Christmas Trees and Parkinson’s

At the beginning of December the aptly named “Good Vibrations” Choir, which I belong to, sang at the Christmas Tree Festival in Cuckfield church. Dozens of trees are decorated by local organisations and charities, and the public are invited to view them over a three day period.

Christmas tree festival at Cuckfield Church

Christmas Tree Festival at Cuckfield Church

Throughout the time choirs and musicians play and sing, an amazing organisation in itself! Half of the money made goes to a local charity, this year it is to the Mid Sussex branch of Parkinson’s UK which provides support and a wide range of activities from exercise classes to monthly meetings for sufferers and their carers in the area. I was delighted to learn that several thousand pounds has been raised; an amazing result.
Singing is particularly good for those with Parkinson’s as it helps keep the facial muscles working as well as possible, I would like to keep smiling!

Continuing on a Christmas tree theme English National ballet construct a tree in the foyer of the Coliseum made from used pointe shoes which have been signed by the ballerinas. When I arrived for my Parkinson ballet class recently there were some worn shoes there for us to sign, they would then join the others on display.

Pointe Shoe Christmas Tree at London Coliseum

Pointe Shoe Christmas Tree at London Coliseum

A little thing perhaps but it made us all feel that we really were part of the company! You can see how the tree was made by typing “English National Ballet’s Point Shoes Christmas Tree 2016” in You Tube .

We spent Christmas at the home of the dashing son and gorgeous daughter-in-law, another lovely tree there with lots of presents underneath too!

In January I have tickets for “Nutcracker” at the Royal Opera House and also for the Matthew Bourne new ballet of “Red Shoes”; please Southern Rail let there be trains!

The weather has turned much more wintry recently and it would appear to me that I seem to feel the cold more, is it that I am just getting older or is it something to do with the condition? I will appreciate the warmth of Australia in March!

In praise of Dance for Parkinson’s.

English National Ballet’s Dance for Parkinson’s started in the UK in April 2012, initially in London and now in Oxford, Cardiff, Ipswich and Liverpool. Other organisations, realising the positive impact of dance, have begun offering training and classes throughout the world.
I have been lucky enough to have participated at the ENB’s sessions for over a year now and just love it. We have live music, wonderful teachers, helpful volunteers and we all have fun, enjoying the opportunity to forget about our condition. I have met lots of amazing people from a lady who helped set up the Florence Nightingale museum in London, to a saxophone player who is also a composer. Our classes are based around current productions that ENB are involved with and we often have the chance to go and watch them too. Last week we went to see the new production of Giselle at Sadlers Wells and next week there is an opportunity to join a workshop there with “dancers” from other groups.

English National Ballet 2016 production of Giselle.

English National Ballet 2016 production of Giselle.

The local Parkinson’s UK group in Sussex has just held it’s first dance class and it was great to see more than 20 people come along to try it, lots of smiley faces all around! The teacher had attended a training course run by ENB and the structure of the lesson followed the pattern used in London.
I will be back in Melbourne early next year to see the lovely daughter and look forward to rejoining a similar group there too. They made me feel very welcome.

The last break for the year was to the Cotswolds to see friends made on a trip to New Zealand 5 years ago. We were reminiscing about the beauty of South Island when news came through of a new, strong earthquake causing huge damage to the lovely town of Kaikora where we spent time watching fur seals and enjoying beautiful scenery; devastating.

Fur Seal at Kaikora, New Zealand, 2011.

Fur Seal at Kaikora, New Zealand, 2011.

Each year Cuckfield, a local village in West Sussex, hosts an amazing festival of decorated Christmas trees in the church to raise money for charity. This year the nominated charity is my local branch of Parkinson’s UK. The event runs for 3 days from December 9th-11th and there will be musical events running alongside including a performance from “Good Vibrations”, my local Parkinson’s choir to which I belong.

The end of another year with Parkinson’s sees me with no consultant, mine left the local NHS Trust in August and there is no sign of a new one being appointed. Luckily I feel very well apart from a few issues with the toes on my left foot. However, if I need help there is a fantastic Parkinson’s nurse I can contact.

