Odes removed from blog 9 July 2018
Apologies work in progress xx
Take a look at Parkinality Poet on Facebook, like and follow the page to get updates on her projects ….
Odes removed from blog 9 July 2018
Apologies work in progress xx
Take a look at Parkinality Poet on Facebook, like and follow the page to get updates on her projects ….
The loss of a special power – now that is something to be sad about.
The power that women are particularly good at – ‘multi tasking’.
Pre PD I used to swish about showing off with my thinking, doing, walking and talking.
I used to confidently stride purposely around the supermarket. Simultaneously putting groceries in the trolley for a midweek roast, skilfully avoiding other shoppers, whilst calculating pick up times for the children. At the same time eavesdropping on the conversation between the couple with just eleven apples and cotton buds in their basket.
Now I order online. I would rather use my ‘on’ times with my meds for things other than supermarket shopping – thank goodness for home delivery.
It is hardly surprising with all the disruption going on between brain and body. It can sometimes take all my concentration to walk through shops for example, with the confusing floor, bright lights, loud music and meandering people. So to try and hold a conversation about the latest velour jumpsuit (yes, really) at the same time would cause chaos.
My walking is the biggest problem at the moment, and so swishing is obviously out of the window. The stagger and shuffle is more p***y than swishy!
So when I say, ‘shhh, I can only do one thing at a time’, I really can only do one thing at a time.
Especially bad places are busy places such as tube stations, airports, shopping centres, etc.
So a non analogy:
Large shopping centre on a Saturday – it should have a health warning. Immediately we arrived I knew it was a mistake, walking was really rubbish. But head up, change of mindset, headphones on, and I can sometimes get going. Once I get going, I have to walk at speed and find it difficult to stop. However, anything that breaks my concentration stops me in my tracks and I have to start again.
(top tip : before you get into the ‘zone’ of walking at speed, make sure you check with the rest of the family where you are going, it can take time for them to catch up).
As a semi professional shopper pre PD, I would be first in the shop rummaging through the bargains. Now I will stand at the door of a shop and think I can’t contemplate going inside. A change in flooring, e.g. from carpet to tiles, doorways, someone crossing my path or someone talking to me, breaks my concentration and it all goes pear shaped. I have to regroup and start again.
You may think this saves money. The problem is I have discovered very nice strangers (well actually, they’ve become more of acquaintances) will randomly knock on my door and hand me parcels, as a result of a quick click on the computer. On-line shopping has a lot to answer for.
I went through a phase of being worried about going out. I try not to let this worry take over. I have a few things that I do to make me feel a bit more confident and organised.
Kindness of strangers :
I used to decline help, which in hindsight is silly. It takes courage for someone to go up to another person and offer help, so for me to turn them down is rude.
So thank you to :
And I’ll forget :
I am constantly clock watching at the moment. So working out when the best time is to go out when my meds are likely to be working at their optimum. This doesn’t always work out, sometimes they don’t kick in and sometimes it is unavoidable that I have to go out at a potentially bad time. I just never know, as sometimes I can be tip top and meds work continuously.
I try and limit stress when out and about by always carrying :
I am boom or bust. When meds are working I tend to do loads, and then crash and burn. I know I should pace myself, but back to the water analogy. When water is reinstated I defy anyone not to drink as much as possible in case it switches off again.
All this randomness and unpredictableness (is that even a word), is obviously difficult for me. However, I know it is even more difficult for the people around me. One minute tip top and the next crashing and burning. I must be difficult to live with sometimes (no comment required).
PS Flanrinsto, aah Flanrinsto. I really wish I had thought of a more catchy name. I did say I couldn’t use a traditional name, as no one wants to be labelled with the same name as a degenerative neurological condition. So a catchier nickname … Flano, Rinsto, FR – answers on the back of a stuck down envelope (that’s alienated half my audience wsf).
Some of you may be thinking what this blog lacks is a car chase. I am sorry to disappoint, but the title doesn’t refer to a Capri and C5 drag race, but to movement (motor) and non movement (non motor) symptoms.
I’m afraid I can’t guarantee that this post won’t contain another analogy. I am actually enjoying the challenge of making a subject, which is extremely complicated, into something which hopefully people can relate to. As I said at the beginning I want to raise awareness and understanding.
Sorry, on with the blog …
This blog would probably not get past the pilot stage if I just wrote : ‘got up, had a ‘so so’/’rubbish’/’marvellous’* day, then went to bed (*delete as applicable)’, and a photograph of my dinner.
