A glimmer, Nine weeks into lockdown with Parkinson’s

Nine weeks since our lives changed for ever; mix Parkinson’s and Corona virus and what do you have but a picture of what has been described as an inevitable uncertainty. Parkinson’s is an illness that keeps you on your toes, never sure what will happen next!
May has been a glorious sunny month, we wake, however early that might be, with the birds singing, flowers opening and endless blue skies. The month started with VE Day and celebration in the streets remembering “Victory in Europe” day. Under strict guidelines we managed to share a happy evening with good friends and neighbours. Was that a tiny glimmer of something normal?
There was a step back though when I received a letter saying I was “extremely vulnerable” and should not go out of the house for 12 weeks from early May. I was previously told I was merely “vulnerable”! Fortunately I had a telephone appointment the next day with my consultant who told me the letter was a mistake. Never have I been so relieved.
As the month progressed exercise was allowed for as long as you liked and as often. By the end of May I managed some longer walks with friends and then latterly with the lovely daughter who was accompanied by Handsome Henry who introduced me to Peter Rabbits woods … as ever reminded of the need for social distancing. Another glimmer perhaps?

Peter Rabbits woods

One day I was looking at the website for English National Ballet and found details of a Dance for Parkinson’s virtual class taught by the brilliant team of Kate and Matt whose classes I enjoyed so much before the virus struck. Wonderful, maybe in time to come they may run again and it will be feasible to safely catch a train to London. There are lots of dance ideas, well worth a look.
Let us all help to keep the glimmer glowing!
Keep safe.


Five weeks into lockdown with Parkinson’s

Well, how our lives have changed in these last weeks. Will they ever be the same again?
People with Parkinson’s tend to be an anxious lot and I certainly am concerned about the future. Sleep, always a problem for me is worse than usual which makes me feel permanently tired.
I miss the days when we usually look after Henry. When will all the family be able to have a meal together? The first couple of weeks it was fine to catch up with all those jobs we have been meaning to do but never get round to but now I just want my old life back. As I become more aware of Parkinson’s symptoms I want to make the most of enjoying each day and Corona virus is stopping that.
Enough moaning, we have much to be glad about. The weather has been glorious and I have been out walking every day.The bluebells have been beautiful.

Bluebell wood

Reading in the garden and getting lost in a book is a real treat.

The introduction of Zoom has made it easier to keep in touch with friends, be it a virtual coffee morning, book club or lunch.
Our lovely Pilates teacher puts weekly classes on YouTube which keeps the stiffness away.
Roll on the day, sometime in the future when we get our freedom back, it may be a while for us unlucky enough to be in the vulnerable group,
Keep smiling AND stay safe.


Changing Times – Coronavirus

I have tried to write a blog for this month several times but the situation with regard to the coronavirus keeps changing daily so this will be brief.
Parkinson’s UK have sent out information plus have various help lines open. The local branch has cancelled their AGM and all the exercise classes plus plans for a variety of summer events. I note that those with Parkinson’s are no more likely to catch the virus which is some consolation.
Earlier this month Channel Four broadcast a programme called “How to Beat Ageing”. The last 15 minutes of the programme is about the part that dance can play in helping those with Parkinson’s. It is certainly worth a look; the lesson raises the spirits of the participants and the joy you see on people’s faces says it all. It is available for a couple more weeks on:-
https://www.channel4.com/programmes/how to beat/on demand/70184-001
You can also find it on catch up TV
Stay safe


Local Leisure Centre

Visiting the local leisure centre can provide lots of activities to help with Parkinson’s.
People can be very kind. Some Pilates classes that I attend are in a large studio. I always stand in a space where I can hold onto the wall if there is a lot of balance work. Regular members of the class know this but if anyone new should arrive they are soon moved along and told of my need and why; they really look after me!
Since Henry, our 2 year old grandson arrived from Australia I have become aquainted with a very different part of the centre, the soft play area. There we slide and squeeze through rollers, jump in the ball parks, crawl through tunnels and wobble across rope ladders. He will take my hand and see me safely through! He knows though that I don’t like the dark, twisting slide – only Mummy does that!
On another day I play badminton. In a way it is quite sad because my play is not of the standard that I used to have but I know running around is good for me and I have made new friends there. With a weekly swim as well I feel I certainly get my monies worth  from my membership
Helping the local Parkinson’s UK group is a worthwhile activity which also keeps me in touch with what is going on in my area. There are an increasing number of younger people being diagnosed with the condition and we hope to give them an opportunity to meet and share ideas with others similar. Looking after a young family and coping with work and Parkinson’s can be a daunting prospect.
The lovely daughter and handsome Henry will soon be moving into their own home. It is only a fifteen minute drive away from us and I am sure we will still see them very regularly. We will miss them and our early morning starts!


