• Posted in: Carers and Caring

    Ray P @RayPro Norwich - updated 9mo
    Carers and Caring The Twilight zone
    Welcome to the twilight zone! They don’t ever tell you about this when your beloved is diagnosed with Parkinson’s. They leave you to figure it out for yourself, without first shooting your beloved or going for a long walk on a sort pier. Oh, they vaguely ask about ‘depression’ or ‘apathy’ at the doctor’s office; usually with the prescription pad in hand. But they don’t explain why they are asking, or give any advice about these ‘Non Motor Parkinson’s Symptoms’. And this really infuriates me, because in all honesty it is the Non-Motor symptoms that cause most of the difficulty as time passes. The Motor symptoms become the minor issues, and to a large degree can be dealt with. But what really pisses me off is the use of those particular words – depression and apathy, because normal people understand the word ‘depression’ to mean ‘sadness’ and the word ‘apathy’ to mean ‘doesn’t care’. And the reality of the emotional condition of your beloved is anything but sad and uncaring! And so you are left not understanding what is going on, trying your best to ‘cheer up’ and ‘motivate’ your beloved, and slowly going out of your mind with grief and worry. And your beloved is left wondering why you are behaving so strangely, and slowly going daft with guilt and frustration. And this is so unnecessary. By simply explaining some simple brain chemistry in an everyday way instead of trying to impress us with their advanced biochemical vocabulary, these doctors could save us all a lot of grief. They could talk to us about ‘the Twilight Zone’. They could prepare us for it, and alert us to it, and encourage us in finding our ways of living with it. Make no mistake about it folks. The Twilight Zone is real, and it is where almost every single person who has Parkinson’s is heading. Telling yourself it is not real, or that the medicine is going to prevent it, or that we can prevent it by ‘keeping them active’ or ‘keeping them involved’ is a fool’s errand. And then we feel guilty when we can’t keep them active and involved. And we feel angry with them for not letting us keep them active and involved. So, sit back and let me explain this Twilight Zone to you. It is natural, and it really is nothing to be afraid of you know. There will be a bit of Science here, but science can be fun. You see, it is all about sleep. I have been doing a bit of research about this, and the best summary I can come up with runs as follows. In the underside of the brain there are some specialized clusters of cells which release, absorb, or otherwise respond to various brain chemicals. In so doing they operate as a two way switch. If it is going one way, it wakes you up. If it is going the other way it puts you to sleep. The two way system is very stable in healthy young adults, and therefore the transitions from awake to asleep and from asleep to awake are quick and complete. But sometimes damage occurs which weakens the two way switch in one direction or the other. When this happens both pathways become impaired, and the transitions become more diffuse. This means that people have difficulty falling asleep, difficulty waking up, and are not completely awake when they are awake, and not completely asleep when they asleep. The switch can never fully go in either direction. And this is what I call the Twilight Zone. This is where your beloved must live, and therefore this is a state that we have to learn to fully understand. So come with me on a voyage of the imagination, and let’s visit the Twilight Zone. It is eerily misty in this world. Time is strangely elastic, and rather unpredictable. Your perception of time is strangely elastic, and rather unpredictable. And when your perception of Time slips, a lot of other things slip with it. Think about it for a minute. You are used to living in a world where you are accurately aware of Time. Try to imagine a world without this awareness, or with flawed awareness. How do you think, when you are disconnected from Time? How do you connect stimulus to response? How do you connect what you want to do to the process of doing it? Here in the real world I decide to stand up, and my body goes through a rapid series of steps. Move the feet just so. Tilt the spine just so. Exert force with the muscles of the thighs, the abdomen, and the back of the legs just so. I don’t even have to think about it. It just happens. My elderly knees grind a bit, and I complain a bit, but it happens. But in the Twilight Zone, I can’t even make the connection between wanting to stand up and initiating even the first bit of movement in my feet. It is not simply a case of the muscles not doing what they are told (A motor symptom). It is a case of the order never being given in the first place. There is a complete disconnect. This is what the doctors call ‘apathy’. But it would be more accurate to call it ‘disconnect’. And it is a result of being ‘not fully awake’. Now, just try to spread your imagination out until this disconnect is in every single aspect of your life. A disconnect between hunger and eating. A disconnect between a full bladder and going for a wee. A disconnect between hearing your favourite song, and the memory connected to that song. A disconnect between the sight of your beloved and the surge of love. In the early days, it is possible to rouse your beloved to complete wakefullness. But it will not always be possible. As time goes on, your beloved will become more and more disconnected, more and more sleepy. This can not be helped much by anything you do, or by any medication. All you can do is help slow down the journey into the Twilight Zone by keeping your beloved’s fitness levels and nutrition levels as good as possible. But don’t, for mercy sake, fight so hard to avoid what is coming that you loose out on what you have now. Don’t be so afraid of the Twilight Zone. Don’t allow your beloved to be so afraid of the Twilight Zone. Because it is no all bad, you know. The Twilight Zone is not a bad place if you don’t bring fear and guilt in there with you. The Twilight Zone can be a friendly place, and a pleasant place to be. Because the Twilight Zone is the space of daydreaming and reminiscing. It is the place of poetry, the place of creativity. In fact, actively engaging with the Twilight Zone in the early stages of Parkinson’s can make the eventual journey much more pleasant for both of you, whereas fighting it will make the eventual journey more unpleasant for both of you. Of course, that is not the kind of advice that people want to hear; the advice to ‘let go’ and allow the condition to change the way you live to an enormous degree. But it is the advice I gave my beloved. And I instigated the changes in our lives that allow him more and more opportunity to drift in the Twilight Zone. If you doubt the efficacy of that advice, just check out his poetry. (Facebook; Denis Murphy’s Poetry.) My beloved could scarcely read poetry when I met him. He thought the proper use of a pen was filling out forms. But the Twilight Zone has given him quite a gift, and his gift enriches the lives of many. That is not to say that I do not nag him into taking a wee walk at least three times a week, and into having a shower at least once a week whether he needs it or not. I don’t nag him too much about chores, simply picking up the slack as he drops it. Eventually I will be doing all the chores, while he does all the dreaming. Eventually he will dream his way into the land of the Ancestors, where he will wait for me. © Emer Cloherty 2019
    2

To view more, please Log In or Register.