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.


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