Wednesday, 18 February 2009

A Rose By Any Other Name

The problem with going to a hospital you have never been to before is knowing how long it is going to take to get there, park and find the right clinic among the maze of corridors and waiting areas. For this reason we arrived for my appointment with a consultant neurologist at King's hospital muscle clinic fully an hour early. Polly and myself, with the boys in tow, settled down in the on-site café to kill time drinking coffee and playing Mario on Nintendo DS's.

My heart sank as sometime later we found the waiting area for the clinic packed with people and with a red L.E.D. sign flashing a message apologising for the delay. My appointment was for 11.30am but judging by the number of people waiting I'd be lucky to be seen before lunchtime. However, just as I was settling down to my book, and bang on 11.30, a doctor appeared and called my name, beckoning us all to follow him in to a consulting room.

Dr Rose had black thinning hair, a dark suit and a hearing aid. The hearing aid is significant because Dr Rose lip reads. Trying to lip read someone with Facioscapulohumeral Muscular Dystrophy presents a degree of difficulty for even the most accomplished reader of lips. Fortunately Polly was there to translate/interpret for him and the consultation proceeded smoothly. Dr Rose heads up a team of specialists in muscle conditions, including physio and speech therapists and a palliative care expert. Happily I will now have access to these people.

Often, in the past, I've been seen by consultants who have looked at me as something of a curiosity because of the relative rarity of my condition. It was a relief to see a doctor who is thoroughly versed in the ins and outs of FSH MD. In addition he has promised to wholeheartedly support our application to be rehoused and find funding for the robotic arm device. I have a follow up appointment with Dr Rose in 3 months time to see how I've got on with his team.

Tomorrow we have a meeting with the district nurse. Let's hope we make the same kind of progress.