Tag Archives: Levodopa

Ladan update, 21/10/08

In my last update about Ladan I mentioned that I was hoping to try a Parkinson’s medication called Levodopa with Ladan because it has been found to reverse minimally conscious state in a number of people around the world. I had managed to find somebody who served on a coma recovery board in the United States who was a consultant in Argentina with experience in using the medication and this consultant was kind enough to give me recommended doses and other relevant information. When we came to starting the trial our doctor pointed out that the doses were higher than anything she had seen recommended for use in Parkinson’s disease and so, in case of any problems, we would not be able to go higher than half the recommended dose. We decided to continue as sometimes the lower dose has the desired effect, today was the last day on that dose and we are now back on a lower dose for a few days before stopping with the medication completely. I will write in more detail about this when the medicine has been stopped, and I will include mention of some encouraging observations, but there has been no obvious major change in Ladan’s condition as a result of the medicine to date.

Friday, just gone, was an important day for me. It was exactly one year on from Ladan becoming very ill, which turned into one of the worst events of my life. The following day, the 18th October, Ladan was rushed to hospital and was clearly struggling. Her condition worsened over the next 20 hours and the doctors where doing nothing at all. Eventually, after a lot of talking about whether they should do anything, they stepped in and prescribed a medication that she has an allergy to. It took a while before Ladan was on the right medicine and recovering… and even when her chest started recovering her treatment was such that she had terrible pressure sores all over the back of her body… and this was with myself and my mother-in-law being there 24*7 and pressing for Ladan to get the care she needed when required. There were other factors that made it an even worse day, and ironically the date had a personal significance which meant I wanted to spend some of it very peacefully relaxing with Ladan while enjoying my favourite soft drinks… but Ladan wasn’t well enough for it to be relaxing in the end.

This year, then, I wanted the day to be something more special, so I arranged to take Ladan back to the flat (where I sleep a little at night) for the afternoon. It was just the two of us this time. It was so peaceful. No mater how quiet you try to make things in the nursing home there is always a tv or a loud conversation, or some rushing in the hallway outside, keys jangling, trolleys rolling… always something you can hear… and the chair I am sat on right now, next to Ladan, is functional but not good for really relaxing in. Being relaxed with Ladan by my side, listeneing to some favourite tunes, looking through a few old photos, it was relaxation like I had not had in a very long time. The staff at the home also commented on how relaxed Ladan was when we returned.

The cold weather is setting in now and I am really hoping we don’t have to face another hospital nightmare this year. Right now, Ladan thankfully seems well and settled.

Ladan Update

My blog has become a little geekish over the last couple of posts, and I may have another very geekish post up my sleeve soon too, so I thought I should jump in with an update about Ladan as that is, after all, one of the main things for which a lot of people visit this blog.

The summer, if we are still calling it that, has been a very stable time for Ladan, no real fears of infection or other problems. It would have been nice to get Ladan out quite a lot but it has been a very wet summer, finding a good day has been difficult. There have, however, been about three trips out this summer, two to the flat where I spend some of the morning sleeping and one trip – a tiny bit further afield – to Ladan’s uncle’s house in the north of Gosforth.  Ladan’s uncle Shahram and his family regularly host Bar-B-Qs and meals at their home for the family and Ladan would often go there while she was living in Newcastle before we got married, indeed I visited there quite often while visiting Ladan up here. It was, therefore, a familiar environment to take Ladan to and also presented an opportunity for the family to spend time with Ladan in a more natural environment.

We are taking small steps forward toward getting Ladan out of the nursing home and into a normal house or bungalow, but things cannot move forward properly until we have a property, and that probably involves a wait of indefinite duration for a local housing association to have a suitable property available. Our case manager is fixing up a meeting with somebody who can help talk me through the various other options that might exist and their consequences.

A long while ago I mentioned a medicine called levodopa which I was hoping we could try with Ladan some time. It is normally used in Parkinsons disease but has been found to have a dramatic influence upon a small number of people who are in a minimally conscious state. There have been a few barriers to trying this medication, including a lack of clear information on how to use the medication in this situation and questions over Ladan’s stability. Ladan’s GPs have been very positive in this matter, as they have been over moving Ladan into home environment, and we now seem to have overcome most of the barriers, so it looks promising that we may be trying this medicine very soon. I will, of course, update this blog with the results of the trial… I might also write a fuller introduction to what it is all about in the next day or two… encourage me to do so if you would wish to read it.

The colder autumn and winter months are, generally, the ones where Ladan is at greater risk of developing chest infections. Over the last few years I think Ladan has had to go onto anti-biotics at least once during this period, last year we ended up in hospital twice and so I am hoping for a smoother ride through this winter.

I remain aware that many people are keeping Ladan in their thoughts and prayers and this a blessing for which I am truly very grateful and am deeply moved by. Ladan has remained very strong through this ordeal, rather than deteriorating she becomes increasingly stable, so please do keep those prayers coming if you can. Thank you.