11. Top Tips : Walking

Addendum to the last post about tablets/packaging stylists.  If I understand it correctly (and apologies if this is incorrect), when a medication is produced by a company generically, it has to look different from the originally patented tablet.  Also, blister packs, I believe are designed to take into account the moisture levels and shelf life of the medication – ho hum.

I have now asked my pharmacy/GP to prescribe the same brand of medication each month.  However, to add to the confusion, I have just noticed that two of my very different looking tablets are actually made by the same pharmaceutical company with the same active ingredient.  They must have changed the tablet design/packaging and so I am now even more confused.  This too confirms how difficult the packaging is to decipher.

Not so small print : Symptoms differ, and ways of dealing with them differ.  If you try any of these techniques please exercise caution, especially walking backwards, please only do this if someone else is with you – thanking you, end of Health and Safety announcement.

Now on with the blog :

Goodness me, that was like a cinema trip where you have been watching for 15 minutes and the opening credits suddenly start to roll.  You turn to your friend and say ‘crickey the film hasn’t even started yet’.

I often feel that it is me versus PD. I won’t call it a battle, because that has negative connotations.  It’s not a game of chess either, it’s not that civilised.  It’s probably a game show with different rounds.  Some of them a bit funny, some a bit odd, some scary, some upsetting and some debilitating.

I will call the game show ‘Cheeky Challenge’.  I say ‘cheeky’ with a touch of irony.  In the way that someone could be called a ‘cheeky chappy’ and you feel like punching them.

For those who have been inadvertently part of the show already, thank you for the encouragement and patience (whilst I alternate between laughing and crying).  Also, thank you for not abandoning me on a street corner.  I do hope the show doesn’t catch on and go to a series.

It is one of those game show concepts which is deceptively simple.  Just two choices at the moment of the way my walking challenges me.

  • My left leg stops automatically bending and swinging forward.
  • My left foot goes into ‘spasm’, like a twisting cramp which doesn’t hurt.  You can actually see it contort and twist.

Sometimes my walking stops suddenly, like flicking a switch.  Sometimes I get a warning as I feel my foot start to twist.

Three ways I can sometimes get out of it are :

  • Distraction
  • Technique change
  • Phone a friend (yes, really)

The challenges so far have included (all absolutely true examples) :

  • Leicester Square Challenge:
  • Key problems : Busy environment, noise, people crossing my path, traffic and lights.
  • Technique change : Walking backwards with a ‘sweeper’ friend behind clearing the way and a person either side guiding me.
  • Explanation : I often find I can power walk backwards but can’t get going forwards.
  • Forest Challenge :
  • Key problems : Uneven ground, trees in the way, slight panic of being stranded.
  • Phone a friend : Phoned a friend on my mobile and just started talking to her.  The distraction somehow unlocked my foot and enabled me to walk out of the forest.
  • Explanation : The key to this is that my friend didn’t know why I was calling, it wouldn’t have helped if I had talked about my walking problem, it had to be a total distraction.
  • London Theatre Trip Challenge :
  • Key problems : Busy environment, too many people to walk backwards through and not enough friends with me to guide me backwards.
  • Technique change : Ran and weaved through the crowds, literally sprinted (with my poor friend struggling to keep track of me).
  • Explanation : I can often run, but can’t walk.
  • Doorbell/Phone Challenge :
  • Key problems : Trying to negotiate doorways and general family paraphernalia (good word) to answer the phone or door before the person gives up and goes away.
  • Technique change : Pretend to kick a football.  So forcing my leg forward as if I’m about to kick, thus walking quite oddly.
  • Lone Dog Challenge :
  • Key problem : On my own dog walking, foot starts to go.  Have a deadline to get back in half an hour, but dog must have a walk.
  • Technique change : I took on the attitude of a person wearing bovver boots, going to do some bovver.  Change of mindset and attitude somehow makes my leg assertively swing forward.

Along with the above techniques, others I have tried to get walking, include :

  • Light pen, which puts a line on the floor just in front of me, I step over the line
  • Chocolate (to boost dopamine)
  • Music and headphones
  • Big walking movements
  • Step backwards, to then step forward
  • Think marching 1,2,3 in my head
  • Concentrate on heel toe walking
  • Stepping over an object on the floor

Also, randomly, even when I can’t walk properly on the flat ground and really struggle, I can do stairs.  Somehow (don’t ask me, ask my brain) the combination of eye/brain/leg works when walking upstairs.

