The ski holiday prior to diagnosis

April 2013 and I manage to get through the ski holiday, not without a good degree of stress. On the last day Phil (husband) and Jordy (younger son) take Mark (elder son, aged 19 at the the time, has Down’s Syndrome, Type 1 diabetes and Coeliacs Disease) for another ski down. I of course emphasised to them to take good care of Mark especially getting on and off the chairlift and they ski’d 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 Phil & Jordy had moved forward to get on the chair and Mark hadn’t moved – he was still behind the barrier. I watched in disbelief as Phil and Jordy had to get on a chair together and were whisked away and Mark moved forward to get on a chair alone. My worst fear was materialising before my eyes.

He had never travelled 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 with Down’s Syndrome tragically dies in fall from chair lift ..."

I shouted at them to stop the chair

By now I had reached the chairlift shouting at them to stop the chair. Fortunately the operators recognised Mark as he had been travelling with his French ski instructor Jeremy all week. They slowed the lift down to enable Mark 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 radio’d up to the receiving end and asked them to slow it down for Mark to get off.
Mark 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 Mark’s life depended on it (well it did, actually – he had been in the habit of lifting the safety bar much too early – thankfully Jeremy had repeatedly stressed to him the importance of keeping it down until he was nearly at the landing station).

My body began to tremble

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 Jordy – I was almost afraid to answer it – his first words were “its ok Mum, Mark 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."

Lessons learned

I won’t dwell on what was said when they all ski’d 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
• Jordy revealed that he was more worried about his Dad getting it in the neck than whether Mark was going to fall off the chairlift
• And we all learned that Mark is capable of tackling a chairlift on his own

Making a list of symptoms

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

Could it be Parkinson's?

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.