and as my body gradually fails I will have an increasing need for some kind of assistive technology if I am to be able to interact with the house environment at even a basic level.

Fortunately, Marion, my Adult Services Occupational Therapist has been keeping on top of things and looking much further ahead than I’ve been. She’s recognised for some time now that I would need an environmental control system, a sort of home automation hub that could hook up to various appliances throughout the house and to be able to control them from a centralised location with minimal physical effort. I did have an assessment for one of these not long after I left work last year but at the time the consultant in rehabilitation medicine felt that it was a bit premature and that I still had a fair bit of mobility. However, by late October when I had my second assessment my (upper limb) physical abilities had deteriorated sufficiently to convince her that there was now becoming a need. So after being shown various systems we settled on the Possum Primo!

Specification sheet for Possum Primo environmental control system

Shortly before Christmas my OT (Occupational Therapist) and a representative from Possum paid me a visit to discuss my initial needs which were to have a door entry and intercom system installed. This would allow me to determine who was at the front door and to remotely open it – from either the living room or from my upstairs study. They’d also come to assess the work required so that a quote could be sent to the council (the cost of the work was being met from the Adult Services budget). I was told that it would take about eight weeks to get the budget approval so I figured that allowing for Christmas I would probably not see anything installed until March. I was therefore rather surprised when I was contacted in late January to say that I was being fast tracked and that an electrician from Liftech (Possum were too expensive on their bid for the door openers) would be calling the following day to install the spur extensions and 13amp sockets that would be required to power the front door and hallway doors.

So the next day the electrician called round and within three hours had all the sockets and cables in place in the hallway and near the exit from the living room. A day later the fitter from Liftech arrived and spent the whole day with me working through until 7pm installing the motors, door opening arms, control box, the various switches in the hallway and living room, and the proximity sensor mounted on the outside of the house. I’d chosen to have the door opening switches mounted at the same height as when my arms are hanging naturally by my side, that way it would require little effort to operate them. In fact I could even ‘bump’ up against the wall if necessary.

Door opener on interior living room door

For me to get into the house now requires the use of a special proximity watch which looks quite normal when worn around the wrist. But when the watch face is pressed up against the proximity sensor on the wall it activates the door opener. The door will fully open for a preset time before closing by itself again. The doors can be kept open by leaving the interior switches depressed – ideal when bringing shopping in for example. Although the door is now effectively a keyless design I can still open it by using the original key and in fact I always take it with me as a backup – just in case the technology fails. Unfortunately the watch is fitted with a buckle strap as opposed to a bracelet clamp so I need the help of one of my carers to put it on and take it off.

An engineer from Possum and a technician from Adult Services turned up the next day to install the intercom systems, which required some cabling through the hallway, living room, stairway and study. I now have the ability to use a few pre-recorded voice responses or to speak into the intercom myself which is an almost hands free design and can therefore sit on a table. You only need to touch the membrane keys twice; once to start speaking and once to open the door. Having this system in place will prove particularly useful for the time I spend at my desktop PC in the study as I can no longer run quickly down the stairs to answer the door.

Intercom and Environmental Control System

The main piece of kit to be installed was the Possum Primo! environmental control system. This device with its touch sensitive screen has the ability to not only capture the infra-red codes of various remote controlled devices such as TVs, DVD players, Sky boxes etc. but can also be wired into other systems which in my case meant the doors and intercoms. Using the touch screen when mounted on its stand would be quite an effort for my arms; in fact I’d need to support one arm with the other and couldn’t do it for log anyway. So to make life easier for me Possum have supplied a switch connected by cable to the Primo! that can be triggered using a hand or foot. I’ve got it resting on the arm of the sofa. Pressing it once activates the Primo! Pressing it a second time causes the display to go into scan mode and cycle through the options available e.g. activate intercom greeting/speak, open front door etc. So to some degree I have some duplication of functions but over time the Primo! will come into its own as various tasks are assigned to it. The first of these was to plug the TV into an infra-red activated wall socket adaptor so that I can switch the TV on via the Primo! rather than swinging my arm high so that it lands on the top of the flat screen where the controls are.

I’d had electricians and fitters in over the course of three days and been pleased with everything they’d done. It all looked neat and tidy although I must say that I now have a hallway that’s starting to resemble an electricity sub-station with all the boxes and cables mounted at ceiling height, their status lights glowing brightly and a low hum constantly emanating from everything. But it’s done and is already making life easier.

Hallway electrics and front door opener

And already Marion and I are looking at the next step which will be to fit electrically operated curtain pullers and these too will be controlled via the environmental control system.

By the time I’m finished I’ll have a home so automated that it will be like the secret lair of one of James Bond’s arch enemies :-).

I am indebted do my friend, Robin Taylor, who kindly took the photos I needed to illustrate this article. I just did all the post processing. Thank you, Robin.


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