Finally, for the moment, which will confirm your thoughts that I am going completely mad.  The other day I tried the following:

  • I drew a line on my (old) glasses (with a wipe off pen).  This was my random idea that if a line on the floor, or stepping over an object helped me walk, then a line on my glasses would be permanently in my eye line and would enable me to step forward.  I don’t think it will be going into production anytime soon.  Although all breakthroughs probably start with a mad experiment.

Life may be twaddley but it is not dull.

Stop press : Two muddy ladies, with a whiff of glamour, spotted with two muddy dogs, with a whiff of bonio, attempting to cross the road.  Taller, muddier lady is staggering and keeps falling off of the kerb.  The other is talking to her using all her patience and persuasion skills.  After about ten minutes of general faffing, the patient lady, ties the dogs by their leads to the road sign and turns and offers the taller lady a piggy back.  Suddenly the taller lady runs, runs for the hills (well her house over the road), like she has never run before.  The patient lady shouting after her ‘keep on running’.

(If that was too cryptic, I am the taller lady, and I stopped walking about fifty metres from my house.  The ‘threat’ of a piggy back from my friend suddenly reconnected my brain and legs to run!)

PS : The above scenarios have all happened.  The problem is even with all these options, sometimes none of them work, and I just have to wait for the connections to start working again (either through meds or just because they decide to randomly).   Also, often in the heat of the moment I am flustered and can’t remember any of them.  So feel free to shout ‘walk backwards’ to me if you see me struggling.

PPS : I may appear to make light of this, but I am sitting in a warm house typing, with a drink of hot chocolate.  Believe me in the moment it is incredibly stressful and debilitating.  And actually this is about awareness (did I mention that already) and I am not sure anyone would read it if I didn’t dress it up with a bit of creativity.

PPSS : There is a bit of a competition theme going on here.  Chinese Whispers, and now a Game Show.  I look forward to Buckeroo with interest.

 

 

10. Campaign Corner

Don’t worry I won’t be burning my bra or tying myself to the railings, but I might make a placard.

Neuroscientists, Researchers and lots of very clever people are trying to find a cure.  I am confident that the person who discovers a cure will, at the very least, get a very nice Certificate.

But more than awards or monetary gain, they will have the heartfelt thanks of my friends and family who have had to put up with me harping on about ‘awareness’ for the past four and a half years.

So a cure would obviously be the ultimate.

But in the meantime there are a few points which I would like to raise in Campaign Corner.

Just in case you have glazed over and have no interest in reading this post further, and the lure of a spot prize for reading to the end is not enough (and is a fib anyway), then I will say the following : ‘Why did the chicken cross the road?’

Prescriptions :

  • Bob over 60 has MS and, quite rightly, gets free prescriptions
  • Arnold under 60, has MS and, quite rightly gets free prescriptions
  • Mitch over 60, has Parkinson’s and, quite rightly, gets free prescriptions
  • Ralph under 60 has Parkinson’s and, WRONGLY, has to pay for prescriptions

Everyone over 60 gets free prescriptions.

Everyone under 60 has to pay for prescriptions, apart from a selected list of circumstances/conditions.

I have to take medication for life to enable me to play an active role in society, but as I have early onset Parkinson’s and am under 60 I have to pay for prescriptions.

I do however buy a prepayment prescription card, so I can get as many prescriptions as I like with the card by paying upfront – whoopee.  Each item is £8.40, that’s not per prescription, that’s per item.

So if you are asked about free prescriptions for all please tick the box and say yes – thanking you.

Medication Tablet/Packaging Stylists :

The not so small print : I am assuming that there is a department in Pharmaceutical companies for designing the tablets and packaging.  Apologies if I  am making incorrect assumptions about tablet/packaging designs.  This is a personal blog and  I can only write about my personal experience with medication, other people may have different experiences.

A bit of background on medication development (see NHS website for more information).

To develop a new medication it takes :

  • 10-15 years
  • Four stages of trials
  • Over £1 billion

If I understand it correctly the original developer of the active ingredient has sole dispensing rights for a period of time.  After which it becomes available to be produced by other companies, using the same active ingredient.

