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

 

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The poker face of Parkinson’s

Loss of dopamine can affect the facial muscles resulting in a lack of expression sometimes known as poker or stone faced. This mask like presentation can cause challenging communications and negatively impact on relationships with others. In 2012 a Parkinson’s sufferer was arrested at the London Olympics for not smiling when watching British success in a road cycle race. You may be told that you have a serious, depressed or mad look on your face even when you are not in a bad mood. Recently I began to be aware of some rather strange muscle feelings around my mouth, not something I like the idea of really. I have found a series of exercises on YouTube which seem to tackle the problem so I shall try and do these a couple of times a week. Singing is a very good activity too so belonging to my local Parkinson’s choir can only be beneficial. Even at my dance class in London we spend 10 minutes working on our facial muscles. Let’s hope all this action can keep me smiling when I should be!

On a positive note I recently saw a neuro physio who was impressed by my lack of rigidity particularly in my upper body; thank goodness for the wonders of Pilates!

February has seen a catching up with friends after my 6 month stay in Australia following the early birth of Handsome Henry. No doubt we will be Down Under again soon but in the meantime the daily FaceTime fix keeps us updated with his progress. He certainly has an engaging smile!

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 Handsome Henry wearing his Brighton & Hove Albion kit.

Going out to lunch is always a treat with friends or family. A recent visit to Amberley Castle in Sussex, complete with a full set of armour on the stairs, was a lovely occasion in a magnificent setting.

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Amberley Castle, Sussex.

At this time of year when the weather is so grey and gloomy it is therapeutic to browse through holiday brochures and imagine the warmth and sunshine. We have planned a river cruise along the Douro River in Portugal with our wonderful Aussie friends who look after us so well, something to think about when there is endless rain here and snow forecast over the next few days.

I have now been doing this monthly blog for 5 years. Over that period I have posted 60 blogs and the site has had over 10,250 views from 97 countries around the world, including such remote places as The Maldives, Rwanda and Nepal. The top six countries in terms of views have been the UK, Brazil, Australia, USA, France and New Zealand. Thank you all for your support.

New statistics for Parkinson’s

Recently published statistics show that the number of people living with Parkinson’s in the UK in 2018 is estimated to be 145,000, that is 1 in every 350 adults and quite a jump from the previously estimate of 127,000.

The aimiable husband has given me a special pill container which has an alarm system for the times I should be taking Madopar, the Dopamine substitute that I take three times a day. I am hoping that taking the medication on time will improve the problems I have with my left leg and foot. I am also using my spiky ball to help, rolling it under my foot. It was quite embarrassing to have to keep stopping and massaging my left foot while pushing Henry, the grandson, in his Pram.

Foot exercise.

Sleeping is a continual problem with waking at 5.30am. I seem to then need a cat nap in the afternoons! Luckily the husband is a sound sleeper and doesn’t hear my nocturnal wandering to make tea, answer emails, listen to Radio 4’s “tweet of the day” and then put headphones on to listen to an episode of Desert Island Discs. The paper boy usually arrives just before 7am so I can catch up on all the news.

I have seen a new consultant but my 7 minute appointment didn’t offer a lot of advice or inspiration!

English National Ballet’s Classes for Parkinson’s sufferers has resumed and it was lovely to catch up with old friends after my 6 months in Australia. This week we went to the Coliseum to watch “La Sylphide” and “Le Jeune Homme et la mort”, very different ballets but both excellent. Back in Oz there was a short film about the class I belong to in Melbourne on local TV. National TV is now showing interest and will be filming the class soon. This week I am back in London to watch Matthew Bourne’s production of “Cinderella”; I want to make the most of every opportunity while I feel very well!

On the news yesterday it was announced that Neil Diamond has been diagnosed with Parkinson’s and cancelled the rest of his world tour.

Neil Diamond

I hope he will use his fame to help promote understanding among the public and be an inspiration to us all.

Return to Blighty

After six months I am home with the lovely daughter and baby. Handsome Henry behaved very well on the flight home, helped by us having managed to get a bassinet. My fears that we would be taking it in turn to pace the aisles of the plane were fortunately groundless. The dashing husband collected us and all the luggage and transported us home. Christmas was a wonderful family affair, so special for all the McKenzie Clan to be together.

Henry … Christmas 2017

I had an early present from the lovely daughter; tickets for an outdoor Paul McCartney concert at the AAMI Stadium in Melbourne the week before we returned home. Magical; he sang 35 songs and was received with great enthusiasm by the crowd.

Paul McCartney in Melbourne

At my last Dance for Parkinson’s Class “Down Under” the local television filmed us which was very exciting, two camera crew and one interviewer …. hope I can manage to find the programme on TV. The class has already grown to more than 25 following a photo in the local paper, great to see Parkinson’s getting good coverage. The teacher is inspirational and loved by us all. After Christmas I return to English National Ballet classes which I am looking forward to. We have a visit to the London Coliseum in January to see La Sylphide and L’homme est morte which will be great.

I visited my local Parkinson’s nurse soon after I got home. My left foot has been quite troublesome with claw foot, a jiggy leg and painful toe joint. My first action must be to be far more disciplined in taking my pills on time which I could get away with a year ago but not now. If I leave it much too long between doses it takes longer to get back up to strength and is more likely to cause problems. We agreed that I could take an extra pill if needed but not on a regular basis, I am not in a hurry to move on to more medication.

The local NHS trust seems to have a dearth of neurologists, in particular those that specialise in Parkinson’s. I am seeing a new consultant early in January so maybe things are looking up!