Actually I am going to digress (again) for a moment. Dinner is a way of non scientifically judging how much PD has interfered with my day.
Imagine it is a Wednesday, the family arrive home and through the power of kitchen table/oven observation, they can deduce how PD has affected my day.
This is obviously not set in stone. If there is no dinner, am I really PD rubbish, or have I been throwing some (slightly misshapen) shapes in a nightclub all day? (Or have I been writing my blog all day!)
Sorry, back to motor and non motor symptoms …
Below are the main symptoms I experience at the moment, there are lots more.
These are equally debilitating. However, I don’t think you will want or need analogies for this list.
Dopamine is also an endorphin which affects mood. So often when my meds switch off, I can suddenly become tearful and anxious.
STRESS is in capitals for a reason, it is a disaster for PD. It is a huge factor in making symptoms break through.
These terms will never be ascribed to me :
More likely to be :
So I think I will give poker a miss, I like my house too much to lose it.
Stress can make PD symptoms remerge in an instant without me actually consciously doing anything. Moments of often unavoidable extreme stress can actually bring about some frightening symptoms which have only, fortunately so far, lasted a relatively short amount of time. This has made me realise that managing stress is a top top priority.
For example in addition to my ‘usual’ symptoms going haywire, my face started contorting weirdly, mood crashed, and new rigidly in my right hand and foot – scary stuff.
Conversely, happiness and positivity combats stress and can help my symptoms recede. So I have learnt that, although difficult to do when symptoms are kicking off, if I can dance, listen to music, laugh and feel positive then things can gradually come back under some kind of control.
It is difficult to avoid stress, but I am looking at ways of managing it through meditation, relaxation, mindfulness and positivity.
In summary : PD is twaddle* (*insert expletive)
In the same way the motor symptoms happen, the non motor symptoms happen without me doing anything. The lack of control over what PD does is often quite overwhelming. That is why I try everything I can to get back some control through finding ways of managing the condition (and I have found a few ways which I will be posting about very soon).
So when I suggested that dopamine is the elixir of life, I wasn’t exaggerating. It affects my physical, emotional and mental wellbeing.
My brain and body are still playing the game of Chinese Whispers, which the medical professionals say would have probably started 10 years being diagnosis. More symptoms will continue to appear at varying rates, at the moment the motor symptoms are mainly in my left side, but they will spread.
I did say 10 years before diagnosis. I will have only noticed the symptoms when the nudges got harder and ‘annoyingly UNignorable’, and probably by then I will have lost 80%of my dopamine. This is one of the reasons why a cure is difficult to find because they don’t know when or why it starts.
Just to reiterate, I am not writing a text book. This is my understanding of what PD is through the way it affects me. Others living with PD may read some of this and think, ‘she’s got that wrong’, that’s because everyone’s experience of PD is different.
The not so small print : this is the first blog with medication, timings and more detailed symptoms. Please remember everyone is different, has different symptoms, medications and timings. If you are worried about anything please speak to a medical professional for advice. And don’t change any regimes without speaking to a medical professional – thanking you.
No interview, no induction, no training. PD is like the incompetent nephew of a horrendous boss, who became my colleague by default. I had no choice, he is a liability and I can’t sack him.
I am not alone in keeping a diary to co-ordinate work, school, home, family, friends and pets – although maybe one of the few still using pen and paper (not totally down with the kidz).
Each morning I check my diary, However, my new colleague, PD, doesn’t seem to keep a diary, electronic or otherwise. PD will randomly spring up throughout the day, or not at all, in various guises. Not in a dignified Mister Benn way, but in a Tasmanian Devil way, with an (un) lucky dip of symptoms.
Let me clarify, I have accepted that PD may kick off at some point during the day, I’d just prefer it wasn’t during parents evening.
So what does it feel like to have PD (bearing in mind I have lots of different symptoms, this is just one example of some of the physical symptoms).
To me it feels like an outside force is pulling at me, moving my arms and legs, pulling at my face, holding my leg back, pulling my fingers rigid.
In an effort to describe to someone without PD what it can feel like, I have used an analogy (yes, another one) of having a troublesome toddler with me (an idea borrowed from an interview with Michael J Fox where he described PD as like having a toddler trying to stop him doing things). Don’t get me wrong, young children are delightful and amazing, but at times unpredictable.
I will put in italics timings/meds for pwp (people with Parkinson’s), as if I was reading this I know I would be interested. I have always hated taking medication, and always thought twice before even taking a headache tablet. To now be taking 12 tablets a day and asking relative strangers with PD ‘what are you on?’ (Zammo, it is not what it seems), is really a huge deal.
