6 Months Before Diagnosis

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 palliative care...).

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

First signs of Parkinson's

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 - it seems to have a mind of its own which is somewhat disconcerting.

Arm stops swinging

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.