Coping with depression and anxiety with Parkinson’s

Depression and anxiety are very common problems with Parkinson’s. As many as half of all Parkinson’s patients suffer from clinical depression at some time. Researchers believe that these conditions may be due to underlying changes in brain chemistry and circuitry. I am lucky that I have always been a fairly cheerful person and the diagnosis has not made me feel otherwise. However, I have met a number of people for whom the diagnosis has really changed their lives often making them feel reluctant to venture out of the home and socialise as they have in the past or unwilling to travel. I have to accept that I have become more anxious in some situations and have to work at finding the best ways to cope. For some reason motorway travelling is not my favourite thing but it is hard to disguise your anxiety when your left hand has a mind of its own! Certainly exercise is beneficial in every way both physical and mentally and I always feel uplifted afterwards and more likely to tackle something I have been putting off.

Our local Parkinson’s UK group is going to trial some dance classes based on the format of my London Group which I hope will prove a big success. The mixture of beautiful music and dance is a winning combination. I plan to continue in London while I can and feel so well; shopping in the morning and ballet in the afternoon! I am enjoying the Autumn term with English National ballet and look forward to seeing the new, modern Giselle with the class next month at Sadlers Wells. It is a sell out for all the London dates. Last Saturday we were using sticks in a routine showing the strength of women in the production AND they were the very ones used by the cast – maybe even Tamara Rojo had held mine!

We were in Devon this month, the warm sunny days made it a real treat. We took the boat from Dartmouth to Totnes and walked up the steep high street which reminds me so much of Lewes. We came across a man playing a square guitar and then another with a Siberian owl on his arm, all very quirky.

The owl in Totnes.

The owl in Totnes.

We went back to the D’Oyly Carte house, Coleton Fishacre, near Kingswear, owned by the National Trust, admiring the stunning colours of a late summer border.
At Coleton Fishacre house, near Kingswear in Devon.

At Coleton Fishacre house, near Kingswear in Devon.

At the bottom of the garden is a gate onto the coastal path from where there are stunning views. One day we drove to Slapton Sands where in 1943 a rehearsal for the D-day landings was held. Sadly it went badly wrong and 749 Americans were killed. We lunched at a very old pub called The Tower nearby, the food was great and the staff very friendly. The last afternoon was spent exploring Dartington Hall and the 880 acres of grounds around it. It was so warm that we sat out and admired the views; it felt more like July than October.

November arrives next week; what a lovely Indian Summer we have enjoyed!

Waking early, a common problem with Parkinson’s.

Ninety six per cent of people with Parkinson’s have difficulty one way or other with sleeping. I sleep reasonably well but wake very early. During the summer this has not been too much of a problem. I come downstairs, make a cup of tea then sit and watch the birds as they queue up for the bird feeders in the garden, particularly the ones with sunflowers hearts. This year I have enjoyed seeing goldfinches for the first time with their beautiful markings of red, white and black heads with gold wing-bars but suddenly as we have got to the end of September they have vanished.



It is still quite dark now when I get up so I will need something else to do. The amiable husband suggested listening to podcasts and I have started with Desert Island Discs. They are perfect, about 35 minutes of chat and music and there are hundreds of them. I particularly liked one with the actor Hugh Bonneville. His last choice of music was called “The Path Towards Tomorrow” by Damien Mantagu from the album “In a South Downs Way”and it reminded me of walking along the Downs on a a beautiful summer’s day.

This Saturday sees a return to English National Ballet classes for people with Parkinson’s, held at their headquarters near the Royal Albert Hall in London. We are exploring “Giselle” this term; a new production choreographed by Akram Khan is unveiled this week which will be exciting to find out about. “Giselle” is one of a community of migrant garment factory workers called the Outcasts, certainly very different!

The weather in September has been perfect for being out and about. On one of the hottest days I led a walk from Nuthurst in West Sussex which was fortunately mostly through shady woods and not too long. We walked along a ridge with far reaching views towards Chanctonbury Ring and the South Downs passing Sedgewick Park House. I would be fascinated to see the house and gardens featuring 20 interlocking lakes. A bit of research has found that the gardens are open during May under the National Gardens Scheme so I must put it in next year’s diary which already seems to be filling up!

Scotney Castle, Kent.

Scotney Castle, Kent.

The amiable husband had never been to Scotney Castle near Tunbridge Wells so on another fine day we spent time exploring the castle ruins surrounded by a moat and visiting the top house with some newly opened rooms. It must be a mass of colour when all the rhododendrons are out in spring.

Everyone with Parkinson’s is very different and not knowing how the disease will progress makes it important to make the most of each day; never mind the dusting!

