The month of October – part 3

Calendar entries highlighted in yellow

19th October – The duvet won… this time / Care plan rewritten / The fourth calls start

Half the duvet slid off the end of the bed during the night and my legs have grown so weak that I was unable to raise them up whilst lifting the duvet back onto the bed. In fact when I tried to do so I experienced pain in my leg muscles. I did try getting out of bed (no easy thing these days) and pulling the duvet back onto the bed with my hands but my grip and strength is so poor that it had no effect and only increased my chances of falling over. I ended up having to sleep for the rest of the night on an open bed and feeling a bit chilly.

There was a bit of a déjà vu feeling about today’s meeting with Debbie, the home care manager for the care agency looking after me. Not so long ago we both sat around my dining table thrashing out the details of a new care plan, basically a document which details the care activities required to support me for each of the various calls throughout the day. And yet here we were again doing exactly the same thing. Why? Because the agency had taken so long to get the last one typed up and ready for publication that by the time they did my care package had increased in hours and number of calls. So this morning we’ve been adding additional tasks to the existing calls that have come to light in recent weeks and adding instructions for the final put to bed call at the end of the day.

Tonight saw the start of my put to bed calls with Francesca volunteering to do several a week. These are happening somewhat earlier than I would like at around 9 PM but of course have to fit in with the availability of the carers. It means that I will effectively be in bed for half the day as my morning call isn’t until 9 AM. It will also force me to reorganise the way I do things or indeed watch TV as I will no longer be able to watch a movie at night. It is certainly more than a little frustrating as time is very precious to me and I hate the thought of wasting 50% of each day just lying in bed.

20th October – A visit from Possum / Try again

I had a visit this afternoon from Marion, my OT, and Paul, one of the folks from Possum to discuss automation and lifelines. The highest priority is to find a reliable means of calling for help if I should take another fall at a time when I’m on my own in the house so this was top of the agenda today. The demonstration I’d previously received on call alarms proved unsuitable for my particular type of disability and indeed would have been totally ineffective at the time of my accident. So Marion had asked Possum what options they could offer. But once we started to discuss my particular needs I could see that he was going to be struggling to find a solution that would be suitable for all the situations I’d described. I needed something I could use during the day when I had a need to leave my desk but also be usable if I had a need to get out of bed at night to visit the bathroom. Fall alarms would not be suitable when lying horizontally in bed and indeed may not even activate if I gradually slid down to floor level instead of falling hard.

We looked at chin switches which were basically rather large plastic circular discs mounted on a plastic tube that encircles the neck. It looked big and cumbersome and although I could probably tolerate it whilst working at my desk I couldn’t for one moment imagine having one around my neck when lying in bed especially as it would need to be connected to a portable battery pack/transmitter. I then suggested having mats with pressure activated switches by my bedside and office chair. The idea being that I would step on these mats when getting out of bed or leaving my study. That would in turn start a clock so for example if I was not back and stepping on the mat within 15 minutes an alarm would be set off. The beauty of this particular idea is that if I took a fall and became unconscious the system would still work and call for help. However there were some concerns about inadvertently activating the pressure mats. Another idea suggested and one which is going to be pursued further is a variation on the wrist bracelet that CommuniCare demonstrated to me. So instead of having a call button on my arm it would be strapped to an ankle and to activate it I could either push that leg against something or bring my legs together.

The other topic of discussion was automation. During the autumn and winter I plan to base myself in the study upstairs as this is a relatively small room and easy to keep warm, plus it is near the bathroom and bedroom should I need either of these. Another big advantage is that it will be the farthest point away from any construction work that gets approved to build an extension. To reduce to a minimum the number of times I need to get up from the office chair and thereby reduce the risks of falling, I was looking for ways in which I could control the equipment around me. At the moment thanks to the pivot radius of my arm support I can operate my laptop computer, my cordless phone, and the intercom system, all without having to move from my chair. The next step is to be able to control the overhead ceiling light, a desk light and a TV. The solution to this is a small black box capable of capturing the infrared codes of electrical equipment as well as operating by remote some special light switches and wall sockets fitted with infrared receivers. I also wanted to have some electric blinds or curtains but because my staying upstairs is seen only as a temporary measure it was an almost certainty that I would not get funding. As for the rest a quote is being put together which should go through approval easy enough especially as the equipment being ordered is portable and could be utilised elsewhere in the house at a later date.

Equipment services have delivered a 6 inch raised toilet seat to try. As previously mentioned the toilet seat and frame idea was a no-go and my current 4 inch raised toilet seat is no longer high enough so it is becoming a real struggle to stand up after sitting on it. This new seat certainly makes standing up much easier but the aperture is slightly smaller than the 4 inch model so once again it is not as easy to wipe yourself. That’s more than enough detail!

21st October – Duvet = 2 me = 0 / Slowly getting there

I woke up feeling a little cold as half the duvet had slid off the bottom of the bed during the night again. I tried pulling it back with my legs but it only seemed to make matters worse. I struggled out of bed and tried to lift some of it back onto the bed but I could hardly shift it. I went back to bed with barely my lower legs covered and waited the remaining couple of hours for my carer to arrive. I need to think of some way of anchoring the bottom of the duvet to the mattress. Well it’s either that or sleep in a fully zipped up sleeping bag with a couple of air holes smile_regular.

Richard from Remap called this afternoon with some brackets that he’d made for my stair lift chair. These have been mounted on either side of the chair adjacent to the fold down arms and will each hold a switch at shoulder height that can be easily activated with minimal pressure. The idea is that by leaning very slightly to the left or right when seated in the chair I will be able to control it myself by sending it upstairs or downstairs. The next step is to get Liftech back so they can program the switches to the frequency of my equipment.

Richard also came bearing another gift: my new improved Ergo Rest arm support. This one is slightly longer so that my elbow and forearm are completely supported as opposed to slightly hanging over the edge. It also features slightly more padding so is a little bit more comfortable for prolonged periods working at the computer.

23rd October – At last!

Tim from Liftech called round this afternoon to program the shoulder height switches on my stair lift chair so that I can operate it ‘hands-free’. It was the second day in a row he’d called at my house as yesterday he was here sorting out a problem with the front door as it had stopped responding to commands and would no longer open or close. The switches work very well and I only need to lean slightly to my left or right to activate them. I asked Tim if he had ever come across anyone else using a stair lift in a ‘hands-free’ fashion and he said I was unique in all of Hampshire! Well, now we’ve worked out a solution (which I take particular pride in as the basic idea was mine and Remap just tweaked it) hopefully other people with a similar need will benefit.

So now I’ve finally got a stairlift installed and working as intended but in the months that it took to spec, quote, deliver, and rectify, the disease has moved on. What started out as a piece of equipment that would not only give me stress free access between the upper and lower floors, but would also preserve my independence a little bit longer, has been relegated to something that I only feel safe using with help and assistance from one of my carers. But don’t get me wrong I’m still very grateful to have it as at least I still have access to the whole house, just not when I’m on my own unless it was absolutely necessary. A stairlift is never going to be a long-term solution for people with MND and I never expected mind to be, although I did hope to get some independent use out of it. The best I can hope for now is that it buys me enough time for the house extension to be built, but with my legs weakening all the time it is going to be close.

It was a double ‘at last’ today as I also finally received an up-to-date care plan and risk assessment that for once actually resembles my current situation.

24-25th October – Catching up on outstanding jobs / Weakening further

It felt so good having Francesca back to do my care at the weekends after a couple of weeks absence due to sickness. In fact right at this moment Francesca is my only main carer available as the other three are on holiday so it felt lovely to have a friendly face around. And as usual with Francesca she spoilt me with delicious breakfast and dinner. As she is also the only technically minded carer I have I was able to give her some of the little technical jobs that had been building up such as programming my phones with additional contacts. Oh yes and resuming her job as resident blog photographer!

The wheelchair is becoming a constant companion now whenever I leave the house. On Saturday for instance it was bundled in the back of Francesca’s car for a trip to the hairdressers. It was the first time I had left the house in almost 2 weeks and the very first time that I had walked down the ramp that extends from my front door. Thank goodness the surface was treated with a nonslip material as it was raining out and I was worried about losing my balance. I’m starting to notice that getting in a car is becoming a little bit more difficult. I no longer feel so sure of myself when I lift one leg to get into the car whilst balancing on the other. It’s also taking more effort from Francesca to haul me out of the car. Actually travelling by car is starting to concern me as I become ever more dependent on the wheelchair. I need to find ways of easily transferring from a wheelchair to a car seat. To make matters more challenging it’s not just one carer’s car that I use so can’t look at adapting the car itself.

