6 October 2010
Another milestone in my blog. It passed 800,000 hits today and now looks destined to reach the million mark around the end of this year, having steadied down to a fairly constant 2500 hits each day. I just hope it’s still reaching the right people, both patients, family and carers.
Another great excitement today, Hollys, the wheelchair people, delivered my electric wheelchair. I drove it out of the office, up the ramp at the front door and into the bedroom then reversed it and drove into the study all very comfortably with no great alarms. I think Mike and Matthew, the guys who brought it, were impressed with my driving skills. It’s certainly a brilliant chair with front wheel drive it can turn on a sixpence. The key is not to go too fast to start with anyway!
The seat rises and tilts which means that I should be able to get into a position where I can move from this chair onto my gutter frame, in the same way as I do from the UpEasy cushion. So, as long as I have enough strength in my legs and arms to use the gutter frame this is the way I will move from my office chair to the wheelchair and from the wheelchair to my study chair. When I am completely wheelchair bound and no longer able to use Â the frame I suppose we will have to consider being hoisted into, and out of, the wheelchair into whatever chair I wish to sit in.
As both my hands are pretty useless, and although I can operate the chair smoothly using my almost useless right hand, in effect moving it through my arm, forwards backwards and sideways, the boys are going to set me up with a chin control unit so that when it becomes too difficult to use my hands, or my arms are too weak, I should be able to manoeuvre it, just as easily, using my chin.
This wheelchair will give me a degree of independence. For example, I will be able to go to the Cricketers, pub next door, and had lunch with my friends, without being put into a car or wheeled in a mobile wheelchair. In the summer, if I’m still around, I would be able to drive down to the village green and watch the cricket and so on. Certainly, when we have lunch in the garden and guests I would be much more mobile and be able to move around and join in instead of being stuck in one place.
I listened today to the last programme of Voices of the Family, from the Philadelphia radio station which is going to interview me by telephone next Monday. I have ascertained that the presenter of the programme is one Doctor Dan Gottlieb who recently went to Taiwan where he was awarded “The 12th. Fervent Global Love of Lives” medal. It is said that this medal has been recognised by many international media as the “The Taiwanese Nobel Prize for Love”. I assume, in Dan’s case, love of his fellow man. This medal has been awarded to 182 recipients from 37 countries in the 12 years since it was established. Listening to Dan interviewing people on his last show I found him to be sympathetic and am therefore looking Â to my own interview.
Congratulations on the continued success of your website. 800,000 hits for a specialist subject like MND is very impressive indeed. I have motor neurone disease too and maintain a blog to raise awareness and share my experiences, so I know how hard it is to build up traffic and maintain a loyal audience.
I received a new wheelchair a few months ago as well, although mine is attendant controlled. Sadly I have now reached the quadriplegic stage so would not easily (although probably not impossible) be able to control an electric wheelchair. I know exactly what you mean though when you talk about the independence it gives you as I am quite helpless once my carer has positioned me somewhere. I would love to be able to move around and see things outside of my field of vision.
I met Mark Cato for the first time just now, by listening to my favorite local Public Radio program for the past couple of decades(!!), “Voices in the family”. In this longitude it is just an hour past midday, so I am certain Mr. Cato could not possibly read this until Tuesday if at all.
I, too, have never ‘feared’ death. I can’t say why, really, because I certainly have had times of acute fear in my six decades of life… surely part is genes, part is parent models, part is education, etc. etc.
But I think it can be *developed*, just as cognitive behavioral therapy can give people some (non-drug) control of chronic depressive episodes (CBT as they call it at least in this American psychological treatment culture). NB: I am not speaking AGAINST neurotransmitter drugs, because I think their creation and refinements are actually beautiful; but reliance on drugs is often a risky business, and I would say this even if I weren’t of the “treehugger” school in which “Throw it away? Hey, don’t you realize it? There IS NO ‘AWAY’.” is as essential a truth as is the inevitability of death.
So for Mark Cato’s writing agenda:
1) do you have any data on the proportion of people who honestly attest to no fear of death vs. those who do? and
2) although it is easy (IMHO) to live life untroubled by such a fear â€” one must or ought to consider the impact of one’s own death (and even of living with one with such an attitude) on those close to, dependent upon, loved by and in love with said fearless types. How do you address this?
NB: I have not read your writings, nor those of Dr. Dan Gottlieb’s other guest on the WHYY 91FM radio show today.
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