Thursday was the 400th day since being diagnosed :-D. This year sure is flying by. It really does only seem like yesterday since I reached the last of these self-designated milestones. I wish my life would slow down a bit as each day becomes ever more precious. On the other hand I can’t wait for Christmas to be over as I’m looking forward to lighter evenings and warmer weather again. I’m finding that MND doesn’t care much for the cold so consequently I need to have the central heating on all day. Can’t wait to see my next gas bill :roll:. Anyway, continuing the format already laid down I shall recap on events from the past 100 days and then finish up with more recent happenings.

The one thing that I’ve noticed more then anything else since late summer is my declining energy levels. Earlier in the year I suppose I was to some extent living off reserves thanks to greater muscle bulk. But the steady atrophying of my muscles, most particularly around the shoulder girdle, has meant an increasing feeling of overall weakness as well as reduced upper body mobility. I generally feel a lot less energetic these days and tire quickly even after what would to a normal able-bodied person seem like trivial tasks. Consequently my life style is becoming ever more sedentary in nature.

Back in mid October my life style changed forever and I made the first tentative steps into the world of home care. I’ve already written plenty about the events leading up to that moment so won’t repeat them here. All I will say for now is that MND is a high dependency disease which I’m gradually starting to experience for myself. Consequently I am truly grateful for having some care at last. I resisted it for almost a year but now I have it and because my health continues to decline I just wouldn’t ever want to be without it. I’ll write a separate blog article documenting my experiences of living with care sometime early in the new year.

In late October I had another lung function test. As respiratory decline with MND contributes greatly to reducing your life expectancy it is understandable that the doctors would wish to keep a close eye on this health aspect. I must admit that I found the test more of an effort this time, particularly when trying to rapidly inhale and hold it for as long as possible. I explained this to the technician conducting the test but she just told me that it is normal to find breathing in harder then breathing out because of the way we are made.

The following week I had the last of my blood tests required for the first year of monitoring the effects of taking Riluzole. My GP has come to the conclusion that I now have terrible veins as she struggled to find them in my arms and eventually had to use a special butterfly needle in my hand. I prefer to think I’ve got ‘submarine veins’ i.e. they’ve ‘gone deep’ :-D. It wasn’t always like this though, in fact back at the start of all this taking blood was quite a simple procedure.

Another week passed and it was time once again for my four-monthly visit to the Neurologist. I’d gone there firmly believing that I was going to be told that my respiratory function had declined further especially after the effort at the last test. I was very surprised, therefore, to be told that a comparison between the two most recent sets of data had shown no further deterioration. Apparently I am still able to shift 4 litres of air. I was over the moon on hearing this although he did have me worried at first when he looked me up and down and said “I like your shoes…but I wouldn’t want to be in your shoes”. Only joking! I just can’t imagine my Neurologist saying anything half humorous to me, hehe :-D. Good job I can still laugh though!

He also reviewed my latest blood test results and concluded that there was nothing to be concerned about and that everything was okay. So more good news. Under normal circumstances I think I would be moving to an annual blood test now but because I’ve had a couple of instances of elevated Bilirubin – remember ol’ Billy? My Neurologist thinks it might be a wise precaution to have a blood test in another six months. At least that’s better then every 3 months. Apart from that the rest of the meeting went fine and I won’t see him again until next March by which time I’ll have had another lung function test.

I’ve been keeping my Occupational Therapists (of which I have two) busy lately. Marion, my contact with Adult Services arranged for me to have a raised platform outside the front door. So one day a technician from Hampshire County Council called round and did some measuring up. Two weeks later he returned with this huge piece of carpentry which he then proceeded to sculpt to suit the profile of the driveway on which it would rest. This platform which extends out from the front door about 21 inches and is covered in an anti-slip material makes it much easier for me to reach the new front door lock as I don’t have to struggle to lift my arm up so high. It effectively lowers the lock by about 8 inches.

