D+600

It’s now 600 days since I was diagnosed 😀 and this last 100 have simply flown by faster than any other.

Regular visitors to the blog will have noticed a change in format over the last few months brought about by the increased activity required to document all the goings on lately. The change wasn’t justified last year as disease progression appeared to be having the greatest impact on my upper limbs and leaving me mostly functional in other respects. But now that I’m weakening all over and events are posted much sooner it has had the effect of diminishing the importance of these D+ posts, so although they’ll continue I don’t expect them to be the major posts they started as. It’s funny really as I never set out to post as frequently as I am lately but as sitting at the computer pushing buttons is one of the few things I can still do I might as well make it mean something and continue to try and raise awareness of this truly awful disease whilst I still have the energy.

Without doubt the global effects of MND are starting to manifest themselves in some quite frightening ways and their implications for the future at times fill me with dread. There are two distinct areas where the disease is now causing me great concern. The first is the steady decline shown over recent months of my respiratory system. I certainly don’t feel like I have the huff and puff that I used to have and it doesn’t take much physical exertion to leave me slightly breathless. The only good thing I can say is that it doesn’t appear to have gotten any worse just lately. I can at least get a good night’s rest and don’t get many headaches – certainly none that I wake up to. So that’s a good sign.

You would think perhaps that the ability to breathe would be the biggest worry I have but at the moment it hasn’t reached the life critical stage or indeed the need for intervention. My biggest worry right now is that my legs are ‘dying’. The muscle tissue in my upper legs is wasting away as the nerves that connect to them start to die off. My legs look thinner, it hurts a little when I get up, I feel less certain of my balance, and my legs generally feel a lot weaker in trying to hold me up. I live with the fear of falling over and being trapped helpless on the floor…or worse, falling down the stairs and really hurting myself. I feel frustrated on sunny days when I can no longer simply go for a walk as I would tire too quickly. I’m worried about losing access to whole areas of my own house and I’m starting to wonder if this will be the last year I am able to stand up. It worries me that I live alone with a disease that won’t allow the luxury of independent living.

The increased difficulties I’m now experiencing have meant taking a closer look at the house and deciding on ways to adapt it. Stairs are becoming the biggest challenge but an order placed for a stairlift should buy me some time. Further ahead will be more significant adaptations but will at least enable me to stay in my own home.

As the disease has progressed so too has my care package grown to accommodate it but at least I now have the added reassurance of someone close to hand for more of the day. The big change recently has been the gradual transition and eventual surrender of all personal care. It really does take some getting used to having someone else wash you and attend to your needs but fortunately I had some time to get to know my lovely carers before we got to this point so I actually (amazingly) feel quite comfortable with them doing it. It also helped by gradually introducing one aspect of my care at a time. With all this care and attention I’m receiving I feel quite pampered at times. And despite all the gloom and doom lately I have to say how wonderful my carers are. They have made life so much more bearable for me. They all go that extra mile and really do look after me in so many ways. Thank you girls…for everything. Without you life would be quite unpleasant by now.

I hope I don’t put a hex on it by saying that the one area that remains completely unaffected is the bulbar area. My ability to talk is completely normal, thank goodness as communication and making your needs known is such a crucial human skill. Despite losing some weight my appetite in general remains healthy – my carers will back me up on that one! I’m still able to chew and swallow normally, and long may it continue.

Mark

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One Response to D+600

  1. jane c says:

    Funny you should mention your speech/bulbar abilities in this blog entry. Matthew Fraser has also done so in his blog this month. His experience, like my Richard’s, is the early loss of speech and the isolation that lack of speech brings. You just do not realise what a basic function human communication is until you lose it. One of my lasting regrets is that Richard and I barely spoke to each other in his final few days, just because it was too difficult. Here’s a bit of Matthew’s blog pasted below for your readers ….

    Lonely v Loneliness.

    This is something that I’ve noticed happening to me as my voice has now all but disappeared. I realized that I was feeling very isolated and lonely although many people were around me and couldn’t quite figure out why. It was because that as my voice went, everybody also stopped talking. The interaction you would have with your children or people around me had disappeared. I was no longer able to engage in human interaction in the normal way, so everyone stopped talking to me. Some days I would go for most of the day without anyone talking to me about their day or some silly story! Now I know that talking to someone like me is difficult as you can’t really ask questions (unless you wait for the typed answer) or can’t engage in two way conversation (unless you have patience). I do appreciate how difficult this is to do, because I had the same issues. In the early days I talked to a PAL (patient with als/mnd) who couldn’t respond I found this very difficult… to the point that I just stopped talking to him. The children have adapted very well and in their own way… just come up and give me a big hug from time to time … or learn to wait for me to type a answer… which means so much to me.

    Please don’t take my comments that I want everybody ‘babbling’ on at me… that wouldn’t be real! I’m only writing this down to show you some comprehension of what it’s like ‘in here ‘.

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