Last weekend my family – sister and brothers –  all came to Morisset for a family get-together. 

Don spent all of Saturday at home, right through until 8.30 pm.  Then home again for the barbecue on Sunday.  (I think we are single-handedly keeping the wheelchair taxi solvent, these days.)  As a rule, when Don comes home for lunch I know that he will be ready to go back after a couple of hours so that he can go to bed — although I’ve noticed lately he is staying  awake and alert for longer.   So I thought those two days would have laid him low for a week, but both days he enjoyed every minute, and on Monday he was bright as a button and wanting to know when I’ve booked the taxi for him to come home again.

That Low Dose Naltrexone (LDN) treatment we have got him on may be experimental, and yes I do know all about the warnings of “no clinical trials” etc — but not only is Don vastly improved in his mind and spirit (and maybe strength as well but that’s another story), but the fatigue is not nearly as bad.  Fatigue, the great demon that plagues all MS sufferers regardless of the type or degree of their disability.  According to Professor Pollard of the MS Clinic at RPAH, it is the one common feature and the thing that every MS sufferer complains about.  Fatigue saps the quality of life enormously, because  it stops the person from doing so much, even when they have the capability.

Having Don home and able to participate in what is going on, and actually staying awake, is marvellous.

It had got to the point that they were not going to agree to Don coming home again.  Reason being that he has collapsed and become unconscious, and ended being ambulanced to hospital, no fewer than five times over the past six months – and every single time the collapse happened when he was sitting up in his wheelchair.   The last collapse was only a fortnight ago when he was home for lunch, and the nursing home were suggesting he’d better not visit home any more.

He has never had a collapse while in bed or in the recliner that he uses in the nursing home.  The only explanation seems to be that he can’t sit bolt upright for extended periods, any more.  Presumably the MS is making him unable to hold his head erect indefinitely, and so he slumps, and blocks off his airway.  I am no longer able to “transfer” him to a more comfortable chair, so he has to stay in the wheelchair all the time he is out.

I needed to trial something and see if it made a difference.  The Yellow Pages gave me a marvellous place called Hospital at Home, which sells or hires all sorts of equipment.

Here’s what I got for Don:

As you know, one effect of multiple sclerosis is frequent overwhelming fatigue, and the extended headrest makes it possible for Don to rest while he is in this chair.

Or even have a snooze while he is at home:

So we are now back to regular visits home again.