Another indicator that I’m losing strength in both my torso and legs is the fact that I am starting to struggle to get out of bed by myself. On Sunday it took several attempts to catapult myself off the bed so that I could get to the bathroom. My OT is looking into pillow and mattress elevators which like a lot of things these days will probably come along just in the nick of time.

I asked Francesca nicely this morning to take some pictures around the house of recent adaptations and equipment that I’ve been blogging about so you have an idea of what these things actually look like. Thank you Francesca, you did a nice job as usual.

Here we are at the top of the landing with the newly extended stairlift track that now allows to chair to reach onto the landing as opposed to adjacent to it. This is also where I had my recent accident, falling backwards and hitting my head on the door you see behind me.

Moving in slightly and you can see the 'hands-free' switches and brackets that Remap fitted.

And down we go… let's hope this thing has brakes!

Made it in one piece!

Here's the AquaJoy bath lift I took delivery of a recently. It really has made a tremendous difference.

My new wheelchair friendly ramp that social services built for me. You can also just about see me standing on a similar but smaller ramp on the inside of the hallway so that I can be wheeled directly into the living room.

I've included this one just to show you how the house currently looks. You can just about see part of the planning application notice pinned to the tree on the right of the picture. If all goes well then the single-storey extension will be built alongside the house where the shrubs are currently situated. The window you can see halfway along the brickwork would be transformed into a doorway.

28th October – More stairlift woes / Feeling a bit safer

I was just about to be taken downstairs this morning for my breakfast when I noticed a 2 inch black bolt lying on the carpet adjacent to the stairlift. Immediately my suspicions were raised as such a large bolt would most likely be structural in nature. I couldn’t bend down to take a look to see where it might have come from so that left giving Liftech a phone call, especially as whatever had happened had caused the stairlift to stop functioning. Until it was fixed I was once again trapped upstairs, so you can guess where I had my breakfast this morning. Fortunately Liftech were able to get an engineer out to me within the hour but even before he arrived a couple of other parts had fallen off the stairlift chair as my carer brushed past it on her way downstairs. The engineer arrived and after several phone calls to the manufacturer had identified the problem. Apparently there is an emergency pull release underneath the seat. The idea behind this is that if the chair had been fully rotated and was blocking a doorway and there was a need to quickly exit the house, say because of a fire, then it would be possible to pull this quick release and to be able to freely rotate the chair even without power. Well obviously neither I nor any of my carers would willingly pull it out of its recess. In fact nobody knew it was there. After further investigation the engineer discovered the root cause which appears to have been a cable catching on it so that as the chair rotates it most likely pulled it out. The cable has since been repositioned and the chair appears to be working fine again but it looks like the problem was there since day one. Whilst he was here the engineer noted that the new piece of extended track that was recently fitted was already showing signs of significant wear. In fact in one place it was already down to bare metal which explains all the white dust flecks we’ve been seeing on the carpet. He took a photo on his camera phone to add to his report and said that he will advise me in a few days time of what Liftech will do to rectify it. It’s looking like the powder coat paint job was not applied properly and the rollers on the stairlift are causing it to flake and peel off. I don’t have any problems with the remainder of the track as this was manufactured in Holland. Only the extended piece was fabricated in this country and obviously the paint treatment was not up to spec. It’s never a dull moment with my stairlift!

Lynn from CommuniCare called this afternoon to demonstrate another idea for a lifeline. Unfortunately there had been some confusion over what I actually needed as CommuniCare had in fact received two referrals: one from Linda, my contact with the MND Association, and one from Marion, my OT. But the paperwork and hardware that Lynn had brought with her only covered Linda’s referral which was for a belt mounted fall alarm. But Marion and I had already discussed and discarded this kind of device as unsuitable because I needed to be able to wear something in bed in case I needed to get up in the night. The fall alarm would be activated as soon as I was lying horizontally in bed so not much use. Fortunately Lynn had some other equipment with her in the car and so we were able to experiment with the idea we had last week which was to wear the call button on an elasticated strap around my ankle. Because the button itself is flush with the housing it wouldn’t be possible for me to just bring my ankles together to activate it. The solution was to use the big toe on my other foot to depress the switch and this seemed to work fine, or at least it does when I’m sitting in a chair. I guess the real acid test will be when I’m lying flat on the floor. It’s certainly unobtrusive as my trouser leg covers it up. In fact I don’t even know that I am wearing it. Apart from the ankle strap and button the only other hardware is the speaker box connected to the phone point and mains socket. It is just about sensitive enough to pick up my voice upstairs even though the box itself is downstairs in the living room (because I don’t have an upstairs phone point). So now after nearly 3 months since we last looked at lifelines I have something that seems to work reasonably well. It certainly gives me a feeling of added security and safety knowing that should I take a fall then just like Dorothy in the Wizard of Oz all I need do is click my heels three times and say there is no place like home! I would at this stage like to thank the North Hants branch of the MND Association for funding my lifeline.

29th October – The district nurse calls

I had my regular monthly visit from the district nurse or community nurse as I believe they’re called nowadays. We talked a little about pressure sores. I don’t have any at the moment and my regular carers keep a close eye on my skin to make sure that I don’t. Nevertheless I’m spending an increasing amount of time immobilised either lying on the bed or sitting at my desk so I need to be aware of it. But the one that could be a problem before too long is the thumb joint on my right hand which is constantly resting and being pressed up against the padding on my arm support. As I am using the computer for most of the day it doesn’t get much rest and lately I’ve started to notice that the skin around that joint is starting to look swollen. After discussing this with the district nurse she has decided to place an order for some kind of padding to go around the joint. Hopefully this may alleviate the problem.

30th October – My GP pays a home visit

It’s becoming difficult to get down to the surgery each month for my regular appointments. I’ve mentioned this to my doctor before and she had said she was quite prepared to come out and see me if it became too much of a struggle. So this month I took her up on her offer although I must say that she caught me out completely this morning when she turned up at my door completely unannounced. I’ve not seen her for a couple of months as she’s been off sick and then on holiday so there was a lot to catch up on. One of the things we were discussing was the current difficulty in obtaining the Riluzole medication I need each month. I used to be able to get it within about 15 minutes of presenting the prescription. Now it takes at least a week. Apparently the shortages appear to be across the country and indeed it has been mentioned on the MND Association website. The reason for the shortage is due to the fall in the value of the pound against the euro so high value drugs such as Riluzole can be sold in Europe for greater profit. My own supply of this drug runs out next Thursday morning so my doctor is liaising with the chemist to sort out a supply.

I was just thinking actually that it’s interesting to note that for each year I have had regular appointments with my GP I have used different means to see her. All through the first year I walked to the surgery which was about 30 minutes away. All through the second year I have been using Basingstoke Neighbour Care to transport me by car. Now as we enter the third year will it be regular house visits I wonder? It’s looking that way as my doctor has said that she will call back in a couple of weeks.

Mark

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The month of October – part 1

Calendar entries highlighted in yellow

1st October – Remap to the rescue

Richard, from Remap called round this afternoon to take a look at the ergo rest arm support I have been struggling with since being based upstairs. He has taken it away with him so that he can fashion another extended arm support gutter similar to the one I have downstairs fixed to my dining table. In the meantime he has removed the one from downstairs and adapted the clamp so that it can be attached to my desk upstairs. This has made a terrific difference to my comfort as for the last few days my right shoulder has been drooping because the arm support I was using only supported my hand.

2nd October – Care package review / The return of the stairlift track / Further equipment loans

I had a meeting at midday with Rachel, my social care manager, to discuss what alterations would be needed to my care package in light of my accident, diminishing strength and stability. I feel that I am definitely at the stage now where I need to have someone around me for more hours of the day, not just to provide care, but supervision in case I run into difficulties. In recent weeks certain tasks have become progressively more difficult and it was only a matter of time anyway before I would have had to relinquish them. So I have asked for an additional 30 minutes on my morning calls and the same for my evening calls. I have also asked to have a 30 minute night call added as I can no longer undress myself or brush my teeth. Even getting into bed by myself is becoming a problem because of the difficulty in positioning the duvet over me. Rachel will now go back to her contact at the NHS Continuing Care review board to seek approval for the additional funding.

