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!

Holidaying with Parkinson’s

August saw us traveling to Portugal for a cruise along the River Douro with our Australian friends. It is a beautiful journey with steep terraces on either side planted with vines used for the making of port wine. Navigation of the River has been helped by the building of deep locks to smooth out the rapids. Earlier transportation of the wine to the cellars of Oporto was previously a journey fraught by danger and many lost their lives. The ship we stayed on was comfortable and, very importantly, air conditioned as temperatures soared to 40 degrees!

It is nearly six years since I was diagnosed with Parkinson’s and I wondered what I would find more difficult this time. In truth I think I managed quite well, although, like many sufferers, there is always the dread of falling and I am slower going up and down stairs. Life on board was sociable, lots of interesting people to meet. It is always good to have pockets in clothing for occasions when the left hand decides to have a noticeable tremor! I woke early as usual, not so easy to entertain yourself when away from home, but luckily I could listen to podcasts from the Desert Island Discs back number podcasts until it was a more acceptable time. I joined a stretching class in the mornings which was useful but decided I could make up my own programme probably just as well.

Morning exercise on board the ship.

River Douro at Oporto.

During the summer I have worn my Birkenstock sandals all the time as they seem to be the only foot ware that doesn’t aggravate the dystonia in my left foot. I am not sure that they will be any good in rain and snow so have begun a search to find something more suitable. I have found a neuro podiatrist so plan a trip to try and get some advice. Looking at Google I realise that finding comfortable (and reasonably smart) footwear is a big issue for many Parkinson’s people.
No more high heels for me!

Coping with the hot weather

Like much of England Sussex has had a prolonged period of very hot weather during June and July, the like of which we have not seen since 1976. I have found the heat quite exhausting and have not been walking or playing badminton, two of my favourite activities. Pilates has been fine as it mostly involves gentle stretching, no cardiovascular work. Excessive sweating is a common symptom of Parkinson’s and that has been more of a problem than usual. It has been a relief to have a cool few days over the weekend.
At the beginning of July I saw my consultant, the fourth one since I was diagnosed nearly six years ago. He concluded that not much had changed and offered me an appointment in twelve months rather than six. I felt rather pleased with that somehow as normally with an ongoing chronic condition appointments become more frequent!
Ballet classes in London and the local choir are having a summer break so there has been time to enjoy outdoor pastimes such as extended birthday lunches and suppers with friends. We spent a warm, balmy evening listening to Kathryn Jenkins singing in a local park; magical.
Handsome Henry is back in Australia and now crawls forwards. This enables him to explore the fireplace, try the cat food and dismantle all the draught excluder the aimiable husband had carefully fixed round the patio doors. The cat finds his hammock on the window a safe place to watch the chaos below!

Next month we are flying to Oporto in Portugal and travelling along the Duoro River with Australian friends; should be great fun!

Mouth issues and Parkinson’s

Parkinson’s is a very clever disease. Just as you think you have worked out what the difficulties can be you find another one. I recently went to the dentist and he was talking about possible problems, firstly, caused by the stiffness in your hands which means cleaning your teeth is more difficult, and secondly, oral hygiene problems often caused by the lack of saliva which can lead to a dry mouth. This can lead to a greater risk of tooth decay and gum disease. I sometimes do find that I need to use sugar free gum and try and remember to keep some with me.
Back now in England for a while it has been a lovely start to summer. Roses seem to be particularly good this year and walking round Nymans, a local National Trust Property was a real joy. We recently joined a guided walk to look for wild orchids on Wolstonbury Hill in the South Downs and saw eight different species from the Common Spotted to some more unusual such as the Fly, Chalk Fragrant and Pyramidal orchids. We also found the Round-headed Rampion, also called “The Pride of Sussex” (the County flower of Sussex) which is more common on the South Downs than anywhere else in the UK.

Pride of Sussex

The lovely daughter and our grandson, handsome Henry, joined us mid June. He was home for his first birthday and his christening in an historic local church in Ditchling. Godparents joined us on a perfect summer’s day for the ceremony. Henry smiled and chatted throughout and was not phased by his baptism; he certainly likes an audience and has perfected his camera face! We enjoyed lunch after at a pub with fabulous views; how lucky we are to have such beautiful countryside around us.

With handsome Henry.

Next week I have a 6 month appointment with a consultant. I don’t feel there have been any changes really which is fantastic!

Not just a tremor

For many people the very word “Parkinson’s” suggests a tremor and progress of the illness can be judged by this. However, 30% of sufferers do not have a tremor and it can often be other, less visible symptoms that cause more issues. For me tiredness is one symptom that can make life difficult. I tend to wake very early in the morning and subsequently can feel exhausted later on in the day. The amiable husband has had to stop me falling into my plate a few times! I try to do my most energetic activities in the mornings and not feel guilty if I have a 20 minute nap in the afternoon.

I am trying to be more aware of timing my dopamine tablets and working out how to get the best results from them. For example if I am playing badminton or walking the dopamine may not last as long as pottering about at home and I end up with a rather awkward gait prior to taking the next pills. It’s all trial and error really and one day may be different to the next. I feel it is important to try and find solutions without rushing into higher levels of medication which may well bring a whole set of new problems.

