Happy New Year

About 30 years ago I was playing in a badminton match when a loud crack rang out, I turned to see what had happened; had I been shot or had a racket been thrown at me. Neither of those, I had just ruptured my Achilles tendon on my left side. An operation, time in hospital and then months on crutches followed. I returned to badminton with some trepidation but have had no trouble with the tendon since. However, about three months ago I slipped on some mud while on a walking break and since then I seem to have had a stiff right tendon and ankle. I can’t make up my mind if it is an injury or one of those quirky Parkinson’s issues. I remember when I first saw a physio for some basic exercises after my diagnosis she gave me one to do which was a step and curtsy which was to stretch out the calf and Achilles so now I am practising that one again plus lots of pointing and flexing my foot. It only really hurts when I go down stairs when I am very cautious and feel about ninety I certainly wouldn’t want to repeat the injury of yesteryear, however I am still playing a bit of badminton!

The latest “Movers and Shakers” Magazine for our local branch of Parkinsons UK came out last week and I found that a picture of me taken after a short talk I gave recently had made it to inside the back cover, well it was never going to be on page three!

Christmas was spent with the dashing son and gorgeous daughter in law. They looked after us particularly well and we felt very spoilt and relaxed. To recover from Christmas lunch we strolled along the side of the Thames, feeding very hungry swans and ducks. The trouble was that the current was so strong that the wild life was moving on before the bread landed! Back in the house I welcomed the opportunity to bond with Pepper the cat, she is a lovely, fluffy girl who appreciates plenty of strokes and tickles.

Pepper the cat

Pepper the cat

I received a Fitbit wristband for Christmas which should encourage plenty of exercise in 2016, I can see it will be a motivator to keep moving which can’t be bad!

New Year’s Eve this year sees a group of us dressing up as characters from Alice in Wonderland for a Murder Mystery dinner, should be fun, I am the Cheshire Cat so have ears and tail ready!

Happy New Year to everyone, may it be healthy and happy.

Getting ready for Christmas for meandparkinsons

Last week I had my six month check up with the consultant. He got me to try a few exercises with my left fingers and feet which, unsurprisingly, showed that any actions are much slower and petered out on that side. However, the rest of me feels really well, cheerful and with good energy levels and reasonable sleep patterns so, for the time being, I shall just keep on with the Rasagiline. No let up in exercise though!

I gave a very short talk to the local branch of Parkinson’s UK (PUK) about the project that we have been working on at the Service Users Group. We would like it to be routine for more information about the free help that is available, both nationally and locally through PUK, to be given out by relevant health officials upon diagnosis. I spoke to my consultant last week and he seemed very interested. There is a monitoring process so after a time we should be able to see what support it is receiving, fingers crossed!

The “Good Vibrations” choir formed part of a jazz evening recently, led by the fabulous Lou Beckerman, and helped raise £500 pounds for PUK; excellent. I do believe we are getting better! Our last song “Somewhere” was a bit of a tear jerker as you could think of it as being related to our condition. Ironically at the end of this week’s Dance for Parkinson’s, at the English National Ballet, that music was played live at the end of the class and I couldn’t help but sing along with it! Next week is the last class before Christmas and for a bit of fun we are all going to wear the most awful socks we can find.

Life isn’t all about Parkinson’s, it’s about enjoying time with friends. One of my favourite times is going out to eat and catching up with “Ladies who Lunch” groups, often at posh places with good offers. At Christmas we all go out together and the men chauffeur us to and from our chosen restaurant, this time a beautiful country house hotel where we have the library decorated and set up for us, fabulous. Christmas always sees lots of catching up. We have been lucky enough to make friends with people we have met on holidays in such places as New Zealand and France, and at home badminton, teaching and walking groups celebrate together.

Coastline in Les Landes

Coastline in Les Landes


Our final holiday saw us enjoying some late sun in the south west of France staying with a dear college friend in her lakeside flat. She was an excellent tour guide and showed us some lovely places, surf and lakes. Eating at lunch time with locals meant we had some great experiences, most memorable a 14 euro four course meal, with wine and coffee included, in a sunny garden.

