Small print :
Over the past five years I have gathered a lot of knowledge about PD, in fact it could be said (and it has been) that I am an ‘expert patient’. However I am very aware that a little knowledge can be a dangerous thing. So I know some things, but not enough to be qualified to give advice. In fact, the ‘next 5 years’ is probably going to be more complicated, and the PD symptoms and meds more bespoke. So any worries please ask a medical professional, and please don’t change any medication/routines without checking.
Back to the blog :
You know about my love of words, you have experienced my made up words, waffle and meandering blogs. However there are some ordinary words which become quite emotive when connected with PD.
A long overdue digression …
In my opinion the internet is smashing, but also simultaneously not smashing. It goes without saying it is good for watching cats falling off of settees (obviously with the proviso that none were harmed in the making of the film – sofas are expensive). But it does mean we don’t have an opportunity to delve into our minds and think things through, ‘how old the dodgy rockstar is really’, ‘how heavy is the world’, all that information (and more) is available at the swipe of a phone.
The same applies to the definition of words. I could easily look up ordinary words on the internet and cut and paste the dictionary definition. However some ordinary words when associated with an incurable degenerative neurological disease become quite emotive to me. I won’t go as far as saying I am redefining the English language, Messrs Roget, Collins and English, have nothing to worry about.
- ‘Advanced’
I, personally, have always thought of Advanced as a positive word, for example :
Advanced training course : it is a step up from the Basic course.
Advanced guitar lessons : a high level for people who already have some basics and are heading for advanced pieces and improving their playing ability.
However ‘Advanced’ when applied to anything PD I see as a negative.
I have been referred to the Advanced treatments at my hospital. So, presumably this means my condition is advancing. Apparently my PD is complex, because of the combination of meds and symptoms. As you would expect from me by now I am doing everything I can to seek information and support to help me deal with this.
(NB please be assured that a lot of the time the meds are keeping the symptoms under control and I am tipish topish (I do take a lot of meds). However for parts of everyday the meds switch off randomly and then the symptoms breakthrough. So smashing meds are doing what they should, but not smashing they switch off).
DBS (Deep Brain Stimulation) and Apomorphine are two advanced treatments, I could cut and paste definitions from the NHS website, but then you can do that yourself (I suggest you look them up and speak to medical professionals about them).
Below are my clumsy descriptions of two complex treatments (remember I am not a Neuroscientist)
Deep Brain Stimulation (DBS)
During a 7 hour operation, electrodes are inserted very carefully (obviously) and precisely into the brain. One in each side of the brain, each of which are responsible for each side of the body (to make things more confusing the left side of the brain operates the right side of the body and visa versa). These are controlled by a remote control which bluetoothes onto the battery, implanted under the skin in the chest. A cable then runs up the neck to a junction box behind the ear and connected to the brain equipment.
The electrodes stimulate the part of the brain which is broken to encourage connections to send messages between brain and body to gain movement again. Medication can usually be reduced. I have seen people who are very debilitated by the condition and on high meds, have their meds reduced and an amazing affect on their physical condition.
Before any readers book themselves in for the op – just think for a moment a BRAIN OPERATION … mmm not to be taken lightly. This treatment is not suitable for everyone, certain symptoms it will not help and the patient has to be put through lots of tests to ensure they are suitable.
Anyway ho hum, I am in the system and may be on the list. It may be on the cards in a few years time – watch this space.
- Apomorphine
This can be in two forms – epi pen for emergencies, and constant stomach pump infusion for continuous infusion of the meds.
I realise now that the words ‘can’t walk’ is quite a difficult thing to understand. The ‘I can’t walk’ problem which I have had before, when my legs won’t bend, I have actually learnt a few tricks to get out of and get walking again. Including music and walking backwards.
However the dystonia I get in my foot is really debilitating, it has been in my left foot on and off for a while, but now my right foot is whispering this symptom. It feels like my foot is being wrung out, it twists and contorts and the toes curl up and scrunch all of their own accord. I can’t walk on it or bend my foot. The epi pen should get me out of that with the injection of the new drug. However, I am also researching non-drug ways of getting out of it as you will appreciate I would rather not take another med.
So advancing treatments for an advancing condition. So thank goodness for those clever people.
Thank goodness, indeed.
- A brief ode :
‘Drugs’ or ‘Meds’ which word would you use
When talking about tablets, which should I choose?
‘Meds’ is probably the best out of the two
The word ‘Drugs’ scares me and probably you
Sensibly I should say ‘I need my ‘Meds’, and be calm
But often people tilt their head and touch my arm
Much more mischievous, I am sure you will agree
Is shouting ‘I need drugs now’ at afternoon tea
The ladies who lunch all stop, tut and stare
I ignore them and act like I don’t care
I then stand and attempt to cross the room
Before my drugs have kicked in – far too soon
I will stagger and shuffle and fall about
‘I need more drugs now’ I randomly shout
This little bit of fun amuses and helps me
Gets me through the day when I feel twaddle-y
