Thursday, January 13th 2011

The countdown begins…

It’s the day before the big move. Yes I’m finally about to move downstairs into my new purpose-built extension. It’s been a bit of a funny old day really. You would think that after spending a year trapped upstairs I would be eager to get out of this confining environment. Well of course in many ways I am, but there is a tiny part of me that is going to miss being here. Because through necessity I have had to make the upstairs a sort of home-within-a-home, it has become a comforting environment. And up until now I’ve always known that I would eventually go back downstairs. But now that the time has finally arrived I am also only too well aware that I will never be able to return and there is a sort of finality to it that makes me feel uncomfortable. So before I turn the page and start a new chapter I worked in my study reading and writing for the last time, whilst tonight I shall sleep in my bedroom for the last time.

Fortunately this morning my mind was fully occupied with a visit from Peter who works for AbilityNet. He’d dropped in to demonstrate a hardware solution that he’d been working on that would allow me to control the mouse cursor using my mouth. At the moment I’m using my feet to operate 2 large button switches and a trackball which collectively simulate the operations of a mouse. Unfortunately, as I’ve already mentioned previously, my legs and feet are slowly paralysing, and it is becoming increasingly difficult to move them. The inexpensive home-made solution that Peter has come up with is rather ingenious. Basically it comprises of a PlayStation 2 game controller that is mounted on a Manfrotto adjustable arm and clamp which is attached to the edge of the desk. A piece of software called AutoHotKey is used to redefine the functions of the two main multi-direction jog buttons. We gave it a trial today and I was impressed by how easy it was to use. The only problem we had was that neither of the two Manfrotto mounting solutions that Peter had brought with him were long enough to reach from my desk to my face so until we’ve ironed out that problem I won’t be giving up on the foot controls. I shall be returning to this subject once we’ve got everything up and running and I shall let you know how it works on a day-to-day basis. One thing that has already piqued my interest are the possibilities that AutoHotKey offers to someone in my position. Being able to automate complex strings of keystrokes could save an awful lot of repetitive voice commands. Again this is something that I plan to take a further look at when I get a moment.

Okay, that’s about it for today. Time to switch off ready for tomorrow, I have a feeling it’s going to be a busy day. I have a lot buzzing around in my mind at the moment that’s making me a bit unsettled. I shall be okay once I’ve settled in to my new surroundings but for now I feel a bit apprehensive.


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Monday, August 2nd 2010

The last Jacuzzi… and departure

My last day at St Michael’s Hospice flew by at warp speed. I allowed myself the luxury of having one last Jacuzzi bath which may actually be the last bath I ever take as all the healthcare professionals supporting me have talked me out of having a bath in my new extension on the grounds of safety. I was also told that the hospice itself is planning to remove the bath and install a wet room as apparently this is what people prefer. However during the time I was with them I tried to make use of it practically every day as I found the hot soapy water soothing on my muscles (yes I’ve still got a few smile_regular ). Mind you, all the rolling around on the bed I had to endure afterwards as they dried and dressed me soon undid all the benefits I’d gained.

I don’t know if it was a simple case of anxiety at the thought of leaving the safety net of the hospice, or just another progression of the disease, but I woke up feeling very tired with very little appetite and generally not feeling at my best. I struggled through breakfast and by the time lunch arrived (poached cod in parsley sauce with potatoes and vegetables) was barely able to pick through a few mouthfuls. In the end I gave up and had an ensure drink. My appetite has been dwindling again for about the past week and I’m a bit concerned that I’ll end up in exactly the same situation I was in when I was admitted to hospital i.e. surviving mostly on high calorie drinks with a few bits of food here and there. It does seem to be rather cyclic.

The ambulance to take me home arrived shortly after 2 PM. I travelled the distance home lying on a stretcher bed but they transferred me (inside the ambulance) to a stretcher chair when we arrived, and it was this that the two-man crew carried me up the stairs in. A staff nurse from St Michaels Hospice stayed with me until one of my own carers arrived later in the afternoon.

