Cocktail-Sleep and Parkinson’s

If only we could be like cats. Cats seem to have no problem sleeping anytime anyplace anywhere. Those of us with Parkinson’s face a more complex situation.

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People with Parkinson’s are often tired. That is probably the biggest understatement I have ever made on this blog. The problems we face include symptoms of Parkinson’s weak bladder, not turning over in your sleep, restless leg, body not wanting sleep at night time. Far from an exhaustive list but you get the picture. Another issue is fatigue which I can describe as feeling extremely tired even after a goodnights sleep. This can combine with medication that help movement but cause daytime drowsiness and possibly also disrupt sleep at night. We can also add antidepressants to the list as some disrupt REM sleep.

The variety of issues, require a variety of solutions. My recommendation to anyone with Parkinson’s and sleep issues is to first attempt to identify your own issues Then try and address the specific issues One thing I will ask is don’t just write off the standard good sleep practice advice. Try it and be aware that it may not solve problems but can limit them. Sleeping better now and again is a step forward from sleeping badly all the time. One simple thing that helped me was using curtains that actually shut out the light.

Cocktail

Shaken and stirred

But no Martini

Not 007

So no girls in bikini

 

Recipe for

Cocktail includes

Symtoms side effects

and your mood

 

Fatigue,Sleeploss

Daytime sleepiness

Usual suspects

Play tiredness chess

 

Learn the rules

Go for checkmate

Why waste time

Why wait?

I read a lot of blogs and postings online on support websites and something caught my attention. A large proportion of people taking the Dopamine Agonist Ropinarole felt it made their sleeping worse. This caught my attention as I take Ropinarole and started to wonder if there are strategies that can help.

Armed with anecdotal evidence I asked fairly unscientifically for more information which neither confirms or disproves anything. So this time I am going to ask a series of questions.

1)Do you take Ropinarole?

2)What dose and how is it spread across a day? Please include if it is prolonged release.

3)Do you think if affects sleep and if so how?

4) Do you think it causes obsessive behaviour?

5) Are you unable to sleep or avoiding going to sleep?

6)What other Parkinson’s medication do you take?

 

So why these questions? When I started Ropinarole I was told it could cause obsessive behaviour but not linked to sleep. I was also told it could cause daytime drowsiness but not that it might also affect night time sleep. To me this is an important issue. To get the best out of treatment we need to understand the issues. One example of this is the prolonged release. Ropinarol Who knows how the release works? The tablet is designed to spread a dose over 24 hours and has three coatings so there are three releases. An initial release one after about 8 hours and the final one about 16 hours after taking. This is not often volunteered but is useful to know when deciding what time of day to take the dose but despite this it is only usually explained to those asking direct questions.

 

What will I do with any information you give me . Collate it remove anny names and use it as a basis for asking questions to Parkinson’s UK.

  • What research has been done on Ropinarole disrupting sleep?
  • Have any behavioural issues been identified as causing disruption to sleep?

These types of questions are highly important because sleep is necessary to function and at the moment it may not be identified to users of this drug. This is important because if you suffer behavioural issues due to this drug it is highly likely your instinct will be to ignore any negative impacts caused by that behaviour.

If you do take Ropinarol and are prepared to tell me about you can comment on the blog if you are happy for others to see the reply or if you want privacy use my email address.  Jonbest13@gmail.com

Take care

Jon

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Dad and Daughters Dayout

Dayout for Dad and Daughter

With Half term looming I booked a couple of days off.to spend time with my daughter. She is very artistic so it seemed a good idea to suggest we go to the Tate St Ives. I am curious to see what she connects with and what she doesn’t.

I also bought a new CD to play in the car something we both like, ”Death of a bachelor” by Panic at the Disco. They have an apt name because panic  sums up my attendance of disco

We set off ready for a day of culture with St Ives a bit more than a hour away. After an hour we reach Lelant and at a roundabout the signs point in a direction that surprises me so I follow my instincts and go the direction I expect. But after ten minutes and no more signs I give in and turn around. I head back to the roundabout and follow the signs which take us into St Ives but take us around it heading in from the other direction  We reached St Ives and are almost at the carpark what could go  wrong.?