With this in mind I have drafted the following letter :

Dear Tablet/Packaging Stylists

The Researchers and Neuroscientists spend a lot of time and money developing medications – they have the power to make a life changing difference to people’s lives.

However, another vital part of a medication’s development is the design of the tablet, blister pack and outer packaging.  You may not appreciate it, but this also has an impact on people’s day to day life.

A scenario : (although the scenario is true, the tablet/box details are made up).

Imagine you relied on taking a tablet a day to manage your condition, to allow you to operate in society.

Imagine you have shaky hands, bad co-ordination and difficulty moving your fingers, especially when you are nearing the next dose of your medication.  Finally a drug is produced to help manage your condition, and is now produced by several companies.

In January you collect a months supply from your pharmacy of the wonder drug, they are :

  • Labelled in big letters on the outer box : ‘Mopsy Medication’.
  • In a purple box.
  • Tiny, fiddly, green round tablets.
  • The blister pack is a good size and easy to get the tablets out.

They work well, so the next month you collect your supply of the same medication.  This time they are :

  • Labelled in big letters on the outer box : ‘Twill Tablets’
  • In an orange box.
  • Small, flimsy, green rugby ball shaped tablets.
  • The flimsy tablets are tightly packed in the blister pack, and often snap as you struggle to remove them.

The tablets and packaging look completely different, but they contain the same active ingredient and do the same job.

The pharmacy reassures you they contain exactly the same active ingredient.  You also suffer from stress and anxiety which exacerbates your symptoms, and the random change in tablet/packaging design throws you completely.

Now imagine you take four different types of tablet, five times a day.  Each tablet could be different each month from different manufacturers.

Once medication is allowed to be produced by other companies, I appreciate they want their product to be differentiated from other suppliers of the same medication (after all they have the same active ingredient and do the same job).  However, I think that the only place your company identity should be shown is the outer box, everything else should have continuity between manufacturers.

Outer box: If your company choses to name it after Great Aunt Mabel and her favourite colour was mauve.  Then ‘Mabel’s Magnificent Medicine’ in mauve packaging is absolutely fine.  It has no affect on me at all.

After that you must consider the person living with the condition.

As follows :

The actual active ingredient name should be very very clear on the outer box.  It is confusing if I have to read the tiny print to find out actually what the active ingredient is.

Blister packs : These should be easy to open and have room round the tablet to get them out in once piece.

Tablets : They should have continuity, so when an active ingredient is patented, surely the shape and colour should be as well for continuity.  They should also be easy to swallow and not so flimsy that they snap too easily.

If the same tablet is a different size/colour/shape depending on the manufacturer, this can be at best confusing and at worst dangerous.

So you, the packaging/tablet stylists, can help people living with the condition, by designing tablets and packaging which does not add any more stress to our lives.

Thanking you.

LES

‘To get to the other side.’

9. ‘… Play on’

I shall continue with the misquoted Shakespeare line from the previous post ‘Music is my food of life … ‘…. play on’.

PD affects (amongst other things) tremor, dexterity and multi tasking. With that in mind and my new post diagnosis attitude, should I :

  • (For comedic affect) enter the intercounty ‘jelly on a stick’ balancing competition
  • (Or for a challenge) learn a musical instrument?

Both require co-ordination, a steady hand, dexterity and concentration. However with one you end up with sticky fingers, the other possibly a Certificate.

I have already established music is marvellous, the right kind has a positive affect on my symptoms*

*To be clear I am not unique; PD hasn’t turned my brain into a musical superpower. Everyone will get a boost when they listen to music they enjoy. If you have sufficient dopamine, I assume that the boost will make you happy. With PD sometimes it means improved walking, or (possibly as important) properly peeled potatoes.

On with the blog …

Music and learning new skills is good for the brain. So music plus learning, put them together and what have you got (apart from bibbidi-bobbidi-boo):

Music + Learning = Learn to play an instrument

Stop right there : Don’t worry I don’t intend this to turn into a ‘journey’ with an emotional arc, plinky plonky music and a bit of slo mo.

