Nearly Christmas, somehow it creeps up on you at first then gathers pace until suddenly it is upon you. It is super to catch up with friends at this time and I have enjoyed meeting up with college and ex-teaching folk as well as Christmas lunching with my Ladies Who Lunch groups; good friends are invaluable.
A useful Advent Calender….wine for each day!
The lovely daughter flies in soon, great to have her home from Australia this year. I cry when she arrives and cry when she goes, however, we will be travelling “down under” in two months so will be seeing lots of her.
I saw the Parkinson’s nurse recently, she is a fountain of knowledge and ideas. She suggested continuing with Rasagiline as a platform and adding in a small amount of a drug I wasn’t familiar with called Trihexyphenidyl. I hadn’t researched that one at all! It is an older drug which should help with spasm and tremor. Like many of these drugs you start with a very small amount and build up gradually. I am still experiencing some unpleasant side effects but hoping they can be overcome with perseverance. They don’t include a gambling addiction so Kempton Park with my son and daughter in law should be safe! I have discovered that my new medication has been used recreationally by soldiers and police in Iraq!
However, I can report that I seem to be able to swim a bit better! Less spasm in my shoulder means my 24 lengths were considerably easier this week, maybe I can start building up again. It has also enabled me to swing my arm a bit more when I am out walking. Just waiting to see if I can serve properly again in badminton! I finally got to see the physiotherapist at the hospital and spent an interesting hour looking at where I am now and what else I can do to help, she had a couple of ideas like trying tai chi and maybe backstroke but basically I am doing all the right things. Next time she will focus on the stiffness in my shoulders. While I was there I met the lady who is Chairman of the local Parkinson’s group who, among other things, produce a magazine called “Shakers and Movers”. The current edition has a big focus on the importance of exercise. Coincidently I heard her speak at a recent charity concert. We had an interesting chat and I am going to send her my Blog.
We have started looking at holidays for next year, always cheers you up on a grey, wet day. Australia in March, Provence in June and the Danube in September looks good.
Happy Christmas and a healthy and happy New Year.
This month has been a mixed one. There have been lots of great places to visit and exciting things to do from opera at Glyndebourne, ballet and theatre trips in London to meals with wonderful friends. We had a fascinating insight into the world of politics with a trip to the House of Commons to listen to Prime Minister’s Questions and then a statement on the future of ship building. I was most fascinated by watching the interaction between people while my man was caught up in the politics!
At the Houses of Parliament
It has not been a very good month from the Parkinson’s perspective. Six weeks on medication has not had any positive results – but equally no side effects. I see the Parkinson’s Nurse soon and will have to review the treatment. The suggestion is that I will need to try something else such as a dopamine agonist, that is a much more scary prospect with possible diverse side effects from narcolepsy and nausea to addictions such as gambling! However, it can be a very effective treatment and works well for many people, we shall see. I have been recommended for physio but that could be a long wait. All the pilates and exercise definitely helps so I will be doing lots of that plus coffee and chat afterwards!
The lovely daughter flies in from Australia for Christmas which is fab and then on Boxing Day all the family plan a trip to Kempton Park Races; now shall I put a £1,000 on each race!!
Just back from a week in Italy exploring the area around Sorrento from the Amalfi Coast and Capri to Pompeii and Vesuvius. We were very lucky and had beautiful weather, perfect for sightseeing. There were no problems from the Parkinson’s, which was great.
At top of Vesuvius – rain cloud not steam from the crater!
Once home it was time to meet the new consultant, a straight talking man who was soon suggesting ways forward. I have agreed to medication as my left arm is really quite uncomfortable and the tremor is more noticeable. I have begun to take Rasagiline once a day. This is a milder drug than Levodopa and works by stopping the breakdown of dopamine, hopefully it will have less side effects. He also wants me to have physiotherapy to help my arm retain strength and muscle tone, not sure how long it will be before I get an appointment through!
Today I am full of cold so was about to turn to Lemsip, a comforting remedy, when I spotted that taking Rasigiline with a product that contained a decongestant is a bit of a “no no” along with aged cheese. Chianti used to be on the banned list but has been reinstated!
I feel disappointed that it is time to begin the drugs route but I have had a year to begin to come to terms with my “Parkinson’s Journey” and an accept that it will help me to have as normal a life as possible.
Interesting news in the papers recently regarding a new drug that could help prevent the death of brain cells in patients diagnosed with conditions such as Parkinson’s and Alzheimer’s.
Just back from a week walking along the coastal path of Cornwall based in the beautiful town of St Ives. We were lucky enough to have mostly good weather and were rewarded by stunning views at every twist and turn. Eating a picnic high up on the cliffs near St Michael’s Mount with the warm sun shining was an unforgettable experience. We had heavy rain on one walk and I did slip once on some rocks but circumstances meant anyone could have fallen there.