Liftech have returned this afternoon as promised and have installed the new extended piece of stairlift track. The additional 350mm of track has made a significant difference and has enabled the chair to come onto the landing so that when the chair rotates it feels a lot safer getting on and off. No longer is my body still in the stairwell with my feet hanging off the edge of the landing which gave me no confidence at all and which I felt was an accident waiting to happen. I did have some concerns about how far into the doorway to my study would the new track protrude, whether it will be a trip hazard, and how much of the doorway would be blocked if the chair was parked on the landing. I’m pleased to say that for now at least I can safely navigate past the parked chair into my study. In fact with the chair parked at the top the landing it obscures the track and removes the danger of tripping over it plus as an additional benefit it acts as a partial barrier to the stairwell. So when Kim came round to do my dinner this evening we gave it a try out and for the first time in a week I was able to revisit my own dining room and have dinner downstairs. Getting on and off the chair isn’t too bad although I would feel a whole lot more confident with someone around especially at the top where I have to walk backwards to sit on the chair. I could still seriously hurt myself if I were to misjudge it or if my balance went. At the moment I couldn’t operate it myself even if I wanted to as they have yet to come up with a ‘hands-free’ control mechanism. That is what they are hoping to sort out next week. But at least in the meantime I have access to the downstairs again as well as being able to go out and socialise.

Hampshire county council’s equipment service called round this afternoon with a couple of pieces of new equipment. The first is an AquaJoy bath lift which I’m really looking forward to trying out. I’ve been making do with a slatted bath board for the past year or so which was okay if I just wanted to sit down whilst having a shower, but what I really miss is being immersed in hot water with lots of bubbles so this is going to seem luxurious after a year going without. Time to dust off those rubber ducks and battleships! smile_regular

The other piece of equipment is a glideabout chair/commode which will be kept in the bedroom. As a glide about it may allow me to move from room to room upstairs whilst remaining seated and thus minimise the risk of falls. I believe it may also be rolled over the toilet to give greater height. At the moment though I’ll just be using it as a simple chair albeit higher than the one I had previously.

3rd October – Boys Toys

I’ve been having problems with my electric kettle lately. It’s one of those Breville Lightning’s where the whole water chamber lights up blue. I’ve had it a few years but lately it has caused one of the house circuits to trip out twice resulting in my carers having to go out to the garage to reset the fuse box. Today it died altogether in a spectacular flash which startled poor Francesca. Time for a new one! So after browsing the Argos website (we have one of their stores up the road) I settled on an even more gimmicky kettle, the Breville Spectra. This one doesn’t just glow blue it glows all the colours of the rainbow as the water gradually heats up, a true boy’s toy! Francesca and I stood there in a darkened kitchen mesmerised watching it cycle through all the colours. Sure it’s expensive and considering I’ve just had a Breville that’s blown up probably not the wisest choice but I couldn’t resist having something a little snazzy in the kitchen to liven things up. And besides I don’t buy many things these days. Mind you if this one dies I’m going back to the real basic kettles; the ones with whistles.

4th October – Bliss!

I had a real treat this morning. Francesca called early so she could set up my new AquaJoy bath lift and leave me to luxuriate in a hot bath whilst she got on with some housework. Oh how lovely it felt to be immersed in hot water once again rather than being sprayed. I can’t even remember the last time I had a bath. The bath lift is simple to use and gently lowers you into the bath almost silently. It doesn’t quite get you down to the bath floor level but gets pretty close. On this particular model the back support doesn’t recline as I was told by my OT that those models take up more room in the bath. Even so it is a massive improvement over what I had and improves my quality of life.

5th October – Approved! / Stairlift woes / Nuisance calls

I had some good news this morning. Rachel, my social care manager phoned to say that funding approval had been granted for an additional 1 1/2 hours each day which is exactly what we had requested. So my care package will grow from 28 hours per week to 38 1/2 hours per week (5 1/2 hours per day), a clear indicator of my escalating needs. But the good thing about it is not just having the extra care but also having someone around for more hours of the day in case I run into difficulties, a comforting reassurance when living alone.

My stairlift has been giving me problems… already! It has become very temperamental in deciding whether it wishes to move or not when a carer uses the joystick control on the armrest. We first noticed the problem last Friday when we couldn’t get it to take me back upstairs straightaway and it only worked after much messing around with the joystick and me wriggling around on the seat. The problem persisted all weekend but today it has begun stopping one step before ground level and failing to move when in the parked position at the top of the landing. Fortunately I have the folks from Liftech calling on Wednesday so I’ll get them to look at it then.

I seem to be plagued with nuisance phone calls the past few days which makes me wonder if I have a big neon sign stuck on my roof saying ‘please phone me’. These things are an irritation at the best of times but as each call requires me to stand up so that I can swing my arms and grapple the phone they are costing me valuable energy. Standing up is getting harder and harder so you can imagine how happy I am when after all the effort of picking up the receiver all I hear is a recorded message.

6th October – Dropping like flies / Measuring up / Remap does it again!

My care package is starting to creak and groan as my main carers succumb to colds, chest and throat infections, and the flu. Kim pulled out after doing my personal care yesterday morning and is still off. Francesca is really quite poorly and has had to pull out of all her commitments this week and is laid up in bed. Only Ann remains unaffected at the moment and she is due to go on holiday later this week. So at the moment the care agency is struggling to fill my calls, which is not made any easier by the fact that other carers are also off sick. Even the home care manager is off sick!

Roger, the craft technician working for the OT services, called round this afternoon to do so measuring up outside my front door. The intention is to do away with the timber platform that was fabricated about a year ago which enabled me at that time to gain access to the lock on the front door by raising me up about 8 inches or so. Now however that platform is becoming dangerous as stepping on or off it plays havoc with my balance. In its place I am going to have a ramp that will be wheelchair friendly. I’m told that it will be ready in about 10 days.

Richard (my friendly contact with Remap) has saved the day again. For quite some time now I’ve had to stand up and position myself directly over the cordless phone so that I can operate it. I would then have to use one hand to steady the phone with my other pressing the buttons. My phone has a curved underside which sits neatly in the palm of your hand, except of course I can no longer hold it, which means if I place the phone on the table and then just use one hand to press down on the buttons the whole phone will rock side to side and slide about. The other day it occurred to me that all I really needed was some kind of cradle that will support the telephone and be of sufficient mass not to slide about the table. I sent an e-mail to Richard a few days ago explaining my thoughts and asked him what he could do to help. This afternoon he dropped in with a neat looking cradle fashioned out of a piece of oak wood. The base was covered in nonslip rubber so the whole thing would stay in one place, and the wood had been scooped out of the middle and profiled in the approximate dimensions of my phone. Again there was some rubbery material on the inside to act as padding and to prevent slippage. It worked straightaway! Now when I’m sitting at the computer with my arm in the ergo rest support all I need to do is pivot in the opposite direction and I can reach out and activate the phone. No more do I have to stand up to pick up the receiver, sit down to listen, stand up to end the call, and sit down again to carry on working. What an energy saver! And like all the best ideas it is simple but efficient.

Mark

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Heading for Autumn (September) – part 2

Calendar entries highlighted in yellow

 

10th September 2009 – A meeting about the stairlift / An afternoon with Kim / A pleasant surprise

I’ve had my stairlift a week already and I have yet to use it once because of the problems I’ve already written about. This morning I finally had a chance to meet with my OT and members of Liftech and Freelift, the companies responsible for installing and manufacturing the stairlift. With me sitting on the stairlift at the top of the stairs I was able to demonstrate to them how unsafe it would be for me to try and stand up with the chair still in the stairwell and my right foot half over the age of the landing. Various solutions were discussed such as raising the height of the top step so that it was parallel with the landing, and building a barrier on one side of the banisters to prevent me from falling down the stairs when reversing back into the chair. None of these half measure solutions appealed to me and I was quite firm in telling my OT that there was no why as I was going to walk backwards and attempt to sit in a chair that was not even on the landing and without the use of my arms to steady myself. The solution we’ve come up with is to extend the curved track by another 350mm so that the chair is on the landing. This additional space should also mean that I will need to pivot the chair less and so it will feel more like I am backing up along the landing rather than off the stairs. The only problem is that the extended track will partially obscure a doorway leading to my study by about 6 inches. Hopefully it will be visible enough to prevent trips. If not we’ll have to erect some kind of guard or barrier for the carers who go into the room to dry clothes so they don’t trip and hurt themselves. I’m told that the extended track can be fabricated in this country (unlike the original curved track which was fabricated in Holland) and that the work should take about two weeks. 