In a few days daughter and baby return to Melbourne, how I will miss them ….. time to start thinking when we might return for a visit….

The impact of Parkinson’s during hot weather

After a long cold winter, summer has arrived in Melbourne. We have had more than a week of temperatures over 30 degrees, very different to the UK, it is going to be a shock when we land at Heathrow in two weeks! On Tuesday’s I walk with a local group which sets off at 10am and completes 2 laps of a nearby park at a fairly fast rate, I like being with the front walkers but was horrified by how red my face is at the end! It took a couple of hours to return to normal. I am pleased they have brought the starting time forward this week and need to accept a slower pace.

It’s not just hot weather either. I have played badminton for most of my life and used to reckon I looked as cool as a cucumber at the end of a match but now after a few games the sweat starts dripping in my eyes, not an attractive look!
James Parkinson said that “when a nervous system is compromised by chronic disease your body may have difficulty responding to the heat”- I should take some notice!

Everyday I enjoy my walk with Henry along the sea front to the Sailing Club Cafe. Last Friday the forecast suggested possible rain so I took a shorter route and was just 50 yards from my destination when a squall came across the bay with great force. I was hanging on to the Pram with all my might but terrified that I couldn’t hold on. A nearby school boy and passing man came to the rescue. It took 3 of us to get to safety and suddenly the wind disappeared as quickly as it had arrived. There had been 3 Olympic size yachts out at sea. Two broke their masts and a nearby tree was uprooted.

I am now into the last few weeks of my six months in Australia to help the Lovely Daughter with her premature baby, Handsome Henry. He looks very bonny, smiling and chatting away. Australia’s preparations for Christmas are very different to the UK. I had to laugh at the sight of a snowman with tinsel wrapped round a rubbish bin!

Henry on the beach


We have made day trips to beautiful beaches, rain forests and a zoo and enjoyed the company of friendly Australians. Time now to begin to get ready for the long journey back to the UK where the family will meet for Henry’s first Christmas.

Social isolation and Parkinson’s

A diagnosis of Parkinson’s is a terrible shock and different people react in different ways. Some will begin to hide away and have less and less social interaction. The problems that can come with the illness, such as less mobility, a quieter voice or tiredness, make everything you do just a little bit more difficult. However, seeing friends, exercising and generally going out and about can really help.

Once I knew that I would be in Australia for 6 months helping with baby Henry I decided that I needed to have activities that I could do which would involve meeting new people and keeping reasonably fit. I was lucky enough to find a Dance for Parkinson’s class in Melbourne and have enjoyed meeting a new group of people all coping with similar problems to my own. I know how beneficial I have found my Pilates classes so have joined a mat class which is held just 10 minutes walk away; I seem to be the oldest there! A walking group meets locally and I walk with them once a week plus daily walks pushing the pram keeps things moving. I have been lucky enough to be invited to join a book club with a great group of local ladies; I just have to find time to read the books. The local library is very helpful and I have managed to borrow the chosen texts. Initially the first few meetings with each group have been quite nerve wracking but it has got easier and more enjoyable as time has passed. I have realised that I rely on others more than I used to and will need to be careful to be as independent as possible.

This month has seen the lovely daughter, Henry and myself head up to Sydney to introduce him to friends there and give us an idea of travelling with a baby. I am a nervous flyer and very anxious at airports so the lovely daughter had to cope with everything from prams to hiring a car, she did well. We spent a day in the city and pushed the baby through the Botanical Gardens, always a beautiful place to visit.

On Bronte beach, Sydney.

We also visited Palm Beach, a beautiful place where the television series “Home and Away” is filmed, simply stunning area. Filming was taking place while we were there.

Back in Melbourne for the last 6 weeks of my stay here. Baby Henry is now more than 4 kilos and delights us with chuckles and chats. Each week brings something new which is a privilege to see. Tiring, yes but worthwhile definitely!

Melbourne is warming up so I should have sunshine before joining winter in the UK

Pushing the Pram with Parkinson’s

I have now been in Melbourne for more than three months helping my daughter with Handsome Henry, a baby born 8 weeks early. He has more than doubled his birth weight and is smiling and focusing well.

Handsome Henry


He is not very good at sleeping, colic does not help so we are out and about with an ergo baby carrier and, of course, a pram. One problem with Parkinson’s is that there is a tendency to lose your confidence and become very anxious about anything new. It is only the last few weeks that I have felt happy taking Henry out on my own and thus give the lovely daughter a bit of a break! I know all the smooth pavements and safe places to cross busy roads and have mastered the breaking system, it is quite a responsibility. He is very happy in a baby carrier but I am still a bit concerned that I might trip so only use that indoors, falling being an issue with many Parkinson’s sufferers. Spending time with a new baby though takes your mind off everything else. The amiable husband, now back in the UK, is busy rebooking my appointments with the Nurse and Consultant that I had to cancel when we dashed out here to see Henry.

I now have Wednesday as “staff” day off and have enjoyed travelling into the city by bus, train or tram to explore. I have been to the Dior exhibition, enjoyed an organ recital in St Paul’s Cathedral, visited the Botanical Gardens and used self guided walk notes to explore Melbourne. Next week I go to a recital by the Melbourne Symphony Orchestra. The lovely daughter has arranged a massage as a treat today, I have not been doing as much stretching as I do back home.

I go back to the UK mid December; will I have resisted the temptation for my voice to go up at the end of sentences like so many Australians!