And just like that I was home again after a five-week absence. Happy to be home? Hmmm, I’m not so sure at the moment. I guess that’s kind of a strange thing for me to say considering I was very reluctant to leave the house in the first place but since then my needs have changed. However, had I been trapped in a hospital ward for five weeks my reply would be somewhat different! I must say that I felt very safe in the hospice with help of all kinds only a pushbutton away 24/7. Here at home things will be slightly different and I will have a greater reliance on technology to see me through the times when no one is around. But for now I will reserve judgement and just see how everything pans out over the next few weeks, allowing everyone, myself included, to find their way in this next stage of the disease and all that it entails.

My new beefed up care package kicked in this evening with Linda, a new carer to my team, coming to assist Debbie for the first of my double ups. Finally the gantry hoist fitted above my bed early in the year was going to get some use! The sling we’ve been given is a different kind to the one I got used to in the hospice and at the moment it feels a little strange especially as this one has reinforcement straps inside the hood which supports the head. I’m sure I’ll get used to it soon enough though.

In addition to the CommuniCare alarm I wear around my ankle I now have another means of calling for help in the form of a wireless phone called the Possum Freedom. This nifty little device clips onto the side of my Possum Primo! environmental control system which when mounted on a stand can be transported between my study and the bedroom. The phone has been loaded up with emergency contact numbers so even in bed, paralysed as I am, I will still be able to make a phone call. To me this is a major upgrade in feeling safe giving me the reassurance that I’m not so isolated. The profiling features of my bed have also been programmed into the Primo! so if I need a positional change in the night I should be able to alleviate some kinds of discomfort myself. I must admit though that it did feel a little worrying at first when I heard my carers leave for the night.

Before signing off I just want to say a big thank you to Ann and Debbie who have been doing a lot of running around on my behalf (as usual) these past few days getting everything ready for my return home. Thanks girls, it really is appreciated. I also want to thank my brother, Jason, who’s now taken over IT duties from Bernie, and managed to spend some time with me this evening setting up my computer and all the paraphernalia that I now need to operate it.


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Friday, July 30th 2010


I’m into my last few days here at St Michael’s Hospice and preparations for my departure have been taking place throughout this week. The stairlift has been permanently removed from my house so that it will be easier for an ambulance crew to get me back upstairs (and out of the house if my health declines sharply). It will also be easier to take bulky equipment upstairs. Yes, after only about four months of use the stairlift has been decommissioned! It was something that was always seen as a temporary measure until the extension was built but even I was surprised that I got so little use out of it. This is a shining example of how disease progression can soon make things obsolete.

Yesterday my shower/commode chair and soft form mattress were removed from my room here at the hospice and taken home. I really wish I was allowed to have one of the alternating pressure mattresses I have been sleeping on for the past few weeks. It really is a notch or two above what I sleep on at home and I have been able to get some very deep sleep with no pressure sore problems because of it, but unfortunately they are very expensive and not available in the community.

The folks from equipment services also paid a visit to my house yesterday and removed all the redundant equipment that I will no longer have a need for, such as the bath lift, toilet seat riser, glide about chair and perching stool. So now we have some space we can start filling it up with new equipment!

This morning Chris (my OT with the PCT) dropped by to trial a new sling that will be used at home to hoist me when doing all my transfers. The difference compared to the ones I have been using here at the hospice is that it uses loops of material to attach to the hoist instead of plastic clips. It was also another chance to check out the techniques that will be used when dressing me on the bed. Everyone has sort of come to the conclusion that the best way to go about it is to roll me slowly from one side to the other. Only problem is that it can be very uncomfortable for me with the weight of my body pressing down on the shoulder joints and shoulder blades. We’ve been experimenting with taking Paracetamol ahead of the actual moving and handling but so far I’ve not found it to be that effective.

Richard (from Remap) called in this morning to show us what he had been working on so far as a means for me to be able to take a drink without assistance whilst sitting in my wheelchair. He came armed with a small toolbox, a portable vice and a junior hacksaw, proceeded to cut some tube to length, made some marks on others, took some final measurements, and went away again saying that he would contact me next week when it was finished!

I had to say goodbye to my new wheelchair early this afternoon as that to was being taken to my home ahead of me. So in its place I’m back to the oversized blue reclining armchair which starts to get uncomfortable on my shoulders and bottom after a few hours. Also being big and cumbersome and heavy to push means that I am now limited to staying inside my bedroom or conservatory, which is probably no bad thing at the moment as it has been raining here this evening.