Yesterday Sussex saw the first snow and frost of the year. Winter is here. Dark evenings can be spent planning trips for 2016, the first being Australia in February.

Fumbling fingers with Parkinson’s

Parkinson’s moves very slowly which gives you time to adapt to the changes it necessitates. I have noticed over the last months that my manual dexterity has become poorer particularly with two handed tasks such as:-
tying shoe laces,
buckles on strappy shoes,
doing up little pearl buttons,
drying my back with a towel,
putting on my cardigan/coat,
flossing my teeth,
using a knife and fork,
finding things quickly in my handbag – having brightly coloured contents helps;

Different coloured items are easier to find.

Different coloured items are easier to find.

At the end of this month the “Good Vibrations” choir play their second gig during a jazz evening to raise funds for Parkinson’s UK. I am feeling rather nervous as I will miss the last two rehearsals and am finding remembering the words of five songs challenging. One of the choir members has recorded the music for the songs so we can sing along at home; amiable husband moves out of the room pretty fast!

I have just returned from the weekly ballet class at English National Ballet, very exciting. We were filmed for next Monday’s (26th October) Channel 4 News ahead of a report coming out on Tuesday about the impact the classes have had on our Parkinson’s.

This month the said husband and I went to Suffolk for the weekend and enjoyed a weekend staying at the pretty village of Orford in glorious sunshine. Himself is a bit of a twitcher and we spent a day at the RSPB site at Minsmere, an amazing place where he fulfilled an ambition to see a bearded tit!

Bearded Tit

Bearded Tit

I wish birds would stay in one place a bit longer so that a beginner could get the binoculars focused in the right place. Wading birds like the advocet are very helpful as they stay on the ground longer!

On Sunday we fly to Biarritz, France, to stay with an old college friend who has lived in France for forty years. The weather hopefully will be kind to us and we can explore some of Les Landes, country and seaside during our last break for 2015. However, there are lots of dinners and celebrations to enjoy through the festive season and it will soon be time to fly to Australia again in mid February for some warmth and sunshine and to spend time with the lovely daughter.

Parkinson’s lack of expression; try singing and dancing!

A common problem for those of us with Parkinson’s is making sure our face and voice convey our emotions to others. Singing and Dancing can be a big help in this area as muscles that stiffen can be given a good work out.

“The Good Vibrations” Choir that I belong to begins each session with lots of exercises to help get things moving from humming to cackling like a witch or using different tone or volume. We stretch and yawn, reach out for high notes or stoop down for low. We learn new songs each week or revisit and improve ones learnt before. It is time now to prepare for our second jazz “gig” at the end of October which has been an instant sell out and will help make money for Parkinson’s UK.

On Saturday I joined the main class run by English National Ballet for Parkinson’s and noticed several similarities in the warm up. This term the ballet we focus on is Romeo and Juliet, music by Tchaikovsky, so we need to practise our Italian vowels, sometimes strong and loud and sometimes gentle and soft. We looked at the first part of the story and imagined we were part of the street market in Verona making gestures to convey the activities happening. Now, I am a very inhibited person who finds this aspect pretty challenging but I am determined to give it a go. We had two dance teachers and musicians plus lots of dance students to help us, there is some wonderful music in which made things a little easier!
Thursday October 1st is World Ballet Day with dance, mostly live from five major companies but also including a visit to smaller ones such as ENB which will show some film from our Parkinson’s class this week. It starts in Melbourne at 3am (UK time) with the Australian National Ballet then continues all day and in particular at the ENB sometime between 2-3pm at http://www.worldballetday.com and on-line for 30 days.

Recently we had a wonderful weeks river cruise travelling along the Saone and the Rhone in France. The sun shone all week as we ambled along looking at all the Burgundy vineyards and as we got further south the wonderful Roman remains at Arles and Avignon.

