17. A Thank You on World Parkinson’s Day

Firstly, thank you thank you to everyone for all your support.  For ‘being there’, for supporting in every way.  I have amazing friends and family (and those in the intersection of this Venn Diagram, you know who you are) – thank you.

It is World Parkinson’s Day, Tuesday 11 April 2017 and it is 200 years since it was identified as a condition by James Parkinson.

200 years, still no cure, and only one UNreliable medication.

On Tuesday 11 April 2017 the WORLD is uniting (if that doesn’t warrant a placard nothing will).

PD is twaddle, but there has been one positive, which has come out of having PD.

It is properly positive (no spinning involved)

Bear with me, I will give you some clues.

  • They pick me up when I am down
  • They listen
  • They eat cake
  • They chat about everything
  • They waffle and faff (in a good way)
  • They are always there
  • I mean literally every single minute of every single day
  • Always there to Skype/message
  • For crying, laughing, speating

But who is it … it is not the even tempered caretaker.

  • They understand everything
  • Repeat nothing
  • Experts in everything
  • Never judge
  • Always empathise
  • Never sympathise
  • And definitely never tilt their head and touch my arm

They are the Dagenham Dancers*

*so far none are from Dagenham, but we are eclectically interesting dancers

As soon as I was diagnosed, I wanted (I needed) to meet other people in a similar situation.  A tall order as we, early onset, are like rubbish undercover agents, moving in the community.

We are holding down jobs, volunteering in the community, running homes, bringing up children. Trying to conform to ‘normality’ and fit in and carry on undaunted.

We don’t have time to have PD.

I can honestly say that the friends I have made with PD are friends for life.  Although PD was the first catalyst for us making contact, it is not all we talk about.  But to have ordinary chit chats about ordinary situations (with a PD understanding) is worth a million sherbet dib dabs.

The Dagenham Dancers are friends for life.

(Just to clarify in case I have confused you (again).  The Dagenham Dancers are a mini support group of friends with PD – I named them, ‘Dancers’ as dancing is good for PD, and ‘Dagenham’ just because it scans well.)

Once we are all cured we will still be smashing friends.   We will eat spaghetti stylishly, stay up late, sleep well, and we will actually be drunk when walking wonkily.

 

 

16. First Impressions

The not so small print :

Warning : This blog has the potential to unlock unacceptable sympathy.

Strictly no :

  • Arm touching
  • Head tilting
  • Diving
  • Petting

Another day, another gameshow.

  • ‘What you see is what you get’
  • ‘First impressions count’
  • ‘Mirrors never lie’
  • ‘The camera never lies’

PD redefines all these phrases.

  • ‘What you see is what you get’
  • Obviously, if I am being pursued by a sabre toothed tiger you can probably assume that the panic on the outside is continuing on the inside.
  • However, if you see me answering survey questions in the high street about the price of hummus, and I’m shaking with a stern, cross face.  Please don’t assume I am a rude, hummus phobe.
  • ‘Mirrors never lie’
  • I caught sight of  a grumpy looking woman walking past a shop window.
  • It genuinely caught me off guard.
  • Especially when I realised the grumpy looking woman was me.
  • Now bearing in mind I am ‘me’ and I knew I was happy, calm and relaxed, I was genuinely shocked by the grumpy, unapproachable look on my face.
  • This was a couple of months before I was diagnosed.
  • ‘First impressions count’
  • I went for an interview.
  • I spent the interview trying to hide my tremoring hand.
  • I didn’t get the job.
  • The feedback was I came across as very nervous.
  • Which I did, as I didn’t tell her about the PD.
  • This was when I was first diagnosed.  Today I would have told the interviewer straight away (and probably given her the link to my blog).
  • ‘The camera never lies’
  • When a photograph is taken, I am worried about how my smile is going to turn out.
  • It usually looks a bit wonkily odd to me.
  • I am smiling evenly on the inside.
  • This was just scarily odd :
  • I was sitting on my own, just sitting.
  • I heard an odd noise, got a bit scared as I was the only person in the room.
  • I thought it was a mouse.
  • Then I realised it was me.
  • It was my arm tremoring, rubbing against the chair.

Actually, in PD terms all of these statements could equally be true.  So if motor symptoms are under control, then my calm sophistication will radiate from the inside to the outside.