August diary for meandparkinsons

At the beginning of August I went for my appointment with the Parkinson’s Nurse. I didn’t really have much to report so we enjoyed a bit of a chat about what was happening in the Parkinson’s world. I was very surprised to hear that my consultant was leaving the next week and as the NHS doesn’t advertise the appointment until he has gone there will be several months without anyone in his place. We are lucky that our Nurse is so good!

This month’s “Shakers and Movers” Magazine has just come out and there is a report about my visit to a local primary school to talk about Parkinson’s plus a suggestion that other schools might find it valuable in helping children gain a greater understanding of the condition and the impact it has has on people’s lives. I might have a new role! I sent away for a book written by Muhammad Ali’s daughter Rasheda which provides a child’s guide to Parkinson’s disease which will go in my resource pack.

Our Mid Sussex branch of Parkinson’s UK is looking at the possibility of having a ballet class locally and invited a dance teacher to come and demonstrate the kind of activities that could be expected. She has trained with my London Dance for Parkinson’s teachers and the lesson followed the pattern recommended. There were about 60 people all joining in which was lovely to see.

During August we have enjoyed some great trips out. One day we went to Rudyard Kipling’s house Bateman’s near Burwash. The amiable husband had never been there before and found lots to interest him.

Rudyard Kiplings home, Batemans, near Burwash.

Rudyard Kiplings home, Batemans, near Burwash.

Most exciting though was when Rudyard Kipling himself (alias historian Geoff Hutchinson) joined us in the garden to talk about his life and work. He was amazing, from reciting parts of poems from memory to describing his troubled childhood, he had us in the palm of his hand. We googled him later to note that he also can take on the role of Mad Jack Fuller, a Sussex character who built follies. If you ever get a chance to see him perform take it!

History must be a theme for August. I met the Dashing Son in London and after a gluten free lunch at Indigo in 1 Aldwych we joined a guided walk round the Inns of Court titled “Legal and Illegal”.

Middle Temple, London.

Middle Temple, London.

They closely resembled a collection of Oxbridge colleges and gardens, tucked away from the bustle of the city. Our guide, Shaughan, had a story for everywhere we paused and proved an excellent and charismatic leader. There are so many city walks available I would love to join more.

This has been my fourth summer with Parkinson’s. When I was first diagnosed I wondered how things would be, would my life change forever straight away. Helped by friends and family, exercise and luck they have been wonderful years; long may that continue.

Of feet and things, highs and lows of Parkinson’s

I have been taking madopar for almost 5 months now and I am still learning about how best to use it for maximum benefit. Timing is critical particularly if I want to do an activity that involves swinging my arm or swimming. I had timed it well recently and was swimming up and down at a reasonable pace, excitedly moving into the medium speed lane from my usual slow one when I noticed a fellow regular whom I hadn’t seen for a while staring in frank amazement as I overtook him! I had to explain my change in medication. Several people have said that my tremor is far less noticeable which is fabulous. Obviously there are some side effects, the main one being sudden tiredness particularly in the evening, however, as I tend to be awake around 5am that is not surprising!
I am experiencing some issues with my left foot whereby muscle cramps and dystonia cause the muscles to tighten and shorten involuntarily, usually when I am sitting down for a while. I have to be a bit careful with shoes, my beloved ballet shoes are no good for walking very far as my toes have to grip too much. Recommended are “shoes with laces, Velcro or strap and buckle”. There are a few trendy lace or buckle ones around but I am certainly years away from Velcro! Maybe I will need to find a podiatrist at some point and also use my little spiky ball more.

We were lucky enough to get tickets for the first day of Wimbledon in the public ballot this year and spent a warm sunny day there, soaking up the atmosphere and watching Djokovic open the tournament on the Centre Court.

Day one at Wimbledon 2016.

Day one at Wimbledon 2016.

We are recently back from ten lovely days in Italy, starting with four days food and wine tasting in Tuscany. We stayed in a beautiful hotel blessed with a large and mostly unused swimming pool, perfect.

Personal use of hotel swimming pool.

Personal use of hotel swimming pool.