Swimming round and round

One of the first strange things that happened to me before I was diagnosed with Parkinson’s was that my weekly swim was becoming difficult. I seemed to be swimming round and round and not getting anywhere. My weaker left side seemed to turn under me. I had gone from swimming 400 metres to a very laboured 50 metres. Incredibly since taking the dopamine I can swim the 400 metres again, slowly but at least straight. I just have to remember to take my pill an hour or so before getting in the water!
Another strange thing is that recently I have not had the dystopia in my left toes so much and if I do I can usually cure it but putting my trainer on that foot.
There are are unfortunately some areas which are worse, particularly my memory. I often forget words or where I have put things, usually my glasses or keys. What many people are unaware of is that many Parkinson’s symptoms are not visible, they are often the most troublesome. I am lucky too that Pilates four times a week seems to prevent stiffness and pain, I do not take painkillers. I treat myself to a massage every few weeks which is wonderful!
The last three Saturdays has seen me in London to watch ballet. The lovely daughter joined me for “Copelia”  at the Royal Opera House, the dashing son enjoyed the swashbuckling tale of adventures at sea in “Le Corsaire” at the Coliseum and lastly to see “Onegin” which was beautiful. Additionally I joined the aimiable husband at the football and helped Brighton secure a rare victory!
The lovely daughter is all set to move out into her own home in March in the picturesque  Sussex village of Lindfield. How we will miss them but I suspect we will still see them very regularly!


To celebrate our wedding anniversary we recently enjoyed lunch at Gravetye Manor. The new restaurant brings the garden inside and the food was well worth the Michelin Star.
We all need treats in January!


End of a Decade

Today is New Year’s Eve and we  are off for a murder mystery party to celebrate the end of a decade. I am usually in bed by 9pm so I think a daytime sleep is going to be necessary or I am likely to nod off. I have been known to doze momentarily with a gin and tonic in one hand; luckily I didn’t spill any! Tiredness continues to be the worst of my Parkinson’s symptoms followed by a left leg which tends to twist, throwing out my hip and knee rather awkwardly. However, that is only for part of the day.

The local Parkinson’s UK group, with membership of over 200, has been busy with Christmas activities including lunch for 90 at the local golf club. I wore my committee badge and met several people I had not seen before which was excellent. I am today taking the bi-monthly Branch magazines (titled “Shakers and Movers”) to local doctors surgeries. These will hopefully provide information for anyone just diagnosed or looking for help.
Our English National Ballet “Dance for Parkinson’s”  classes have finished for a few weeks. During our last session we were filmed for a TV programme about healthy living on Channel 4. This should be broadcast in February, more details when they emerge. We were working on a new version of Giselle by Akram Khan using sticks to punish the men!


In January the class outing is to see Le Corsaire which should be great. The dashing son is  coming with me, I hope he enjoys the adventures of a pirate and his feisty girlfriend on the high seas.

Last week I went with the amiable husband to watch Brighton play Bournemouth in the Premiership. The Mighty Seagulls played well and won 2-0. It was an exciting game with much more attacking play than when I last visited some years ago. The weather was dry and fairly mild which was a bonus, I certainly notice the cold more!

Brighton – The Mighty Seagulls!

The lovely daughter and our grandson are still staying with us but will be moving a few miles away at the end of February. Watching Henry’s vocabulary increase every day has been wonderful!
This will be the first winter that we have not spent some of the season in Australia. We may have have had relentless rain and grey skies but that is infinitely better than the terrible fires they are experiencing Down Under.


Some good, some not so good, seven years of Parkinson’s

A reflection of the current situation.
The good things are many including;
– Managing most things.
– Driving, albeit only locally.
– Symptoms well controlled by medication, mainly my dopamine substitute.
– Enjoying times with friends, old and new.
– Pilates keeps stiffness at bay.
– Singing in the local choir for Parkinson’s  UK.
– Being part of Dance for Parkinson’s at English National Ballet in London.
– Swimming in a local pool.
– Helping on the local committee for Parkinson’s UK in the local area – over 200 members.
– No pain.
– My problems are mostly on my left side, luckily I am right handed.
– Coping with cooking, follow recipes.
– Being able to get up and down off the floor to play with our grandson and read copious “Thomas the Tank Engine” books!

Thomas and Friends

Not so good but manageable are things like;
– Clumsiness, from dropping glasses to not being able to do up the car seat belt for Handsome Henry.
– Sometimes having a very dry mouth.
– Getting more anxious.
– Not always being able to sleep so need a nap some afternoons.
– Being more forgetful.
– When walking I can get an uneven gait, I call it my “jiggy” leg.
– I am still playing some badminton but my ability is poor now!
– Needing to go to the loo more often.
Support from family and friends is a wonderful help; I am very lucky.
Have a Happy Christmas!