I take a premature right before he carpark but no worries because if I keep left this narrow lane should come out on the other side of the carpark. Unfortunately I didn’t anticipate car in front of me getting stuck. He had a large trailer and could go no further. With little room to spare I managed to turn the car in someone’s gateway and this time without passing go went straight to the carpark. Seemed a goodtime to stop for tea

After a cup of tea we headed down the hill into St Ives and managed to find the Tate St Ives Barbara Hepworth Museum. Barbara Hepworth a sculptor and internationally important artist I summoned my sum total of knowledge about Barbara convincing Ilona that I truly knew bugger all. So we went around the museum and although I have been there before I didn’t really connect with her sculptures . Many of the larger ones just leaving me wondering how they had looked in the places they were made for.

 

Now it was time for the main event. Having realised the conflicting signs for the Tate were due to some being for the museum and some the gallery. I located the gallery and as I was getting my camera out Ilona pointed out it was closed. I turned and read the signs  and it was closed until 31 March for building works.  Feeling foolish for not checking and trying to find something positive to say I pointed out the lovely sandy beach and that we had seen the famous St Ives light said to be the reason for the place’s popularity with artists.

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We started to trudge back through St Ives and hungry and my legs a bit tired wondering how Ilona felt. She had voiced no complaint but I knew that her love of walking was lost somewhere in the Bermuda Triangle of a teenage mind.  I stopped for a pasty and while eating I was whacked on the head by the wings of a seagull that had swooped for my pasty. Seeing the largest smile for the day on Ilona’s face I briefly pondered whether karma had sent the seagull of retribution because I had made her walk so far. It had probably made Ilona’s day and  hadn’t  got any of my pasty. When suddenly the seagull of repetition swooped and got the piece of crust the other one missed. Learning my lesson the second time I moved out of the open.

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dscn81631After finishing my pasty I took a picture of the seagull waiting for another mug with a pasty stupid enough to stand in front of it.

After a selfie with Ilona we continued the walk to the carpark the final part steep uphill. I stopped halfway to photograph the roofs we could now see over.

 

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Back in the car with Panic at the disco still in the CD player I explained one of their songs had references to the Beach Boys. Having ruined their credibility I now concentrated on driving. Thankfully a journey without incident  until within half a mile from home a parked car opened a door in my path but I stopped easily with room to spare.

Just one more thing to say. Sorry Ilona for a crap day out but I did enjoy your company..

Write the word, raise the bar.

As I have mentioned in the past, I use Rhymezone to post my poems. Feedback from others has improved my skills and confidence.  On this blog I would like to introduce you to the poetry of one of the other contributors Grant Hayes. I will begin with one of his poems.

 

Candlemas

 

Here at your last bend

Where at Candlemas you ended

Clapped in a ball of steel and glass

On the barrier bearing still that force

The dent the ghost of your dense

All-done-with love

 

I drive my eyes to bend away

The stake and its name your name

In a plastic wreath and the tied-on

Blossoms brown as the cross

You never hoped in

Bend them away

 

In gales of past

When wheels had not betrayed

When we in our empty days

Were loud with stories

Born of little times

And warm with drink

 

Our wars were all postponed

To a settled winning next or never

In kindly electric nowheres

Till and now on Candlemas

Belonging caught you

Rushed on you with one intent

 

And the crews of screaming lights

In the tail of their shift

Could not unsee your secrets

Here in your scatter where

You stayed and left

On Brigid’s day my friend you left

 

This poem by Grant Hayes is a sad poem reflecting on a roadside memorial lamenting the loss. I chose this poem because Grant’s work can be read on different levels. If you read it aloud it flows rhyming is not needed to give it poetic structure.  Just reading reveals a certain beauty in. the words and if you take it line by line the words paint powerful pictures.

Grant often describes his work as opaque as you have to think to understand some of his work. He allows his reader their own interpretation by painting pictures with words he allows us to assemble our own images. This also means his poems can reward more than one read revealing his intent with each read.

I have learnt from Grant that small words can be more effective in poetry than larger ones and that an unexpected use of words in a description can be extremely powerful.

For those of you reading my blog who write poems themselves I urge you to engage with other poets. Discussing their work teaches us about our own.

Write the word and raise the bar We all have talents and there is nothing better than the satisfaction of learning a new trick. Poetry is for me about shared understanding Not just sharing meaning but sharing emotion. Sharing my work and discussing with other poets has given me more options to communicate. So I urge you look at your own work and be proud but keep your eyes open because there are always lessons to be learnt.

Creative writing toolkit

For those of you who are members of Parkinsons UK you may have seen an article in their magazine about a Creative Writting toolkit. I was one of the team that produced it and would be delighted to have any feedback. So please feel free to let me know the good, bad and the ugly as we want to make it as good as it can be. I have included a link to it below.

https://www.parkinsons.org.uk/content/your-creative-writing-toolkit

Thanks for reading

Jon

 

Valentines-Shaken but not stirred

Like James Bond’s martinis computer dating may sometimes leave me shaken but not stirred.