I had some piano lessons when I was young, but to be honest I was not totally committed (with my 8 year old diversion skills I managed to avoid a few lessons). However, things are different today with my new attitude and desire to learn.

My piano teacher was amazingly patient. During lessons the symptoms would appear and disappear unpredictably. The practice and lessons followed a similar pattern. Some good progress, a bit of bad playing, sometimes a bit of a cry (from me), and random interruptions from Flanrinsto (see ‘a day in the life’ post 7 for an explanation), and later interruptions from a new puppy (more about that later).

I soon found that something amazing happened when I put my hands on the piano keys. More often than not the tremor and rigidity stopped. In fact, when dexterity is rubbish, I can usually play scales smoothly with both hands simultaneously – you wouldn’t think there was anything wrong with either hand.

However if I become tired and/or stressed, symptoms will inevitably break through. So towards the end of the lessons my fingers may lock up, or if I got particularly frustrated then PD would break through.

I refer back to the section on stress (post 7) and avoiding it as much as possible. So what did I do next :

  • Carry on learning for pleasure
  • Or enter for my grade 1 piano exam?

As this is obviously now turning into one of those annoying ‘journey arcs’, then it had better be the latter.

So a piano exam, I obviously needed to limit stress and forward plan. My PD nurse wrote a letter stating that during the exam I would need chocolate, water and extra time. So a dopamine boost from the chocolate (yes really), a drink, and time to regroup if PD interfered.

Apologies this is the plinky plonky music/slo mo part …

The week before the exam, I randomly suggested that I play in the piano concert at my children’s school, where my piano teacher taught (I know, I know). One of my exam pieces was a duet, so I thought that was safest because at least my teacher would be with me, and in lessons it went quite well.

I will not beat about the bush, suffice to say :

  • School hall
  • About 40 parents and students
  • Sat at the piano to play the duet with my teacher
  • Fingers locked up and tremored
  • I played nothing, she played something
  • Stood up and bowed
  • Went and sat down.

My exam was the following week, all I wanted now was a level playing field.  I genuinely didn’t care if I failed.  I just wanted to get through it without PD interfering.  Again, a control thing, I was happy to fail as long as the fail was all my own work.  If PD failed on my behalf it was double rubbish, no control and a fail.

The exam went like this :

  • Walked in
  • Sat down
  • Played scales/pieces/sight reading/aural test
  • Stood up
  • Walked out

Chocolate, water and extra time weren’t required.  Flanrinsto stayed in the corner eating jelly.

I passed with MERIT and have a beautiful certificate.

Now you may stand and clap.

Pre PD : I had thought I should really go back to piano, it would be nice to learn an instrument, I’ll do it one day. And get on with the dusting.

Post diagnosis : I have a dusty house (that is not a joke). PD makes me seize the day and appreciate what a great thing the brain and human body is. And to use it whilst I can.

This is all smashing but there was something missing.

‘The right kind of music’. With all due respect to grade 1 piano music composers, it is not my brain’s music of choice. So although good, it could be better.

So that got me thinking of a new mathematical equation :

(Music + Learning) x Loud Rock = Bass Guitar Lessons

8. Music is my food of life*

*To pre-empt complaints from Shakespeare experts, I know I have misquoted Twelfth Night.  To be totally honest I thought it was ‘food of life’ until I googled it (yes, I am allowed some non medical googling).

The not so small print : please remember everyone is different, different ages, different lifestyles etc.  Not everyone will find that rock music (with some expletives in context) helps their PD symptoms.  Others may find that their ‘magical music’ has slightly less contemporary kudos.

Control – that is something which PD takes away.  I am therefore constantly looking for ways to have some control over my symptoms and manage them in some small way.  I had read a lot about music being beneficial.  However, up until then I had tapped along to my usual playlist.  Little did I know that my brain craved a different genre to 80s boy bands.

So the journey of discovery went like this :

  • Normal evening relaxing* in front of the television.
  • Music awards show on.
  • A band comes on and starts playing and I sit forward in my seat.
  • Crickey oh riley, what is this.  Literally a ‘ping’ in my brain.