I can actually have some insight into the mixed messages that I give out, as in two of the examples I have confused myself.  As I mentioned ‘I am me’.

I have written about how PD affects my whole body movement, through tremor, bad walking, etc, but not about facial expression.  These to be honest, at the moment, I find most distressing.

So although I could easily write another 1,000 word narrative about how PD affects my face, I thought you deserved a break for good behaviour.  Bullet points will suffice.  (Hopefully not all of these at once – that would be a sight)

  • Face muscles become stiff (blank expression)
  • Face contorts with dystonia (think unintentional ’70s gurning competition)
  • Voice goes quiet and whispery as it affects vocal chords
  • Face muscles twitch
  • Staring eyes
  • Multiple blinking
  • Looking grumpy
  • Small facial nuances difficult, a cheeky wink doesn’t happen
  • Nodding in acknowledgement difficult

I have been accused of being :

  • Scared
  • Cross
  • Stressed
  • Worried
  • Cold
  • Drunk
  • Injured
  • Needing the toilet urgently

(but not all at once)

Of course, you may bump into a rude, cross person in the queue for the loo in Casualty wearing shorts and a t-shirt in mid November.  This is not me.

When I was first diagnosed I would sit on my hand to disguise the tremor, I would look at the ground embarrassed to make eye contact.  I was worried that people would think I was incapable if I told them about the PD.

But now I realise this was down to lack of awareness on my part.

So now, you may have noticed, I believe that communication is key.  Breaking the ice with a quip about the symptoms means that I can relax a bit more, and makes me less anxious.  Even if it sometimes confuses the person I have just announced to that I have a disease.

So now I probably mention it too much.  For example.

  • I was trying on some shoes and was fiddling with laces.  I became very aware that I thought I was lacing oddly (however that might be?!)  So I said to the shop assistant randomly ‘I have Parkinson’s’.  The poor person jumped and said ‘I haven’t heard of that brand’.  I replied curtly ‘It’s a disease!’.  My daughter embarrassedly suggested we leave the shop.
  • When I sit in the theatre/cinema I try and ensure I am sitting next to someone I know on my tremor side.  Otherwise I usually turn to the stranger next to me and tell them about the tremor – again they often look confused.   They may inch a bit further away from me as they are now sitting next to an over familiar lady who has a ‘disease’ for the next two hours*

*  Actually this is important.  If I knew how to use the extra facilities on this blog I would do this bit in an interesting bold flashing font.  Obviously not comic sans (far too jokey), but maybe helvetica.  However you will have to make do with capitals.

IT IS NOT CONTAGIOUS

You can now stop virtually hand sanitising after every blog view.

I am very aware of my symptoms and actually, it may surprise you, that (maybe) I have become a bit self obsessed (you are only reading it, feel sorry for those living with me).  Apparently everyone is wrapped up in their own odd bits and pieces, and so apparently it is quite likely that they won’t notice the tremor, unless I hit them with it.

So think about this, on first impressions, erasing (briefly) all your new found knowledge about PD, would you pick someone looking nervous, cross and unapproachable as a :

  • Prospective employee
  • Running buddy
  • Tennis partner
  • Piano player at your wedding
  • Your friend

(actually I am capable of all of the above apart from piano player at your wedding, unless you just want grade 1 pieces)

I have found this blog a bit difficult to write.  I have had a few face ‘bits and pieces’ over the years, but nothing major.  However, just recently I have had a couple of very upsetting times when my face has gone into complete spasm.  I have been quite panicky and upset.

I was panicky about the walking problems when this symptom first reared its head.  But now I have figured out some coping strategies, I am not so stressed.

I need to do the same about the ‘face thing’ (including, learning the medical term).  I need to learn coping strategies and try not to let it drag me down.

Easier said then done.

Parkinson’s is (insert expletive)

A couple of random odes :

An oddly factual ode (which will test your head tilting/arm touching – sorry)

  • On the periphery
  • Yet still in the room
  • On the outside
  • Filled with gloom
  • Please don’t avoid, don’t assume
  • Do please, just cross the room

A (slightly rushed) (slightly humorous) ode (to leave you on a maybe confused, but happy note)

  • I was born to dance
  • And if given half a chance
  • I’ll shake my bootie
  • Whilst eating tuttie frutties
  • Sorry rhymes are deserting me
  • I think I need some chocolate

 

 

 

15. Parkinson’s Awareness Month

April 2017 is Parkinson’s Awareness Month.

