As I often do, I was reading some posts by others with Parkinson’s and the topic of ‘hidden symptoms’ came up. I know I have spoken about this before, but it is certainly worth a mention and is likely to be a thread woven throughout my story.
Often the first time someone might recognise there is something going on with us, is when they notice the obvious signs. The signs that seem to be the main and sometimes – the only – things that people know about the condition which is Parkinson’s. That is not surprising.
Often people who are living with various health conditions don’t necessarily tell people all that is happening to them. For that matter who has the time? Do I have the time to sit down and give a blow by blow account of all the ways that Parkinson’s makes itself known in my life and in my body and how it presents? Probably not! Even if I did, would the person I have tried to give the information to have the sort of time it would take? I certainly don’t want to be ‘that person’ that people are warned about. People who keep talking through the hints that a person needs to go on their way and is not needing the depth of information that they are receiving and were not prepared for. I have been with people and had trouble getting away from them. I would try all manner of ways to signal I needed to move on. From the gentle ‘… well I need to get back now..’ to physically inching out the door, till I can get close enough to say, ‘well, better go now… bye!’
I have tried with anyone I spend a reasonable amount of time with, to let them know the important stuff. Like slowed processing. That I need time to absorb and consider information and maybe even ask for certain parts to be clarified. That I need to be able to focus on what they are saying, so minimising background audible ‘clutter’ like the TV or radio. Switch them off or mute them if you want me to fully engage in what you wish to discuss.
Word finding is becoming more difficult. Sometimes the most mundane of words seems to slip through my grip. At times my husband will wait patiently for me to find the words, which is my first advice to him. Other times I will just not be able to find the words or thoughts I needed, so I give him the go-ahead to help me out. Trouble is, much as I sometimes can’t find what I want in my brain space, he can be – and often is – completely mystified as to what I was wanting to tell him!
Just be aware that there will be a lot going on for the person you are trying to support and maybe they can’t quite put into words what they need. It is worth getting alongside them and asking them what their challenges are, the things that are not obvious and asking them how you can help.
Below is a podcast with some more ideas about challenges we face that may not be recognised.
