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1 May 2009

Posted by DMC on 1 May 2009 in Diary |

A red letter day in more than one sense. Most important of all I picked up the third prototype of my feeding frame. My larger elastic waistband trousers arrived and so did my kilt. I collected the feeding frame late afternoon and therefore I’ve had no time to examine in it detail.

The larger elasticated waistband trousers are a great success. With a bit of a struggle I can get them up out over my shirt and vest and now easy to push down. Each as they are basically to wear in my head office in the summer when I shall just wear a loose shirt and no vest these trousers will make life easier for me. The kilt I shall try on tomorrow.

The other important event which took place today was that I crystallized my SIPP, or in plain language I decided not to risk any further collapse in the stock exchange and sent my forms off to the pension provider to freeze my SIPP so that I can take my 25% tax-free lump sum. Much less than it would have been 12 months ago but nevertheless still worth having.

Reverting, for the moment, to my feeding frame, I have been horrified by the cost of specialized equipment for the disabled. For example, an adjustable table — not so very different from the one that I bought for £120 is offered from a different source for around £900. Similarly, which a device to catch cigarette ash can cost over £300, when, with a little ingenuity, it’s possible to make something that does the same job for a few pounds. Viz, touch my hands-free cigar holder made from toilet roll holder.

Ever since I was diagnosed with MND and started to require specialized equipment I have searched the net for some central source of second-hand gadgets and equipment at reasonable prices. No such place appears to exist. If it did I would very much like to hear about it. If it doesn’t, why don’t several of the big organizations get together and jointly fund a central distribution depot. The Disability Association together with other associations for MND, Stroke victims, MS and ME sufferers, and the like, could spearhead this initiative.

All of these associations are uniquely placed to know when one of their own dies and could discreetly approach the surviving partner offering to remove all the specialized equipment that has been purchased to make the life of the patient more comfortable. Most surviving partners would be only too pleased if this were done swiftly so as to remove daily reminders of their loss. I’m not suggesting that this equipment should not be paid for, although I’m sure, that in some instances, the surviving partner would be only too happy to donate it to a good cause. If a non-profit-making body, such as I suggest, was set up, this equipment could be sold on, at a modest profit, to another deserving patient, who might well not be able to afford new equipment at the exorbitant prices being charged by some of these so-called specialist equipment bodies.

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