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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One Response to The month of October – part 3

  1. jane c says:

    Hi Mark,

    Been absent from your blog for a little while due to work commitments and holidays and come back to find a huge amount of info to plough through – you have been busy! Nice to see all your photos, very reminiscent of a lot of ours!

    I assume by now under special rules you should be receiving higher rate DLA – did you know you can use this money under the Motability scheme to get a car, which you could have adapted for your needs. This would solve the problem of trying to use different carers’ cars, they would then just drive yours. We had a hoist from Autochair, which was brilliant for getting Richard in and out of our car, check out their website, they do all sorts of different transfer items, which might prove of value/interest to you. (photos of Richard’s hoist on our blog – entry 18 May 2007).

    I hope you can sort out your independent TV viewing – it certainly should be possible through infra red controls. Richard controlled his computer and TV and fan and lights through his Smart box operated by foot switches. He chose very early on to sleep in his MNDA loaned riser recliner, because he could then independently choose to lie back and sleep or sit up and watch movies – a wrench to give up another aspect of “normal” life but it did solve this problem of being stuck in bed for half the day.

    Glad that you’re still getting out and about when you’re carers are available – it’s very easy to go stir crazy in the house! Keep up the good work and keep blogging!

    Jane

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