Parkinson’s is an illness that progresses very slowly, you can often work out how to overcome a problem before it becomes one. Recently, however, I came across an unexpected challenge that came out of the blue at a carol concert. We were all given candles to hold, the lights were dimmed and we all stood for the first carol. Well, I suddenly found that holding the candle meant I couldn’t just stand as usual and it took me a while to join the rest of the congregation; rather embarrassing! By the next carol I had realised that if I waited till the person in front got up I could hold onto the back of his chair, phew. I know that having difficulties getting out of a chair is often an early sign of Parkinson’s but thought I could do that easily, I was very relieved that at another Christmas service, with no candles, I could be one of the first standing!
Christmas is a lovely time for celebrating with friends and family. The “ladies who lunch” groups enjoyed lunch together at a country house hotel which was beautifully decorated. We ate in the library, set up for our party only which meant we could be as noisy as we liked!
Christmas 2015 at country house hotel.
Christmas and Boxing Day were spent with the amiable husband, dashing son and gorgeous daughter-in-law and, unexpectedly, the lovely daughter who flew in from Australia; what a treat to have us all together. A visit to the races saw smiles on all our face, my profit was only £8 but they all did better, no chance of me becoming a gambler which can be a side effect of some Parkinson’s medication.
This was my third Christmas with Parkinson’s, 2015 will undoubtedly see things continue to slowly change but with help and support from so many I am optimistic that it will be a good year.
This week was the second anniversary of my Parkinson’s diagnosis. I looked at some statistics regarding this unforgettable day and was shocked to find that 42% of patients were unaccompanied at these meetings. The amiable husband has been with me to every consultant and Parkinson’s appointment, as a support and as someone to make notes and ask questions. Two years on and things are more difficult but still manageable, I continue to just take the neuro protector medication which has no side effects and may be helpful. The dodgy left arm is a nuisance, particularly when walking but changes are so slow one can generally find a way round things. I am more clumsy and sometimes the fingers on my left hand tend to freeze and then need a bit of encouragement to get moving. People say I look really well and I certainly feel it. All the pilates, hydrotherapy, badminton, swimming and walking keep you fit! All the coffee, lunches and teas chatting with friends keeps you sane!
The Blog has now had more than 4,000 Viewings from over 60 countries. They are mostly from friends and acquaintances but I seem to have some daily from Brazil, which is interesting.
Earlier this month the amiable husband and I went with a large group to a hotel in Devon with a focus on sporting and art activities. I played badminton each morning, walked on Dartmoor daily, swam and enjoyed massages while he played different golf courses, did pistol shooting, archery and joined me on one of the walks.
..ready for action!
…walk on the wild side – Black Tor, Dartmoor.
We have been away several times this year with no problems so have booked a trip to the lovely daughter in Australia next March, a short cruise with college friends in April, exploring the Lake Como area in Italy in June and a walking break near Ludlow in September.
Looking forward to them all in 2015.
Parkinson’s affects everyone in different ways but up to 90% of sufferers experience changes to sleep patterns. This could be due to the condition itself, the medication taken or a combination of the two. I have always had vivid dreams but they are certainly more frequent and there have been occasions when I call out. However, I am quite lucky at present and generally manage about six hours which is fine but means that I am awake pretty early. This does have a couple of advantages. Firstly, I can book popular pilates classes at the local leisure centre, leave it after 6am four weeks ahead and the class will be full! Secondly, the daily newspaper is delivered just after 6am and I can enjoy the morning cuppa with an in-depth read before anyone else stirs; nicer in summer than winter though.
A friend recently gave me an article about foods that may help trigger the production of norepinephrine and dopamine which includes chicken, avocado, cottage cheese, bananas and peanuts – all things that I like so worth keeping at the top of the shopping list.
I find a glass of wine in the evening helps the tremor but I will have to avoid upping the amount to two glasses a night or fall foul of a new report which suggests a pill that could reduce the desire for a second glass – help, it’s a dopamine suppressant!
The Parkinson’s UK service users panel that I have joined is to meet again at the end of November to consider ways of getting more information and initial help to those receiving a diagnosis of Parkinson’s – none of us will ever forget that day. If you are a sufferer and would like to tell me about your experience that would be very useful, information from other countries would be fascinating.
October sunshine in Porto Cristo, Majorca.
This month’s holiday was four beautiful sunny days in Majorca at an apartment/hotel overlooking a marina in the east of the Island. Great value and a good way to make summer last a little bit longer. In November we have four nights at a sporting hotel in Devon; now there’s a challenge!
This month I have joined a choir, not an ordinary choir but one particularly for people with Parkinson’s. Thirty of us met at the hall rather wondering what we would find. Well, we have a wonderful, energetic and enthusiastic lady who makes you feel quite uplifted and try things you would never have imagined, even with my natural inhibitions. The name of our choir is to be Good Vibrations, very appropriate and important to keep a sense of humour! There is even a rumour that we may have our first booking. When I Googled “Music therapy and Parkinson’s” I was amazed to find out how many positive sites there are out there. We have our first admirer, a small boy on his way home from school, was heard to say that he thought
it sounded lovely! The singing is jazz based, I am more likely to sing along with Songs of Praise but I could be converted!
