…. the illness is taking hold as expected. It’s little by little; no dramatic change. A summary follows. Please don’t read it if you’re upset by such things.
Below are a few things that I feel are new, and others that were mentioned before but seem to have worsened a little in the last few weeks. Some might be the effect of the lockdown rather than MND/ALS so I’m noting them but not attributing them to the illness until the doctors and therapists give a view. Other changes have been commented on by the medics. And I’ve received three official ‘shielding’ letters – one from a consultant, one from the National Hospital, and one from my GP – and two sms saying the same.
Here goes, physically, from the top:
Hair: seems to be rather dry – perhaps a result of less activity than in the past, or a different diet, or a result of the drying, anti-saliva treatment. Or MND. Will discuss with medics
Cheeks: muscles weak especially the left side. MND for sure. I chew on my right side. Careful not to bite cheeks.
Tongue: not much movement possible; affects speaking, eating, drinking, swallowing.
Lips: like paper. Can’t keep food or liquid in the mouth. Can’t use a straw. Haven’t yet found a receptacle shaped to help.
Saliva: still a big problem. Sage tea doesn’t seem to have an effect. The behind-the-ear patch did help, and gave me good sleeps, but knocked me out during the day. The eye drops (to be placed under the tongue) might have helped but I’m not sure; and they’re used up. Medics suggested to try the patch again, cut in half. Will try that.
Nose: have to use irrigation method at least once a day. Often still difficult to breathe through nose. Sneezing very messy – muscles can’t control it, so I have a handkerchief and paper towels available at all times.
Breathing: still tricky and puzzling. The lungs seem OK (I have a blow-tube thing that registers me as near max power) but I’m gasping a lot when doing most things, even eating. The docs suggest posture might be a factor. Am working on that.
Teeth: strange – they feel brittle. If two teeth touch it sounds and feels like two metal files rubbing together, rasping. And the most irritating thing is that food can’t be cleared by the tongue so it’s wedged in there until I can remove it. Have electric brush and interdental brushes and Waterpik (tiny powered water jets) but still can’t get everything out. Looking forward to dentists and their hygienists back at work.
Jaw: still working but I detect some new limitations.
Leg: two days ago and yesterday there was a pain in the left calf, all day. It’s disappeared today. No idea where it came from. Not attributing it to MND but will check with the medics.
Rest of body: seems alright
Appetite: good and am eating what I can, though each special meal takes a long time and is minced or ‘soft and bite-sized. The portions are modest but they do fill me.
Weight: 82 kilos, eight less than three months ago. I’m tracking it and am hoping it’s stabilised given that I’m no longer gorging on steak ‘n chips, or meat and two veg and suchlike. 82 kilos,13 stone, is a good weight for me.
Walking: still a conundrum. When in a rhythm I can do a few miles trudging steadily, but not if I have to talk. As soon as I talk I’m gasping for breath. Saliva is a contributing factor. Also, I live 50 steps up and that’s generally alright unless I’m carrying something. Question I have for the medics: should I take more exercise or less? [NB they acknowledge that despite the shielding letters I DO need exercise to keep the muscles in trim – “use them or lose them”].
Food/Eating: the loss of most mouth muscles means I have tilt the head right back so that gravity stops food escaping. Food taken in very small amounts on a teaspoon placed next to my right cheek, to be chewed. Very careful swallowing. Consistency make a difference: not runny and not solid. Weetabix in paste-like form is good; scrambled eggs good; fruit sliced into small bits and eaten with yoghurt is good. Main meals from supplier specialising in that sort of thing.
Liquid/drinking: thin liquid such as water is risky – can’t control where it goes and could choke. The thickening powder turns it into a syrupy texture and is much easier but the taste isn’t so good. Mixing in a cordial or fruit juice does help.
Speech: gradually getting worse – slow growl, can’t pronounce some consonants, an increasing effort. Haven’t yet played with the software on the iPad for me to type so that it will ‘speak’ either with my limited voice or someone else’s (there are a range of voice options). Speaking on the phone is particularly difficult if it’s with someone I don’t know – various Westminster support services are often in contact for example, and it’s a struggle to make myself understood at times.
Clumsiness: getting worse. Seem to have periods of very short-term memory; losing things I’ve just used; forgetting what I’m doing; standing up from a chair and dropping something I’d forgotten was on my lap; sometimes a little uncertain on my feet. Difficult to know if this is ‘age’ or MND. I don’t think it’s because of age, and Dr S agrees: she ways it’s a known side-effect of MND and other illnesses. It needs second-by-second concentration on every action. She described the normal experience of driving home after work, on a known route, something one could do hundreds of times, with almost automatic driving responses, and when home not really remembering details of that day’s journey. That’s the norm, but I and others with the problem have to do the exact opposite: consciously to concentrate hard on every small action – “I’m now doing this; and I will place that there”, because without that mental concentration the muscles loosen and things go wrong. She says it’s mentally tiring, and she’s right.
Morale: pretty good. Frustration at the limitations and occasionally when struggling to speak to strangers, but by and large reconciled to the situation.,
Quality of Life Summary as of today: No physical pain. Talking is a strain, articulation is worsening, and speaking is a bit tiring if prolonged, but “It’s good to talk”. Living alone and, as a result of the pandemic, with less social interaction than in the past, I can often forget about the illness until I do have to speak. Eating and drinking are so problematic that there won’t be any restaurant, café, pub, club socialising in future. Once swallowing reaches a certain level of difficulty I’ll have to decide whether or not to have the PEG – percutaneous endoscopic gastrostomy tube – in my stomach, for food, hydration and general nutrition. I don’t want that but we’ll see.
I think that’s about it. No more MND/ALS blog for a while I hope.
Forgot! Brain: other than not reaching the bulbar parts, is it affected in other ways? The blog was one way of testing that, for me the writer and for any readers. I think most of the mental bits are still working but if this goes off the rails we’ll all know why. Unless it’s just ‘age’ of course!
End of rambling ….