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.

End of an era for Dance for Parkinson’s at English National Ballet headquarters

November has been a busy month for our Dance for Parkinson’s Class run by English National Ballet (ENB). We were all surprised and delighted when we were given our own tee shirts with Dance for Parkinson’s on the back, designed by one of our talented members. Sizes seem to equate to tiny ballerinas. I may normally be a “small” size but needed a “large” for these!

Our own tee shirt!                          

Recently we had a wonderful workshop led by David Leventhal from the Mark Morris Dance Group in the USA, everyone enjoyed the new challenge and rose to the occasion. One of the best things about all of these classes is that no one is excluded, adjustments can be made to enable everyone a chance to be a “dancer”.

Classes in the historic Markova House, near the Royal Albert Hall, are coming to an end. ENB are building their very own centre in Canning Town which is due to open early in the New Year. However, the new site is a long way from where we are now and folk with Parkinson’s tend not to like change or want longer journeys. What will happen next we will wait to find out. There may be an opportunity for a monthly class in the Royal Albert Hall. Our last class here will be in mid December and we’ll party afterwards! Later that week the group will go to see “The Nutcracker ” at the Coliseum.

A busy month too for the choir (“Good Vibrations”!) as they prepare to entertain the members of the local Parkinson’s UK at their monthly branch meeting; we have several jazz songs for the occasion from “I won’t Dance” to “Besame Mucho”.
We are also singing at a Christmas Tree festival in a nearby village church. We sang there last year, we must have done well enough to be asked back again! The building is beautifully decorated with sparkling, glittering trees from various local groups.

Not much really to report on my actual Parkinson’s except after 6 years of no health issues whatsoever I have succumbed to a chest infection and hacking cough which has taken a long time to go.

I must need some sunshine, we are back to Australia in January! Before that though Handsome Henry, now a very active toddler who wants to climb everywhere, is coming back here for Christmas, exciting! Hide the China!

The changing of the clocks, impact on a poor sleeper with Parkinson’s

UK clocks went back an hour last Sunday, back to GMT. All over the country people were enjoying an extra hour in bed, snuggled under duvets and sleeping soundly. Not me however, I was awake at 4.30am which is too early for the day to begin but all that Mr Parkinson’s was going to allow me. A little massage, putting on alternatively Birkenstocks and trainers and a bit of work out with the spiky ball sorted out the dystonia in my foot. What now? A back dated podcast of Desert Island Discs from 2011 kept me entertained for a while followed by answering any emails and looking at any baby photos from the lovely daughter Down Under. We currently have a wonderful paper boy who delivers the newspaper by 6.45am so I can catch up on the day’s news before taking tea to the amiable husband. It’s a bit like permanent jet lag! I have tried all the “good bedtime” routine without much success. I once read an article by a Parkinson’s sufferer that the last thing he thought of before he went to sleep and the first thing in the morning was his illness. Thankfully it may be exasperating but that’s not what I feel!

The arrival of Autumn has seen the return of the Dance for Parkinson’s classes in London. We are looking at the Nutcracker this term, such wonderful music and the anticipation of a visit to the Coliseum in December. The local “Good Vibrations” choir has also resumed with new songs to learn for a gig next month and a Christmas performance in a local church.

October has been a glorious month with lots of sunny, warm days. The Autumn leaves have been wonderful colours and Sussex is blessed with beautiful woods and gardens to visit.

National Trust – Sheffield Park. October 2018.

We spent a weekend in the lovely town of Rye, staying overnight in the haunted Mermaid Inn, very atmospheric. To get the best view the area we climbed to the top of the Bell Tower in St Mary’s Church. It was a steep climb up and an even steeper one coming down. It was worth it but I did think was I being rather foolish with no hand rails to grab!

It is not long until Handsome Henry will be here for Christmas. Last time he would stay where you put him but now, well he can crawl at an amazing speed and will likely be walking when we next see him, how exciting!

More about feet and Parkinson’s.

Not so long ago a catalogue would drop through the letterbox from a company called
Hotter. My immediate reaction was to throw it straight in the bin, never would I look at shoes like that! However the onset of cooler weather has made my current choice of footwear very limited, Birkenstocks, one pair of trainers and a pair of walking boots with thin socks.

A limited range!

Anything else seems to hurt my big toe joint and the pain gradually spreads up the foot and even under my toes. I think the problem stems from the dystonia which at times causes my big toe to stick up on its own and the other toes to curl under with some force plus a suggestion of a bunion. I see the Parkinson’s nurse soon and hope that she could help me find an appropriate physio/podiatrist to give advice. Maybe I need some orthotics?

I was very pleased this week that, despite the problems above, I led a six mile walk. I wore my boots with thin socks plus rubbed lashings of neurofen type cream into the affected area and tried to time the dopamine pills to give maximum benefit. I got to the last mile before things began to get a bit painful. It was a large group of walkers and I was concerned that I might take a wrong turn but walking it out three times beforehand meant I could remember all the twists and turns! It was perfect weather and a very enjoyable morning ending with lunch in a pub by the river.

We have booked our flights back to Australia in the New Year and will spend some time with the Lovely Daughter and Handsome Henry including a week when we are in sole charge, global grandparents eh! As he is about to start walking we could be exhausted grandparents too!