I have also joined a Service User Involvement Project for Parkinson’s UK, East and West Sussex. We had our first meeting this week and decided to look at how we can encourage consultants, GP’s, Parkinson’s nurses and others involved in supporting sufferers to mention the help that can be given by Parkinson’s UK, particularly upon diagnosis; “no one needs to face this on their own”. In the UK one person faces the diagnosis every hour. The group was rather small so the first task is to recruit some additional volunteers to give a more representative group.
…sailing along the Danube
It’s been hard to fit in a holiday this month but managed to squeeze in a very enjoyable week travelling by ship along the Danube visiting places such as Salzburg, Vienna and Budapest. It is an region we don’t know at all so all the more fascinating, I must go back and remind myself of some of the history, wonderful buildings from the time of the Hapsburg Empire and some amazing characters like Sissi, the wife of Franz Joseph and thus Empress of Austria, Queen of Hungary, Bohemia and Croatia.
On Sunday we travel to Majorca for 5 days, we found an offer too good to refuse!
This month started with a 6 monthly check up at the hospital with my consultant. My main aim was to develop our relationship more, we have many years ahead together – I did get him to smile this time! We agreed that not much has changed and until the Parkinson’s affects my lifestyle I will just continue to take the Azilect, a drug that increases the effect of remaining dopamine and is possibly a neuro protector. He doesn’t want to see me for 9 months unless the condition changes, which is good.
I think that I must be fitter than I have been for years! The pilates is brilliant for keeping flexible and I feel so good after classes I am more than happy to attend 4 sessions each week, I miss it if I can’t get there. I am getting better at fitting the Hydrotherapy into my life and find any equipment I need is available at our local pool in the health suite. The trickiest thing is trying to turn from floating on my back to my front, one way is easy but the other way I am struggling and have to work really hard, everything somehow involves core stability!
The waves at Noosa
When we were staying at Noosa in Queensland earlier this year the lovely daughter and I were jumping over the surf waves, suddenly a slightly larger wave came up and I was immediately swept off my feet and managed a back flip before surfacing (didn’t know I could even do one)! Now I realise that it was the poor core stability to blame!
I have met lots of lovely people during my physio visits to the local hospital including a fellow Parkinson’s sufferer who was diagnosed at about the same time as me, enjoys exercise and has a positive outlook. We live close to each other and have met for coffee to chat about our “journeys” and how they are both similar and different, good to support each other.
I have also met the organiser of the local Parkinson’s UK group and she has told me about a service users panel that is being set up locally to look at various issues such as how to get the most from the appointments with your consultant. I feel that I would like to become involved in some small way and this would seem very appropriate and meetings will be quite nearby.
We are continuing to holiday as much as possible while it is easy to manage, off on a river cruise on the Danube in September, guess “it’s make hay while the sun shines”! Long may it continue to do so…
Well, we made it! The lovely daughter and I walked more than 40 miles on, beside, up and over Hadrian’s Wall, built to stop the marauding Scot’s way back in the first century AD.
…alongside Hadrian’s Wall.
An unexpected heat wave made some of the climbs quite challenging but the amazing views when we got there made it all worthwhile; we could see for miles.
….amazing views along the walk.
At one point we found ourselves on the wrong side of the wall which necessitated climbing back over which was quite interesting! The Parkinson’s wasn’t really a problem, a few cramps in my toes on the first day and trying to keep the dodgy left arm occupied didn’t really hinder our progress.
I have now finished all the acupuncture and hydrotherapy offered at the local hospital and been very impressed with everything I have tried. I even managed to shop for a new red handbag at the stall in the entrance to the hospital! In particular I hope to continue the hydrotherapy in the pool at the local leisure centre two or three times a week, they have most of the equipment I need and hopefully I can tag this onto classes that I am already doing rather than making extra journeys there. The change of management there has made everything more difficult to organise but hopefully this is now improving slowly.
Next week I am back to see the consultant, it will be interesting to hear what he has to say. Although everything is just a little bit more challenging I feel I can manage at the moment without needing more medication. All the pilates and other exercise helps with the inevitable stiffness and keeps my spirits high, helped by all my wonderful family and friends.
This has been a busy month!
On the Parkinson’s front I have been very impressed by the help the NHS has been giving me over the last few weeks. Having completed six physiotherapy sessions I was recommended for acupuncture and hydrotherapy and this is really helping me to understand what is happening to my body. The acupuncture is fascinating, it is being used to help the muscles around my right shoulder blade which are overworking to compensate for weakness on my left side.
The hydrotherapy is helping to build up muscles on that side now and I can see that working in the pool could be a great help; I will need to make sure I have all the exercises written down! It really shows up the imbalance between the right and left…….
We have just come back from a short break in Provence, visiting the area around the Lac de St Croix which we have been to before.