*To digress for a second.  Sitting still is not something PD does very well.  Muscles fire on and off, it feels like they are flexing ready for action.  Writing it like that sounds as if it is quite a positive feeling.  It probably would be if I was about to start the 100 metre sprint.   However when the rest of me is exhausted, it is not conducive to relaxing.  My arms and legs feel like they want to punch the air.  I often spontaneously start to dance or run around the house whilst everyone else is sitting still.   Just to clarify that is often more relaxing than relaxing.

Back to the blog …

I would have gone down to Woolies with my £2.99 to buy the LP there and then, but for various reasons (including the words Woolies, £2.99 and LP) I didn’t.  I, however, was impatient to get my hands on this musical elixir.  Fortunately as the modern world has made us all quite impatient, I (well my 14 year old) could also immediately, buy and download it onto my device.

Since then I have used a ‘musical selection thing’ (probably not the correct terminology) to select other tracks.  I have a growing playlist.  I don’t know what it is about the music, whether it is the beat, rhythm, sound structure – I have no idea.

NB friends have found different musical genres and bands help their symptoms, so put your playlist on shuffle and see what you like.

Deafness may end up being one of my PD symptoms, not because those alpha synuclein proteins* attach themselves to my ears, but because I listen to music quite loudly (please listen responsibly).

*The alpha synuclein are protein clumps in the brain which are a factor in PD (Apologies, that was an attempt at a bad science joke with almost no scientific knowledge.  I have no idea if they affect hearing – I just stuck them to the ear for comedic affect.  Also, apologies if this is inadvertently factual).

Music is one way I can have a teensy teensy amount of control over my symptoms and I am grabbing it with both ears.  It’s a little victory, PD is not choosing the tracks, my A&R rep is my brain.

To be totally honest I’d listen to paint dry if it helped my PD.  Handy then that my brain has chosen some excellent music.  I am choosing to listen to the music, I am doing something proactive, which has a positive affect on my symptoms.

  • When dexterity is bad and, for example, when I’m peeling potatoes.  My fingers sometimes feel like they are working through treacle, they are slow and it takes concentration to move them.  I put my headphones on and sometimes the dexterity problems ease a little and, whoopee, properly peeled potatoes for dinner.
  • When my walking is bad, and PD is being particularly irritating, one of my tactics is music. I always carry my headphones and regularly put my music on to get me walking again.  It is ironic that when walking with teenagers, I am the one being anti social with my headphones on.  I have found sometimes the beat can get me into a rhythm of moving forward and walking again.  It is amazing when it works.
  • When my arms become rigid and stiff, I put on my music and headphones.  I can sometimes start to dance with fluid movements at my own personal silent disco.  Forget Zumba, Ballroom or Ballet, my dancing is more randomly eclectic.  I feel better and my movements become more flowing the more I let myself move freely to the music.

Music is my saviour in many ways – it is my escapism – and it evokes feelings of movement, freedom, focus and fluidity.  Everything that PD is not.  I sometimes describe listening to music as feeling like ‘my eyeballs have been polished’ (not a medical term), i.e. that I feel bright eyed and bushy tailed.  Which to be honest is smashing.

So now I have discovered that music is so important, I’d better continue with the, slightly incorrect, Shakespeare quote.  Music is my food of life … ‘play on’.

PS : a slight disclaimer.  Music can sometimes be distracting in a busy environment when trying to multi task.  For example I once asked a disinterested shop assistant in a fashion store if she could turn the music down, she looked slightly confused and was probably thinking why was this ‘presumably inebriated*, staggering,  tremoring middle aged woman holding a velour jumpsuit complaining about the music’  *often the staggering, shuffling walk can be mistaken for being drunk. Just to clarify – I wasn’t.

 

7. Two Odes (one sad and one odd)

Two Odes : one odd and one sad

Annoying, irritating, how can I plan,

when the park signs are obscured by paper and jam.

Or is that hummus and olives to be slightly en vogue,

or has the park-keeper turned into a toad.

My brain is fried, my voice is going,

I don’t really know, although I appear all knowing.

This thing has floored me yet again,

stopped me in my tracks, I’ve stopped working.

A switch has been flicked by a cruel superior,

someone who has a bad sense of humour.

Happily going along with glee,

how naive could I possibly be.

Forgetting that I lost control long ago,

the exact date I will never know.

I wake each morning with thoughts in my head,

should I get up or stay in bed.

I always do too much too soon,

exhausting myself way before noon.