Marion was also instrumental in arranging a demonstration of an automatic page turner for me in my own home. Handling books and magazines is becoming increasingly difficult for me particularly when trying to turn the page whilst seated. As I enjoy reading so much this is definitely one interest that I do not want to give up to the disease. Now these devices which by necessity of having to cater for a wide variety of book sizes can appear quite imposing and can be very expensive if you go for a commercial model. By expensive I mean several thousand pounds. REMAP, a charitable organisation, manufacture their own and apparently do the job just as well I’m told. Seeing this huge contraption set up on my dinning table and alarmed at how much space it would take up made me long for the ‘simplicity’ of having my arms work again. The device used a foot pedal to activate a motor that would cause rollers to gently and slowly turn the page. Thankfully the whole thing was fairy quiet in operation but it sure is cumbersome. For now though it was just a case of demonstrating what is available and how it would work. If it got to the stage where I actually needed it then I would also need someone to load a book onto it too.

Chris, my OT on the NHS side of things has also been bringing me various things to try. The first was a much lower tech solution to turning pages – a dimpled rubber thimble. Simple it might be but it is remarkably effective as it gives your fingers some much needed traction on smooth pages. Although it won’t be a long term solution it will hopefully delay the need for a more cumbersome solution.

I’ve also been trialling a wrist support that Chris brought round about a month ago. The idea is that it gives some firm support to the wrist muscles which are quite weak now and prone to wrist drop at unlikely moments. I’ve had limited success with it so far. Part of the reason is that I spend quite a lot of time at my computer where my hands are already supported thanks to the Ergo Rests. In fact wearing the wrist support then prevents my fingers from reaching the keys. I tried eating some lunch with it on too and that was quite difficult. I’m still experimenting with it.

Something else which I had an opportunity to try a few weeks back were a couple of different styles of neck support. Unfortunately the muscles at the back of my neck are also starting to weaken which means it is becoming increasingly difficult to lift my head up particularly towards the end of the day when I’m feeling quite tired. I guess that’s the price you have to pay for having a brain the size of a planet :-D. A head of course is a very heavy part of the anatomy and relies on strong muscles for support. Now those muscles are growing weaker they are introducing me to a whole new set of problems particularly when it comes to washing and shaving. One of these supports I tried was very conspicuous due to its rigid framework design and made me feel very self-conscious. Okay I suppose in the privacy of your own home but not something I would feel entirely comfortable with in public. A simpler and literally more comfortable one looked like a series of soft padded fabric tubes around my neck. In fact being bright white I have this vision of myself standing at the front window mid afternoon with this thing on when all the young children finish school and are walking home with their parents. Suddenly one of them looks in my direction and runs off screaming “look mummy, the Michelin Man, the Michelin Man” :-D.

I’ve started making use of voluntary schemes. Back in the summer when I was still walking the 40 minutes to my doctor’s surgery each month and slowly starting to feel more and more tired from the exertion, my GP recommended a voluntary group called Basingstoke Neighbour Care who she explained provided transport for people needing to visit their doctor or the hospital. When autumn arrived bringing colder mornings and more variable weather I felt the time was right to investigate what services were available to me so I registered and for the past few months have been ferried around on all my medical appointments by a very pleasant retired couple called Jim and Val. We got along so well after my first appointment that I automatically ask for them every time now. They not only collect me from my home and bring me back but also come into the waiting room and wait for me. The scheme isn’t entirely free as it is expected that a donation be made towards the cost of petrol but nevertheless it saves me a lot of walking on routes where buses are not directly available and cuts down considerably on time when I have a need to go to the hospital.