I thought it was worth writing a blog about how I believe awareness could help speed a cure for PD.

Awareness, I believe, is key to supporting those living with PD and encouraging pharmaceutical companies to work even harder to find a cure.

Firstly, I believe that awareness will help make Parkinson’s a ‘fashionable’ condition.

Let me clarify what I mean by ‘fashionable’.  I don’t mean ‘fashionable’ like massive eighties shoulder pads.  That is, shoulder pads were at the height of fashion for a few years, and then they disappeared from the fashion scene.  Two decades later they were back en vogue.

I would like PD to be only briefly ‘fashionable’ until a cure is found. It will then be eradicated from the face of the earth never to return (which, to be honest, I think should have happened to massive shoulder pads).

I want it to be ‘fashionable’ now, so that :

  • People want to fundraise and donate towards research for a cure.
  • Pharmaceutical companies will plough all their money and expertise into PD, as they want the kudos of finding a cure for the ‘fashionable’ condition.
  • People will have more understanding of PD to help their friend/neighbour who lives with PD.

Once a cure is found :

  • I can stop writing my blog (phew).
  • PD related organisations will have farewell closing down parties (and all employees will immediately get really good new jobs).
  • Lionel and Lavinia (see blog 14) will have job security for life.
  • The thousands living with PD, can get on with their lives.

A scenario :

Imagine you move into a new street and pop into a neighbour’s house to borrow a cup of sugar.  You notice the house is in disrepair and needs decorating.

Once home, you sprinkle the sugar on your Cornflakes (as you have run out of Frosties), and you have several options :

  • You don’t give any more thought to the neighbour and their home’s disrepair.
  • You pop back to your neighbour a few days later with some paint samples and help them choose colours over a cup of tea.
  • You turn up at their house with a roller and paint a few days later and roll up your sleeves to do their decorating.

Hopefully after reading my blog you will not just ‘notice the disrepair next door, then immediately forget about it’.

Hopefully you will become aware of friends/neighbours living with PD.  And offer much needed support and empathy.  This obviously applies to the population of the whole wide world.  (Although please call first so that I can organise extra crockery).

Unless you are a neuroscientist, I don’t mean for you to work on a cure. Or, wait a minute, maybe I do.  After all PD has been a named ‘condition’ for 200 years and still no cure.  Perhaps it could be found by an ordinary individual.  For example, Derek, a Palaeontologist from Frimley, may be the one to find a cure when inadvertently searching for fossils on the coast of the Hebrides.

I have lots more to write about; interesting situations, positive spins on difficult things, top tips, and may be more (very odd) odes.

So, thank you for reading my blog.  Please subscribe if you like what you read, by filling in the details on the front page.  You will then get an email when a new blog is posted.   You can unsubscribe at any time.

Please forward my blog, and share and like on Facebook to raise awareness, make PD ‘fashionable’, and ultimately find a cure.

14. Medication Decisions

The not so small print : I am starting this blog with a very strict voice, looking over my glasses balanced on the end of my nose.

In the same way that PD is individual, the prescribing of medication is as well.  Even if individuals seem to have the same symptoms, they may be prescribed different meds/doses.  Meds need to be monitored and changed with the supervision of a medical professional.

This blog should NOT (sorry for shouting) be used as a textbook for serious medical information.  If you must use this blog for anything PD related, then may I suggest you get a proper official PD medical book out of the library*.  Then, whilst sitting at a desk reading the official book, you tear out some virtual pages from this blog.  Then carefully fold them to put under the leg of the table to stop it wobbling (it really is not good for anything else).

*library (definition for the youngsters) – a place where you borrow books for free (nb : you have to give them back).

That’s enough small print, back to the blog :

I will go back to November 2012, diagnosis day, to talk about my personal ‘Medication Journey’ (I’m sorry, that’s an awful title).  I could say ‘Drug Decisions’ (although I don’t like that word).  So, I’ll say ‘Medication Decisions’ (the alternative sounds a bit sinister).

