Give the local Parkinson’s Group a “go”

It is nearly seven years since I was diagnosed with Parkinson’s. For the first few years I had very little to do with the local Parkinson’s support group apart from joining the jazz choir, to which I still belong. As time has gone by I have begun to appreciate how much help they provide for sufferers and their carers. The “Shakers and Movers” magazine, produced every 2 months by the local support group gives details of exercise classes and communication skills groups. The monthly branch meeting has visiting speakers, musicians and offers many other activities. I recently joined the committee and have been impressed by everything that is available and the dedication of the local organisers. It’s never easy to go along to a group the first time but it is worth giving it a go; you might be very pleasantly surprised!
Regular readers of the Blog will know that my favourite Parkinson’s new skill is Dance for Parkinson’s run by English National Ballet, originally in Kensington but to be in their new headquarters in Canning Town, hopefully later this year. This has not been popular with the “dancers”, I just hope it works.  Currently about 20 of us meet in a room at the Royal Albert Hall once a month for a fabulous class. This month we had the opportunity to watch Cinderella “in the round”, wonderful, just like attending a blockbuster film! As we had been learning some of the mime from the ballet it was a  fabulous occasion.
Back at home the Lovely  Daughter and Handsome Henry have been able to admire the lush green of the English countryside. It would be very nice now if we could have sunshine as well to convince them of the benefits of returning to the UK….

The 40+30 Birthday Cake cutting!

With  a 70th and a 2nd birthday to celebrate this month we have been busy.

 

Advertisements

The Optimist

Earlier this month I went to hear Paul Mayhew Archer talk about his life with Parkinson’s at the Komedia theatre in Brighton. It was the first time I had been there for 50 years and I felt very nostalgic when staff stamped your wrist; it reminded me of student days at discos.
Paul quickly had the audience in stitches as he told anecdotes of life with Parkinson’s interlaced with stories of his career. He is probably best known for co writing the “Vicar of Dibley” with Richard Curtis and comedies such as “Mrs Brown’s Boys”. He decided when he was told he had Parkinson’s that he was going to be an optimist and look for humour in every day life. The hour of comedy sped along with much laughter. Paul decided to go on tour with his show following success at last years Edinburgh festival, certainly the audience loved it!
I asked him how he was getting on with writing a “rom com” about a romance in a Dance for Parkinson Class. He chuckled as he explained that he could write the first two parts but was having trouble about what happened next,
We all left the theatre feeling uplifted!

Paul Mayhew Archer and I at The Komedia Brighton.

The local Parkinson’s group held a pop up coffee morning recently. It is a great idea. Anyone wanting to find out about or share experiences of the  condition is invited to come along for free coffee and cake and chat.

The Lovely Daughter and Handsome Henry, plus Billy the 6kg cat, are now settled back in Sussex with us. Suddenly being awake early in the morning is no longer a solitary time but an opportunity to play with toy cars and Thomas the Tank Engine! My fumbly fingers may find nappy changing tricky but I can play endlessly on the carpet with a 2 year old toddler!

A simple act of kindness in Parkinson’s awareness week

Recently it was Parkinson’s awareness week and lots of amazing people were raising money to help find a cure and make the lives of the 127,000 UK sufferers a little easier.
A wonderful story caught the attention of the social media and  went viral.
A man was travelling in Wales and wanted to get off the train but he suddenly froze, unable to move in any direction. A young girl saw his difficulty and asked if he needed help; she knew a little about Parkinson’s and was able to give him the support he needed to get off the train at his stop. The power of the Internet made it possible to find  the name of the student and bring the two together on television in an emotional meeting. It could have been easy for fellow travellers to assume that this was someone who was drunk, a situation that can often happen to people with Parkinson’s. This charitable response will hopefully encourage more people to be good Samaritans.
At the beginning of April the Dance for Parkinson’s class met in the Royal Albert Hall and discovered a camera crew from BBC London News waiting to record the session. We enjoyed another great meeting learning about the ballet Cinderella with lots of mime and music which was broadcast that evening. I think it gave all the participants a real boost and we left feeling energised and ready to fight our everyday challenges.
A sponsored walk was held locally this month in a nearby park and raised more than £800 to help fund local Parkinson’s UK (PUK) projects.
The local PUK group brought a group from a nearby nursing home to the April meeting, following up on visit made a few weeks earlier. It was lovely to see them again. The ukulele music and sing along was popular with all and hopefully we can continue this initiative, reaching out to those who need some help to access support.
Our family is about to see some big changes!  The lovely daughter and Handsome Henry are set to return to England after twelve years in Australia. It will be lovely to share their lives more and be there to help when needed. Bille the cat has arrived first, having just collected him from Heathrow after his long flight; he will need lots of time to rest and adjust to his new surroundings.