The other problem with the stairlift is being able to control it in a ‘hands-free’ fashion and so far the solution they’ve come up with is to use several switches; one mounted on the stairlift itself and one mounted on the banisters. I’m still not convinced about this and have concerns regarding the fact that the switches are battery operated and send a wireless signal to the stairlift. I’m worried about the battery dying whilst I’m using the stairlift and then being stranded. This one still needs some further work. 

I spent a very enjoyable afternoon with Kim, the newest member to my care team. It was all a bit unexpected really, I got a phone call from the care agency early this morning when I was still in bed and unable to pick up the phone (although I could hear the message being left on the answerphone) to say that Kim was available this afternoon and would I like to spend some of my social hours with her? Well I’ve been stuck indoors so much lately that I’m starting to get cabin fever and the weather has been so nice this week that I’ve really felt frustrated that I cannot go anywhere on my own. Needless to say I jumped at the opportunity so just after midday Kim turned up and bundled me and the wheelchair into her car and we set off for Alresford, the picturesque Georgian town about 30 minutes away. After parking the car and seeking directions from some local market traders we headed for the Millennium Trail, a series of footpaths around the town, part of which is a very delightful riverside walk with overhanging trees providing some nice shady areas. We marvelled at the clarity of the water and the size of some of the fish, and enjoyed seeing so many ducks and swans gracefully swimming by. It really was such a peaceful and secluded area and yet so close to the town’s high Street. Further along the riverside walk we encountered Fulling Mill, a timber framed thatched cottage straddling the river Alre which looked like something out of a jigsaw puzzle. We both stood there admiring it for some time envious of its location whilst enjoying the lovely afternoon sun. Unfortunately (although not for me, he he) the walk ended with a rather steep incline back towards where we had parked the car and I could hear poor Kim breathing rather hard. Strange really, because I didn’t feel worn out all, in fact I could have done it all again :-). 

On the way back home we stopped off at The Grange, near Northington, a partially restored stately home surrounded by farm fields and a river which has now been taken over by an opera company but is still open to the public. Not somewhere you would particularly want to stay very long as you can only walk around the exterior but quite nice to see if you like architecture and just want to enjoy a peaceful break from driving for a while. Anyway it capped off a very pleasant afternoon. The weather had been extremely kind and I had really enjoyed Kim’s company. This had been the first time that we had spent some social hours together and already I was looking forward to the next one which hopefully won’t be far off. I have a very good feeling about her and I think she’s going to become an invaluable member of my care team. Thank you Kim for taking good care of me. 

I had a nice little surprised today when I checked my e-mail, there was a message from Ruth, my MND Association Visitor who had left England to live in the States with her family. I really hadn’t been expecting it and I felt touched that I should still be remembered. But such is the power of modern communications that in this day and age there is no real reason for people to lose contact. Anyway it was really nice to hear from you Ruth and I’m glad that you and your family are settling in and making new friends. Good luck with your US driving test and a hope the move to your permanent new home goes smoothly for you. 

12th September 2009 – A visit to Eastrop Park

I’ve been a bit spoilt this week for trips out of the house. This morning after breakfast Francesca took me to Estrop Park for a walk around the boating lake and park area. Well to be more accurate she was walking and I was taking it easy in my wheelchair which is becoming a regular occurrence as my legs weaken. It was a little chilly to start with but gradually warmed up. We stopped by the lake used for model boats and watched a father and his young son playing with their radio controlled trawler. Suddenly I got an attack of the giggles as I imagined what fun it would be if the lake was full of model boats whilst proud parents and their children stood by the water’s age with control units in their hand guiding their boats around the lake. Suddenly the boats begin to disappear below the water one by one whilst parents and children look on with puzzled expressions. Suddenly up pops a periscope followed by the familiar outline of a World War II submarine. And there’s me sitting in my wheelchair with a radio control unit in my hand and a wicked grin on my face saying ‘next victim, please’. I know, I’m bad, he he smile_devil

Mark
 

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Heading for Autumn (September) – part 1

Calendar entries highlighted in yellow

1st September 2009 – New registration day

My brother and his wife called round at midday proudly showing off their brand-new car that they had just been and collected from the garage. It’s a Mazda 3 and looks superb in its high gloss black finish. I’m already a big fan of it not just because of the way it looks or its high specification, but because it has height adjustable seats which makes it a lot easier for me to get out of. As I walked around the car studying all the nice little design touches and admiring the well laid out interior I felt a pang of regret that I could no longer drive such a car myself. Still, at least I can enjoy being a passenger.

Proud owner...and envious brother 🙂 (photo courtesy of Chery)

Chery getting comfortable in ‘her’ car! (photo courtesy of Chery)

2nd September 2009 – More tests

I spent the day with my aunt and uncle who had kindly offered to take me to the Southampton Hospital for some respiratory tests in the afternoon. This time I decided to take my wheelchair with me as I was not feeling too strong today and wanted the reassurance of having somewhere to sit in case the walk from the disabled car park and then through the hospital to the first floor proved too tiring for me. We spent half the afternoon in the Respiratory Centre but most of that was spent in the waiting room either waiting for tests or waiting for the doctor. Despite last time hinting that I would have a full set of tests the next time I came I was surprised when I was subjected to only a few of them. At least I didn’t have to have an arterial blood/gas test which can be a bit painful. Anyway the good news is that there does not appear to be any further deterioration in my respiratory muscles compared to last time. I think this surprised even the doctor a little especially after the dramatic fall the previous time. Therefore she feels that there is no need for any form of intervention at this time and after discussion we’ve agreed that I will only contact her if my situation changes i.e. when I start to experience problems sleeping. We talked a little about non-invasive ventilation and I asked her if before we went down that road could we try altering my sleep position so that my head and chest are propped up a little as I understand that it is far more difficult to breathe when lying horizontally compared to standing up. She agreed and said that that is all that some people require to improve their breathing. So this is what I shall do as I am in no rush to have strangers sleep in my house each night which is what would be required as a condition of the hospital providing the ventilation equipment. As a personal target of my own I want to get through the remainder of this year breathing unassisted.

The other subject we touched on was PEG. I’m consciously aware that there is a narrowing window of time for this procedure to be safely performed should I wish it and today I wanted to seek the advice of a respiratory specialist to see how much longer I had to make up my mind. The answer, that I need to make the choice now, doesn’t really come as a surprise at all as my breathing is already less than 50% of predicted. I explained my dilemma and said that so far I had exhibited no bulbar symptoms i.e. I could still talk perfectly normal and had no problems swallowing food. Considering all the weakening in my breathing muscles that I was experiencing, it seemed at least to a layperson like me that I was more likely to suffer breathing issues before speech or swallowing became a problem. I was therefore leaning quite heavily in the direction of saying no to having PEG fitted as for the foreseeable future it would be something that would have to be constantly maintained each day and yet never used. Having a PEG is a way of delivering food (or medication) if you cannot take it orally, but it is still not a guarantee that you will not lose weight or be prevented from choking. In fact it adds the additional complications of possible infection. I just feel that having a PEG fitted and seeing a plastic tube dangle from my chest would make me feel like I have reached a certain milestone in disease progression despite showing no signs of deterioration in my appetite or ability to eat. From what I could tell the doctor seemed to agree with my train of thought and could tell just from talking to me that my speech was not affected and indeed may never be or at least not until the late stages by which time I’ll have other things to worry about. At the end of the day it’s a personal decision and to some degree it is a gamble. I’m gambling that I’ll suffer respiratory problems before the disease progresses to my throat. But then again all life is to some degree a gamble and it’s important to realise that all the interventions being offered do nothing to alter the progression of the disease. They are only designed to manage the symptoms and to make life more comfortable. The outcome will always be the same.

