Blog 3

Hello again! For those of you who are new to this blog, the first two instalments, including introductions, are below, in reverse order. And once again, thank you to everyone who has read it and responded in quite large numbers on Facebook. Thanks to Emma Johns of the MND Association for England, Wales and Northern Ireland for sharing. I am also very grateful to Alison Mudie of MND Australia, who shared the blog, which has resulted in lots of really positive contacts from the other side of the world. G’day! And we're also on MND New Zealand. Kia Ora! I even had a response from a fellow MND patient in Albania. Once again, it’s a privilege to be sharing others’ experiences, emotions and frustrations.

Movement

Ah, how I remember Friday nights, after a couple of glasses of Bordeaux, when I would get out the inflatable hurdles and hurtle round the lounge, my husband shouting encouragement! But I’m afraid these days are long gone.  Yes, the theme of this blog is difficulty with movement and it’s clearly one of the most common symptoms of the disease.

When first diagnosed over 30 months ago with bulbar MND, my ability to walk was only slightly affected. After our first few weeks of emotional trauma following the final diagnosis, when we frankly didn’t feel like doing much, we tentatively began to make plans again. I’m not a great fan of the “bucket list” concept - we simply decided to splurge some found money and saved-up Avios points on visits to some of our favourite European cities. Looking back, these were wonderful days, but gradually over time, such holidays became more difficult and finally out of the question. We still go on short breaks when we can, but now mainly to Fife or our beloved Kintyre, in Scotland. Now necessary equipment takes up more and more boot space. Easyjet or Ryanair would make a fortune from me!

In the beginning, I naively thought that my limbs would remain unaffected for longer. Ah the innocence of ignorance!

In an attempt at a logical approach, let’s start at the top of my body and work down.

Smiling                                                                                                    

Smiling in social situations is tricky, particularly when you are dealing with the excess saliva at the same time. Since I can’t participate nearly as much in general chat, at times I just have to sit, listen and practise the social smile. But after a short time, the smiling becomes more difficult and my mouth and jaw muscles become tighter and more uncomfortable. Any photos have to capture the first attempt at a smile, otherwise, I can look as if I really don't want to be there. For this reason, I tend to limit social interaction to around two hours. Any longer, much as I would love to linger,  I can get too tired. And tired facial muscles make eating difficult. MND also makes you yawn, sometimes noisily. So between the smile that has slipped and the noisy yawning, I may not always look like someone having a good time!

Sleep position 

We’ve been experimenting with a pillow lift, as moving in bed is increasingly awkward. It sounds an excellent idea – an electrically controlled inflatable cushion under the pillows, that raises and lowers the upper body. The inflation is disconcertingly accompanied by sounds like a tyrannosaurus rex with severe flatulence. Disturbing  for The Boy (code from now on for husband ) should I decide to raise my pillows at 3am. Nonetheless, we’ve been inflating and deflating to our heart’s content, to see if I can get into that desirable final sleeping position, but I’m afraid without success so far. We’ll keep trying.

Walking

Walking has now become more difficult, with a definite weakness on the left side. I can still walk around the house a bit, unaided, although holding on to surfaces, just in case. I sway alarmingly without warning, and that's without the drink. And my left foot follows the rest of me with a two- second gap and doesn't always clear the ground. The Boy and I now sometimes take romantic walks together, arm in arm, from room to room. We particularly enjoy the stroll from kitchen to dining table and back. Reliving our youth together? - well, not quite!

Exercise                                                                                                            

I now have an exercise bike, to encourage muscle retention and strength and to increase my circulation. Of course it's not a normal bike, but a small floor model which I can use while seated in a chair. The Boy has bought me a bicycle bell to encourage me to use it, but exercise and I are strangers…. as all my friends would readily agree. See photo for proof of said activity!

Glacial hands and feet have become an issue. I used to try and sneak my feet over to The Boy's side of the bed, but being sneaky requires stealth and speed, two skills I no longer possess. However, I have a small furry animal, not real I hasten to add, which after a couple of minutes in the microwave, restores some semblance of heat.

Fingerless gloves are a good ploy for during the day and still allow some movement. I also have therapeutic putty, a kind of adult playdough which keeps the circulation moving in my hands. It would be more efficient if I used it more often!

Out and About.

In the end, I gave in to the inevitable and now use a wheelchair to get around outside. Measuring your length indoors and on a carpet is one thing. Doing so in public, another matter altogether, not to mention more dangerous. Although The Boy is a good car driver of many years’ standing, I am less convinced about his wheelchair skills. This probably dates from the day when he rammed my feet into the door of the hospital lift and blamed it on the lift! He’s definitely improving - according to him - but I still fear the backwards lunge as we come off, or mount, pavements. Not too sure either about reversing into lifts. And despite all, I just don’t like the “wheelies” he insists on doing in the broad fruit and veg aisles of the supermarket.

I also feel a bit like a Russian tank, once the wheelchair trolley is clipped on in front, although it is damned effective at running up the heels of the ladies who invariably occupy the middle of the aisle, chatting. The Boy does this with panache and apparently an apologetic smile that astounds. And it's not until you are in a wheelchair,that you realise how inaccessible shelves are. The hand signals I spoke of in an earlier blog become increasingly frantic and much less polite, as we speed past items not on the list. If it's not on the list, no chance!

Oh, and a serious complaint: when will people stop parking in disabled carpark spaces, when they are fully able-bodied? Or there is no disabled parking permit to be seen. I have noted it’s very often large 4x4s in particular. It incenses me and I would propose corporal punishment, public stocks or even car-impounding – for starters…

Going Up 

We’ve also installed a stairlift, which, according to The Boy, will allow me to continue to mess up the whole house! It has certainly given me back a great deal of independence, where the stairs had begun to take on the challenge of the Eiger. It’s also useful for sending piles of ironing upstairs. Again I can hear friends' hollow laughter! The grandchildren call it the “chairlift” and were quite disappointed that it didn’t swing precariously over the stairwell. However, offering to sell them tickets for the lift has thankfully dissuaded them from overuse of gran’s ‘stair taxi’.

So all in all, we lead life at a more sedate pace than before.

As someone once said "Stop being afraid of what could go wrong and start being positive about what could go right"

Keep reading and keep well.
Liz

Posted 16th February by Liz Ogg