This is an average day, a ‘so so’ day, not a horrendous one and not a marvellous one.
*Just to explain before I start, the imaginary child needed a name. Surprisingly it is difficult to think of a name for an imaginary person representing a complex neurological condition. No-one wants to know someone with the same name. So I made up a word – Flanrinsto (sorry for any confusion this may cause!) (and apologies if anyone actually has this name, it is a lovely name)
A day in the life :
7am : sinemet plus, entacapone, requip xl. Shuffle and stagger about trying to get ready and having breakfast, dexterity and walking rubbish until meds kick in about 8am.
8.30am : When your friend drops off their child unexpectedly you know it is going to make a busy day more complicated. I wasn’t about to change my plans just because Flanrinsto* (not his real name) was with me.
I start most days with a dog walk for an hour. Flanrinsto was actually very good, and I hardly noticed him. Dog exercised, me exercised, and the world put to rights with my good friend.
At home I washed the muddy dog, and I got changed. Today was looking promising and not as bad as I had thought. I put on some washing and did some ironing, which Flanrinsto tried to disrupt.
Meds wearing off about 10.30am – dexterity rubbish when ironing. 11am : sinemet plus and entacapone. Meds don’t really kick in properly and switch on and off all afternoon.
I was looking for my keys to leave to walk to the hairdressers, when Flanrinsto without warning, clung onto my legs, dragging me backwards. The more I tried to unfurl his hands from my left leg the more he clung on. It looked like I wouldn’t be doing anywhere, but I managed to get a lift. Flanrinsto calmed down in the car.
At the hairdressers I took advantage of the peace to answer some emails on my phone. Then without warning Flanrinsto grabbed my arm, yanked it and then climbed onto my lap, pulling at my face and eyelids for several minutes. I was conscious of what this must look like to the other people in the hairdressers. I tried to relax and ignore it. But he got more restless and pulled at my arm continuously. Eventually he lost interest.
Flanrinsto pulled at my legs when I was walking to and from the washbasin, making me stagger from side to side and drag my leg. Whilst having my hair dried I was wondering how I would walk home.
3pm : sinemet plus and entacapone. Meds kick in about 3.45pm.
4pm : when my hairdresser has finished, I stood up and miraculously and unpredictably walked normally and walked home without incident.
End of example, but I still take more meds, 7pm sinemet plus, entacapone and requip xl. 10.30pm half sinemet cr.
PS I don’t actually know in advance when meds are going to switch on and off or if they are going to work all day.
PPS : this is a ‘so so’ day in February 2017.
PPSS : just to remind you there is nothing physical wrong, the disrupted messages from the brain to the body are causing the symptoms.
Before I start this post properly, I am going to have to begin with a comment about the end of the preceding post ‘The Morning After’. Just to clarify the youngsters referring to my blog as ‘sick’ were actually being complimentary. ‘Sick’ in today’s slang means ‘good’. Actually as I am defined as young/early onset I need to start to speak like a youngster.
Now on with this post :
I love words (you may have guessed this with me making up my own word for the title). However, there are words which, to be honest, I wish I still didn’t understand or have in my vocabulary. Those relating to PD.
At the beginning of this blog I said that one of my aims was raising awareness and understanding. So before I go any further, below is my simplistic definition of PD and two key words.
In case any Neuroscientists inadvertently stumble across this blog.
An area of the brain is broken, and has stopped producing a chemical which transports messages from the brain to the rest of the body. This chemical is called dopamine.
The condition is incredibly complex, it is still not fully understood. If I tell you that in 1817 James Parkinson identified it as a condition, then called the Shaking Palsy, and later renamed Parkinson’s Disease.
200 years, zillions spent on research, and still no cure.
If dopamine causes such chaos when it is missing, why don’t people know about it?
I am going to try and explain what dopamine means to me, living with PD, through something else that we all understand and is vital for health and well being – water.
Imagine that each person has their own personal water supply, enough for them for life. The water supply is so constant and available that everyone takes it for granted. People have no reason or interest in finding out how and where it comes from. Individuals are unable to share it, even if they wanted to. They never have to worry about finding other sources of water.
Now imagine that your personal water supply was perfect for 44 years. Then suddenly your water supply becomes unreliable. It switches on and off with no warning. When the water is reinstated temporarily you are unable to store it. Your friends and family still have a constant supply, but can’t share or help you. As water is essential for life and well being, the quest to repair the water supply, or find other sources of water is constant and all consuming.