3rd September 2009 – It’s here! / A new hope

Finally after what has seemed like an endless wait my stairlift has arrived. I was expecting the installation to be a two-man job but in fact just one man, Stewart, turned up and fitted it all by himself in about four hours. I was expecting there to be a lot of noise and dust flying around but he made remarkably little noise and was very clean. The installation has turned out a lot better than I had imagined it to be and blends in quite well thanks to a seat colour that matches my carpet and a curved track that is a fairly close colour match to the walls. The big surprise is that I have not had to give up the decorative hand rail that follows the stairs from bottom to top. Some months ago when I was at the quotation stage I was being told by everyone that it would have to be removed because there was insufficient clearance and yet somehow they’ve managed to design it to work with in place. Splendid!

Now at this stage I’d like to say that I’m now the happy owner of a stairlift that works beautifully and I no longer have to worry about using the stairs. Unfortunately when he was finishing up and starting to demonstrate it to me we hit a major problem. None of his installation instructions mentioned the fact that I cannot move my arms and therefore required a hands-free solution as previously discussed back in June. The chair had a standard joystick mounted in the left arm which I would neither be able to reach or operate due to paralysis and weakness. There was supposed to be some kind of foot operated switch so that I would just need to sit in the chair and press and hold the switch with my foot. None of this equipment had been supplied so the fitter left me with instructions to contact my OT whilst he promised that he would raise the issue with his boss.

So a bit of a disappointment really. They’ve not supplied what we asked for and there is no way that I can physically operate the stairlift in its current state. There are call buttons at the top and bottom of the stairs but these would only be of use when summoning the chair. For the stairlift to work you need to be applying constant pressure to the switch which of course is of no use if you’re sitting in the chair and the switch is mounted on the wall. So at the moment I’m actually worse off than I started because I now have a curved track occupying the widest part of each stair tread forcing me to walk up the stairs using the narrower end of each stair tread. I’ll have to be extra careful when using the stairs now.

I spoke to Marion, my OT, this evening to put her in the picture. She’s been in touch with the company fitting the stairlift and has arranged for them to call me tomorrow as a matter of urgency.

I had a phone call this morning from the home care manager of my care agency. She was calling with the good news that a carer that I had identified as being ideal to join my care package has agreed and was prepared to commit to 3 evenings a week plus would be willing to step in and cover for other people in my team as and when needed. So from next week Kim will be put in as the default carer for three weekday evenings every week. Kim brings with her years of experience (unlike some of the people who have been sent to me lately whose experience is measured literally in weeks) and has been with the agency practically since they started. Although she’s not previously cared for somebody with MND she has plenty of experience with MS, another complex disease. Kim is another one of those people like Alison and Francesca who immediately impressed me with her thoughtfulness, attention to detail and pleasant personality. Unlike some of the people I’ve had recently who show little initiative and hover around when I’m eating instead of finding things to do, Kim is constantly looking to see what needs doing. She utilises her time much more efficiently and she certainly comes across as far more professional. So fingers crossed things might actually be starting to improve a little after a bumpy few months.

4th September 2009 – More stairlift problems surface

Tim, a Liftech engineer called early this morning to take a look at the problems I was experiencing in being able to control the stairlift in a ‘hands-free’ fashion. But instead of bringing a rocker switch with him, which is what I thought he was going to do, he removed one of the call switches from the wall and proceeded to experiment by placing it in different positions on the footplate whilst I was sitting in the chair. Trying to position my feet so that they could activate and then hold down the switch for the duration of travel proved difficult. We then experimented on placing the switch vertically behind the footplate so that I could activate it with the heel of my foot. This seemed like an improvement until we discovered that the switch prevented us from raising the footplate when not in use so that it wasn’t a trip hazard for other people using the staircase.

However, an even more worrying concern surfaced when we tested the stairlift and I found that it stopped short of the landing. Even when the chair had pivoted round it still did not allow me to place both feet firmly on the landing. I’m finding these days that I need to brace my legs further apart when standing up to give myself some stability. Trouble is when I try to do this at the top of the stairs when seated in the chair I find that my right foot is protruding halfway off the landing. At the moment I would have no confidence in trying to stand up and lean forward as I know that as soon as I place weight on my right leg it could slip off the edge of the stair tread. With the chair hanging over the stairwell it just doesn’t feel safe. I’d be even less inclined to reverse back into it to sit down knowing that the chair is already in the stairwell.

Marion is out for a few days now so another OT, Claire, called round later in the morning to see and understand the problems for herself. She’s booked a meeting for late next week and arranged for Marion as well as members of Liftech and Freelift to call round my house to discuss the problems. I’m really quite concerned about all this now as it’s beginning to look like they have not fully understood the problems I’m facing or engineered a suitable solution. Even if I had somebody present to operate the stairlift using the call buttons I would still have problems getting off at the top because the stairlift does not deposit me on top of the landing. Interestingly one of the pictures in the brochure clearly shows the stairlift on the landing at the top of the stairs not adjacent to it. In my case there is a limit on how much further the track could extend onto the landing before it obscures a doorway. It will be very interesting to see what they say next week. In the meantime I’ll have to be very careful on how I use the stairs and just hope that my legs continue to hold out.

Mark

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The month of May – part 5

Calendar entries highlighted in yellow

23rd May – Return to Black Dam!

Woke up to a gorgeous clear blue sky – not a single cloud in sight! With my personal care and breakfast out of the way, Francesca and I headed off to Black Dam once again. Although it’s the third time this month I’ve yet to grow tired of this tranquil little part of town that I’ve overlooked for so long. This time I got my trainee staff blog photographer to bring along my sturdy tripod and infra-red remote trigger in the hope that it might make it a bit easier to get some pictures of us together. As it turned out the remote trigger proved to be rather temperamental but we persevered and got there in the end. Technology! 🙄

There were lots of ducks and geese around this week and even Mr & Mrs Swan put in an appearance. I walked along the water’s edge under the shade of the weeping willows watching Francesca trying to entice the birds out of the water with pieces of bread. At one point we saw a whole brace of ducks swimming towards us, each one leaving a V shaped wake behind it. The pattern would have made a good picture. Anyway, here’s a few shots of Francesca and I just goofing around and having fun with the camera. Nothing too serious today, just enjoying the moment.

Lean on me! Francesca and I at Black Dam

Big smiles. Francesca and I at Black Dam

Happy! Francesca and I at Black Dam

Sneaky! Francesca and I at Black Dam

Is it on? Francesca and I at Black Dam

Where did those antlers come from? Francesca and I at Black Dam

Laughs. Francesca and I at Black Dam

Oh, and before I forget, thank you Francesca for writing out my nephew’s birthday card. I couldn’t have done it without you – literally. It’s so frustrating now not being able to write out family greetings cards for that personal touch.

25th May – More fun with the stairs

I’m not having a good time with the stairs lately. After last week’s fall I’ve had a hard time rebuilding my confidence and using the stairs has become very stressful. Yesterday when looking around my niece & nephew’s new home I was almost paralysed with fear coming down the straight, steep & narrow staircase. I was okay going up (albeit slowly) but as soon as I tried making my way down my balance seemed to alter, my legs felt weaker and my confidence left me. I ended up coming down the stairs sandwiched between my brother and sister-in-law with my hands resting on the banister.

Today when I woke up it took multiple attempts before I found the confidence to step off the landing and walk downstairs. Later in the day I got trapped upstairs again as my legs just felt too unreliable to attempt the descent and my arms are completely useless and cannot be relied on should I start to fall. Eventually I decided to try something different by sitting on my bottom and coming down the stairs one step at a time. So I held onto the banister rail that overhangs the stairwell and with my back against the wall gingerly slid down so that I was on the floor. No sooner had I done this when I realised that if this failed I would be trapped on the floor until my carer arrived. I have very little upper body strength now so it took a lot of wriggling along the carpet, whilst trying to ensure that my arms didn’t get trapped, before I was positioned face down with my legs pointing down the stairs. I then had to spin myself round and slowly descend on my bottom one step at a time in a completely undignified way until I was about three steps from the floor. At this height I was able to raise myself up albeit with trembling legs. Phew, what a nightmare! I think the staircase is an accident waiting to happen. I really wish I had the stairlift in place already but I’m still waiting for one more quote later this week. The other thing I wish I had was a downstairs toilet. That would make life so much easier for me as I would only need to use the stairs at the beginning and end of the day. I think every 2-story house should have one.

I tried to get on and edit some more digital photos from my recent excursions, but trying to simultaneously use the keyboard and mouse (required for certain editing tools) is proving frustratingly difficult. For all the time I spent on it this afternoon I still only managed to complete five photos.