  • November 2012
  • Diagnosis day : My consultant offered me medication there and then, but I said I’d wait.  My symptoms were annoying but didn’t stop me doing anything.
  • August 2013
  • I made the decision to start medication.
  • It was a very personal decision and not one I took lightly.  Pre PD I thought twice before even taking a headache tablet.  I had conversations with my very supportive PD nurse and consultant to get all the information I could about meds, side effects and pros and cons of when to start medication.  PD was having a bigger and bigger impact on my life and I decided I wanted to be the best I could be now.

When I picked up that first prescription from the chemist I cried.  I cried because I realised that this would be the start of taking medication every day until they find a cure.  Would they work, would I get side effects?  It was the unknown.

Now the medication list :

  • Prescribed : Ropinirole prolonged release tablets
  • What is it : Dopamine agonist (if I understand it correctly then it encourages my brain to use any remaining dopamine production)
  • Specific information : Prolonged release means the tablets disperse gradually.  I was also given a prescription for anti nausea tablets.  My neurologist very seriously told my husband to look out for possible compulsive/obsessive side affects (e.g. gambling) which affects a small proportion of people who take this medication.

Crickey … in the early days of introducing this medication, I certainly needed the anti nausea tablets. One particular occasion I literally could not lift my head off the pillow.  The anti nausea meds really worked and I took them for the first few days each time I increased the dose.

The starting dose was not enough to have any noticeable affect (I had been warned about this).  However, under medical supervision and guidance by my neurologist I gradually increased the dose over quite a long period of time until it reached a level where I was quite stable for a short while.

Each time I change/increase meds it takes anything from a few days to a couple of weeks for them to start having a proper effect.  These are powerful meds, and to be honest I have no idea exactly how they work.  Actually, I don’t need to know how, I just need to know (and hope) that they do.  I could copy and paste the NHS description, but you can look that up yourself.

I have a silly, simplistic explanation that I think about when starting/increasing meds to make it less scary.

Put your hand up if, when you were a child, you imagined tiny people in your body making it work, e.g. pumping your heart?  Okay, no-one?  Come on there must be someone.  Hold on, a couple of hands up at the back … phew not just me then.

Imagine if you will, Lionel and Lavinia who are dopamine dealers in my brain.  They are having a discussion about the depleted dopamine and their impending compulsory redundancy.  One day a mystery package arrives.  There are no instructions.  After a few days of head scratching and running round in circles creating general dizziness, they eventually work out how to open the parcel and what to do with the magic bean inside.  After a while they manage to restart some dopamine production.  Each time the magic bean arrives they know what to do straight away, until a dose is changed and then they have to work it out again.

So, Neuroscientists (seriously, I don’t think for one moment that any are still reading this waffle, but it’s possible), if not for me, then for Lionel and Lavinia (and others like them), please please find a cure so that dopamine production is restored.

  • February 2016
  • Prescribed ‘gold star medication’ : Levodopa tablet (three times a day).
  • What is it : see blog ‘3.New Words’ for more information.
  • A miracle to begin with …
  • November 2016
  • Prescribed : Entacapone tablets (three times a day with levodopa).
  • What is it : It is used to help levodopa work better.
  • Reason : Meds kept switching on and off.
  • December 2016
  • Prescribed : Increased levodopa and entacapone to four times a day.
  • Reason : Meds not lasting.  A big decision to increase to four doses a day.
  • January 2017
  • Reason : As sleeping not good, this gives me some help through the night.
  • Bedtime prescribed : Half Sinemet controlled release levodopa tablet.
  • March 2017
  • Prescribed : Dispersible Madopar tablets.
  • Reason : For use in emergencies.  Dissolve in a small amount of water to get out of a sticky situation if meds switch off.
  • Question : If levodopa is so good why do I hesitate before increasing the dose?
  • Long term use of levodopa can lead to side effects.  Namely, uncontrollable movements (dyskinesia) and on-off periods.  As I am young and in this for the long haul then I need to have as many good years as I can with the levodopa.  This is because as the condition deteriorates then I will need to take more levodopa to control the symptoms.

Every cloud has a purchasing opportunity.  I need to be organised with all this medication.  With low expectations I searched on-line for a ‘tablet holder’ and was initially excited by the long list of searches which came up.  On closer examination I found that the lovely tablet holders were for the computer kind and not the medication kind.  There is definitely a gap in the market for funky medication storage, for multi dose diseases.

I eventually found a boring meds organiser, but it does the job.  I must admit I get quite a lot of odd satisfaction from organising the tablets each week.

