I have been reading a lot in recent blogs and questions that refer to problems with bladder and bowels. I therefore thought I would write about this issue as a blog, since it is something that affects all of us with AMN.
The first thing to say is that continence affects most people with a neurological disorder, whatever it is. Patients with Multiple Sclerosis or Parkinson's are people who come with continence problems just like ours. So we are not alone.
Continence - or the lack of it - is a subject that patients fairly naturally don't want to talk about a lot. It's OK if "getting caught short" is the kind of joke that might feature in stand-up comedy routines, but we know that the real thing is no joke. And managing the the problem is something we all develop routines about.
With me, I know not to be far from a toilet first thing in the morning after eating breakfast. The Saturday morning shop which Sheina and I do quite early is an example. I don't eat anything before I go out, just to be on the safe side, so I could eat a horse by the time we get back home.
What I have realised is that the issue of managing continence seems to be something that has received insufficient attention from the medical community and the medical technology specialists.
It's also an issue that we as patients need to speak up about a lot more. So I was particularly pleased when a newspaper columnist that I read each week brought the topic to a national readership. The writer I refer to is Melanie Reid, a columnist for the Times. Two years ago, in April 2010, Melanie, who was a keen horsewoman, suffered a dreadful riding accident. It left her, in her own words, going "in the space of 15 minutes [..] from someone whom I considered to be a fairly high-achieving mistress of her universe to what looks like a tetraplegic".
In the face of such a terrible event, Melanie has managed to keep writing a highly engaging weekly column. The column has become her story of how she has dealt with, and continues to cope with what had happened. In one of her columns she railed against the lack of medical progress in dealing with urinary and bowel incontinence, which, for her, has suddenly become a major issue.
Anyway, I thought I would mention Melanie as a way of getting a little into the continence discussion. Her columns have become a must-read for me each week, as her courage and lack of self-pity in the face of such an awful shift in her life circumstances is truly inspiring. I hope you find them so as well. I plan to post a few for you to read, and next time I write I will use the article she wrote about bladder and bowel issues. Meanwhile, here is a link to the very first piece she wrote immediately after the accident. Note that this downloads a Word document when you click. Let me know if you have any difficulties opening it.
All the best