Parkinson’s disease

New hope for those with Parkinson’s Disease?

Trials for new drugs are being carried on all the time which gives hope to those with progressive, and incurable diseases.

Today I was sent a link to The New Scientist which reports on a new drug working well with some late stage sufferers of Parkinson’s disease.

The results of a small trial of 12 patients has been presented at the Neuroscience Meeting 2015 in Chicago this weekend,  which seem too good to be true.

“We’ve seen patients at end stages of the disease coming back to life,” says Charbel Moussa of Georgetown University Medical Center in Washington DC, who led the trial.

One of the patients, Alan Hoffman who was diagnosed in 1997, says:

the nilotinib trial changed his life. As his disease worsened, he had many falls, needed his wife’s help to get out of bed and he considered taking his own life. While deep brain stimulation helped treat the rigidity of his body, it wasn’t a cure, so he enrolled in the nilotinib trial. Within a matter of weeks, he was able to make the bed, and read a book for the first time in years.


Further bigger trials are called for by experts in the field.

In the meantime

Sadly, the effect doesn’t last, and when the volunteers were taken off the drug at the end of the trial, they started to deteriorate again …. Many have since tried to get hold of the drug themselves, but it costs a whopping $10,000 a month.

Only time will tell.

laying against time – life with Parkinson’s disease

I mentioned this programme on Facebook yesterday and then watched it myself in the evening.

It was a very interesting report of one person’s determination to carry on living her life as she always had done, writing and performing her music all over Europe. Barabara Thompson , a celebrated saxophonist has had Parkinson’s disease for twelve years and has managed it with drugs, determination and the support of her husband. The documentary film makers followed her over a period of five years and there was footage of her playing and writing her music, managing her ‘down’ time and discussing her treatment with a Parkinson’s nurse and doctors. There was no mention of her trying any other means of controlling her PD, such as physiotherapy or Conductive Education.

There was a wonderful scene of her playing with  a group of people with PD who were singing a song about having the disease, composed by a member of the group.

She is still performing when she can despite the difficulty of not knowing when she will be physically able to and lives in hope that a better treatment will soon be available.

I would recommend watching it – there are six more days to do so on BBC iplayer and by following the link above.