We then boarded the Queen Victoria and spent a week sailing from Rome (Civitavecchia), through the straits of Messina and the across to Corfu, Kotor, Trieste and finally Venice. I think my favourite day was when we sailed up the fjord like approach to Kotor in Montenegro and then explored the old walled city. Alas our relaxed state didn’t last too long as we experienced the horrors of Marco Polo Airport, Venice, (never, ever fly from there) and a short flight turned into a 26 hour one. No explanations, no water or food and a scene of utter chaos and complete lack of help from any staff; nightmare. The amiable husband is now corresponding with British Airways who are not being very forthcoming. Our next trip to Australia certainly won’t be with them.

After a lifetime of having to go away in the school holidays we are going to enjoy a few weeks at home. Next week we are off to see “Half a Sixpence” at the Chichester Theatre; everyone says it is excellent.

Talking to children about Parkinson’s

Earlier this month I visited a local school as part of their community assemblies to talk about Parkinson’s. It has been nearly seven years since as a primary school teacher I would regularly take an assembly and I was very nervous. However, armed with my lesson plans (yes, I could still remember how to write one) all went well. I spoke to the 4-7 year olds first then the 7-11 year olds adjusting the content as appropriate. With help from some materials from Parkinson’s UK I outlined the main problems, talked about how it affected me and how I can help myself and finally some ideas about how they might help.

Parkinson's UK booklet

Parkinson’s UK booklet

They listened carefully and, I hope, came away with some understanding and hopefully a few ideas about helping people in their community. I was touched when one of my fellow “Movers and Shakers” choir members said her grand daughter was there and found it very interesting.

There have been lots of opportunities this month to enjoy outings from home including Nabucco with Placido Domingo at Covent Garden

At Covent Garden for Nabucco opera.

At Covent Garden for Nabucco opera.

and a Swan Lake rehearsal at the Royal Albert Hall with the Dance for Parkinson’s group. A friend invited me to join her on a fascinating tour of the Temple Church, between Fleet Street and the Thames. It was originally built as the headquarters of the influential Knights Templar in the 12th century and has an amazing history, well worth a visit.

There has been plenty of eating and drinking with Ladies Who Lunch this month at some of my favourite restaurants including the fabulous Gravetye Manor with its wonderful gardens. Champagne seems to slip down very easily and I am sure it helps the left hand tremor! We managed a family meal together before the lovely daughter headed back to Australia. The dashing son and beautiful daughter in law were also home for birthday celebrations; the sun even shone for drinks outside!

Next week we have been lucky enough to secure tickets for the centre court in the public ballot for the first day of Wimbledon. It is some years since we were there so just praying for sunshine. The following day we are off to Italy, hence the early Blog this month!

May time with Me and Parkinson’s

The lovely daughter has been home from Australia this month and our “girlie” time away has been 36 hours in Amsterdam where we stayed overnight in a lovely boutique hotel along Keizersgracht. I loved the approach with fresh flowers leading the way to the entrance, very pretty.

Amsterdam - flowers at hotel entrance.

Amsterdam – flowers at hotel entrance.

The weather was decidedly chilly with some rain but we managed to see and do plenty from an introductory walking tour of the city to Anne Frank’s House and a visit to the Rijksmuseum where we saw the amazing picture of the Battle of Waterloo by Jan Willem. My Fitbit tells me that we walked 14 miles while there and a lot of that was on cobbles! Did you know that the father of the Dutch King Willem – Alexander suffered from Parkinson’s?

The daughter was persuaded to join a Dance for Parkinson’s Class at the English National Ballet headquarters in London while here; she will be able to picture what it is all about now. On Thursday the class members plus friends have been invited to watch a final rehearsal of Swan Lake at the Albert Hall, very exciting.

The weather has been changeable here but I managed to recently walk part of the South Downs Way from Pyecombe to Fulking which, on an early summer’s day was looking amazing, wild flowers everywhere, birds singing, lush grass and every light green possible on the trees.

The South Downs near Devils Dyke, Sussex.

The South Downs near Devils Dyke, Sussex.

I am continuing with the same medication, madopar, and, although tired at times, enjoying swinging that left arm and almost powering my way along 50 lengths of the pool.

A few facts to finish with:-
The community with the highest prevalence of Parkinson’s in their community is along the Nile River.
The country with the highest prevalence is Albania.
Redheads are at a higher risk of developing Parkinson’s than other hair colours.
Welders have a greater chance of getting Parkinson’s than other occupations.
More men than women have the disease.

… and finally; I was surprised to hear in a speech today Sadiq Khan, the new Mayor of London, says “If you vote remain it means helping fight diseases like cancer and Parkinson’s”. This comment was made at a speech about the European Referendum.

