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.