One of the most challenging things about having Parkinson’s is that many people – well, I would say most – have no real concept about what Parkinson’s is. It is seen as being primarily affecting a person by giving them ‘the shakes’ and also commonly, difficulty walking with a shuffling gait.
If you don’t have the shuffles or the shakes, people will say – as has happened on many occasions – that I don’t look like I have Parkinson’s and perhaps I don’t! How does a person with Parkinson’s look? Well, like everyone in the world the ‘look’ of Parkinson’s could be anything. The ‘look’ of Parkinson’s may be ‘flat affect’ which is basically an expressionless face. It may be shuffling gait or falling, it may be many things relating to movement and thus is often referred to as a ‘movement disorder’.
The symptoms and signs I mention above are the obvious ones that people usually trot out if you ask them how you can tell a person has Parkinson’s. I am sure if I asked a room full of people to tell me the signs and symptoms, most would trot out issues with movement. However, it is much more complicated than that. There is also a cognitive element to this condition. I was, therefore, very impressed when I went to my new dentist and asked him what he knew about Parkinson’s. He immediately came back with ‘I know it can affect cognition.’ I thought that was pretty remarkable.
Because my dentist had introduced the idea of cognitive changes, I felt I could be open with him about something. He had been talking to me about a problematic tooth, that will need something done to it at some point. He went on to give me options of how to address the issue of what to do with this dodgy tooth. He gave me three options and outlined them to me, so that I could make an informed decision if and when it were necessary. I apologised to him and advised him that one of the ways my Parkinson’s affects me is that I have trouble processing too much information at once. I had been trying to follow the information he was giving me about what could be done with the tooth if needed, but I’m afraid I had to confess that I had no idea what to do. I couldn’t remember what each stage was called, what it looked like and what was the best solution long term. I then asked him if he would be able to write down my options, so that I could read them and work through the options. He was quite happy to write them down for me to consider without any pressure. I told him that one of the reasons I decided to keep him as my dentist, even though he moved further away from Kaiapoi, is that he listened and explained everything I needed explaining! He didn’t just launch in and do stuff, he explained the reasons for whatever treatment he would administer.
One thing I find too hard is too much information. Too much information and no real time to process that information and to give a response. One of the hazards – if you like – of appearing to have no, or little, obvious outward signs of this condition is that people lack understanding. Show a person someone who shuffles and falls or freezes and quite a few people might guess they have Parkinson’s. However, show a person in a conversation with another, seemingly being a conversation partner and often it would be difficult for your average person to pick their diagnosis. This often means – at least for me – that I find myself having to explain that I have some difficulties in engaging with that person. They may be speaking too fast, offering too many choices, rushing me for an answer and/or all of the above. It is a reasonably frequent occurence that I find myself having to explain why the response that they expected may not have occurred. Explaining that a rush of information, with many facets and choices to respond to, often needs more careful consideration before responding. I often write a few notes, or jot down important points that seem to need addressing. Seem to, because if the delivery was too rapid and the response expected in too short a timeframe, I may completely get the wrong end of the stick.
So, as per the title of this post “I’m not deaf, just overloaded” it could be assumed by the person delivering the information, that I have not heard what they have said. They wait expectantly for my response and when I don’t respond quickly enough, perhaps they start to retell the story or provide the information again. I then often need to endeavour to convey to them, that I was listening and yes, I did hear what they said, it’s just that I haven’t finished processing it as yet. When I do finish, I then hope that I have ‘got the right end of the stick’ in my response.
As a ‘conversation partner’ I find it useful to set up the other person’s expectations as early as possible. Perhaps, in the first sentence or two I might be able to gauge what the topic might be. Then, if it appears that the conversation is going to need some input from me, not just as a passive listener, but as someone expected to contribute in some way, I find it best to advise them how my processing works.
Sometimes, even if I try to do my best to explain how my brain works, the person I am trying to engage with may not fully understand how important it is to know how I can or can’t engage verbally with them as they would expect. One example was yesterday. I was driving them home from another friend’s place and she asked why I was driving so slow. I advised firstly, that I had had a couple of speeding tickets lately and I was a bit nervous about getting another. I also advised that driving while entering into a discussion which my brain needed to attend to, was challenging to do either as I would like to. She laughed and seemed to think that I was joking. I did my best to explain how my brain works, but I’m not sure she quite got the message. I will just need to keep remind people, I guess, so that I can hopefully manage their expectations of me.
- So, “I’m not deaf, just overloaded” means that I hear you, but need time to be able to do anything with the information provided.
- I may need clarification of some points I have – hopefully – written down. Important, as I need to ensure that what I am responding to is actually what they said and not my interpretation, which may not be 100% the message the other person was trying to convey.
- I somehow need to give the message that I need their understanding and patience if they expect a response with any degree of relevancy.
- I need them to know that while I hope to have their patience and understanding when trying to have a conversation, that I, too, need to practice patience and understanding while they try to be the conversation partner that I need too!
