Today I was watching one of the series I follow on Netflix. I don’t know what I would do without Netflix and other streaming services, especially when I have been recovering from one of yet another surgeries. When you are immobile or have limited and painful mobility, any distraction that doesn’t hurt is invaluable!
Anyway, I digress!
I was watching this series and one of the characters revealed that her Father has Huntington’s Disease and was in the latter stages. Huntington’s is a neurological disorder, which is degenerative and also hereditary. She was opening up to her friend and the subject came up about whether there was a medical test that could tell whether she had the Huntington’s gene and whether she was likely to end up with the condition. In this initial scene she stated that she did not wish to know the answer to the question. Then she went on to say that she would avoid falling in love and perhaps getting married and definitely would not have any children in case they were ultimately going to end up with the condition.
I am sure there are many people out there that have symptoms and a strong feeling that there is something significant wrong with them. However, they choose not to find out for sure what – if anything – is causing the symptoms. They seem to want to close their eyes and wish their symptoms away, they try to ignore them and may do so for quite a long time. It may be that these sort of people – the ‘ignore the symptoms and they will go away’ mob are not helping themselves.
I often read on Facebook Forums and other online sources of discussions about how people just five years in are quite debilitated by their symptoms. They may have significant tremors, problems with gait, difficulty in swallowing and also subtle cognitive changes and issues with memory. It appears that for some, the symptoms need to get to the critical stage where that person’s presentation when seen in public makes the diagnosis more obvious. When the symptoms can no longer be ignored or excuses made, it is high time to see your GP and ask to be referred to a specialist.
My philosophy in these matters is that it is always easier, I feel to face any long term health issues head on. To read articles and information online and read personal blogs of people’s experiences with Parkinson’s and podcasts on the subject. There are quite a few out there and well worth a look and/or a listen. I have always found it easier when I know what I am dealing with and I can then start to have a plan. Sticking my head in the sand and trying to pretend all is well when it clearly isn’t does not help anyone. Symptoms ignored can certainly make any condition worse and there may be medications available to treat symptoms and to return to at least a modicum of normality.
Yes, for me I would always choose to know what is happening to my body and why. To understand that others are affected by my health issues, especially my poor husband who is my main supporter. In knowing what is happening to my health and ultimately to my body, we can develop strategies for exercise, healthy eating and medications to assist in dampening down symptoms.
Think back on your diagnosis – if you have had one. How do you think you could perhaps have managed without a diagnosis and medications? Would you have sought a diagnosis earlier given the chance for a redo?
I have some further thoughts in my podcast titled ‘Is it better to know?’
The link is below, I hope you enjoy it.
My journey with Parkinsons 