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!
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!
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!
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!