Staying in Australia and managing Parkinson’s

Young H.

Life Down Under has calmed down. Baby H, so tiny when born, has been making good progress and could soon be home. He has had wonderful care from the hospital where he was born and at a brand new neo natal unit where he initially had his own nurse! We are in a routine of chauffeuring the lovely daughter and visiting the tiny grandson for a daily cuddle.

I have been anxious to do more exercise and have now started a Pilates class. As there are only four or five in the group there’s not many places to hide! I have also joined a group that walk round the local park twice and then adjourn for a coffee. I was invited to go along to a book club earlier this week, interesting to see similarities and differences with the one I belong to in Sussex. Hopefully, with glorious walks along by the sea I am doing enough to help the Parkinson’s.
As I had missed my recent appointment with the Parkinson’s Nurse I emailed her asking for advice about the claw foot I get first thing in the morning. It is becoming rather a nuisance and it was good to share things with her and look at possible solutions. I was very impressed when she emailed me back the next day, brilliant service!

We have been back in Australia for nearly six weeks and there are many things that I love here,-
The friendliness of the people, always cheerful and ready to help, “no problem” is the common term used,
The coffee shops, Melburnians love their coffee,
Going to house auctions, real street theatre,
The excellent medical care.

I am not so smitten with:-
Graffiti; seems so much as you travel in towards the city centre,
Most houses only have showers; I love a soak in the bath,
Turning right at junctions – hook turns, U turns & turning in front of oncoming traffic rather than behind – unique to Melbourne!

Once H is home our days will change again as he settles into a life outside hospital. As all his energy has been going into feeding we have not yet heard him cry properly!


Only 3 months Parkinson’s prescription allowed.

This month’s Blog will be brief, you will appreciate why!
The lovely daughter was expecting a baby in August and as there were signs it might be earlier we thought it best to start sorting out travel insurance, visas, etc, particularly as I will be staying in Australia for up to 6 months. Things were going well until I took my prescription for Parkinson’s drugs to the doctors surgery and asked for 6 months supply. After several trips to and fro the answer came back that under the NHS regulations three months is the maximum amount allowed. I will need to get a prescription from an Australian GP, I will take my UK one with me for evidence. So be wary if you are going to be away for a long time!

We had just got things sorted when the call came that we needed to be in Melbourne at once. We got flights the next day and got to the hospital as the Doctors announced they were going to deliver the baby immediately.

In my scrubs ready to go into theatre.

I was kitted up in scrubs and joined the lovely daughter as they performed an emergency Caesarian and baby Henry was born weighing a lightweight 1.67 kg. He is in a brand new neonatal unit where his lungs are being supported, he is improving steadily. The amiable husband is getting good at driving to and from hospital. It may be some weeks before the baby comes home.

As I will be in Melbourne for a while I am planning to join the Dance for Parkinson’s class again; they make me very welcome. I have had to miss my appointment with my lovely Parkinson’s Nurse at home and will have to creatively manage my “claw foot” which I get in the morning which possibly indicates that I am under medicated. If I put a lace up trainer on that foot it helps but it’s not very comfy in bed!

I look forward to my first months as a grandma and holding my new grandson.

The problems with “claw” foot.

My initial diagnosis of Parkinson’s was four and a half years ago when I was told that I had a dystonic presentation of the illness. This meant very little to me then but recently I have begun to realise that much of the problem with my left foot could probably be described as dystonia. First thing in the morning when I get out of bed the left foot turns into a claw, curling tightly under.

Left foot in the morning.

Walking on it is very difficult, helped only by putting my trainers on, some massaging and rolling with my spiky ball. This could possibly be due to under medication but as I am not in a rush to increase it I am seeing how much I can do to help myself. I read somewhere that potassium may be helpful so trying a banana with breakfast each morning. Sometimes, leading up to the next dosage of dopamine, the foot goes into spasm which makes my gait rather strange and uncomfortable. There are quite a few pairs of shoes in my wardrobe that I hardly wear! I am still managing to continue walking though and recently led a seven mile walk in countryside around the Bluebell Railway, very beautiful but quite hilly!