Amazing Roman remains

Amazing Roman remains


Whilst in Avignon we passed a very expensive jewellery shop which had this tutu, encrusted with gems, in the window. The amiable husband hid the credit cards!
The expensive tutu!

The expensive tutu!

We have just returned from a week walking in Shropshire with my walking group; they seem to have “mountains” there which provided beautiful views but meant plenty of ascents. We were lucky enough to have much drier weather than at home in Sussex. Once home though all changed and I helped lead a walk in near monsoon conditions which tested the waterproofing of our boots!

Finally, last week I joined the amiable husband and dashing son for a World Cup Rugby match at Brightons AmEx stadium, between Samoa and the USA – a wonderful stadium with a great atmosphere.

World Cup Rugby in Brighton.

World Cup Rugby in Brighton.

Me and Parkinson’s – Life with an automatic

After struggling for some months pushing down the clutch pedal on my car with my weaker left leg, even the amiable husband was grimacing when I changed gears, I am now the proud owner of a fully automatic Kia Picanto. After the initial fear and trepidation I am beginning to feel quite confident and it is definitely MUCH easier. The left leg sometimes wants to join in but on the whole has accepted that it’s now happily redundant!

I have had some exciting news too this week as I have been accepted into the main ballet classes at English National Ballet for people with Parkinson’s. The main focus will be Romeo and Juliet, the Autumn Production for ENO.

Romeo & Juliet

Romeo & Juliet

Should I have a swirly black skirt and some ballet shoes? I haven’t had any of those since I was seven. Term starts at the end of September on a Saturday afternoon which fits in well as the said amiable husband will be supporting Brighton & Hove Albion. I have worked out that if I go up to London a bit earlier than I have to I can go one stop past the Ballet studio and have a look round the shops in Kensington High Street first!

The newly formed Parkinson’s UK Sussex Service Users panel met recently in Brighton to finalise plans to encourage local health professionals to give out more information about the help available through Parkinson’s UK to those recently diagnosed with the condition. I will need to talk to my local branch members which will be quite a challenge, I haven’t done anything like that for years. Hopefully we can all work together to help provide support for many more Parkinson’s sufferers.

While Googling Parkinson’s UK I came across the most amazing comic strip alphabet describing what happens in a humorous way, it is brilliant and can be found at https://drawnoutthinking.files.wordpress.com/2015/02/louises-a-to-z-of-parkinsons-compressed.pdf

I have not been on holiday yet in August but tomorrow set off for a week on a river cruise travelling south along the Rhone in France from Beaune to Arles, lots of wine tasting (good for a tremor) and visits to amazing sights such as the Pont du Gard.

Pont du Gard

Pont du Gard


However August has been busy with lots of lovely things including spending the day with the dashing son in Covent Garden, staying with friends and a visit to the beautiful gardens at Wisley. I am helping lead a walk in September so have been preparing a five mile trail ending with lunch in a local pub.

It’s always good to keep busy!

An Opportunity to Dance with Parkinson’s

Two weeks ago I was lucky enough to travel to English National Ballet’s headquarters at Markova House in London for a taster session dance class for those with Parkinson’s; a memorable and exciting afternoon. Led by the wonderful Danielle we experienced a well structured class which led to a final dance based on the ENB’s current touring production of “Lest We Forget”.

Lest We Forget

Lest We Forget

Nervous novices were soon enjoying the whole experience and with careful partnership sections introduced in the dance we soon got to meet other participants and begin to make new friendships. Research has shown that dance can provide many benefits, physical, mental and social. Next week there is another taster session, can’t wait! Parkinson’s UK now has web pages about dance opportunities and how to get involved.

Today I saw the Parkinson’s Nurse and agreed I would continue with just the Rasagiline for a while longer whilst appreciating that I will need to take something more in the coming months. I feel so well I don’t want to jeopardise that! Changing gear is becoming quite difficult so research on an small automatic car has begun, watch this space! I am keeping an eye on possible slight hair loss; is it Parkinson related or maybe just my age!

