Before I start this post properly, I am going to have to begin with a comment about the end of the preceding post ‘The Morning After’. Just to clarify the youngsters referring to my blog as ‘sick’ were actually being complimentary. ‘Sick’ in today’s slang means ‘good’. Actually as I am defined as young/early onset I need to start to speak like a youngster.
Now on with this post :
I love words (you may have guessed this with me making up my own word for the title). However, there are words which, to be honest, I wish I still didn’t understand or have in my vocabulary. Those relating to PD.
At the beginning of this blog I said that one of my aims was raising awareness and understanding. So before I go any further, below is my simplistic definition of PD and two key words.
In case any Neuroscientists inadvertently stumble across this blog.
- Firstly : ‘Hello’
- Secondly : ‘Please forgive my clumsy, simplistic description. I am a 49 year old mother with no science background trying to explain a complex degenerative neurological condition’.
- My description of PD :
An area of the brain is broken, and has stopped producing a chemical which transports messages from the brain to the rest of the body. This chemical is called dopamine.
The condition is incredibly complex, it is still not fully understood. If I tell you that in 1817 James Parkinson identified it as a condition, then called the Shaking Palsy, and later renamed Parkinson’s Disease.
200 years, zillions spent on research, and still no cure.
If dopamine causes such chaos when it is missing, why don’t people know about it?
I am going to try and explain what dopamine means to me, living with PD, through something else that we all understand and is vital for health and well being – water.
Imagine that each person has their own personal water supply, enough for them for life. The water supply is so constant and available that everyone takes it for granted. People have no reason or interest in finding out how and where it comes from. Individuals are unable to share it, even if they wanted to. They never have to worry about finding other sources of water.
Now imagine that your personal water supply was perfect for 44 years. Then suddenly your water supply becomes unreliable. It switches on and off with no warning. When the water is reinstated temporarily you are unable to store it. Your friends and family still have a constant supply, but can’t share or help you. As water is essential for life and well being, the quest to repair the water supply, or find other sources of water is constant and all consuming.
Now substitute the word dopamine for water.
Fortunately, today in the developed world, the modern day elixir of life, water, is plentiful. Dopamine, unfortunately for me, is not yet available in sports bottles in convenience stores.
People without PD have a lifetime supply of dopamine.
I no longer have that. My supply is broken and depleted.
As I am not a Neuroscientist, I fundraise to donate to those looking for a cure and organisations supporting those with PD. I am also constantly looking for ways to replace/boost my dopamine. If I was told two sticks might find a source of dopamine I would be hosting the inaugural meeting of ‘The Divining for Dopamine Delegation’ (I do like an alliteration).
As I said earlier ‘I am not ill, I have a condition that needs to be managed’.
One of the ways of managing the condition is with medication. I will go into this in more detail later – but one word is worth mentioning now – Levodopa.
Levodopa is the ‘gold star’ medication, and was discovered around 40 years ago. It is not a cure, it is used to manage the symptoms.
To me personally (sometimes) levodopa is brilliant, amazing and miraculous. It somehow makes communications between brain and body work again. (When it is working) I can sometimes feel like I am cured.
There had to be a ‘but’. After all if a tablet reliably managed all the symptoms 24/7 for life, then there wouldn’t be a blog. My blog would just say I take a tablet each morning, get on with life, until a cure is found.
Just to make it very clear – I want this blog to be as short as possible. I have no wish to be blogging at the age of 80 about living with PD. I want to be blogging at the age of 80 (cured of PD) about being an accomplished tightrope walker. It is not enough for levodopa to give 24/7 coverage I want, and need, a cure.
So I continue. I take a tablet*, it goes into my stomach and then ‘magically’ (not a medical term) some of it, hopefully, gets to my brain to help with dopamine production. I say ‘hopefully’ because in my case any of the following could happen :
- It is a long way between stomach and brain and the drug can get lost enroute.
- Medication can switch on and off without warning (so be working one minute and stop as quickly).
- I currently take meds five times a day and they can take 40 minutes to work, or 2 hours, or 3 hours or not at all.
*As of February 2017 I actually take twelve tablets a day, but more about that later.
There are many motor and non motor symptoms, and although I don’t have them all, I have a wide selection. When meds stop working it is an (un)lucky dip of what will break through.
So a real life PD example is my walking.
When meds are working I can walk normally, brain and body are communicating.
When meds aren’t working one way PD might affect me is my walking. For example I might find it incredibly difficult to bend my left knee or swing my left leg forward. I am not paralysed, but it takes incredible concentration and I feel like I am trying to move through treacle. There is nothing wrong with my legs physically, the message on how to walk has got lost between the control centre (brain) and the legs.
So I am constantly looking for other ways of managing the condition, chocolate, exercise and music are my top three. So when things are bad, make way for a middle aged woman with chocolate round her face, running, listening to heavy rock music.