10 October 2011
My faithful secretary Doreen, came in today to catch up with filing etc. It only seems a short while ago that she came here to do the same job and I find it hard to believe that there would be very much to do, however it still took a couple of hours. This despite my having given up most of my activities and ruthlessly dealing with incoming mail, much of which goes straight into the waste paper basket unless it is something that I am likely to need to refer to in the relatively near future. Add to this the new policy I have introduced when I have a file opened for me. Any, papers or documents which I have not looked at for more than a year are shredded or thrown out and yet still the amount of paperwork still increases.
I heard today from Dr Saunders, from the Rank Hospice in Cambridge, that she has arranged for a group session for me, this coming Friday, to try to ameliorate the pain I am still getting in my joints, at night.
‘My lovely’ came home this afternoon with an enormous waterproof cape, which, when we tried itt on, proved plenty big enough to cover both me and my electric wheelchair. Alice has fone extremely well in finding this as I could not find anything even vaguely similar on eBay.
Cousin Joan, from British Columbia, sent a blog comment today concerning my forthcoming cataract operation and saying what an enormous improvement she had experienced following her own operation sometime ago. Very encouraging.
How would you describe Hell? I love this chemistry student#s explanation.. Click here. I would certainly have given this student an A+ for this clever and amusing answer.
We’ve just discovered your blog via the MND website……and how glad we are to find you. My husband, Stuart Hague, who’s 76, was diagnosed with MND recently (actually around a year since the first symptoms). It seems that he also has the “flailing arm” variant. His immediate comment to the neurologist at Ipswich hospital was “well, that’s good news, perhaps I’ll be able to hire myself out to some farmer who needs help with the harvest”. Perhaps that comment alone is enough to give you an idea of the good nature and humour with which he is tackling this condition. We are both looking forward to exploring your wonderful website, as it will undoubtedly be a very useful resource. Like you, we have found that the support teams are great, but it is also good to work things out and overcome the (many) obstacles which present themselves at intervals. Carpe Diem must really be the most useful motto in this situation. Life is different for us now, but we are still having fun. We have just spent the weekend with old friends, and laughed ourselves silly. Who knows what the future will hold, but the present is what counts. Thank you for the blog, it has lifted our spirits.
Bilateral cataract surgery for me a couple of years ago proved an amazing success. I have had bad eyesight since I was 7 and to now be able to see clearly when I awake each morning (that is without putting on specs) is such an amazing delight to me each and every day. If you have even half the benefit I had then you will be well pleased. I was considered “high risk” when I went in for my surgery which led to some apprehension but all went smoothly and hopefully the same will apply to you. Good luck, Prof.
Thanks Christine for your encouraging remarks about the cataract surgery. I go in tomorrow. I am a bit of a wimp about any operation when I’m awake. So far as I’m concerned they can do whatever they like providing I am completely out The idea of them messing about with my eyes whilst I stare into a light is pretty frightening. However my 99-year-old mother-in-law had it done and it didn’t seem to worry her, so here’s hoping.
Best wishes Mark
Thank you so much for your kind remarks about my blog you are just the sort of people who I am writing it for and it’s great to think it might help yet another MND patient and his. Your husband sounds my sort of guy. I have managed to live with this thing noW for just over four yes and although I have very little movement left still enjoy life and have a purpose which is keeping my blog going.
Although we both might be suffering from’ flail arm syndrome’ you will appreciate that every patient is different. However, having said that I’m sure it would be worth your while working your way through the diary archive and taking out the medical bits which will give you a good idea of the prognosis for your husband. Of course I’ve included a number of other fascinating things which are nothing to do with MND merely to cheer up anyone feeling a little bit low.
If your husband would like to speak to me, or even Skype me, I will send you a private e-mail with my telephone number and would be very happy to discuss anything that was concerning him. How is he on the voice activation which is my salvation?
Tried to comment yesterday but perhaps because I didn’t do the mystery words . . . anyway, just a note wish you well and tell you that I’ve enjoyed many of your posts and SOME (lol) of the jokes. Thank you for perservering and for your skillfull, articulate writing. The appearance of the website is also beautiful.
I live in Pennsylvania, USA, where I ride the train and work with Ryan Kostelec at the Department of Environmental Protection. How coincidental that Ryan’s sister is married to your son! I am 51 and am recently diagnosed with ALS (MND). And so, my journey begins, but I know so many, including you, the great Cato, have faced this disabling disease and maintained, no, manifested, dignity and the noble aspects of our humanity.
Well done Don. You did get the mystery words right! I’m delighted that you made contact and will let my daughter-in-law, Kimberly know. Please feel free to contact me at any time, or if you have it available, Skype me. I will respond to your e-mail address privately with my telephone number.
I am so glad that you are enjoying the blog. It seems to be achieving the objective. It should pass the 2 million hits mark by the end of this month.