I was looking for some words to describe the portrayal of symptoms in a person with Parkinson’s.
Parkinson’s is:
The first one I came up with was ‘intermittent‘ because for me and I am sure for many others, the symptoms can be quite successfully controlled with the right medications. This has certainly been my experience. For example, one of my earlier symptoms was left sided tremor. Since beginning treatment shortly after diagnosis it is very seldom that I actually have any kind of tremor.
The second word that just popped into my brain was ‘insidious’. I thought I knew what it meant and that it fitted with what I wanted to say and when I checked it’s meaning it seemed a perfect word to use when describing the nature of this condition and how it affects us.
Here is a description I found on Dr Google!
“…something harmful, dangerous, or unpleasant that spreads, develops, or takes effect gradually, stealthily, and without being easily noticed.”
Certainly in the earlier stages, Parkinson’s can be all these things, the bit that really was on the money for me was “…takes effect gradually, stealthily and without being easily noticed.”
One thing that I find challenging from time to time is the fact that many of the symptoms can go unrecognised. Many people have told me that my Parkinson’s is not obvious and that they would not have picked that I have Parkinson’s and that I do not look like someone with Parkinson’s. But this is where it can be difficult to get people to understand those hidden symptoms and make allowances and space for us to find a way to work with those symptoms.
Here is an idea of some of the things people may not recognise as Parkinsonian.
- Slowed processing – At least two to three times every week, I play a game called ‘Rummikub.’ It is a great game and is good for exercising your mental capacity. I have a regular group of ladies that I play the game with and they are very understanding of the fact that I need more time to think through my moves. They are very patient and I feel comfortable playing with them. However, if anyone joins our table I have had some of them basically telling me to hurry up. One woman even tried to take over by telling me what moves I had to make! I’m afraid she soon got to know not to do that again, as I replied “Excuse me, but I play this game to exercise my brain, not yours!” After which I recall she decided to move to another table, muttering about how slow our table was!
- Memory issues – I have a terrible memory for some things and my poor husband often gets told anecdotes that he has already heard more than once! Or I sit down to watch television at the end of the day with my husband and I ask if we were watching anything. The answer is often yes and he then has to give me a rundown of what the programme is all about. It doesn’t help that I have been very tired lately and often fall asleep, or nearly so when watching a series and I can easily lose track.
- Fatigue – Sometimes I feel incredibly tired. It can hit me in the middle of the day and it takes quite a lot of effort to keep going. If I am home I can pace myself and rest when I need to, but if I am out playing bowls for instance I often need to sit down to rest in between bowls.
- Slowing down physically – This has been particularly challenging for me. Most recently, I found myself playing bowls and towards the end, I knew that I couldn’t cope with a second game. Outwardly, it may have been somewhat noticeable that I was walking a bit slower, but not aware that I felt more than tired and finding it difficult to complete the game.
There are probably a few other symptoms that I could talk about, but these are the main areas where I think often people struggle to understand because they are not obvious to me.
I have learned to either take a notebook with me when I see my doctor, or I put a list of things I want to discuss in a note on my phone. This is helpful to keep me on track to convey to the GP what the issues I need addressed are.
Parkinson’s can also act like a child! By this I compare Parkinson’s to small children being taken to the doctor because they have been obviously unwell. Most things I knew I could handle at home with Paracetamol or other pain relief, plenty of fluids and possibly an antibiotic if indicated. Has anyone ever taken their child to the doctor when obviously really unwell and the little tike proceeds once at the surgery to run around like a mad thing. My daughter was classic at this and many a time, I have had to try to convince the doctor that – while she has perked up while in front of him – once home, she would return to going limp, not wanting to eat and drink and wanting to be carried all the time. It is very frustrating as at times I think the GP thought I was exaggerating as the child in front of them looked fine.
Parkinson’s can be the same. I remember going to my GP and telling them that I was noticing tremors and a few cognitive deficits. He then looked at me and said, “I’ve been watching you closely and I don’t see any tremors and they usually manifest when at rest!” To which I responded that they usually occurred when sitting watching television at night and also when I went to bed. You can’t get much more at rest than that. Because my GP did not witness my tremors or other symptoms, he was not going to refer to a Neurologist. This is where my Social Work training came in handy. I advocated for myself and he somewhat reluctantly agreed to refer me. I probably went to the GP to request they put the wheels in motion for an assessment much sooner than many. That is because both my parents had Parkinson’s and I could recognise the signs. I got the feeling that my GP at time thought I was hyper vigilant for any signs of tremor because of my parents both having had Parkinson’s.
So, even when we are with people who love and support us, it can be challenging for them to treat us with understanding when they can’t visibly see what is happening for us.
We need to be the educator, the guide to our journey, so we are not just seen as lazy perhaps if we can’t manage to do some of the things we used to be physically able to do. Or to understand that expecting us to remember stuff is all very well, but we may need prompts or even just more time to remember than your average person.
What things do you feel people don’t understand about Parkinson’s?
Do you have the tools to help them understand?
Just like we have to be given time to process and understand things in our lives, we in turn need to have patience with the people who surround us, as they learn about the complex beast that is Parkinson’s.