This month’s holiday has been to Lake Como in Italy with good friends; a glorious lake with beautiful villas and gardens.

In the Italian Lakes

In the Italian Lakes

We went on trips to Lake Maggiore and also on the Bernini Express over the mountains to St Moritz in Switzerland, amazing views and wild flowers. Most of all though I enjoyed visiting the local villages around the lake by boat.

The lovely daughter flew in from Australia at the beginning of July and we managed three very hot days in Avignon, France, travelling directly there by Eurostar. Great service but a few issues with the current disputes in France on the way back, including farmers putting tractors on the line.

Travelling is wonderful but there can also be a few issues!

The importance of exercise for Parkinson’s patients; one sufferer’s experiences.

I have always enjoyed exercise of some kind but now, nearly 3 years after the Parkinson’s diagnosis, it feels more important than ever. Looking at research I like the idea that exercise can help with the management of symptons and possibly slow down the disease progression – “it puts the patient, not a pill at the centre of care”. I know each person has different symptons and what works for one person will not suit another but it seems to help me. I do a mixture of things, lots of Pilates, walking, swimming and, of course, my favourite activity, badminton.

I play at a friendly club rather than League now and have learnt to adapt my serve, a tremor is not helpful with this, and still get a real kick out of playing. I was thrilled to be asked to play in a match a few weeks ago and although the results were not in our favour I enjoyed the whole experience. Unfortunately we were using different shuttles and I soon realised I had tennis elbow, a few weeks without play will sadly be necessary. I must fit in another lot of exercises for that!

However, I could still be a Parkinson’s ballerina! Having failed at my first attempt to join a class run by English National Ballet they have emailed me about two taster classes in July, fingers crossed I can get into one of them. It just sounds a wonderful idea, people with Parkinson’s working with ballet professionals.

At the end of May we joined ex colleagues of the amiable husband in Bath and spent time exploring that beautiful city, in particular the Roman Baths. We were staying just outside and were lucky enough to be able to travel to the centre of Bath by boat.

At the Roman Baths in Bath.

At the Roman Baths in Bath.

I recently celebrated my third birthday with Parkinson’s and enjoyed champagne and canapes with friends in the garden one day and then, on the actual day, went to the beautiful National Trust gardens at Sissinghurst where we spent time in the “white garden” and were able to see the roses at their best.

At the National Trust gardens, Sissinghurst, Kent.

At the National Trust gardens, Sissinghurst, Kent.

We are off to Lake Como in Italy this week and look forward to seeing lots of places in that area. When we get back from there the lovely daughter flies in from Australia; July will be busy!

Parkinson’s in Sussex Springtime

This month it was time to see the consultant again for a “where are we now” discussion. Apart from the dodgy left arm I feel really fit and well and am enjoying life so prefer to just continue to take Rasagiline and not progress to dopamine yet. He pointed out that if I was left handed it would be a very different story, which I accept!

I belong to a newly formed Service Users Panel for those with Parkinson’s in Sussex, and we are working on a project to encourage clinicians and health workers to offer newly diagnosed patients information about help available both nationally and locally through Parkinson’s UK. During the recent Parkinson’s Awareness week a church service was held locally which included a poem written specially to encourage support and friendliness towards sufferers. I was delighted to help by reading aloud the poem, you can listen to it by clicking on this YouTube website: http://youtu.be/qETS5z7nvVo ; some beautiful art work too. The local branch here in Mid Sussex is very active and offers a wide range of activities from the choir to monthly meetings and exercise classes.

Talking of exercise I led a 10 mile walk this week from the beautiful Nymans Gardens

Nymans Gardens, Sussex

Nymans Gardens, Sussex

to Balcombe for lunch and then back through Staplefield to the start. Spring flowers were out in abundance, trees were every shade of green and lambs gambolled in the fields, glorious!
Lambs gambolling

Lambs gambolling

Earlier in the month we went on a short cruise which enabled us to visit Bruges and Honfleur, both beautiful places with historical centres to explore. Bruges particularly would certainly merit a longer stay, so much to see there.