We also enjoyed a trip to the Minack Theatre which is cut high into the cliffs, to see a Globe production of “The Taming of the Shrew”, a unique experience despite the numbing seating arrangement!
Many years ago my children had their photo taken by the signpost at Land’s End prior to cycling for a charity to John O’Groats in Scotland so I felt I should have mine taken there too even if I was merely walking in Cornwall.
Land’s End, Cornwall
The Parkinson’s continues to have some impact on different parts of my life. This time it is the realisation that getting peas onto the back of a fork is becoming impossible and only by turning my fork over can I have a clean plate. Fine motor skills on my left side are definitely in decline! Also I have had to add some exercises to strengthen my rotator cuff, ie my left shoulder, as that area has become weaker.
Billy Connolly’s diagnosis announced in the last few days has raised the profile of Parkinson’s and I was interested to note that there are 127,000 sufferers in the UK.
Last week I went to the hospital for my second six monthly visit to the Parkinson’s Nurse. After checking in at Reception I asked about getting an appointment to see the new consultant in a few months. I was told that none of the patients under my previous neurologist had been allocated to a doctor and no-one knew how we could talk to anyone for advice about future appointments, all very unsatisfactory! The poor Receptionist was having to take all the flak for something beyond her control. On seeing the Nurse, relief, she had a letter that had been sent to my promised neurologist who has a specialism in both Parkinson’s and Dystonia. At the end of our meeting, we agreed that I could still manage without medication possibly helped by all the pilates and stretching I have been doing.
..lots of stretching..
Another discussion at Reception followed and now armed with said letter the Receptionist said she would take on the challenge and ring me. We had only been home for ten minutes when she rang having tracked down the agreed consultant and got an appointment sorted out; phew what a relief; what a wonderful lady. The local NHS certainly has issues that need to be resolved.
We have been lucky enough to have enjoyed a beautiful summer and I have felt fine generally. I led a 9 mile walk last week on a sunny day, beautiful wild flowers and butterflies all around us. I am looking forward to a week of walking around St Ives with many of the group in early September and then there is a trip to Italy and the Amalfi Coast to look forward to three weeks later…
Well, who would have thought that the Blog I started, after prompting from my daughter, would already have had more than 1000 hits! They have mostly been from the UK but there are a sizeable number from America and Australia and even the odd viewing from France, Canada, Japan, Turkey and South Africa, quite exciting. Most comments and followers are from the UK and I have been humbled to read such positive comments and thank everyone for the support I have received.
New York skyline from QM2
We are just back from a wonderful 3 weeks travelling across the North Atlantic and back on the Queen Mary 2 and spending 5 days in New York. It was suggested I might find that the rolling motion of the liner might upset my balance but it was fine, mind you we were lucky to have calm seas and walking 12 laps of the promenade deck daily, 4.4 miles, was generally pleasurable. What a wonderful way to travel. I tried an onboard pilates class but wasn’t impressed so just kept walking.
It is nearly 9 months since I was diagnosed with Parkinson’s. There has been some deterioration but it is very slow. The worst thing is not being able to swing my left arm when I walk although I try different strategies like copying the person in front, holding my bag in the left hand or tucking it in my pocket. My stiff back and shoulders are helped considerably by pilates and regular clinical massages. The fab lady who I see has made a little video to remind my husband and me of how he can help keep my left arm and hand strong and mobile; such a super idea. I have always been rather clumsy but tend to be more so now; can feel like a real old lady fumbling with cards and cash at the checkout – more organization needed! I have begun to realise that when I am driving, and feel the gears are stiff, it is probably because my left leg doesn’t exert pressure on the clutch so well. All are quite small things that are manageable.
In two weeks I am due my second visit to the Parkinson’s nurse so I must start to write a list of questions to ask, one of which is concerning the new consultant – haven’t heard from him at all!
I am pleased to say that following my 6 month visit to the consultant we agreed that I did not need to take any medication. I think once I need to take pain killers regularly, or it changes what I can do, I should accept the inevitable but I am not ready for that yet! I had been very pleased to transfer from the private sector to NHS under the same consultant so was disappointed when he told me that he had resigned from the NHS as from that day because of concerns about what was happening around him.
I think all the exercise does help and I now love pilates and go to classes 3 or 4 times a week, I’ve even tried using a roller….. swimming is tricky but somehow or other I can manage 24 lengths , on my front/back or just walking and feel very pleased with myself when I have finished.
I am enjoying my long walks still; left arm is a bit stiff but I am getting used to that. The lovely daughter recently flew in from New York for the weekend, as you do, and we walked through the bluebell woods marvelling at the colours, the beauties of England on a spring morning.
Bluebell wood in Sussex
Looking towards the South Downs.
I have, at last, heard back from the DVLA – a quite abrupt letter recalling my driving licence and issuing me with a new 3 year one with some restrictions. It brought it home to me that I can’t escape the fact that I do have a chronic illness.
