I’ve been quiet for a few days. They’ve been rather difficult health-wise.
In one sense it’s ‘more of the same’. Each weakness that I described in the last State of Play document has worsened. Head, mouth, throat, neck, lungs, left arm and hand, left leg and foot, balance, sleeping, all are noticeably more feeble and daily life is all the more wearying. Energy levels are rather low.
Sorry to say all of that, but with MND/ALS it’s fully expected. Here’s the 13 March blog and here’s the State of Play on that day twenty weeks ago. You could add “Worse now” to each item.
Take the left arm and leg for example. The fingers still have some flexibility and strength. The arm can raise the hand only up to chest height but then I have to use the right hand to support the left arm, effectively disabling both. Coping with that can be quite comical.
Chaps, if you wet shave try it with one hand only. Everyone, put on your trousers and buckle the belt single-handed. Similarly combing your hair. Shampoo? I have to pour it on the head and then mix it in, all with the right hand. How about putting on a T-shirt? And then taking it off? Just one hand. Try it. Rather worryingly, I now have to find special positions for two-handed typing. At the moment sitting at the desk to use the computer is almost impossible. Most of this is done sitting upright on the bed using the iPad. When that becomes impossible we will have communication problems.
I could do a similar update on the other parts of the body but let’s leave it at that for today. I just wanted to explain the situation without writing out a whole new State of Play report. Normal service – definitely not as negative as this one – will be resumed shortly.
Thank you for the update. It is easy to read the blog and feel so uplifted by what you are achieving in spite of the illness and so (almost) forget what it is doing to you. It does put my worries into perspective and helps me value what I can can still do – fortunately I don’t need a wet shave! But I can send a hug.. if only virtually.
Exactly as Sue says – including even re wet shave 😀
So sorry things are even more difficult dear boy. It’s important that you share this – for your sake, as well as others’. Big hug et pax et bonum
David mon brave ! One comment on the difficulties involved with shaving one-handedly. I hated beards before I grew one but now think that they invariably add a certain ‘je ne sais quoi to every male face. Go for it ! Big hug. G
Dave, you are amazing, and thank you for updating us, as always. I do remember attempting to do things one-handed when I broke my wrist (and you were my knight in shining armour!!) – hair washing, showering, getting dressed and how terribly frustrating it all was. Go for the beard, you can totally pull it off!! xxxx
Hello David. I remember when you grew a beard a few years ago. Captain Birdseye!!! Go for it!!
Your bravery and determination are awesome. Hang in there, with or without a beard. Much love.
We’ll it’s all been said above really. So glad you can be so positive and so glad you can tell it as it is when life is a bit sh…t, even if it’s said with the usual British understatement and humour. Big big hugs from across the sea.
Dear David,
As always, you are inspirational.
Thinking of you with lots of love from Vienna and Oxford.
Dear David
You really are heroic inspiration, I am so proud to call you my friend.
We are all thinking of you here and sending as much love as can be crammed through the ether. Xxxxxx