After 5 weeks away we arrived back in the UK just in time to watch the royal wedding, good to watch the nuptials of Harry and Meghan on such a beautiful day! We spent 4 weeks in Melbourne with the lovely daughter and handsome Henry before traveling to Singapore to help babysit while she attended a conference. He loved splashing about in the warm water of the swimming pool. Early one morning, it was very hot, we walked in the truly magnificent botanical gardens including the orchid section.

Orchids in Singapore Botanical Gardens.

Back home jet lag is at last beginning to fade. The amiable husband joined me for a trip to Covent Garden to watch Swan Lake, a magnificent new production. Although he would have preferred to watch Brighton playing football in the Premiership I think he enjoyed himself!

Australia House London.

While we were in London we walked past Australia House, I wondered when I will need my next visa!

Parkinson’s Awareness Month 2018

April is Parkinson’s awareness month with world Parkinson’s Day on April 11th and World Dance for Parkinson’s on April 28th. We were home at the beginning of the month and I joined a group from my dance class at London’s Guys Hospital where we performed a demonstration of what happens in a typical Parkinson’s class with English National Ballet. Recent filming there has been made into a innovative film including input from Parkinson’s dancers and some from the company. You can view this at

Before we returned to Australia there was just time to catch up with activities at home including helping lead a walk in what must be surely one of the muddiest walks ever. Five miles of trying to find the best path through fields and woods required great care, I even used walking poles! Parkinson’s sufferers are known to be prone to falls and I didn’t want a broken leg a few days before travelling “Down Under”!

There have been lots of social occasions with friends before we left, from Ladies who Lunch to a memorable 70th birthday party. I know how important it is to be out and about although anxiety can make it sometimes harder to relax and enjoy yourself. I have had one shaky hand behind my back or in my pocket on numerous occasions!

I have noticed recently that I seem to bump into people more often which is a bit disconcerting. I don’t think that even stone cold sober I would manage a straight line!

We arrived back in Australia on April 15th and noticed lots of changes and development in our grandson. A dear little boy has emerged who is happy and smiley, I accept we are rather biased! We are here to help as our daughter has just returned to work, we will take care of Handsome Henry where necessary. He currently has a viral infection so we will be performing a childcare role like grandparents everywhere even though 10,000 miles apart makes regular help tricky! Melbourne is very much our second home now and there are favourite places we like to visit time and time again. One of my most favourite is the beautiful Botanical Gardens, the children’s garden there is so well thought out and the peaceful main section of it is a constant delight. The variety of trees showcase the variety in the Southern Hemisphere and Henry seems to love the leaves.

At Melbourne Botanical Gardens.

We return home mid May, stopping off at Singapore for 4 days while the lovely daughter attends a conference there. We will be on baby sitting duty, should be interesting!

Publicity and Parkinson’s

I am the sort of person who doesn’t like going up for a raffle prize so quite what possessed me to walk into the offices of the local BBC Sussex radio station and within a few minutes find myself doing a brief interview I don’t really know. I was off to meet good friends for lunch in Brighton when I heard there was to be a phone in about Parkinson’s on the radio and I knew that I would be walking past the offices.

I had enjoyed a rare good night’s sleep and was feeling pretty good so maybe that would explain why I walked into the reception area to wish them luck and was suddenly transported into the studio being interviewed by Danny Pike. The questions he asked were not ones I was expecting but I hopefully gave coherent replies which erred on the side of the positive, all quite exciting. I had managed to phone a very surprised husband who listened to the broadcast after phoning a few friends. Afterwards when I walked into the restaurant I enjoyed a few minutes as a celebrity and we had a very lovely and loud lunch! Don’t forget, socialising is good for us Parkinson’s sufferers!

My second foray into publicity and Parkinson’s came when I went to my dance class this week. Graham Tilley was filming dance material inspired by English National Ballet’s “Voices of America” repertory at three of English National’s Dance for Parkinson’s hubs to create a short film for World Dance for Parkinson’s Day on April 29th. Everyone worked really hard and hopefully it will inspire others to try dance; we had a wonderful class filled with laughter and fun. I came out of the session feeling really energised with certainly no thoughts of having a chronic illness.

Recently I was on my way to the dance class in London when I realised I was rather early so I had a wander around St Mary’s Abbot’s church. I sat down for a few minutes and suddenly became aware of a presence. When I looked around I realised a little tabby cat had joined me and was purring loudly. He had a collar and bell so maybe he is a church cat? I have discovered a connection with St Getrude of Nivelles, the patron saint of cats and those who love them, I will return to find out more! As I moved away the cat made his way round all the pews perhaps giving comfort to those there. I love cats and am looking forward to looking after my son and daughter in law’s while they enjoy a well deserved holiday.

March has been a strange month. Snow and bitterly cold wind made staying in look quite attractive, I even managed to tidy out my spice cupboard and throw away all those way past their sell by dates.

We have at last sorted out our next trip to Melbourne to see the lovely daughter and Mr H, the Grandson. No doubt we will notice many changes, thank goodness for FaceTime