Sussex bluebells.

Spring is definitely here. I helped lead a walk through the bluebell woods this week, a beautiful experience. Let’s hope that the sunshine of the Easter weekend continues.

 

Challenges of Parkinson’s

We have been home from Australia for a month now and, at last , we are catching up with appointments, jobs to do and friends.

The local Parkinson’s UK group held it’s AGM  this month and I am now confirmed as a committee member. They would like to reach out to members who are in later stages of the condition and look at ways of helping them. With this in mind we recently visited a local nursing home to chat over coffee. As would be expected we talked to any residents who were near us! Their war experiences were the favourite topic and I learnt lots about life as a child evacuee. We plan to offer transport to one of the monthly meetings.

At the beginning of the month I went to a Dance for Parkinson’s class in the Royal Albert Hall. They had cleared a bar on the 3rd floor and we focused on Swan Lake. Lovely music of course and we had a pianist. We learnt some of the gestures and linked together a series of movements, lots of concentration involved! It was a sunny day and the window was open. What an amazing view looking directly across to the golden statue of Prince Albert. I look forward to the next class on Cinderella.

The golden statue of Prince Albert

I watched the recent two programmes on BBC2 entitled “A Miracle Cure?” about a research project for Parkinson’s which involved complex brain surgery and months of drug infusions with a protein (GDNF) that supports the survival of brain cells including the cells lost in Parkinson’s. (GDNF is Glial cell line Derived Neurotropic Factor). In many ways they showed a possible way forward but I found it all rather depressing. Things are obviously not about to change in the near future.

At the beginning of May we are going to see Paul Mayhew-Archer present his one-man show “The Incurable Optimist”. Paul is well known as a co writer of comedy programmes such as The Vicar of Dibley. He was first diagnosed about the same time as me so it should be interesting and funny. Having heard part of his act at the Edinburgh festival, and seen him talk about his life on television,  I am looking forward to it!

Whilst I am becoming more aware of the challenges of Parkinson’s I am still able to carry on as normal with a few adjustments. I still drive but only locally and I accept I might need a nap some afternoons!

The beginning of Spring is always an uplifting time …… I always enjoy walking through the bluebell woods.

What’s new in Parkinson’s?

There is a lot going on with Parkinson’s and research currently including two programmes on BBC2 starting at 9pm today, February 28th, which look at the drug GDNF delivered directly into the brain. Encouraging signs of a breakthrough perhaps?

One morning recently I received emails from both Dance for Parkinson’s in London and the class I visit when in Australia both telling me about the World Parkinson Conference in Kyoto, Japan, in June. It aims to give hope and raise awareness of the disease globally. Traditionally it was believed that if you folded 1000 origami your wish would come true. It has become a symbol of hope and healing during challenging times. Members of the Parkinson community who love to dance and move have been invited to create a dance piece inspired by the origami cranes (paper birds) in the art installation “Soaring with Hope”. Both groups that I belong to are submitting videos for this challenge which is exciting news

One of the main reasons we were in Australia at this time was to spend a week of looking after Handsome Henry while the lovely daughter was working in New York. Amazingly he slept every night and we were feeling a bit smug as we prepared to hand him back when crash, he fell over with us standing next to him and a large lump appeared on his forehead and a streaming cold began. A comb over was order of the day !