Half way through the evening, shortly before I planned to sit down and watch some TV, I got stuck upstairs again on a visit to the bathroom. After the climb up my legs felt very weak and as soon as I attempted to descend my balance became unpredictable. I ended up having a very early night!

26th May – Taking it easy

Thanks to being stranded upstairs last night I ended up spending twelve hours in bed, haha. Amazingly I was able to sleep through most of it, although I did get confused at one point when I heard car doors slamming – I thought someone was off to work but it was someone arriving home at midnight! I’d only been asleep three hours! When morning finally arrived I didn’t attempt going down stairs until Ann arrived by which time my legs felt a bit more reliable. But I’m so wary of my legs now that I found myself trying to arrange my trips to the bathroom around the times when one of my carers was around. For the rest of the day I was sitting in one chair or another as I’ve noticed recently that my upper leg muscles are starting to hurt a little when I get up. It’s actually quite frightening the speed at which my legs are weakening now and I’m starting to grow concerned about the time I’m here at home on my own. Having carers around at least gives me some peace of mind.

Looking out the patio windows as I type away on my laptop and seeing the sun shining down from a clear blue sky brings a certain frustration and sadness. Not so many weeks ago I was at least able to go for short walks along the field behind the house but now I daren’t even attempt that. And I would give so much to be able to get on my bike and go cycling along the country lanes again. This is a very cruel disease.

28th May – More measuring up / An afternoon with Alison

‘Gavin the Gardener’ spent most of the morning tidying up my back garden and it really is starting to look a lot better. I’m glad I’ve been able to find such a hard working and reliable gardener. At least that’s one thing I don’t have to worry about anymore.

I had Paul from Bentley Mobility call at lunchtime to measure up and quote for a stairlift. This is the third and final quotation. Because of the way my legs are going lately I’m really keen to get things moving now. Delivery times with this company seem very good – if true. I’m being told that Stannah are currently able to offer an express service on curved track stairlifts and can deliver in 2 weeks. Add another week for the photographic survey and drawings and where still only looking at 3 weeks. Fingers crossed I’m hoping to be in a position next week to place an order.

Here’s a few scans from the brochure.

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

I had a pleasant afternoon with Alison using up some of this week’s social hours. She’d brought along a super-lightweight wheelchair that had been loaned by a friend just in case the walking proved too much. Although I had a little sit in it to see how it felt I was determined to get through the remainder of this month under my own steam. I had only been walking around the town centre for about ten or so minutes before I began to question the wisdom of my actions. My legs soon started to feel weak under the strain of supporting me and before heading back to the car I took a few minutes out to rest on a bench in the shopping mall. Clearly the days of me hoping on a bus and wandering around town by myself are over and in future I’ll just have to swallow my pride and accept being pushed around. The rest of the afternoon was less stressful and far more enjoyable as all I had to do was sit in Alison’s car whilst we took a pleasant drive down to Winchester. It was so nice just to sit there with the windows open and being buffeted by the warm air. Thank you, Alison, for everything this afternoon.

29th May – Spoilt by my carers – yet again!

Want another example of how much my carers spoil me? I have three flower tubs at the front of the house that through neglect had become infested with weeds. Ann had been to a garden centre yesterday and bought me a whole range of bedding plants so after she’d finished my care she got stuck into a spot of container gardening. By the time she had finished I had three tubs full of colourful plants that make the front of the house look so much nicer. How kind is that? I really am lucky to have such wonderful people looking after me.

Tried to go for a short walk with Francesca at lunchtime but didn’t get far before my legs started to tire and I felt it prudent to turn back and head for the safety of home. I never thought I’d ever hear myself say this but ‘roll on when I get my own wheelchair’! Well, it’s either that or spend my remaining days housebound and that is simply not an option. I want to continue going out, getting fresh air and having a change of scenery. To think, this time last year I was able to walk anywhere I wanted, and the year before I was cycling all over north Hampshire. What a horrible disease this is turning into as yet another of the things that made life enjoyable for me sails into the history book.

30th May – Weekly treat time again!

 

Sun is shinin’ in the sky,

There ain’t a cloud in sight

It’s stopped rainin’

Everybody’s in a play

And don’t you know

It’s a beautiful new day.

 

Runnin’ down the avenue,(Pant, Pant, Pant)

See how the sun shines brightly

In the city on the streets

Where once was pity,

Mr. Blue Sky is living here today.

 

(Chorus:)

Mr. Blue Sky, please tell us why,

You had to hide away

For so long where did we go wrong.

 

Hey there Mr. Blue

We’re so pleased to be with you

Look around see what you do,

Everybody smiles at you.

 

Mr Blue Sky, Electric Light Orchestra (Jeff Lynne), 1978

 

It’s Saturday, the sun is shining, there’s a clear blue sky, I’ve got the camera loaded, Francesca has the car parked on the driveway, and where headed off to Black Dam once again to supplement the birds weekly food intake. At this rate there are going to be some very obese birds waddling around soon. Don’t blame me guys n gals if you can’t take off!

I’ve been lucky with the Saturdays this month and have been able to get out for most of them. Because of time constraints we are a bit limited how far we can travel so we’re lucky this is so close. Didn’t take too many photos this time but still enjoyed watching the birds antics and being able to relax in the lovely warm weather. My legs were not too bad this morning and I was able to walk around without too much bother although it was reassuring to have benches scattered about. Thank you, Francesca, I really enjoyed this morning.

At Black Dam

At Black Dam

Francesca and I at Black Dam

Alison very kindly dropped by half way through the afternoon to make sure I had plenty of cold drinks on hand as it’s getting more difficult to even get a drink of water from the tap by myself, and on a hot day like today I drink a lot more. This act of kindness is yet another example of how thoughtful and generous with their time my carers are. It’s not even Alison’s turn to provide care for me and yet she still goes out of her way to do so. That’s dedication. Thank you so much, Alison.

From a lovely morning to a frustrating afternoon stuck in the house. I know I should be grateful that I at least managed to get out for an hour this morning (and I am of course), but looking out the patio windows at that beautiful weather and I would have given anything to be able to jump on my bike and go cycling down the country lanes, or simply go walking over to Manydown Farm. Instead I sat in my glide about chair near the patio window and soaked up the heat of the sun like a lizard basking on a rock. We all take our mobility for granted until it starts to fail us. I was just the same and it is so heartbreaking seeing it wither away.

Mark

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The month of May – part 4

Calendar entries highlighted in yellow

19th May – The day after / The W word

After all the stress of yesterday it was perhaps no surprise that I got very little sleep and yet surprisingly I managed to get through the day without feeling too tired. I was very apprehensive about using the stairs this morning but Ann, my lovely carer who looks after me most weekday mornings, offered a lot of support and helped me get downstairs for breakfast. I must admit it felt a lot more reassuring having someone close at hand as I stepped off the landing and made my way downstairs. For an able bodied person it is perhaps difficult to imagine what all the fuss is about. But when you are faced with the combination of weak legs, reduced upper body strength, and arms that are paralysing and can’t move far from your side, it can make this ‘simple’ task extremely difficult. In fact it’s not a simple task at all; it’s just that the human body normally works so well in processing vast amounts of information at one time and is capable of multi-tasking that it just seems that way. This is why we’ve not yet managed to create human-like robotic systems with the same ability. As the muscles throughout my body weaken I’m gradually losing the ability to make all those subtle subconscious alterations that help maintain my balance.

I made a call to Marion, my OT, this morning to put her in the picture and to emphasis the urgency in getting things done regarding access to the upstairs. At the moment I’m still waiting on two more companies to provide quotes and we’ve still to determine financing arrangements although she’s told me that a Grant Officer will be calling on me tomorrow. We also discussed my weakening legs in general and I have expressed concern about my ability to stand up and walk for more than about 15-20 minutes. I told her that I was starting to give serious thought to buying a wheelchair for when I go out for days as it would eliminate the stress of constantly looking around for somewhere to sit. Yes the dreaded W word is starting to appear on my radar and it’s time to start facing the realities of my situation and accept it no matter how much I would wish otherwise. Sooner or later MND deprives you of the ability to walk and sad to say but the nerves that ‘talk’ to the muscles in my legs are slowly dying. Realistically I don’t expect to be doing much walking by the end of the year so I need to start making plans now. Marion is going to get the ball rolling and sort out an application for me to have an assessment with the Wheelchair Service.

