Again it's been a long time since posting last. I guess it's a combination of not much happening and not wanting to post another whinge about everything. So without going into great detail, outings have included a cinema trip with my sister to see Salmon Fishing in the Yemen, a couple of trips during the 10 days that was apparently our summer to bushy park and a visit to my MND mate, Liam. So the new car isn't getting much use at the moment.
Our 'summer' was a chance to get outside although I really struggle with 28 degrees. But it seems it's that or 14 degrees and wet. The recent Jubilee celebrations were a welcome change to the repetativeness of the usual routine. As anyone who read my facebook comment will know, I wasn't able to join Tracy and boys on their trip to watch the Jubilee Pageant because of the transport logistics and the likelyhood of seeing anything from a wheelchair. Obviously watching it on TV was drier and warmer but it was yet another event which would have been nice to experience and share with them.
On Tuesday we had our street party and despite being the wettest day of the weekend I was able to attend, sheltering under one of the many gazzeebos which had been erected. It was well attended but unfortunately the rain eventually dampened most people's spirits by about 5pm although I was one of the few that made it until 9pm (determined to make the most of an event literally on our doorstep)
I have just reached the 6 year mark according to my stick man on Patients Like Me website. After a fairly typical steady decline over the first 4 years, my FRS has been static for the last 2 years. My score of 12 primarily propped up by respiritory function (although I reckon my FVC is well below 40% I don't use any ventilation or experience shortness of breath yet) I don't know why my progression has almost halted but I am not complaining as I know it won't last forever. There has been deterioration in the last 2 years, not reflected in FRS but still impacting life significantly. But it's still strange why this is happening. One example of a subtle change was experienced yesterday. Lifting my head up after dropping it forward to swallow has been increasing in difficulty but yesterday was the first time I just couldn't do it. I have already devised a pad to prevent my chin dropping completely but I think I will have to get some type of head tether. Another stylish accessory!
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About Me
- Steve Evans
- OK, should have done this two years ago when I was first diagnosed with Motor Neurone Disease but better late than never. I thought it would be a good way of keeping anyone who was interested up to date with what's going on with us. Communication is getting harder and whilst I want to keep texting, emailing and chatting to everybody this seemed a good way of saying more things to more people more easily. Typing is a slow process (this has taken 20 minutes so far) so a once to many approach seemed good. I hope to keep it up to date with various stuff including whinges about things MND related as despite trying to "keep positive" it does affect (in a generally f**ks it up kinda way)almost everything I do! For those of you who really want to, you can check out my "status" on my web link. Finally, PLEASE leave comments, even if brief as its the only way I know its being read!!
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5 comments:
Glad to hear you stuck it out longer than most at the street party. Glad to hear you've stuck it out for 6 years on Patients Like Me too.
Whinging is understandable Steve. I am sure everyone wants to say something when you post details of the challenges you face every day but can't really think of anything of merit to say after your frank and informative posts. But please don't let that stop you keeping us updated as it is always good to read your news.
Women have it slightly easier in that they can simply add a brief comment and finish it with a "x" which can mean so many things. But heterosexual men don't so readily use the all encompassing symbol of general niceness: the 24th letter of the alphabet.
Perhaps somebody should invent a single character symbol that kind of means "Mmmm" and "What a bugger" and also combines the sense of a deep sigh followed by a punch on the forearm and the accompanying words "oh well, don't worry mate". Then I am sure men would have a way of ending even their briefest of posts in a comforting and slightly caring (but not too much) way that they talk to each other.
Richard V
x
Good to hear from you Steve. Such a shame the weather is so rubbish. It's getting everyone down, but must be really frustrating for you. So sorry about the latest. Thinking of you all. Anna P
Hey Steve, we are reading so please keep posting. Don't worry about the whinging, you need to vent and it puts everything else into perspective for us readers.
Salmon Fishing in the Yemen WTF? No Avengers - or have you already seen it?
Jubilee totally passed us by here (no surprises there) but good to hear you're still partying on!
I won't tell you what the weather's like here but I've been watching the flooding in Mid-Wales, unbelievable - don't tell me Thames Ditton still has a hosepipe ban.
I'll leave you to ponder designs for new stylish headgear ... Love to all, J.
Just cannot believe it has been six years mate. That makes you older than me! Am more than glad you are still here and that the scores on the doors, especially the breathing, are still holding up. Just showed another two people your eyegaze video because I think it gives real insight into what MND does. When will the association run it then???!
Steve - your blog is also being read by random people,like me, who hope that you are able to get something orthwhile out of every day. All the best.
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