The laptop computer that AbilityNet kindly loaned me whilst mine was being repaired was collected by the Courier and sent back this afternoon so fingers crossed that my one behaves itself. Once I get home I really need to start looking at getting a second computer because I literally cannot afford to be without one.

But the hardest thing this week has been saying goodbye to all my newfound friends as they gradually go off shift or go on holiday.

So now it’s just a waiting game. I’m sure the next couple of days will just fly by and before you know it I’ll be back home.


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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, July 14th 2010


The new air filled mattress overlay wasn’t exactly a resounding success. I woke up in the morning to find that about a quarter of the air pockets around my feet and head had deflated! Also because I was finding it difficult to get my head and neck comfortable I ended up having to sleep in a more horizontal position than I normally would. Consequently I woke up with pain in my lower spine similar to (but not as severe) the kind I had a few months ago before I got a community bed with full profiling. We’ve since discovered that the mattress had a puncture and that the valves aren’t working properly. Caroline (one of the hospice’s occupational therapists) has managed to obtain another mattress so we’re going to give it another try tonight.

In a change from the usual morning ritual the hospice staff and I have collectively decided that I would have a bed bath today instead of my usual (and I must say luxurious) Jacuzzi bath. The reason for this is that I need to get used to what I will initially be having at home when I get discharged. Up until recently I was still hoping that I would be able to continue using my AquaJoy bath lift, and indeed I had been told that funding had been secured for me to have a ceiling track in the bathroom. Now however I’m being told that the consensus is with my upper body strength fading it would be too risky. So this morning I lay on the bed whilst Ann and Chris (one of the hospice’s healthcare assistants) cleaned me using bed bath wipes. Basically it’s a pack of about 10 impregnated disposable cloths that are heated up in a microwave before applying to the skin and then discarded. A whole pack is used each time someone has a bed bath.

Jane (my OT with Adult Services) turned up this morning with a guy from an equipment supplier to demonstrate a shower chair for use in the extension (which hasn’t been built yet). This all seems a bit premature to me as I won’t be able to make use of it for some months to come. But perhaps they are on a long lead time so need to make sure that we spec the correct one. In any case it was quite an impressive looking chair with a comfortable seat, a recline and tilt function, plenty of back support and a head support. All of this will be necessary as my body gradually loses the ability to support itself. This particular chair is designed not only for a wet room environment but also for positioning directly over a Clos-o-Mat toilet which I am having installed in the extension. I was able to sit in it for a good 20 minutes or so and in that time it seemed quite comfortable so I guess this is the one they will be ordering.

Received an e-mail back from the repair company looking at my laptop computer to confirm that they have now received it and that an engineer will be in contact with me shortly.


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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 25th 2010

Something for my neck

Margaret (my Physiotherapist) and Chris (my PCT Occupational Therapist) called in late this morning with a new neck support for me to try. Previously I had been experimenting with something called a headmaster’s collar but I had found it to be too restrictive due to its rigidity, making it difficult for me to lower my upper body when trying to look down. Also I found that after a short while it became uncomfortable to wear and would hurt my chest. The people at Salts Techstep have taken a fresh look at the problem of supporting the neck muscles and come up with the Oxford Collar, a design specifically engineered for people with MND. As you can see from their webpage here it does look rather strange. At first I had my reservations about its effectiveness but this seems to be one of those occasions where looks are deceiving. For a start it is very lightweight and for the times when the chin isn’t actually resting on the chin pad you would hardly know it is there. Even when the head falls forward so that it is being supported by the chin pad it appears to be far more comfortable than previous designs I have looked at. A lot of this is due to the wire sprung design and to the padded vertical supports which evenly distribute the load so there is no painful pressure point on my chest. They’ve left it with me to trial and have asked me to give them some feedback as it’s the first one they’ve ordered.


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Friday, January 22nd 2010

Further preparations

Oxford Midi 170 electric hoist

I had another delivery from Equipment Services this morning. Today they delivered a mobile hoist for the study (see photo below). The purpose of this piece of kit will be to help transfer me into my office chair from my glide about chair if my legs fail altogether. At the moment it’s just sitting in the corner of my study behind me and out of the way, but it’s nice to know that Marion, my OT, has done her usual good job and arranged for equipment to be delivered in a timely fashion ahead of actual need. My carers are relieved that it is an electric hoist and not a manual one as it will make life easier for them. So that’s two down and one to go. Just waiting now to see what happens with regards to the ceiling track in the bathroom which will allow access to the bath lift. I’ve been told by my OT that the equipment stores are not going to fund it so she is looking elsewhere for help. I was just thinking… With all this hoisting equipment my house is going to start resembling a loading bay!