Oh yes, another thing.  The meds have to be taken at strict times, decided with the neurologist.  Hence I have alarms set throughout the day to remind me.

Oh yes and and yet another thing.  I should leave about 30 minutes either side of taking a tablet before eating.  This is so that the tablet does not compete with food absorption.

And another.  Eating protein at the same time interferes with levodopa absorption.  So, ideally, I need to leave a gap.

And another.  Entacapone interferes with iron absorption if taken at the same time.

So trying to decide what and when to eat is quite a challenge.

  • Couple of top tips :
  • You can buy a prescription pre payment card through the NHS, which is cheaper when you need several prescriptions a month.
  • Most pharmacies can set up automatic repeat prescription ordering for monthly regular prescriptions.  My local pharmacy orders mine automatically from my GP each month and texts me when it is ready for collection.

There’s more, but that’s enough for now.

Medication is reviewed at each neurologist appointment, this is my personal meds list as at March 2017.  It will change.

Just to reiterate, this blog is written by me with no science background and with very little knowledge about very complicated medication.  Please double check everything, and speak to medical professionals.   I may have misunderstood some information, so double check – thank you.

Crickey, I feel the need to make a placard …

*MEDS RULE* (but not in a good way)

 

 

13. Ode : Delicious Dopamine

Delicious Dopamine

•It’s a tiny, green

•Nutrient machine

•A single sprout

•Is without a doubt

•A healthy snack

•But take it back

•I get no pleasure

•From this green treasure.

•It is not the treat

•That I want to eat

•Not garden peas

•Not cabbage leaves

•Nothing green

•Will be seen

•To pass my lips

•When PD hits.

•The tasty morsel

•Which revives my torso

•And focuses my brain

•To start working again

•Is cheap to buy

•From the nice guy

•In the corner shop

•Or at the petrol stop.

•It’s big and brown

•Not a 70’s eiderdown

•It’s a lovely big chunk

•Not an 80’s hunk

•It comes with a wrapper

•Not that kind of rapper

•Chocolate is the snack

•Which brings my mojo back.

 

If I’ve lost you completely, there is a point to this ode.

Chocolate … the enjoyment of eating chocolate, releases dopamine.  In fact I believe quite strongly it should be available on prescription … a placard is probably called for.

Finally, I’ve found a positive.  Thankfully it is chocolate, it could have been sprouts (apologies to any who live for sprouts and have already prepared them for Christmas).

I always try and carry a bar of chocolate in my bag.  I say ‘try’ because somehow it often bypasses ‘bag’ and goes straight to ‘stomach’.

12. Blog Healthcheck

This blog is important to me and so I need to check it’s vital signs regularly.  If it is coming down with something then I need to nip it in the bud.  The last thing I want is people saying ‘nasty rash, not sure I want to go near that again’.

So I am now going to step outside ‘The World of Blog’ to check that it is still doing what it says on the tin.

For fear of repeating myself (I am), my initial reasons for writing the blog were :

  • To raise awareness about early onset Parkinson’s
  • To let others living with Parkinson’s know they are not alone dealing with seemingly random symptoms.  It can be very isolating.
  • To keep a journal, as I believe it will help me (and as soon as it doesn’t I will stop).

The readers fall into two categories those with Parkinson’s and those without Parkinson’s   Actually, I suppose it is really three groups, as those in the intersection in this very odd Venn Diagram would be people with random symptoms awaiting an appointment.  (Please consult a medical professional, these symptoms don’t necessarily mean PD).

So, I will do a health check on each of those bullet points from my first introductory post.

To raise awareness : probably more for people without PD (those with PD will be aware enough already) :

  • People are definitely looking at the blog and clicking on posts.  I have checked my viewing stats (yes, there is such a thing).  I can see numbers, but not details of who has viewed.
  • However, I don’t have a ‘satisfaction meter’ so I don’t know if people are enjoying the posts, I just know they’ve clicked on the link.  Maybe they were looking for a purple handbag (or is that just me).
  • However, as lots of people have subscribed, I am assuming people are subscribing because they enjoy reading it.
  • As people are reading then by default they are becoming aware of PD.  Unless they missed me explaining the abbreviation of Parkinson’s Disease to PD and think they are reading about The Penguin Diet (obviously this involves eating chocolate bars not p…).