Long ago I could please myself,

do what I wanted, I had control over myself.

Today the park is often shut by a cruel twist of fate.

If I get there before the park-keeper shuts the gate,

I can often nip in for a brief run about.

I can jump and skip, and I really want to shout.

how this brings me complete joy and delight,

a freedom from the daily fight.

The world is like a park, that’s my analogy,

It helps me to explain the problems of each day,

to friends who with all the best will,

don’t understand and probably never will.

The parks opening times are never displayed,

often it’s shut and I’m full of dismay.

Sometimes I have a brief moment to go inside,

to try out the equipment, maybe the slide.

But gates can slam and I can be thrown out.

Please don’t shut I silently shout.

 

and to cheer you up, an extremely odd silly ode …

Dogs need to walk

When I can hardly walk

I still really like to talk

Dogs can’t talk

Men prefer to walk

Women prefer to talk

Dogs are a man’s best friend

 

 

 

 

6. Multi Tasking

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 :

  • The man who helped me cross over the road, without being asked, when I got stuck on a traffic island in the road (my walking stopped and I couldn’t get momentum to move forward).
  • The lady who took my arm and escorted me across the road and to my appointment.
  • The train cleaner and physio who got me on a train at a mainline station.
  • The inebriated office worker who made me laugh late at night, when I was staggering and shuffling (UNinebriated) through a city mainline station.  He asked me why I was tap dancing and I said ‘I love to dance’ and did a little ‘step ball change’ (see I told you I did tap dancing pre PD).

And I’ll forget :

  • The person in the car who swore and gesticulated at me when I faltered at a crossing and stepped back, delaying their journey by a nano second.

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 :

  • Medic Alert bracelet
  • Phone (with alarms set for meds)
  • Charger
  • Chocolate
  • Headphones/Ipod
  • Meds (meds for the day and spares in case I fumble and drop a tablet)
  • Water
  • Umbrella

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).

 

5. Motor, Non Motor and STRESS

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.

  • Roast dinner with Yorkshire puddings (tip top day as I would have gone out, bought a joint of meat, peeled vegetables and multi tasked to prepared a ‘mid week roast’).
  • Stew in slow cooker (had a good morning, I got organised and put dinner on first thing).
  • Pasta (dexterity rubbish, no vegetable peeling, quick pasta meal).
  • Nothing (not good at all).

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.

  • Motor – I have already shown, with a few analogies, how depleted dopamine affects my brain to body messages and causes movement problems, at the moment my top four are : Rigidity, Stiffness, Dexterity, Tremor.
  • Non motor – There is another group of, predominantly, ‘invisible’ symptoms.  They are generally the non motor symptoms.  My current top four are : Anxiety, Apathy, Constipation, Sleep problems.

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***

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 :

  • ‘Like a duck on water’
  • ‘Cool as a cucumber’

More likely to be :

  • ‘Like a giraffe in a tumble dryer’
  • ‘Tepid as a stew’

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.

4. A Day in the Life

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.

  • PD doesn’t get collected at the end of the day
  • PD is mischievous, unpredictable and attention seeking.  Even when not causing trouble it is flickering in the background.
  • PD is with me 24/7.

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.

3. New Words

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.

  • Firstly : ‘Hello’
  • Secondly : ‘Please forgive my clumsy, simplistic description.  I am a 49 year old mother with no science background trying to explain a complex degenerative neurological condition’.

 

  • My description of PD :

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.

 

  • Dopamine

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).

 

  • Levodopa

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.

But …

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 :

  • It is a long way between stomach and brain and the drug can get lost enroute.
  • Medication can switch on and off without warning (so be working one minute and stop as quickly).
  • I currently take meds five times a day and they can take 40 minutes to work, or 2 hours, or 3 hours or not at all.

*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.

 

 

2. The Morning After …

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 :

  • Appreciate how wonderful and complex the human body is.
  • Appreciate the times when my brain and body are working together as a team.
  • Live in the moment.
  • Appreciate the kindness of strangers.
  • Appreciate wonderful friends – old and new.
  • Try new things today, rather than putting them off.
  • Challenge myself and push myself to keep going.
  • Look for the positives.

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:

  • ‘I am not ill, I have a condition which needs to be managed’

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’.