In what seems like the blink of an eye another 100 day milestone arrives and it is time to celebrate 800 days since my diagnosis smile_party. The day-to-day stuff is now fully covered in the regular calendar updates so I thought all I’d do to mark the occasion is to summarise my declining health since October.

Scanning through my D+700 post reveals a lot of similarities with what I am currently experiencing, only more so. Mobility continues to decline as the motor neurones that connect to my leg muscles slowly die. My legs are certainly getting thinner where they join my body and I am now teetering on the edge of not being able to support my own weight, a truly frightening experience. The simple act of standing up from a chair has become one that I have to approach with great caution and try as much as possible to only do when there is somebody else around just in case my legs give way at the knees. Of course I have my panic alarm strapped to my ankle and that of course gives me some peace of mind but I would still much sooner not have to use it. Movement is now confined to either walking from my bedroom to the bathroom or from my study to the bathroom, or at a push walking to and from the stairlift to gain access to the living room. I think my days of being able to walk out of the house and into the passenger seat of a car are also over and I’m now seeking help on alternative ways of getting transferred into a car as the thought of being trapped in the house forevermore is depressing.

My torso strength has also been slowly fading away these past few months. I know this for a fact because it is getting harder and harder to catapult myself into an upright position on the edge of the bed. There have been a few occasions when I have been fearful of not succeeding, the results of which would be unthinkable! So getting up in the night to answer a call of nature is becoming increasingly stressful, and in the absence of a live-in carer (my choice) I’m having to consider some other alternatives, none of which do much for my dignity. But then again being realistic even with somebody here there will come a time when I need full on help with my most personal care.

Muscular aches and pains have been increasing in recent months too, partly I suppose from sitting in one location for too long during the day, and partly from being left alone in bed for too many hours without the ability to turn. Because the motor nerves in my upper body are in a far worse state than those below my waist I find that the only way I can move my upper body in bed is to try and pivot from my lower spine. Of course trying to swing a heavy body in this manner is not going to do my spine any good at all but sometimes it’s the only way to relieve the pressure on one part of my body after lying there for so long.

Skin irritation and the inability to give yourself a good scratch drive me up the wall at times. Just imagine for a moment how many times we subconsciously scratch ourselves throughout the day to remove an irritation. Now imagine not being able to reach the irritation and how long you could tolerate it. During the day I can sometimes (depending on where it is) improvise by using an adjacent piece of furniture or doorframe to rub up against much like a cat would. I’m sure to an outsider I probably look silly but when there is no one around you just have to work with what you have.

Rotational movement in my arms is really getting bad now. At times when my arms and hands are resting on my lap, such as when I’m dictating into my computer via the microphone, I can end up struggling for ages trying to get my hands into a position so that I can reach out and answer the phone or intercom. So to all my family and friends who come knocking at my door please be patient when you ring the bell. I’m not ignoring you, just struggling to get my arms into a position to respond!

I’m having real difficulty with my grip. In fact thinking about it the only thing I try to hang on to these days in a vain effort to maintain some dignity is toilet tissue. But even that is a nightmare as my hands tremble so much and refuse to close properly that inevitably I sometimes drop the tissue before I even get to use it. Trying to clench my fists is a real effort and although I have physiotherapy which may keep the muscles from seizing up altogether, I am still losing independent control of my hands. Most of the time these days they just sit there lying in my lap or propped up in an arm support.

In recent months I’ve lost the ability to type letters, e-mails or indeed this blog. The sheer effort required to propel my right arm across the keyboard so that I can hit various keys leaves me breathless before I’ve typed more than a few words. Thank goodness then for word recognition software which despite its faults is the only thing currently enabling me to use my computer for any length of time.

I’ve now fully adapted to being fed by somebody else. In the months following the September accident I’ve had to get used to being spoon and fork fed by somebody else. It was something I fought long and hard against, desperate to retain at least some semblance of independence until the cold harsh light of reality forced me to accept that I was never going to be able to keep it up and that I was only wasting precious energy and looking rather foolish with my head bent down so near to the plate. Now I feel much more relaxed about it even when out in public. It has become just another part of the life that I now lead.

But despite all the horrible things that are taking place there are still some aspects of me that the disease has either not touched yet or has progressed at a slower rate than I thought it might. My breathing for instance, already on the bottom end of safety seems to have plateaued for the time being much to my relief. The thought of having to wear a face mask at night just to breathe really does send chills down my spine. And my speech, despite lacking the volume it once had is perfectly legible so thankfully I’m still able to socialise and make my wishes known. And lastly I’m still able to eat normally and enjoy the pleasure of food although my appetite has diminished.

So that’s where I am with it all at the moment. I’m definitely starting to feel like I’m trapped in a body whose warranty has run out and there are no spare parts. It’s been a bit hard getting going this year. For most people the start of a new year is a time filled with optimism for the future and the things to look forward to as the year unfolds. But for myself I’m just seeing a further deterioration in my condition that will make life even more difficult for me than it already is.


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