At the beginning of May we joined our Australian friends for a week on a canal boat on the Kennet and Avon Canal from Bradford on Avon to Bristol. Meandering slowly through the countryside was a great, very restful, experience and we found country pubs to moor up by in the evenings. We spent two nights right in the centre of the floating harbour in Bristol which enabled us to explore a city none of us knew, a visit to Isambard Kingdom Brunel’s SS Great Britain is certainly a must. The only aspect of the trip not so restful was the LOCKS. I was pleased that physically I could manage the winding up and down and pushing open 4 ton gates but I found I coped best if I could copy the person (usually the amiable husband) on the other side.

Opening the lock gates.

When it came to a flight of five locks at Bath I was only too happy for the volunteers to take over!
I think we all felt rather sad when the week ended

In praise of Symfunny, raising funds for Parkinson’s research

I have now been back from Australia for three weeks, jet lag has faded and I have adjusted from Autumn to Spring! The bluebells look stunning, walking through woods is such a pleasure.

Bluebells near Burgess Hill, Sussex.

Our local choir, the Good Vibrations, have just had their annual jazz evening and we were well supported by family and friends. We had seven songs, our most ever. The next day saw the beginning of Parkinson’s awareness week with the slogan “We won’t wait” (relating to the need for a cure) and a whole programme of events both local and national.

Last week a group of us went to see Symfunny at the Royal Albert Hall, a concert to raise funds to help with research into a cure for Parkinson’s. The main drug, Dopamine, for treating the condition, hasn’t changed for over 50 years and only masks the condition for a time and has lots of side effects.

Symfunny No2 at the Royal Albert Hall, London

We saw a whole range of performers from singer Katie Melua to comedians Jason Manford, Josh Widdicombe, Jack Dee and the “I’m Sorry I haven’t a Clue” team, from Pete Townshend of the Who to singer Aled Jones. The comedy writer Paul Mayhew-Archer who wrote such sitcoms as “The Vicar of Dibley” and “Mrs Brown’s Boys” also made an appearance. Despite having had Parkinson’s for 5 years he continues to work hard and has been commissioned to write a romcom about romance blossoming in a Parkinson’s ballet class which made me chuckle! Saturday saw the summer term start at English National Ballet Dance for Parkinson’s , we are focusing on the “Rites of Spring” which is completely new to me.

At the beginning of May our Australian friends will join us for a week on a narrow boat travelling from Bradford on Avon through Bath to Bristol. We have never tried this kind of holiday before, lots to learn. If I am on lock duty I hope it is easier than it looks! Fingers crossed for some good weather.

The “Shaking Palsy” two hundred years on

James Parkinson was a physician and chemist, born in 1755. In 1817 his pioneering work “An essay on the shaking palsy” established the foundation for improved knowledge, study and understanding about the collection of symptoms – tremors, rigidity and slowness of movement. After his death, in recognition of his contribution the illness became known as Parkinson’s.

I am pleased to report that after nearly a year I have seen a general neurologist. He was very pleasant and I was delighted that he likes to look at the whole picture rather that just focusing on pills. I was able to tell him about Dance for Parkinson’s which is becoming more and more popular. My left foot is rather claw like first thing in the morning which can be quite uncomfortable. It could be an indication of under medicating and I may need to consider taking something at night in the future. Firstly, I think I must try more stretchy foot exercises and have my spiky ball to hand.

Thus checked out it was time to board the plane and set off to visit the lovely daughter “down under” for a month. Our first activity was a visit to a gin distillery where we added a variety of botanicals to a juniper and coriander base. As a non gin drinker I was pleased that my completed bottle was surprisingly pleasant. The amiable husband was more confident and skilful and very happy with his final result, it seems to be going down well! We then headed for Tasmania and revisited the beautiful Freycinet National Park where we walked to Wineglass Bay and back via Coles Bay, a 12kms trek which seemed more taxing than we remembered from a number of years ago! Back in Hobart we travelled to Bruny Island where a 3 hour exploration of the coast in a jet boat was a thrilling trip with a viewing of a rare albatross plus many other sea birds and fur seals.

On Mother’s Day we drove to to the start of the Great Ocean Road near Torquay and walked part of the Surf Coast Walk, great fun watching all the fanatical surfers, finishing up with fish and chips at Anglesea Surf Life Saving Club.

On the Surf Coast Walk

When we are in Melbourne my favourite walk is along the coastal path with views one way of the city, the other towards the Marina. I enjoy finding a quiet space in a sandy bay to read or watch the activity around me, kite surfers jumping high in the air as they twist and turn are wonderful to watch. The photo is of the Brighton Bathing Boxes which have been part of the beach landscape for over 100 years.