We took friends to see the view from the top of the hill over the beautiful blue lake but on returning to the hire car found the back window smashed in, though there was nothing to take. Other cars had similar problems and at 2pm there was a multinational queue forming at the Gendarmerie, staffed by a policeman who could only type on the computer with one finger! Negotiations with the car hire company were lengthy and staff initially very unhelpful. At last the damaged car was towed away and we travelled by taxi to collect another much smaller car, at least it had 4 wheels and windows! Luckily the rest of the holiday was without further problems and we managed to do most of what we planned.
Back home our local leisure centre has new management from next week and we are all waiting to see what happens; will all the facilities be available? I have built up the pilates and other classes carefully so that they work with my life and don’t dominate it, got to leave space for all those lunches out with friends!
Today my Blog reached a bit of a milestone, over 3,000 viewings from 40 countries as far apart as Nigeria and the Republic of Korea.
We recently enjoyed a week near Quimper in Brittany, staying with friends we met 17 years ago on our first cycling holiday. It was always about travelling from one nice hotel to another rather than climbing mountains. Despite my concerns riding a bike was no problem, getting to the top of hills was more of an issue! I must get my bike out at home now that summer is here, just wish that there was less traffic.
Not quite Tour of France speed!
Back home there was a visit to my helpful Parkinson’s Nurse. We agreed that I would continue with Rasagiline, which could provide some neuro protection, and not take anything else at the moment. My biggest problems are, as ever, my shoulders and the tremor in my left hand. However, I am managing my symptons and feel well and positive. I am sure that all the pilates and other exercise really help and I am fitter than I have ever been! I have had my first acupuncture session, fascinating, and look forward to my hydrotherapy which starts next week, impressive NHS.
The lovely daughter is home during July and likes to set me a challenge so we are off to walk part of Hadrian’s Wall; four days averaging ten miles a day. I walk regularly with a walking group so think I have enough stamina. Not being able to swing my left arm is a bit of a problem and I keep trying different ideas to make it easier, poles weren’t really successful. You see so much more when you walk, people are always friendly and to be outside is a joy.
I have always enjoyed ballet and one of my Christmas presents was to become a friend of Covent Garden. I am going lots to watch everything I can, sometimes on my own but often with others. I love watching people’s faces the first time they go into the Opera House; it must be one of our most beautiful buildings. Most memorable recently must be the new ballet “The Winter’s Tale,” a fantastic production in every way.
All in all, no time for dusting!
Our last weeks in Australia included lots of visits to beautiful beaches, from the tropical Sunshine Coast in Queensland to the beginning of the Great Ocean Road in Victoria. I just love the feel of sand between my toes, walking along an empty beach as the sun rises is unforgettable.
The beach at Noosa
Then it was home to England and a beautiful spring awaiting us with bluebells at their very best and the first flush of vibrant green on trees and bushes. It was lovely to catch up with family and friends, especially my son who had been rushed into hospital with appendicitis, I love Australia but here in Sussex is my home.
The Parkinson’s hadn’t caused me any real problems, particularly once I stopped taking Clonazepam. Back here I contacted the nurse and we agreed I am not ready to take Dopamine Agonist or Levodopa. I will try Propranolol, a beta blocker. However I generally feel so well that I will delay that until necessary. The Rasagiline I realise has helped some symptons and I can swim 30 lengths without twisting or spasms and my sense of smell is back. Now I am in the system at the local hospital there has been lots on offer, physiotherapy, talks, maybe hydrotherapy or a taste of acupuncture – I’ll try them all! My only pain is my right shoulder, currently trying rolling a golf ball in a sock across the area! I even felt badminton seemed a bit easier this week. I am back to lots of pilates which is a wonderful help.
Next week it’s time for a few days in Brittany with friends made on a cycling holiday many years ago, will I be able to ride a bike still…….
This blog edition comes from Australia where I am staying with the lovely daughter. When in Melbourne this is the view from my daily walk – amazing.
It is a little easier to swing the arm in the warm sun but the current medication has not helped the tremor at all. Parkinson’s is a very individual condition and I will continue to search for the right medication for me. I have joined my daughter for my first attempts at Yoga but show no natural ability.
What an amazing country Australia is, so much to see and do. I loved our weekend in the Macedon Ranges, north of Melbourne, staying in a delightful farm cottage; freshly baked bread and cakes provided! We watched the DVD of the film “Picnic at Hanging Rock” and then the next day walked across the paddocks to explore the area and climb the rocks; didn’t find the missing schoolgirls! We did however find some delicious wines to try!
We also travelled in the bush with friends to Lake Mungo, a dry lake where human bones from 45,000 years ago have been found and features sand cliffs know as The Wall of China
I have now had over 2,500 viewings on the blog from 33 countries including many from Brazil and some from countries as diverse as Taiwan and Bosnia Herzegovina. Between 7 and 10 million people worldwide suffer from Parkinson’s and this will increase with an ageing population; we need to continue to work together to find a cure.