Now substitute the word dopamine for water.
Fortunately, today in the developed world, the modern day elixir of life, water, is plentiful. Dopamine, unfortunately for me, is not yet available in sports bottles in convenience stores.
People without PD have a lifetime supply of dopamine.
I no longer have that. My supply is broken and depleted.
As I am not a Neuroscientist, I fundraise to donate to those looking for a cure and organisations supporting those with PD. I am also constantly looking for ways to replace/boost my dopamine. If I was told two sticks might find a source of dopamine I would be hosting the inaugural meeting of ‘The Divining for Dopamine Delegation’ (I do like an alliteration).
As I said earlier ‘I am not ill, I have a condition that needs to be managed’.
One of the ways of managing the condition is with medication. I will go into this in more detail later – but one word is worth mentioning now – Levodopa.
Levodopa is the ‘gold star’ medication, and was discovered around 40 years ago. It is not a cure, it is used to manage the symptoms.
To me personally (sometimes) levodopa is brilliant, amazing and miraculous. It somehow makes communications between brain and body work again. (When it is working) I can sometimes feel like I am cured.
There had to be a ‘but’. After all if a tablet reliably managed all the symptoms 24/7 for life, then there wouldn’t be a blog. My blog would just say I take a tablet each morning, get on with life, until a cure is found.
Just to make it very clear – I want this blog to be as short as possible. I have no wish to be blogging at the age of 80 about living with PD. I want to be blogging at the age of 80 (cured of PD) about being an accomplished tightrope walker. It is not enough for levodopa to give 24/7 coverage I want, and need, a cure.
So I continue. I take a tablet*, it goes into my stomach and then ‘magically’ (not a medical term) some of it, hopefully, gets to my brain to help with dopamine production. I say ‘hopefully’ because in my case any of the following could happen :
*As of February 2017 I actually take twelve tablets a day, but more about that later.
There are many motor and non motor symptoms, and although I don’t have them all, I have a wide selection. When meds stop working it is an (un)lucky dip of what will break through.
So a real life PD example is my walking.
When meds are working I can walk normally, brain and body are communicating.
When meds aren’t working one way PD might affect me is my walking. For example I might find it incredibly difficult to bend my left knee or swing my left leg forward. I am not paralysed, but it takes incredible concentration and I feel like I am trying to move through treacle. There is nothing wrong with my legs physically, the message on how to walk has got lost between the control centre (brain) and the legs.
So I am constantly looking for other ways of managing the condition, chocolate, exercise and music are my top three. So when things are bad, make way for a middle aged woman with chocolate round her face, running, listening to heavy rock music.
Before I begin I need to remind you that this is a personal blog. There is no right or wrong way to deal with this diagnosis. The condition, symptoms and feelings are very individual.
Firstly, my apologies for going back on a promise. I said it wasn’t a ‘Who Dunnit’ and there I was leaving you with a cliffhanger. I remind you of the last six words of the ‘diagnosis day’ blog, describing how my outlook has changed since diagnosis.
‘… in some ways for the better’.
I may have left you wondering how on earth my outlook on life could be anything but negative, after being diagnosed with an incurable degenerative neurological condition.
I promised to be honest, so it would be very wrong if I didn’t mention the feelings, including shock, fear, anger and frustration, which have ebbed and flowed since D Day. However, I am not going to dwell on these at the moment. As promised, I am looking for the positives in a diagnosis which could very quickly drag me down.
So since my diagnosis, I now more than ever :
I have a Neurologist and PD Nurse who are really supportive and direct me to more support when needed. The best piece of advice I was given in the few weeks after diagnosis was:
In other words, I see the medical professionals a couple of times a year and the rest of the time I am Caretaker Manager of my PD. If only it was as straight forward as the offside rule (which, in case you wondered, I do know). In the same way that the symptoms take over every part of every day, managing the condition is a full time job. Not only with medication, but also, exercise, diet, hydration, sleep and many more whilst all the time trying to remain positive.
In this blog I plan to share the ways I have found to manage this ever changing condition. Although I am positive, this blog may sometimes be difficult to write and read as PD tests me on a daily basis.
PS : not everyone has access to a Parkinson’s Nurse. So if you ever get asked if we want more PD Nurses, please say ‘yes’ and tick that box – thanking you.
PPS : I have had lots of good feedback from people reading the first couple of pages of my blog. However, several younger people have said that the blog is ‘sick’. I hope that I am able to dispel this thought by referring to the quote above ‘I am not ill, I have a condition which needs to be managed’.