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How I went into care and lived!

or How I moved into residential care and improved my quality of life

John Major

Open Door - November 2002 pages 4-5

Helen Ley Court is the residential wing of the Helen Ley Care Centre. Since I moved there my life has materially changed for the better. This is my story.

My MS had been diagnosed in 1989 and after the usual false dawn of some three years I embarked on the sad journey to primary progressive. Before I moved to Helen Ley Court in February 1998 my life was at a fairly low ebb. I was in a relationship, which had nearly run its course, and I spent a lot of time alone. I needed to get part of my life back before I expired from sheer tedium. Fortunately my social worker had heard of Helen Ley Court and had kept the phone number. She gave it to me and I rang it.

The Court provides residential care to ten people with MS aged from 35 to 90 and they were happy for me to stay for a fortnight while we weighed each other up. The verdicts were favourable and I moved in.

Moving was easier than it usually is as I needed to bring much less than a houseful and there was plenty of support at the Court to help me organise the stuff all people need. You know, TV and video, CD player with 'jukebox' and remote control, air-conditioning, that 'must have' for people with MS, and computer with access to cyberspace. The centre allows me to use their fax and photocopier for a modest charge.

Fortunately I could still handle my personal care needs most of the time, so sussing out the domestic arrangements wasn't too difficult.

Since being at HLC I have been wheelchair bound though I can transfer to my armchair and taxis and my car, with difficulty and care.

There was still a sense of being cut off from real life, and of life passing me by. At first it still felt hard to do anything though that feeling has reduced slowly and steadily. Gradually I got to know one of our local taxi firms, learned to use the local council's 'Flexibus' for disabled people and even managed to reconcile myself to the 'sack of potatoes' syndrome on the minibus hoist.

Finally my thoughts turned towards driving myself again after a break of ten years. It took a year and a half to understand the intricacies of manual controls and rooftop hoists, to say nothing of the wealth of possibilities Motability offers disabled people. But once the process was complete I did take delivery of a Motability hire car.

It's a great feeling when I press the accelerator ring, the gear changes and the car goes vrooom! It does something to my soul; I'm a person again and I no longer fear becoming some poor schmuck stuck in a wheelchair.

Fatigue stops me driving very far or being very adventurous. There's always the possibility of being unable to get myself out of the car, but it's only happened once and I now travel with a banana board. Catheter and leg bag problems have so far been entirely manageable.

It's exasperating how people assume that having a car means I'm able bodied again and can drive as far as I'd like. But doubtless they have their own problems. I'll worry about mine, but not theirs.

Perhaps inevitably I became involved in MS politics, though I only joined my local MS Society branch when I discovered that Helen Ley had founded it. The West Midlands regional committee co-opted me and I now edit their newsletter. More recently I joined the Society's Research Network and hope to play a layman's part in research.

It was a great experience to become a delegate to the European MS Platform Congress in Dublin earlier this year, not least because it was the first time I'd flown anywhere or stayed away from home (apart from hospital and respite) for ten years. Helen Ley Court helped there again. I wasn't brave enough to go on my own - one of the senior carers accompanied me.

It was a pleasure to attend the MS Society's MS Frontiers conference where leading academics told us about their work. Memorably I found myself asking a question of the professors of Neurology at Oxford and Cambridge. They were contributing authors to the 1997 edition of McAlpine's 'Multiple Sclerosis'. I wrote to both of them afterwards to thank them and received graceful acknowledgements.

On libertarian, as much as medical grounds, I got involved in the campaign for medical use of cannabis. My high points were appearing on the front page of my local paper with our MP and others taking tea at Helen Ley Court while we discussed the merits of our case. The results were he signed Paul Flynn MP's Early Day Motion for Medicinal Use of Cannabis (it's not yet law) and sent me a copy of the House of Lords cannabis report (I've read it).

I also attended a press conference in Parliament to publicise the case of a man who was jailed for twelve months (in the UK!) for medicinal use of cannabis. We achieved very little but it was a very enjoyable day.

I suppose the climate of opinion is changing gradually but it's a slow business. We live in hope - with MS you have to. But there are some good people involved and it's been a pleasure to meet them. I support a small organisation called thc4ms that distributes chocolate impregnated with cannabis free to people with MS(1).

It's hard to see why I couldn't have undertaken these activities before moving to Helen Ley Court, but the fact is I didn't.

The residents at Helen Ley Court are a diverse group with little in common apart from their MS. Looking around I sometimes find myself wondering "how did it happen that I came to live here?" Of course, that's a dumb question, I know how. The real question is what I'm going to do in the future.

At the practical level Helen Ley Court has provided a wheelchair friendly environment and good meals, which is important when so many other pleasures are lost. There is also readier access to various therapies. I've so far had the benefit of physiotherapy, speech therapy, homoeopathy, massage, yoga, reflexology and occupational therapy. It's a pity we still have to pay for most of them but we don't have to worry about transport.

MS remains essentially loss but the fact we lose a lot is not the same as losing everything. It's necessary to focus on what we can still do rather than lament what we can't. Helen Ley Court's care and support enable me to get back some of what MS has taken away.

If you think it's impossible, it is; but if you think it's possible, it may be.

Footnote

(1) thc4ms comments:

We believe this is only possible due to people with MS refusing to plead guilty in court for possession of medicinal cannabis. Several recipients of our product have been found not guilty in various crown courts across the UK.

There will be unavoidable delays in the service due to the high uptake following several magazine articles.

Whilst thc4ms endeavours to give canna-choc free of charge to people with MS, this would not be possible without voluntary donations to the project.

Note

Since this article was written, thc4ms has been forced to stop supplying canna-choc and the individuals involved prosecuted.

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