Home again and time to prepare for Parkinson’s Awareness week from April 8th – 15th, lots happening everywhere. Our local choir, the aptly named Good Vibrations, will be performing on the 7th to kick off events in Mid Sussex.

Long haul flying with Parkinson’s

Next week the amiable husband and I travel to Australia for a month of warmer weather, staying with the lovely daughter in Melbourne. As we start the packing I realise that this is the first time I have been on a long haul flight since taking the dopamine, medicine which requires taking at the same times daily. Obviously as Australia is 11 hours ahead of us it will need a few alterations to the schedule so it is going to be a bit of a learning curve! During our trip we will be spending a few days in Tasmania, visiting the beautiful Wineglass Bay and Bruny Island.

Wineglass Bay, Tasmania

Wineglass Bay, Tasmania

Recently I joined the walking group on a seven mile walk close to the South Downs (but with a promise of not climbing to the top). However, we were walking at quite a good pace and were too early for our pub lunch so agreed to add an extra loop. We didn’t realise until it was too late that the path climbed steeply nearly all the time. Half way up I became aware that my left arm, which had been swinging well, had stopped moving and didn’t know what to do with itself. I then realised that the dopamine had been all used up before the next pill was due! When I looked at my Fitbit it told me that I had walked the equivalent height of 77 stairways, no wonder it was a bit of a struggle!

I always look forward to Saturdays and my day in London, the morning shopping and the afternoon at the Dance for Parkinson’s Class with English National Ballet. Recently I began to think I needed some sort of shoes to wear but not ballet pumps as my left foot tends to curl up a bit in them. It was suggested that I should get some soft shoes with a strap more commonly used by dance teachers. Armed with lots of advice I visited the famous ballet shop called Freeds near Trafalgar Square. What an amazing place, I could have sat watching the ballerinas there who piroutted and twirled on their pointes all afternoon, fascinating. I left with my shoes which will be ideal once worn in a bit and very soft and supportive.

The new shoes for ballet.

The new shoes for ballet.

As storm Doris rages around us it seems very strange to be laying out summer clothes ready to pack. Knowing that Melbourne can see all four seasons in a day it will require some careful thought!

Old and new research to help treat Parkinson’s

In 1961 I was staying in Edinburgh with friends of my parents when newspapers began publishing headlines about a new drug that would revolutionise the treatment of Parkinson’s. The tabloid papers focused on side effects which could include obsessional traits such as sexual behaviour, gambling or shopping. The husband of the family had Parkinson’s and because he had a bad tremor I kept away from him as I didn’t understand his illness and it seemed very scary. That drug was levadopa which is still the gold star treatment. Over the years it has been refined considerably and provides a reliable source of dopamine with less side effects.
There is a lot of research currently under way which, hopefully, will bring new treatment for sufferers. It includes deep brain ultra sound therapy to help those whose tremor is particularly bothersome. Scientists are also looking at the theory that Parkinson’s possibly starts in the gut. Another area being explored is that existing drugs could be repurposed for treating the disease. This week there was even an article about possibly using Sharks liver to treat some of the symptons!

Research is very necessary but costly, fund raising is an ongoing challenge. On April 17th this year there is to be a concert at the Royal Albert Hall in London called Symfunny No2. The first concert held last year was a great success and already stars such as singer Katie Melua, comedians Jack Dee and Josh Widdicombe, the team from “Sorry I Haven’t A Clue” and the Brighton Philharmonic Orchestra and Choir have signed up to take part this time. The idea for the concert came from James Morgan, a music producer, composer and conductor who was diagnosed with young onset Parkinson’s at the age of 42. He lives in Sussex and came to talk to our local group of Parkinson’s UK recently.

Symfunny 2 at the Royal Albert Hall in April

Symfunny 2 at the Royal Albert Hall in April

We saw the New Year in with friends at a murder mystery party set in Roman times. We all dressed up and had a great time even though after the first couple of rounds nobody could remember what was going on!

Murder Mystery New Years Eve.

Murder Mystery New Years Eve.

Despite the bitterly cold weather, and the ongoing problems with Southern Railway, during January, we managed to see the Nutcracker at the Royal Opera House, a real feel good ballet and Red Shoes at Sadlers Wells. Saturday classes have restarted with English National Ballet in London and we are focusing on the original Giselle production this term.

Hopefully I will be allocated a new consultant soon, I haven’t seen a doctor since last May!