Thursday, January 14th 2010

Preparations for reduced mobility

A sure sign that the holiday season is well and truly over is my increasing involvement via e-mails, phone calls and meetings with the healthcare professionals supporting me. Over the past few days for example I’ve been discussing hoisting equipment, looking at increasing hours on my care package, and discussing toileting issues with the district nurse!

I’m getting weaker as the weeks go by so we are trying to put things into place to prepare for the eventuality of not being able to stand up and support my own weight. I’m okay at the moment provided I don’t try to stand up for very long but I know from past experience how quickly things can suddenly change with MND. We need to make sure that we have both the right equipment and level of care in place.

I’ve been in some discussions this week with my OT and Debbie, a senior member of my care team regarding lifting and handling equipment. What’s complicated the issue is that I still don’t have my ground floor extension built with its purpose-built tracking installed in the ceiling. The disease is moving ahead regardless and I now face being more or less trapped upstairs for some months to come. What this is going to mean is that I will need special hoisting equipment in all of the rooms I’m using and that equipment will vary from room to room. So far example in the bedroom I’m being told I need a goalpost hoist which will be used to lift me out of bed and into the glide about chair. This wheeled chair will then be moved into the bathroom. A ceiling track will then be used to transfer me to my bath lift (I was quite forceful in not giving up my right to have a bath as it’s one of the few luxuries I have left). After dressing I would be moved to the study in the glide about chair and then transferred to my high-back office chair using a mobile hoist. Phew, that’s a lot of transfers! And that doesn’t even include transferring me onto the stairlift should I need/want to leave the house. And all this because the nerves controlling my leg muscles are dying. At times I really hate this disease! Anyway I’ve now been informed that the goalpost hoist and mobile hoist have been ordered so they may even arrive next week. As for the ceiling hoist in the bathroom my OT needs to speak to the grant officer to see if the cost can be added to my DFG (Disabled Facilities Grant).

I’ve had to put some words together recently in the form of an e-mail to Rachel my social care manager as a kind of justification for why I am requesting additional hours. It’s a bit unusual because I normally just have a care package review and then after describing my current state of health and level of difficulties my social care manager and I agree on what extra hours are needed and then she approaches a representative on the Continuing Care review board. What has made it even stranger this time is that the whole idea of block hours was hers. In fact at first I wasn’t too keen on it but it was only after chewing on it for a few days and then discussing it with Debbie that I slowly came round to the idea. Anyway as of today Rachel is waiting to hear back on whether funding is available. Hopefully we should know in the next few days.

I had a visit from Anita, my very cheerful district nurse this morning. It was rather timely really as I had found it very difficult to get myself into an upright position on the edge of the bed this morning whilst I was on my own and needing to visit the bathroom. Inevitably then the topic of conversation soon turned to issues around the difficulty of getting up in the night and going to the loo. She is going to arrange for me to speak to a specialist on that kind of thing so that I can be presented with the various options. Enough said! Actually today’s meeting was a bit sad as Anita has told me that she is leaving and going into teaching so this will be her last call. People don’t seem to stay in their job roles very long these days. Just as soon as you start to feel comfortable with somebody they move on.


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