I’ve not been out anywhere near as much lately as I did all through the spring and summer. Back then I lived in shorts and T-shirts so if I fancied a walk around the estate or over by the farm fields it would be a simple matter of grabbing my house key, putting my shoes on and walking out the door. Contrast that with now where the colder weather means more layers of clothing and all of a sudden going out becomes a major problem. Because my shoulders are so much weaker now it’s hit or miss as to whether or not I can actually put a coat on at all. My autumn jacket is lighter so I just about stand a fighting chance of getting it on, however I no longer have the strength in my arms to pull the jacket halves together so I can’t zip it up. Getting my winter coat on is much harder as it is too heavy for me to even lift onto my shoulders. I tried it once a couple of weeks ago and I was exhausted from the exertion. Even after I had eventually got it onto my shoulders I was still unable to do up a single button so had to go out for a walk with my arms held across my body trying to hold the coat together. If I need to go out at all I try to coincide it with when my carer is here in the morning so she can help me. Apart from a few walks when the sun is out I tend to stay in a lot these days. Even walking down the road to post a letter is becoming very difficult because I cannot raise my arms enough to post the letter in the slot. I’m just keeping my fingers crossed that I’ll still be able to go out walking next spring.

The disease continues to progress at its own pace bringing with it new problems to resolve. I’m now finding it increasingly difficult to rotate/pivot my left arm. Thankfully my right arm still works in this fashion but it is now becoming harder to grab things or wash my hands under the taps because I cannot position them properly. I therefore need to use my right hand to position my left. As strength fades some bathroom activities are becoming difficult too. For instance I struggle now to squeeze toothpaste out of a tube and pressing the trigger on an aerosol canister requires me to use my whole body strength rather then my hand. Balance is also something I’m becoming more consciously aware of as my ability to quickly compensate for subtle changes in my balance is slowly deteriorating. It’s particularly noticeable when in a dark environment where it can feel like a bit of a struggle to stay on an even keel. I’m much better when there is some light about. I’ve also been noticing some slight difficulty in getting out of a car, particularly those low to the ground, no thanks to my weakening upper leg muscles. Eating is also becoming more time consuming and tiring for me because I need to use my left arm to support my right. And I’ve just recently noticed that it is getting harder to even switch lights (or my PC) on and off – my fingers start to fold under pressure. Actually I’m sitting here trying to think of any good parts of me that are left? Well, I still have nice blue eyes, haha :-D.

I’ve been writing out my Christmas cards this week and couldn’t believe how long it took. It is becoming so hard to form the characters (or to be able to hold a pen) and writing more then a few words without a break is getting beyond me. So to those of you I’ve sent a card to my apologies if upon opening them they appear a bit spartan. If I could write more I would.

At times I feel like I’m becoming detached from my surroundings, that I am loosing the ability to interact with my environment. We just don’t realise how much we depend on our upper limbs and how much we take them for granted until they start to fail. It’s hard to think of any activity now that isn’t affected at least to some degree. It’s like a war: I fight a battle to keep doing a particular task or hobby – and eventually (despite my stubbornness) I loose. So I fall back to new lines, dig in and carry on fighting to preserve that which is dear to me. And so the cycle repeats itself. At times it can be really frightening, this slow creep forward of a disease that defies understanding. And there are times too when it becomes so frustrating and depressing seeing all my physical abilities slowly drain away and feeling so helpless, like a terrible nightmare that I can’t wake up from.

But despite everything I still try hard to keep on smiling come what may, after all we use fewer muscles to smile then to frown – so I save energy too as well as appearing perpetually happy :-). And they do say that laughter is the best medicine! I just wish that my nerve cells hadn’t flown south for the winter :-D.

So here we are on the run up to Christmas and it’s that time again for meals out and other social gatherings. Last week I had an opportunity to meet up with some good friends from Eli Lilly for a pre-Christmas lunch at Bartons Mill :-). Just sitting round that table again surrounded by all my friends and for a moment it almost felt like I had stepped back in time to a previous year when we used to go there for our departmental meals. Thank you all for that feeling.

At Bartons Mill. At the back we have: Bill, Carry, Geoff. And at the front it’s me and Chester

I’d like to take this opportunity to thank Carry for looking after me and for making the arrangements and for keeping some of the guests a secret – that was a nice touch! Bill, Geoff, Chester, it was really good to see you all again and to know that you are all doing well and indeed look so well too! Carry has kindly provided me with a photo taken that afternoon on her pinhole camera :-D, cheap (sorry, I’m laughing while I’m writing) mobile phone, a nice memento of an enjoyable afternoon. I’m looking forward to our next gathering.


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