We have a Hearing & Mobility shop not too far from where I live so as part of my afternoon out (mainly to get my haircut) Alison and I took a look inside and tried out a few wheelchairs (I know, depressing!) that would easily fold and could be carried around in a car. I’m not at the stage where I need to live in one but want the reassurance of having one around for when I go out for days as there is no way I can stand for that long. It’s a strange feeling sitting in one for the first time knowing that one day this will be the only way I can get about. Nevertheless we were determined to make the best of it and tried to have some fun as Alison propelled me at breakneck speed around the shop. I came away with some idea of what I found suitable, their cost and availability.

I’ve been trying to rebuild my (now fragile) confidence in using the staircase. My legs feel very weak now and climbing stairs places a further load on them. I know from my experiences with my arms how unpredictable they can be so I’m trying to minimise the risks by only using the stairs when I have to.

I had the folks from Possum phone me this evening to discuss options for linking a phone to the Primo! environmental control unit. I’ve been experiencing problems using my cordless phones because my fingers cannot always move properly or apply sufficient pressure. From what I discovered this evening though it sounds like there are some limitations which would make it unsuitable for my current needs e.g. linking only one handset. Need to look at other options.

20th May – Measuring up again! / The Grant Officer arrives

I had Stewart from Liftech arrive this morning to measure up and provide quotations for a stairlift and a through floor lift. At this stage of the disease a stairlift would be sufficient but eventually my legs will become useless and if I end up dependent on a wheelchair then it would not be practical to attempt a transfer to a stairlift. A through floor lift would be big enough to take a wheelchair but they are rather large and intrusive especially when you allow for door opening clearance. In fact it proved difficult to find a suitable location. The only viable one appeared to be having the lift installed in the garage which is directly below the third bedroom. But the lift and all the clearance would render the room useless for anything else.

Here’s a few scans from the stairlift brochure.

Page scan from the Freelift brochure

Page scan from the Freelift brochure

Page scan from the Freelift brochure

Page scan from the Freelift brochure

Page scan from the Freelift brochure

…And the through floor lift brochure.

Page scan from the Terry Harmony Homelift brochure

Page scan from the Terry Harmony Homelift brochure

Page scan from the Terry Harmony Homelift brochure

I had a visit from Marion (my Occupational Therapist) and Cheryl (the Grant Officer) this afternoon. They had come to do a test of resources (financial means test) as a first step in applying for a Disabled Facilities Grant, and also to discuss what adaptations to the property would be required. I must admit from previous experiences with anything that is means tested I always seem to fail so I went into this discussion with low expectations. Strangely they only seem interested in income and savings not outgoings, oh and I had to provide proof of ownership of the property too. The DFG grant provides up to £30k towards adaptations. The means test will determine how much if anything I will have to contribute.

We looked at the adaptations required and the various options open to us. One scenario involved installing a stairlift now and converting the bathroom to a wet room with a through floor lift to follow at a later stage. Another scenario considered converting the garage to a combined wet room and bedroom but was ultimately rejected because of size limitations. The solution I favoured most was building an extension on the back of the house that would incorporate both the wet room and a bedroom. I was a bit surprised to find them so amenable to the idea but it would certainly make life a lot easier as I could effectively live on the ground floor and avoid all the hassle of lifts. It would also be more suitable for future arrangements if one day I should need a live-in carer.

Got a phone call from Cheryl late in the afternoon to notify me of what my contribution would be (assuming I get a grant).

I’ve noticed recently that I’m having difficulty shrugging my shoulders. This is making it even harder to use my arms – or get comfortable. I’m becoming locked inside my own body, a truly frightening thought.

21st May – Advanced Directive

Lara, my palliative care doctor from St Michael’s Hospice dropped in this morning for an important discussion. I had asked for her help in how I could set up an Advanced Directive (also known as a Living Will or an Advanced Decision to Refuse Treatment). It’s one of those things that I don’t need right now but just want to get in place whilst I have the energy and determination to pursue it. An Advanced Directive will allow me some control over how I’ll be treated should various scenarios present themselves. Although it cannot be used to demand a particular treatment it can at least specify those that you I will not accept. The Advanced Directive only comes into force if I become incapacitated and unable to communicate my wishes. At all other times my own verbal instructions (or other forms of communication should I lose the ability to talk) take precedence. The document is legally binding but does not need to go through a solicitor, only the medical profession.

The Motor Neurone Disease Association have produced a very good information pack and this provided the basis of our discussion. We talked about such things as cardio-pulmonary resuscitation, assisted ventilation, artificial feeding, use of antibiotics, and where I would wish to be treated. Lara explained to me the ramifications of saying yes or no to each of these scenarios so that I would understand their implications and be able to make an informed decision. Heavy stuff but at least it gave me the feeling of being in control. Once I’ve written it out (or more likely have someone else do that for me) and had it witnessed and signed off by the medical profession then copies will be circulated to the various parties concerned such as my GP, hospital, hospice etc. It’s important to bear in mind that an Advanced Directive can be changed at any time and having discussed it already with my doctor we have agreed to set regular review dates so that I have the opportunity to amend it as my circumstances change.

‘Gavin the Gardener’ has returned! This week he’s tackled some of the weed infested borders that used to look so neat and tidy with their covering of pine chip bark. Now weeds have exploited every gap and dormant seeds have broken through so that you’d be hard pressed to even see the borders although by the time Gavin had finished this morning they looked noticeably tidier.

I received my latest piece of disability equipment this morning – a raised toilet seat! Because my leg muscles are weakening I’m finding it increasingly difficult to actually get up from sitting on the loo so Marion (my OT from Adult Services) arranged for me to have a clip on toilet seat that increases the height by about 4 inches. This has made a big difference. Another little problem solved.

I spent the remainder of the afternoon working on my old desktop computer editing some of the photos that Francesca had taken on our last trip over to Black Dam so that I could use them in a blog post. I struggled badly trying to use the mouse and even simple photo edits became frustratingly slow. Normally when I use my laptop computer I just have a track pad to contend with but this is not the most suitable input device when using software to edit photos.

22nd May – Bits n pieces

Had a bit of a shock this morning when I woke up to find a stranger in my bedroom. Ann, my usual carer for this time of the week had gone to a funeral and had told me that Ria would be covering. But it wasn’t Ria standing over my bed but a complete stranger. I was none too happy that the care agency had not even bothered to notify me in advance and it felt distinctly uncomfortable having someone I’d not met before do my personal care. This is the first time my care package had failed this year, and by that I mean that none of my existing care team was able to cover the call.

Cheryl (the Grant Officer who called on Wednesday) dropped in this morning with some paperwork for signing so that we can get the application for a Disabled Facilities Grant Underway. I had major difficulties signing my own name. I just can’t seem to hold a pen anymore. I found myself continually apologising for the state of my writing which is now atrocious. The good news is that we are going ahead with the proposal to build an extension at the back of the house that will incorporate a bedroom and bathroom. I’m so relieved about this as it will save butchering the garage, 3rd bedroom and bathroom, and will avoid the need to go upstairs. However, this won’t happen overnight and will take six months or more (assuming I actually get the grant). Because of the progressive nature of the disease I have asked Cheryl if there is anything we can do to fast track it. In the meantime a separate application will go through for a stairlift as an interim solution to getting upstairs. On hindsight I should of applied for this grant at the start of the year. Oh well, live and learn!

Phoned up a company called CommuniCare to enquire about a pendant alarm in case I fall again and need help. I’m starting to feel a bit vulnerable and want to explore what options there are for calling for help as I am on my own most of the time.

Richard from Remap called this afternoon with another little home grown contraption that will make life easier. This time it’s a foot pedal designed to make flushing the toilet easier as I no longer have the strength in my arms to push the handle. I lost that ability some time ago and have been using my foot to kick it but balancing on one leg ‘stork fashion’ is now too risky.

Mark

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The month of May – part 2

Calendar entries highlighted in yellow

10th May – Photo shoot – take 2! / Time on my hand?