On the final day of our visit “Down Under” we spent the morning in the beautiful Botanical Gardens in Melbourne which is my favourite place to go. It is so peaceful and shady.

In the Botanical Gardens, Melbourne, with Handsom Henry.

We then began the long journey back, returning on the new Boeing Dreamliner which flies from Melbourne to Perth and then a seventeen hour flight to London Heathrow. I am not sure I would travel on that route again, it was exhausting! We arrived home to find daffodils in full bloom and beautiful sunny weather; not such a bad place to be!

Frustration of fumble fingers

Happy New Year to all my blog followers!

My visit to the Parkinson’s Nurse early in the New Year went well and no need to up the medication which was pleasing. The problems of the dystonia in the left foot are no worse and, indeed, I think I can manage that better than when it first occurred.

The local Parkinson’s UK branch is an active and well run group with more than 150 members. I tend to use some of the activities on offer but mostly continue with Pilates, swimming, walking and badminton as I have done for many years. I have been asked if I would be interested in joining the local committee and have agreed, should they need another volunteer.

I have noticed that there is a pattern to my weekly life and I think this routine helps my confidence and enables me to carry on quite happily. Change is trickier and can cause anxiety.

I am now back in Australia for 5 weeks and have become very aware that it is more difficult to project a confident image. I would love to be an all singing, all dancing grandma to handsome Henry but sadly there are many things I find difficult. He is a very wiggly little boy and doing up straps on push chairs and high chairs is well nigh impossible. Nappy changing needs speed and dexterity which I don’t possess any more. Stories and playing on the floor are fine and persuading a reluctant eater to take just one more mouthful is manageable. Luckily the amiable husband has all the attributes I now lack so we can still make a good team.

Outside the amazing Rod Laver arena at the Australian Open tennis.

Away from all that we have been making the most of Australia’s summer including a trip to the Rod Laver Stadium to watch the tennis, the first of the Grand Slam. We saw the Ladies semi finals in searing heat, luckily the roof was closed and the air conditioning soon made it wonderfully cool. We were impressed by the stadium and good organisation from all the officials.

The cooler weather should be here before this evening so we can be out and about at the Botanical Gardens, the nearby fantastic new play area with water features and making sand castles at Black Rock. As you can tell lots of Grandparent treats, wonderful….

Into a seventh year with Parkinson’s

The New Year will start with a visit to the Parkinson’s Nurse and time for me to think about what has changed and where I am now. The tremor has not got any worse which is great, not many people would know on meeting me that I had a chronic illness. Tiredness is my worst issue mostly brought on by my poor sleeping problems. We recently had drinks with friends and I managed to doze off in the middle of a gin and tonic, it was only early evening too!
Anxiety is a problem for many Parkinson’s sufferers and this is something that does cause me issues and I know I must try to fight this problem.

I think it is important for me to try and keep as independent as I can and travelling to London to attend Dance for Parkinson’s classes has been a good opportunity to work out trains/tubes and buses for myself. Sadly we had our last class at English National Ballet recently, tears flowed as we talked of the joy that these special classes had brought us, hopefully the New Year will bring more information about the company’s move to Canning Town.
Our last event was to the Coliseum to see Nutcracker, a beautiful production.

The ballet shoe Christmas tree at English National Ballet.

Our choir, aptly named Good Vibrations, sang at a local Christmas Tree festival recently. We have really come quite a way since we first got together and the church acoustics enhanced our performance. We have a fabulous choir leader and jazz pianist which helps us all.

Parkinson’s Christmas tree was one of over 60 at Cuckfield Christmas tree festival.

Christmas is all about children and having the the whole family together was very special. Handsome Henry loved opening presents and playing with the wrapping paper. Eighteen months is an age where there is a huge learning curve with language and movement developing rapidly. He has become an expert climber and explorer so careful watching was the order of the day! Soon we will follow him back to Melbourne and some warm sunshine which will be very welcome.