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!
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 https://www.danceforparkinsons.online/work#/english-national-ballet/
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!
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
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.
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.
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.
I hope he will use his fame to help promote understanding among the public and be an inspiration to us all.