Legend of Valentine

Roses are red Violets are blue
Mr Valentines here for you
All you single ladies dont give him the finger
He might put a ring on it and linger
A poet with charm to disarm

Wants to share a heart thats warm

Will transplant to you with no donor card

Hoping cupid will bring his reward
Turns names into  anagrams of flattery
Reuse lines like rechargeable battery
At speed dating loves to mingle
Never wonders why still single
Has more cliches than red roses
Bad back from devil may care poses
Clears rooms with the miasma
Of an aftershave disaster
Uses vintage chat up lines
That like corked red wine
Leaves an unpleasant taste
Innuendo gone to waste
In a suit out of fashion
More past it than passion
Complete with spare tyre
Has a car he should retire
God bless Mr Valentine
For love he does pine
Maybe he has a card for you
Maybe his dreams can come true
If nothing else he is a tryer
If god loves that can you admibre
Where is little Miss Valentine
Give this man a welcome sign
Though not perfect he wil give
Everything while he live
His love centre of his universe
A love that will not disperse
If you look for Mr Right
He may stand in plain sight
If you wait for Mr Perfect
May just lead to regret
So girls if you want romance
Give a guy that one chance
Maybe he will bring you fun
Maybe he will be the one
(this poem in my draft and preview is written in four line versers with a line in between but the post doesn’t. If anyone can explain why to me I would be Grateful)

It is three and a half years since my marital separation and a year since I split up with my girlfriend after being together about a year and half. As I had decided to end the relationship, I felt ready to date and signed up with POF(Plenty of Fish) an internet dating site.

First quandary. Do I mention Parkinson’s on my profile?

For me the answer is yes.If something is not said it only postpones talking about it. It would be nice to build a friendshiip without focusing on Parkinson’s but when I meet someone they want to know what they might be taking on.Any delay in being upfront can lead to suspicions. I the past I have had angry reactions from ladies I didn’t tell before the date. People are different so there is no answer on this that will suit all. My only recommendation is to do what you feel most comfortable with.

One thing I found difficult was how to cope with liking someone who changes their mind about whether they want to be more than friends. Is it realistic to expect someone who has no previous knowledge about Parkinson’s not to have doubts.It is not but equally it is difficult when someone tells you it is not an issue and then changes their mind. When someone changes their mind more than once it is extremely confusing.. All I can suggest is try not to make premature promises.

Sometimes I come across others with a disability and I have to be honest and say it does make me think. I make a decision on whether our lives are compatable and try to be honest and respectful.

My advice to anyone dating is the same whether you have a condition yourself or not. Be  true to yourself but be honest and respectful with others. If finding the right peron was easy we wouldn’t have all these dating sites making money out of lonelyness.

I met some nice ladies in the last year but not the one for me.I am content in myself and am not in a rush so I will take a break from internet dating and just hope cupid gets on the case. It could happen anytime, anyplace, anywhere just like a martini

Happy Valentines.

New Job, New Shirt, New Trousers

I started the morning as everybody does on my back on the floor in new trousers and brand new shirt with a cat standing on my chest.What that didn’t happen to anyone else? OK I will explain.I have a new job. after 25 years I transfered from one government department to another. Despite the fact I will be working in the same building for me it is a big deal.

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To keep those of you more concerned about the cat satisfied here is Tom in his basket.

Anyway back to the story.A new job is a big deal for meI am lucky my employer makes “reasonable adjustments” to allow for my Parkinson’s and I have a document going with me called a Reasonable Adjustment Passport to explain to my new employer how they can try and level the playing field for me. One thing is although fulltime I am doing the training with the part time group giving me more time to consolidate. Allowing for the fact that tiredness could effect my concentration.

Despite the help it is still daunting. I am losing the advantages of knowledge and experience. I may have got slower and lack the same concentration but previously I could look to the past. Now it all starts from here. I have a chance to prove myself not just useful but valuable not based on my history but based on now.

So I bought new trousers and new shirts and started my new job on 1 Feb 2017. My new trousers have a clip as well as a button but it is awkward before my medication takes effect as my fingers are clumsy.Easiest way to do it is lying down. Tom heard me so he came looking for me and just climbed on top of my brand new clean shirt. So there  we have it back to the beginning.