I haven’t included comments on my blog as I am not a medical professional (did I mention that), and if anyone is concerned, confused or has any questions, then I am not the person to ask.  I can’t stress enough that this is a personal blog.

To let those living with PD know that they are not alone :

  • To talk about random symptoms.  I may write some things which maybe I am the only one they happen to.  To be honest as PD is bespoke that wouldn’t surprise me.  Even mentioning symptoms to medical professionals they sometimes say ‘I haven’t heard that before, but ….’.
  • For example this is an ordinary everyday activity.  It may be something that some people with PD have a problem with, so they will think ‘not just me then …’ It may seem trivial but it is important.  Pre PD I washed my hair everyday.  Now I wash it once (maybe twice) a week.  I could say I am saving the planet.  However, it is just so much effort (not laziness), stiff arms and dexterity problems.  So I should maybe wash my hair at 11.30am when my meds are working.  However, I’d rather be out living my life, rather than saying  ‘I’m washing my hair’.

Sharing tips and coping strategies :

  • A couple of examples already written about, more to come.

To keep a journal and to help me :

  • I am (selfishly) writing primarily for myself.
  • When I post a blog I often feel like my eyeballs have been polished (that’s a good thing).  So positive, bright eyed and bushy tailed … a boost of positivity and dopamine.
  • It is making me think about positives in rubbish situations when PD disrupts my day.
  • I wanted something constructive to do sitting down when my walking stops.  The problem is often my typing and writing* goes as well.  So the typing I get when my left hand stops communicating with my brain needs a lot of correcting.  I tried dictation software, however my voice tends to go to a whisper when my meds are ‘off’, so the microphone doesn’t pick up my words very well (maybe I should do a blog written with dictation software without corrections, that would be amusing, but possibly illegible).

*My writing gets smaller (through difficulty with dexterity), and my voice often gets quieter (honestly I don’t know why but that is another symptom), when PD raises it’s head.

Could it GET any worse (I won’t be googling that one).

Before I started the blog, I had been looking for something creative to exercise my brain for a while.  The only person, so far, who has gained from this has been Messrs H Craft.  I have tried the following :

  • Knitting (a square scarf).
  • Mosaic (my nephew had a (rather good) mosaic portrait for his 18th – really).
  • Card making (probably not a market for rubbish cards – or is there?!).
  • Creative laminating (confidential for health and safety reasons).
  • Painting (not skirting boards).

Negatives :

  • Spending too long on the computer obsessively amending/rewriting (that damn medication)*
  • I often get inspiration first thing in the morning, mind racing with ideas.  But fingers and feet not working … aaaah.
  • I am now reining back a bit.  As always I am boom or bust.  I have gone at this blog full pelt and am now slowing down to once a week.
  • I am in danger of just being able to write ‘I sat and wrote my blog’, so must set myself a time/blog limit each day.

*Serious bit : The meds have lots of possible side effects.  This particular example refers to the very serious (and unfunny) obsessive/compulsive side effects which may effect a small proportion of people who take certain meds. (please consult a medical professional if concerned or confused).  As with PD symptoms, side effects are bespoke as well.

I have some friends who are editors in chief who proof read before I post (check I haven’t written ‘bum’ halfway through a paragraph), and make sure it is readable.

I am enjoying writing the blog and finding creative ways of making the subject readable.  (bum).  However, I hope I run out of things to type about, either I am cured, my symptoms stabilise, or the meds work effectively to manage the symptoms continuously.  If people stop reading, but it still helps me, then it is worth doing – so if continuous photos of my food help me then that may well happen.

PS Thank you for pointing out the spelling mistakes.  I like to think that makes the blog human (even that’s a positive spin).

PPS The blog is true, but anonymous – no photos or real names.  I want people to become aware about PD (Parkinson’s Disease, not the Penguin Diet).  I don’t want people to become aware that I am (probably not) getting my five, or (now) ten a day, or that I went to the cinema on Tuesday (I didn’t).

PPSS I am now digressing a lot, and actually this is the most personal piece of information to date.  I have been toying with writing a novel for a while, and I have had a character in my life for a while.  I have been saving her for best.

My nom de plume is Janet Bric a Brac (you may be able to sense my children sighing and raising their eyebrows).

There the secret is out – maybe she needs her own blog?

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.