Long haul flying with Parkinson’s

Next week the amiable husband and I travel to Australia for a month of warmer weather, staying with the lovely daughter in Melbourne. As we start the packing I realise that this is the first time I have been on a long haul flight since taking the dopamine, medicine which requires taking at the same times daily. Obviously as Australia is 11 hours ahead of us it will need a few alterations to the schedule so it is going to be a bit of a learning curve! During our trip we will be spending a few days in Tasmania, visiting the beautiful Wineglass Bay and Bruny Island.

Wineglass Bay, Tasmania

Wineglass Bay, Tasmania

Recently I joined the walking group on a seven mile walk close to the South Downs (but with a promise of not climbing to the top). However, we were walking at quite a good pace and were too early for our pub lunch so agreed to add an extra loop. We didn’t realise until it was too late that the path climbed steeply nearly all the time. Half way up I became aware that my left arm, which had been swinging well, had stopped moving and didn’t know what to do with itself. I then realised that the dopamine had been all used up before the next pill was due! When I looked at my Fitbit it told me that I had walked the equivalent height of 77 stairways, no wonder it was a bit of a struggle!

I always look forward to Saturdays and my day in London, the morning shopping and the afternoon at the Dance for Parkinson’s Class with English National Ballet. Recently I began to think I needed some sort of shoes to wear but not ballet pumps as my left foot tends to curl up a bit in them. It was suggested that I should get some soft shoes with a strap more commonly used by dance teachers. Armed with lots of advice I visited the famous ballet shop called Freeds near Trafalgar Square. What an amazing place, I could have sat watching the ballerinas there who piroutted and twirled on their pointes all afternoon, fascinating. I left with my shoes which will be ideal once worn in a bit and very soft and supportive.

The new shoes for ballet.

The new shoes for ballet.

As storm Doris rages around us it seems very strange to be laying out summer clothes ready to pack. Knowing that Melbourne can see all four seasons in a day it will require some careful thought!

Old and new research to help treat Parkinson’s

In 1961 I was staying in Edinburgh with friends of my parents when newspapers began publishing headlines about a new drug that would revolutionise the treatment of Parkinson’s. The tabloid papers focused on side effects which could include obsessional traits such as sexual behaviour, gambling or shopping. The husband of the family had Parkinson’s and because he had a bad tremor I kept away from him as I didn’t understand his illness and it seemed very scary. That drug was levadopa which is still the gold star treatment. Over the years it has been refined considerably and provides a reliable source of dopamine with less side effects.
There is a lot of research currently under way which, hopefully, will bring new treatment for sufferers. It includes deep brain ultra sound therapy to help those whose tremor is particularly bothersome. Scientists are also looking at the theory that Parkinson’s possibly starts in the gut. Another area being explored is that existing drugs could be repurposed for treating the disease. This week there was even an article about possibly using Sharks liver to treat some of the symptons!

Research is very necessary but costly, fund raising is an ongoing challenge. On April 17th this year there is to be a concert at the Royal Albert Hall in London called Symfunny No2. The first concert held last year was a great success and already stars such as singer Katie Melua, comedians Jack Dee and Josh Widdicombe, the team from “Sorry I Haven’t A Clue” and the Brighton Philharmonic Orchestra and Choir have signed up to take part this time. The idea for the concert came from James Morgan, a music producer, composer and conductor who was diagnosed with young onset Parkinson’s at the age of 42. He lives in Sussex and came to talk to our local group of Parkinson’s UK recently.

Symfunny 2 at the Royal Albert Hall in April

Symfunny 2 at the Royal Albert Hall in April

We saw the New Year in with friends at a murder mystery party set in Roman times. We all dressed up and had a great time even though after the first couple of rounds nobody could remember what was going on!

Murder Mystery New Years Eve.

Murder Mystery New Years Eve.

Despite the bitterly cold weather, and the ongoing problems with Southern Railway, during January, we managed to see the Nutcracker at the Royal Opera House, a real feel good ballet and Red Shoes at Sadlers Wells. Saturday classes have restarted with English National Ballet in London and we are focusing on the original Giselle production this term.

Hopefully I will be allocated a new consultant soon, I haven’t seen a doctor since last May!