Bruges

Bruges

Feeling so well I want to make the most of every opportunity and look forward to visiting Bath later this month and Lake Como in June.

Parkinson’s Down Under; the trek to the lighthouse at Wilson’s Prom.

The lovely daughter likes to set an annual challenge to keep me on my toes. This year it was to be a trek to the lighthouse at Wilson’s Prom, three hours drive out of Melbourne, staying overnight and returning a different route. “How far” I ask? “About 12 miles” she says, “each way”! Three of us set off carrying everything we needed from food to bedding.

A rest at Oberon Bay

A rest at Oberon Bay

Having heard so much about snakes I quickly found a stick to bang each step to send them on their way; it didn’t work perfectly as we saw 5 brown or black ones slither away! We trekked along beaches, across streams, thick forests and up steep long hills seeing black wallaby’s which blended in to the vegetation.
The views were magnificent.

The views were magnificent.

Black wallaby.

Black wallaby.

After nearly 8 hours we staggered up the last hill to the glorious setting of the lighthouse and collapsed into comfy chairs. Lovely daughter set to making tea for the oldies then cooked a delicious dinner and revived us with wine she had carried all the way; we needed it! We slept in bunk beds that night but sleep was reluctant to come as we could hear noises INSIDE; very strange noises too. Around 4am I suddenly worked out what it probably was, we had left muesli bars wrapped in cellophane on the window sill and it was probably mice, first light proved the theory, rations for the day’s walk would have to be reduced. The park ranger gave us a fascinating talk about the history of the area and the lighthouse. We then we set off on a different track back, through forests to the most beautiful beach ever at Waterloo Bay for a reduced picnic and then a long afternoon walk. Checking the mileage for the whole journey it was actually 32 miles in total, incredible but an amazing and wonderful thing to do and I felt a huge sense of achievement.

We recovered quickly and enjoyed the rest of our Melbourne stay before the dreaded long flight back to discover it is Parkinson’s awareness week in the UK. I did an extra blog into a Parkinson’s Facebook page and had 50 viewings with which I was delighted. The slogan for the week is “up the friendly” to encourage the public to give people struggling with Parkinson’s more time and a helping hand. There will be lots of publicity this week on TV, radio and social media.

Hopefully Parkinson’s UK can help more sufferers, currently only 35,000 out of 127,000 of those diagnosed belong to Parkinson’s UK – no one needs to be on their own.

A change of scene, Parkinson’s Down Under

The beginning of this month saw the first performance of the Good Vibrations Parkinson’s Choir and I am happy to say that it was a great success; a sell out performance and a fund raiser for the local Parkinson’s UK branch. We all enjoyed ourselves immensely, well done to our wonderful choir mistress Lou Beckerman.

No sooner had I recovered from that when we were off to visit the lovely daughter in Melbourne, Australia. I have started to look at what happens when you are diagnosed with Parkinson’s out here, a few facts this time and more information in the next Blog. Based on researched by Deloitte a couple of years ago there are 100,000 Parkinson’s disease sufferers in Australia, including roughly 2% of the population over the age of 65. Not sure exactly how the Oz Medicare system works but it is estimated that the annual cost per person with the condition is about £6,000 pounds. I take Rasagiline which has only fairly recently been made available here. There is an organisation called Parkinson’s Australia which provides a similar role to our Parkinson’s UK.

We have recently returned from a weekend away in beautiful Byron Bay, situated a couple of hours drive south from Brisbane. It has stunning beaches and a National Park based around a lighthouse. We took daily walks there, admiring the Dolphins which frolicked in the seas around there and were lucky enough to see a koala just a few feet away from us.

Australia certainly has a lot to offer, more from Down Under next time!

Koala in the wild - Byron Bay

Koala in the wild – Byron Bay