I had a lovely massage recently, very soothing. True to his word my husband came along to learn how to stretch out the tendons in my left arm and hand, he copied on my bad arm what the masseuse was demonstrating on the good arm so now I am looking forward to daily treatments at home. He liked the part where the squeeze is a bit like a Chinese burn!
Only a month to the trip to New York – excited.
Easter traditionally marks the end of the Badminton season and for me it is time to end my 47 years of playing League Badminton. A combination of being the oldest in the club and the onset of Parkinson’s means that my play is on a slippery downhill slope and it is better to quit while you are ahead. Serving, once my greatest strength, becomes very tricky if your left hand gets a bit of a tremor as you try to drop the shuttle accurately! However, I have joined a daytime, friendly club where a lot of retired league players go and that can get quite competitive! I have made so many friends over those 47 years and many of those are my greatest supporters now.
… no more matches!
I have been back to the neuro physio to tweak my exercise routine and am now the proud possessor of a large gym ball to use alongside 3 other balls;-
– a blue gym ball for stretching and balance,
– a spiky purple ball for helping my feet,
– a squashy green ball for twisting and stretching, and
– a spongy tennis ball to squeeze to help my left hand.
I should be fit, if nothing else!
…. enough balls!
I am also pleased to report that I don’t feel so worried at the beginning of each pilates session and I am beginning to quite like it; certainly feels good afterwards.
I have decided to have more regular back, neck and shoulder massages. I am lucky enough to live close to a beautician’s where two of the staff are training to do clinical massage, perfect for me. They have invited my husband along to learn how to massage my stiff left arm and hand AND he has agreed!
To finish, in the UK this is Parkinson’s awareness week – this is to help people learn more about the condition. There are several items to read including on the BBC News website.
It is now 4 months since I heard those memorable words -“you have a dystonic presentation of Parkinson’s”.
I was thinking about what changes there have been, mostly creeping up so slowly that it is hardly noticeable for a while but nevertheless still there, some strange ones too!
The most annoying one is the aching neck and the rigidity across my shoulders which affects my left hand too. I have looked on the internet for neck exercises, not much choice there so I am adding them into my daily routine, any top tips gratefully received. Cold weather doesn’t help so last night’s sudden heavy snowfall after a few warm and sunny days wasn’t welcome, but it looked so pretty.
A balmy March day …
…. a few days later – snow!
A rather wacky assortment of quirky new things includes something funny going on with my eyelids and two crampy toes on one foot. As a lady who likes to shop I have to be careful when trying jeans on that I don’t overbalance. Separating eggs is a bit hit and miss, must make sure that I always have a few spare ones!
Overall though I still feel pretty good and can carry on as normal, so lucky to have a supportive lot of folk around me.
We were told by the Parkinson’s Nurse that I have to notify the driving licence folk (DVLA) about the condition, hopefully it’s just a formality. We were staggered at the number of medical conditions that are notifiable – well over 100. We completed and sent off the forms and they write to the Nurse and Consultant. After a month I have had a letter to say that they were expecting a reply from the Consultant in the next 6 weeks, what a long time!
As part of the “getting on with life” plan we have booked to go to New York in the summer, travelling both ways on the QM2 and then 5 days in the Big Apple, yippee, sounds fantastic.
I have also booked a week around St Ives in September with my walking group exploring an area much loved by my Mum, should be fine, I think.
Best foot forward then….
Beach walking in Australia – January 2013
Yesterday I had my first visit to the Parkinson’s Nurse at the Neurological Centre within the local hospital. Everyone I met from the Receptionist to the Nurse was pleasant and helpful and put us, my husband came with me, at ease. The main purpose I felt was for us to be able to ask any questions that we had thought of since the diagnosis, it’s difficult to think things through when you are hearing some rather scary news. We agreed that the disease was not making my daily life change yet and that I did not need to take medication. It was helpful to become aware of the variety of drugs available as that is something I do feel anxious about; I don’t like taking pills. The pattern of hospital appointments is every 3 months, the consultant at one and then the Nurse at the next.
I have joined Parkinson’s UK and look forward to keeping up to date with what is happening now and what may happen in the future, there certainly seems to be a lot of research currently underway.
I have completed the Pilates Induction course and can now enrol at classes in the local leisure centres. I felt that the lessons I have had have been particularly helpful with stiffness in my neck and shoulders. I did experience a few tremors during certain arm movements which was a bit unnerving but I need to get used to that!
One of the things I have noticed is that my toes on my left foot have a tendency to clump together. I am continuing to do exercises recommended by the neuro physio and have tried hard to use a small, spiky ball to roll under my foot to keep it opened out.
I have noticed that putting my left flip flop on after a pedicure is quite challenging! While in Australia I enjoyed walking barefoot through the sand as that seemed a good idea.
All in all I think the parting words from the Parkinson’s Nurse were very apt – “just get on with your life”.