In the words of, Hypnotic Hugo, I’m ‘Back in the Room’
Blog Paused 14 June 2017
Blog Restarted 7 July 2017
I trust this blog finds you well rested and chomping at the bit for more positivity and humour about a degenerative neurological condition.
This ‘thing’ (at the moment it doesn’t deserve a name) has been testing my positivity over the past few weeks. But a rest and regroup and I’m back on track.
Actually I feel under pressure with this post. It feels like the first post but with knobs on. The first post back in January 2017 had no expectations as it had no audience. This post has subscribers who will get a notification ping in their email.
On with the blog :
To be honest I was hoping not to be back blogging about disease. I was hoping a cure would be found whilst ‘I was on a break’ and I could start that tightrope walking course.
However, no cure yet.
A brief PD update.
When we last liaised I was generously sharing (aka speating*) about the meds cutting out and having to pull out of the Vitality 10km. I mentioned that I was moving to a new Consultant, a PD specialist (my first consultant was brilliant and had looked after me very well for the first five years, but we decided that it was time to move to a PD specialist as the condition advances).
*speating – repeatedly self pitying. My mini support group, the Dagenham Dancers, have an agreement that we can repeatedly moan or self pity to each other. No-one judges or moans, and no-one holds back.
I do anticipate a modicum of confusion so I will set the scene which will hopefully make my waffle clearer*
*obviously this refers to making my waffle, as in writing, easier to understand. It does not refer to either a ‘transparent bread product’, or ‘morning bakery product remover’
You bump into Pauline from number 22, the conversation may go something like this. The polite and ridiculously superficial conversation would be : ‘How are you?’ ‘Okay, how are you?’ ‘Okay, how are you?’
You bump into a Dagenham Dancer in a hardware store. Emotions, all over the place : The speating conversation version would be : ‘How are you?’ ‘Crickey, where do I start, (blah blah blah) drugs (waffle waffle) awful (blah blah blah) spilt the ketchup (blabber) embarrassment (blah blah blah) walking stick (mumble) Veronica Smithers (mutter)’ and continue and repeat.
My new consultant has added another med into my schedule. Rasagiline. I know you will have questions, so to save you searching for a sealed down envelope to write them on the back of, I will bullet point some of them :
- It is a monoamine oxidase-B inhibitor.
- 1 tablet in the morning.
- Total of 13 tablets a day.
- ‘I avoid cartwheels, so I don’t know if I rattle’.
- Definitely an improvement, but still cutting out in the afternoon.
My consultant has also referred me on to the advanced treatment part of the hospital, to look at the possibility of DBS (deep brain stimulation – yes this does involve drilling into my brain), and the advanced medication treatments. Not for this week, but for the future.
Again, these conversations and referrals could drag me down, but I am taking them as a positive. I have to be pragmatic (word of the week). PD is going to get worse, and I will need these advanced treatments in the future. So I am now on the list for initial consultations.
Although my new aim in life is to be the poster girl for the first humanoid cured of Parkinson’s.
So I will raise a metaphorical glass to the next 30,000 words.
Onwards and upwards.
All those who have queued round the block all night in the snow for this blog rebirth then step forth and have a butcher’s.