We’ve had gorgeous weather again today and my newly appointed staff blog photographer, err I mean Francesca, took pity on me treated me to another trip down to Black Dam to feed the birds and to prove that last week’s photos were no fluke. There was hardly a bird in sight when we arrived but as soon as Francesca began dishing out the bread in muck spreader-like fashion, birds appeared from all directions to ambush us. One in particular was brave enough to actually take bread from Francesca’s hand. I really wish I could have taken some photos myself to show you but at least I have some lovely memories of the occasion and Francesca herself managed to get some nice pictures once again of us both which you can see for yourselves below. Thank you again Francesca and for all the little things you did for me at the weekend (like changing the batteries on my wireless keyboard and connecting/disconnecting USB hard disks so I could back up my data). They may all seem like trivial things but mean a great deal to me and help keep me ‘operational’.

Francesca and I at Black Dam

Still standing! At Black Dam

At Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

I spent the afternoon editing some of last week’s digital photos ready for posting on this blog. I normally enjoy playing around manipulating images but that pleasure was mixed with a lot of frustration this time round as I struggled to control the mouse. At times all I could do was stare at my immovable arm waiting for some energy to flow back into it. It was painfully slow getting anything done today but persistence won out and I’ve finished the first batch. I’m quite pleased with them too.

Want another example of how well my carers look after me? Francesca dropped in on her way home this evening to deliver a surprise gift from her shopping trip – a foam pillow that will provide better comfort and support at mealtimes when I’m sitting in my wheeled chair. How thoughtful and kind is that?

I’ve just got through a whole week of not wearing a wrist watch which seems a very strange thing to me. Putting a watch on in the morning had become part of my daily ritual but lately even something so simple as a watch has not been without its difficulties. I have a very old Seiko watch that my dad got me around 30 years ago which I’ve hung onto not just because it’s a good looking watch but also for sentimental reasons. It is a purely mechanical watch with an automatic winding mechanism that depends on wrist and arm movements to keep itself working. Trouble is of course my arms don’t move much during the day so the watch soon stops working. That coupled with the fact that I’ve been struggling to release the clasp in the evening has led me to try and get by without it, after all the house has plenty of clocks scattered around (all reading different thanks to each room being in a different time zone 🙂 ). Looks like my Seiko has become just another relic of a life I used to lead.

11th May – A review of my care package

It’s been quite a day! I’m writing this late in the evening and I’ve still got a bit of a lingering headache from midday. Whether that’s from a weakened respiratory system (CO2 build up) or just all the stress lately I don’t know. But I do know I’ll be glad to hit the hay soon!

I’m trying to gradually transition into a higher level of personal care, partly to minimise the shock and the feeling of losing control, and partly because quite frankly all my strength is slowly seeping away so I need to preserve what I have left to help get me through the day. Just trying to get up and dressed has become so exhausting lately that I have started to welcome the idea of help with it. Yesterday for example I wasted so much precious time and energy just trying to put a jumper on whereas today with help my shirt was on in moments. My days of dressing myself are numbered…

Alison (my carer) offered to take me grocery shopping today. Usually it’s my brother, Jason, who is kind enough to do my weekly shopping, but Alison thought it would be a good idea to have a look around the supermarket myself and try some new things as my diet has become a bit samey lately. I must admit though I was a bit apprehensive about going shopping with a woman and was not too sure if my debit card could stand the shock, haha! But it was okay and my card is resting comfortably now having been given an infusion of funds 🙂 Although I enjoyed the chance to get out and buy some different things I must say that walking around all those aisles left my legs feeling weak. By the time we reached the checkout it was time to take the weight off my legs so I left Alison to pack whilst I sat on one of the nearby rest chairs.

At midday I was joined by Rachel (my Social Care manager), Debbie (Homecare manager for the care agency I’m with) and Alison (one of my main carers) who had all convened at my house for a review of my care package. I tend to have these reviews fairly frequently because of the progressive nature of the disease and Rachel’s desire to keep on top of things. This particular one came about because of all the difficulties I’m now starting to experience and also to discuss the implications of my recent respiratory tests down at Southampton. Since last October I’ve been chugging along on 14 hours of home care a week which initially was about right for my needs as well as meeting my desire to maintain as much independence as possible. In all that time the only change has been the addition of a couple of hours of social time which allows me to get out of the house in the company of one of my carers. But the additional personal care I now need has meant that my carers are struggling to fit everything within the allotted time. In fact to be honest they often end up staying longer. So today we’ve been discussing the tasks that need to be performed so that Rachel can build a case that she can take to the NHS for funding approval. We’re also going to try and get funding for a short midday call, something I don’t have at the moment. Knowing Rachel I’m sure I’ll hear one way or the other fairly quickly.

We also discussed the implications of needing NIV (Non-Invasive Ventilation) at some point in the future and how the care agency would handle that scenario (remember I mentioned a couple of posts ago that a condition of having the equipment is that there is someone on hand trained in its use at all times). Should it come to that then a sleep-in call service could be provided. This is different to a night call in that the carer will also be asleep but is on hand if an emergency arises. I believe though that with this service the carer can only be woken a set number of times during the night.

As my care package increases in complexity and resources it will become more difficult to administer. There will come a point when the amount of hours needed to support me in my own home will grow so great that there will be a strong argument to replace the team of carers I have with a live-in carer. I’m very happy with the people I have and have grown to know them very well and they in turn know what I like. I would hate to lose any of them but maybe one day when I am in a far worse condition it may sensibly be the only option because I would not be safe on my own. Let’s hope that that time is still some way away.

12th May – Measuring up!

I had Kevin from Liftability call this afternoon to measure up and quote for a stairlift. Two years ago the thought of me needing one of these would have seemed ludicrous but now it’s a matter of inevitability. At this moment in time I can still navigate the stairs but the signs are already showing that one day this may not be so. As with all things related to MND it helps to think proactively (I just don’t always take my own advice!).

I always thought that stairlifts were only suitable for straight staircases but not anymore apparently. They can fit them to stairs with corners and even to spiral staircases. My particular staircase has two 90 degree bends so I would need a curved track stairlift which is considerably more expensive then a straight one and because of their bespoke nature have little resale value. Apparently my stairs are nice and wide so installation would be relatively easy and could be done in about half a day. Liftability, who don’t actually manufacture the stairlifts, would recommend a Stannah on a duel track with a powered pivoting seat for my situation. Measurements were taken of my staircase but I’ve been told that if Liftability get the order then they will need to come back and do a photographic survey before sending the details to Stannah for manufacture. Lead time is about 4-6 weeks.

Here’s a few scans from the brochure.

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

13th May – Training day / Computer woes

I’ve given up on trying to dress myself. I spent ages yesterday struggling with socks and underwear whilst short-sleeved shirts have completely defeated me. By the time I have most of my clothes on I’m exhausted and the day hasn’t even begun. I took the easy route today and waited for Ann to arrive who then washed, shaved and dressed me. At least I managed to preserve more of my precious energy.

I had Margaret, the community physiotherapist call round midday to instruct all my carers in some techniques for exercising my arms. It was the first time Alison, Francesca & Ann had met up together although as time goes on I’m sure they’ll be working on double-ups when lifting and handling me becomes necessary. The session went very well and I’m afraid that I couldn’t let the moment pass without a stream of comments designed to embarrass or make my poor long suffering carers laugh. As Alison said, there’s nothing wrong with the mouth! Under Margaret’s supervision each of my carers were able to practise lifting and positioning my arms in various ways that will hopefully maintain the full range of motion and suppleness of the muscle tissue. They were also shown some techniques for combating cramp in my feet which I occasionally get and which can be quite painful.

My hands continue to give me problems. Today I had difficulty just using the cordless phone to take a call. I couldn’t even find the strength to press the buttons to pick up the receiver and switch the hands free speaker phone on. And throughout the afternoon my typing speed dropped considerably as my fingers tired and became unresponsive. By the time Alison arrived for my evening call my arms too had grown very tired and I had to enlist her help in moving some large files via flash drive between computers. Thanks, Alison.

Aside from the disability problems accessing my computer I’ve also had technical problems to deal with. A few days ago I updated Microsoft Office 2007 to Service Pack 2. We’re encouraged to do this to maintain the product’s security, fix bugs and even gain new features. The trouble is that sometimes fixing one bug just introduces another one. I discovered today that inserting pictures into files and saving them in Word 97-2003 format now creates files many times larger than previously and saving them in the new docx format crashes Vista completely. I wasted half the morning trying to recover from these crashes. On hindsight (which is a wonderful thing) perhaps it would have been more sensible to hold fire on the upgrade for a while and wait for feedback from the user community.

Mark

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