Mr Parky Comes to Play...

Something is wrong... November 2012, my mum is very poorly in hospital having had a fall at home and broken her hip, followed by a heart attack in hospital. It soon becomes clear that she is not going to recover. My sisters and I spend days that turn into weeks sitting with her, holding her hand, trying to comfort her. She is put on the dreaded Liverpool Care Pathway (only weeks before it is banned) and her suffering goes on interminably. There is absolutely no dignity in dying like this. After a battle we succeed in getting her moved to the local hospice (mental note made – hospital is not a good place for care when you are dying...).

Mum dies on Christmas Eve 2012 at 4.15 pm. I was with her though I don't know if she was aware.

Symptoms start

JANUARY 2013, I have a niggling dull ache in my left shoulder and lower back pain. I put this down to weeks sitting at an awkward angle at mum's hospital bed. We deal with the funeral and vacating and clearing out her flat. My shoulder and back are getting worse and I need to sort it out before we go skiing in April. In February, we are visiting a music college with my son who wants to be a freelance musician, and my husband notices that my left arm is held across my stomach as if in a sling. He asks me why I am holding it like that and I reply that I am not holding it there. For the rest of the day I become aware that every time I drop my arm to my side, it makes its own way up to cross over my body …. a bit like a mannequin’s pose. My arm seems to have a mind of its own which is somewhat disconcerting.

Weeks go by and my husband notices that my left arm does not swing when I am out with him walking the dog. Bit odd but as my shoulder is still hurting I assume it is to do with that. I ask my GP for a referral to a physio but there is a 12 week waiting list so I arrange to see someone privately. I have 3 or 4 sessions with her but don't feel any better. However it’s now April and we are off skiing regardless of my shoulder/back so I will just have to manage.

The ski holiday from hell

APRIL 2013 and I manage to get through the ski holiday, not without a good degree of stress. On the last day P (husband) and J (younger son 17) take M (elder son, aged 19 at the time, has Down’s Syndrome, Type 1 diabetes and Celiac Disease) for another ski down. I of course emphasized to them to take good care of M especially getting on and off the chair lift and they skied away chorusing “oh stop worrying of course we’ll look after him.”

They queued for the chair lift and as I was watching from a distance I saw to my horror that P and J had moved forward to get on the chair and M hadn’t moved – he was still behind the barrier. I watched in disbelief as P and J had to get on a chair together and were whisked away and M moved forward to get on a chair alone. My worst fear was materializing before my eyes. He had never traveled alone on the chair and as I started to run towards the chairlift. My mind went into overdrive imagining the various terrible scenarios that might occur, including tomorrow’s newspaper headlines: “young man with Down’s Syndrome tragically dies in fall from chair lift as he was unaccompanied……”

By now I had reached the chair lift and was shouting at them to stop the chair. But to no avail. Fortunately the operators recognized M as he had been traveling with his French ski instructor J all week. They slowed the lift down to enable M to get on (very nice of them but I wanted him to get off!!!) and assured me that he would be fine. They looked at me as if I were demented. They radioed up to the receiving end and asked them to slow it down for M to get off. M was 2 chairs behind his Dad and brother but I could hear them talking to one another as the chairs disappeared over the horizon and into the unknown... I stood there for what seemed an eternity after they had disappeared from sight and prayed like M’s life depended on it (well it did, actually – he had been in the habit of lifting the safety bar much too early – thankfully J had repeatedly stressed to him the importance of keeping it down until he was nearly at the landing station).

By now I was in tears. My whole body began to tremble and I had to sit down as I felt as if I was about to collapse. In the midst of the mayhem I registered that the whole body shaking issue was a new experience, but fleetingly put it down to delayed shock.

Eventually my phone rang – it was J – I was almost afraid to answer it – his first words were “its ok Mum, M is fine, he is here with us now and he got off the chair all by himself and is fine – don’t be cross with Dad when we get back down there”. My mouth was so dry I couldn’t speak – I mumbled “take care coming down.”

I won’t dwell on what was said when they all skied back down to me (without mishap) – suffice to say lots of lessons were learned that day:

• Never underestimate how easily things can go wrong when you take your eye off the ball
• J revealed that he was more worried about his Dad getting it in the neck than whether M was going to fall off the chairlift
• And we all learned that M is quite capable of tackling the chairlift on his own...he seemed very chuffed with himself and quite oblivious to the panic it had caused

At last it was time to go home – such a relief. It had been a week of stress and anxiety for me.

Gathering the evidence

On returning home I made an appointment with my GP. In preparation I started to make a list of all the things I had noticed that seemed odd:

• My peculiar left arm and it’s tendency not to swing and to become stiff and rigid
• The pain in my left shoulder
• My left foot had started to scuff the floor slightly when walking around at home
• My left hand (I am left handed) kept aching and cramping if I had to do a lot of writing
• My writing had a tendency to deteriorate into an illegible scrawl when I wrote anything more than a short sentence

It dawned on me as I wrote this list that these issues were all occurring on my left side and I realized this was to do with the brain. One of my sisters had suffered a brain tumour at 40 which was successfully removed (non-malignant) and I began to wonder if I had the same.

So I started to google my symptoms and then came across the following: do you feel stiff in your body, arms or legs? Have others noticed that your arms don’t swing like they used to when you walk? Sometimes stiffness goes away as you move. If it does not, it can be a sign of Parkinson's disease. An early sign might be stiffness or pain in your shoulder or hips. People sometimes say their feet seem “stuck to the floor.”

Parkinson’s disease

The words screamed at me from the computer screen. “YOU HAVE PARKINSON’S DISEASE - HERE IT IS IN BLACK AND WHITE.” I was stunned, it took a few moments for the information to sink in – but there it was – the very same description of an arm that wouldn’t swing... and it belonged to a group of symptoms that were diagnosed as Parkinson’s disease.