First month with Madopar, replacing the missing dopamine…

When you have a sore throat you expect that the medication you take will treat your throat and it will get better. It seems that when you take dopamine you don’t know which parts of you will be helped and there can be some surprises along the way. Swimming was my first activity to be affected by Parkinson’s and I could only manage a fairly torturous 15 lengths as recent as March. When I got in the pool recently I was amazed to discover that I could just keep going and I swam 48 lengths without any trouble. Recently when testing a walking route with a friend I looked down and found I was swinging the left arm and walking without a limp. Now, when I decided to try Madopar it was to help the tremor and spasm in my left arm and to some extent it has definitely helped the spasm but not the tremor very much. At a recent clinical massage the therapist said she thought my back seemed freer and when having a manicure my fingers didn’t twitch so much. Previously, in Australia, the beautician had despaired of painting my left hand nails telling me to relax repeatedly and then putting one of the sponge toe separators on my fingers! Down sides, of course there are some; very tired at times, dry mouth, need to go to the loo more and dreams that are incredibly real, but on balance at the moment it is helping with my everyday life, long may it continue!

Bluebells in a Sussex woodland

Bluebells in a Sussex woodland

This week has been Parkinson’s Awareness Week and there has been a brilliant programme on BBC television showing the humorous side of Parkinson following the comedy writer Paul Mayhew-Archer (he wrote The Vicar of Dibly) as he goes about his everyday life including attending a Dance for Parkinson’s class in Oxford and an item about a poet friend whose life has been turned round by Deep Brain Stimulation. Let optimism prevail! (The 30 minute BBC programe can be viewed, in the UK, at

We have just returned from a few days in a chilly but sunny Scotland where we explored the coast of Argyll, some glorious places from lochs and glens to gardens and castles, including Inveraray where we chanced upon a piper playing in full costume; a great experience.

The piper at Inveraray

The piper at Inveraray

My particular favourite was an action packed boat ride in force 8 winds from Ardfern to see the Corryvreckan whirlpool – the third largest whirlpool in the world. Strong Atlantic currents and unusual underwater topography conspire to produce a particularly intense tidal race in the Corryvreckan channel – features combine to create whirlpools, standing waves and a variety of other surface effects. We also saw sea eagles, stags, seals and an osprey which flew just in front of us. Beautiful too was the train ride from Fort William to Mallaig, described as one of the great railway journeys of the world this 84 mile round trip included crossing the 21-arched Glenfinnan viaduct – a location made famous in the Harry Potter films.

Next week sees the resumption of the Dance for Parkinson’s classes in London. The group recently went to Saddlers Wells Theatre to see one of the first performances of “She Says” which we will continue to explore this term. In one of the ballets a dancer performs in one block shoe and one bare foot. I don’t think we will be copying that!

From Australia to Sussex; time to start the dopamine

The second half of this year’s trip to Australia saw us flying to Sydney for a few days, staying at Finger Quay, just a twenty minute walk through the Botanical Gardens to the Opera House. We managed to get tickets to see La Boheme that very evening; fabulous.



The next day was very hot so we hopped on and off the ferries at Circular Quay to places such as Manley and Watson’s Bay, there was a cooling breeze on the water. The next day the lovely daughter joined us and we began a five day trip driving along the coast back towards Melbourne. Highlights included a night in Kangaroo Valley, a lush, hilly area where we enjoyed a walk through the treetops. Three nights were spent in an isolated cottage at Bawley Point, near Bateman’s Bay
Blackberry Cottage at Bawley Point

Blackberry Cottage, near Bateman’s Bay

with just kangaroos and lots of bird life for company and a scramble through the bush to reach a deserted, white sandy beach.
Racecourse Beach, Bawley Point.

Racecourse Beach, Bawley Point.

We lunched one day at Rick Stein’s fish restaurant at Mollymook which was a real treat.

A week later we were back in Sussex to the beginnings of an English springtime, and a big change in temperature. Time for me to start taking the gold star treatment for Parkinson’s; dopamine. To avoid unpleasant side effects including nausea the build up is very slow. The good news is that so far I feel fine. The not so good news is that there is no improvement whatsoever in the spasm and tremor in the left arm, my main problem. However, this morning I swam an extra 7 lengths without much difficulty. Maybe I am being impatient and more time is needed, I hope so….. I see the Parkinson’s Nurse in three weeks.