A long chat with my GP

I had the first meeting of the year with my GP today. Quite a lot has been happening in recent weeks so predictably there was a lot to talk about to bring her up to speed and to seek her advice on. We touched on a whole range of subjects from muscular aches and pains, dwindling appetite, skin condition, and intermittent constipation (of all things!) which I suspect is being brought on by reduced mobility. And at the request of my senior carer she is now going to start prescribing E45 cream and Sudocrem to protect the skin.


Received a letter from the council today and guess what it contained? Yup, approval has been granted on my planning application! But just to be clear on this, it’s the second application, the one to the rear of the house. I must admit (and this might seem ungrateful) that I read the letter with mixed feelings. Why? Because of all the disadvantages associated with it such as losing most of the back garden, reducing the light in the dining/living room and removing the view I have at the moment out onto my garden, as well as ending up with an inspection cover in the wet room for the drain which lies beneath. But beggars can’t be choosers and the main thing is that I at least now have permission to build a ground floor bedroom and bathroom which will eventually make life a lot easier (although having no garden to enjoy). I’m just slightly annoyed that all the help given by the healthcare professionals to add their weight to the second planning application couldn’t have done so the first time round. Given the time constraints we’re under it seems unlikely that we would now spend further time and money on an appeal with an uncertain outcome when we already have what we need. Anyway the next step will be to contact a number of builders on the approved register and have them tender bids and then it will be a case of waiting on the council to determine who will get the contract based on price and availability to start.


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Friday, January 15th 2010

Warming up

The snow is starting to thaw at last, temperatures are now up to a quite toasty 0°C or thereabouts, tarmac is starting to make a reappearance and my carers are able to start driving up to the house once again instead of leaving their cars a safe distance and walking the rest of the way. I really wish I had some pictures to post of the snow outside the house but unfortunately my complex looking camera frightens most of my carers off!

New bedroom equipment

I had a delivery from Equipment Services this afternoon whilst Vanessa was feeding me my dinner. They had come to fit a goalpost hoist system in my bedroom. It took about 30 minutes for the two guys to assemble all the pieces. As the name suggests it resembles a goalpost i.e. two uprights and a cross beam that straddles the bed. The hoist mechanism travels along the cross beam which extends out beyond one side of the bed sufficiently so that I can be hoisted out of the bed and lowered onto a glide about chair which is then rolled into the bathroom. At the moment it’s just been set up ready for when we actually need to use it. Marion, my OT, will be coming out to demonstrate it soon. So there we are the first piece of equipment ready for when my legs fail completely is already in place and depressing as it is to think of I am at the same time very grateful that Adult Services responded so quickly.

Some good news

Rachel phoned up this afternoon with the good news that funding has been approved for my new hours. The intention is that we’ll be moving from four short calls each day to 2 blocks of time: a morning/lunchtime session and an afternoon/evening session. Resourcing for this is still being looked at but the plan is to start the new hours at the start of next month. The increased hours will allow more flexibility in what I do and when I do it whilst at the same time making things safer for me. However I am being told that because the package is now quite expensive this will most likely be the last time we can increase it using day care rates. So if I start to have a need for care in the night I will probably have to consider having a live-in carer.

Planning application update

I had a visit from the planning officer today who had called round to take a look at my back garden as part of the process to determine suitability of my planning application. Not sure how much he’d see considering it was ankle deep in snow! This may or may not work to my advantage as the snow was hiding the inspection cover for the drain just off the patio (in what will end up as the wet room)! I suppose beggars can’t be choosers and I should at least be grateful that I have a second site that could potentially be built on but I just cannot work up the same enthusiasm for this second planning application because of all the disadvantages associated with it. I’m still annoyed I was refused planning permission to build on the side of my own house, and even more annoyed when I found out this week that the appeal had not even been started yet because the council had not made all the necessary documentation available until Christmas week. All efforts are now being concentrated on the second application which I’m told they hope to reach a decision on within about three weeks. I guess now they’ll wait and see what the outcome of this one is and then decide on how to appeal.


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