Well, if anybody was wondering what a typical day for somebody who has long term Parkinsonism is like I will take you through it. It's 4.30 am and unfortunately, I have to get out of bed because I have been woken up by the painful kneck that I have to put with due to my ever-increasing symptoms. Usually, if things go well and my medication is working efficiently and there's nothing that disturbs me while I'm in REM sleep I can usually rest until about 6am but not this morning because of my kneck. And if I'm awake there's no way I can stay in bed and relax because my body won't let me and when the involuntary movement starts there''s no point in trying to fight against it because I will end up wearing myself out before the day hasn't even started. But even more important to me than that I don't want to wake Jane, my wife, up because she sleeps in the bedroom above me. We made a conscious decision quite a few years ago that it would be safer and more practical for us to sleep separately and for me, in particular, to sleep downstairs. mainly because of my body movement in the night was getting worse and was disturbing my wife's ability to get a decent night's sleep but also I was starting to have a lot of falls especially at night if I was trying to get to the toilet in the dark.
And at that time Jane was still working in full-time employment and needed her sleep so it made sense to sleep in separate rooms so we had an extension built to the house with a downstairs en suite so that I had everything I needed so that I was safe and it made even more sense now because I can be woken out of my sleep so easily and if that happens and I haven't got enough medication inside me then I can be moving quite a lot and that would disturb anybody but the other decision I have to make is "Do I take an extra bit of medication to get through to 8am when my first dose of medication is due and if I do that I know it will lead to me having to put up with increased dyskinesia in my legs later on in the day so it is a big decision to make? "Short term or long term Rob what are you going to be ?"Well, I had managed to creep clumsily out of bed and shake my way into some form of clothing so that I didn't catch hypothermia because the central heating doesn't cut in until 8am and I have a long way to go. So I try to shut the door into my study as quietly as I can behind me, but for anybody with Parkinson's being quiet isn't an easy thing and I know that if I do wake Jane she will not go back to sleep so I shuffle around and eventually fall into the door amazingly without waking her and eventually shut it.
Well at least I managed to do that and the day hasn't even started. Now the next hurdle I have to get over is to somehow walk over to my armchair and sit down in it without breaking my kneck along the way which is very possible without any medication inside me! For anybody who has to live with Parkinson's on a daily basis, they will totally understand but if you haven't got that extra bit of Dopamine inside you to operate those bodily cogs of yours that help you to move then you have a big problem. And the longer you have the condition and those brain cells slowly start to disappear the more reliant you get until you reach the point that I am at now that if you don't have any your body simply doesn't function. And only my first problem of the day that I have to consider but in this part of my day I should tell you that I manage to get into my chair eventually where I am relatively safe and decide not to take any extra medication until my first dose is due at 8am because I know full well that if I do that it will lead to me having even more problems later so I try to sit as comfortably and as safely as I can in the chair, with my legs moving around and out of control until 8am and I can get some sort of normality back into my body and then I will know that I have managed to get over the first hurdle of five which I will have to face for the rest of m natural born life. And believe it or not despite all these trials and tribulations that I have to get through I always find something in the day to make it all worthwhile.
The one thing that I am always sure of after my first meds of the day kick in is that I will at least get about three hours of normality until my next meds are due so if there is anything that I want to get done I have to do it within that time frame because when I take my second meds of the day There is always a delay before they start to work so I have five different parts of the day when basically I am incapable of doing anything at all until they start to work and I can't tell you how frustrating that can be especially if I'm trying to write or do something that involves dexterity but today is Sunday and all we were going to do was listen or watch the tennis from Roland Garros in Paris so if I did happen to fall asleep on the settee it wouldn't really matter. So basically each day from now on is governed by these blocks of time when I am capable of "doing" things and that's assuming that the meds are working properly because if they don't that leads to trying to sit about until the meds decide to work. I was going to use the word relax in the last sentence but I decided not to use it because I have no idea what the word "relax" means any more.
So every three to four hours during the day it is this neverending cycle of trying to get as much as I can "done" while the meds are working and then battling through the "off" times which can be totally unpredictable and very energy-sapping so Jane my wife is not surprised when she finds me slumped in my chair totally exhausted. But I wasn't put on this earth to be beaten by a little thing called Parkinson's so I just carry on as best I can in this little bubble of mine and prepare myself for the next obstacle that I have to face which is my third dose of medication between 3.30pm and 4pm.
One thing I neglected to mention that has a big effect on my medication is food and unfortunately, I got it wrong today and if I get it wrong I pay. And pay I certainly did. You would have thought somebody of my experience would know by now that you never have an intake of protein at least an hour before meds and I just basically forgot because I put my stomach before sensibility. So when it came to taking my third dose of the day nothing happened. And when that petrol in your body hits empty there's no way that you are going to restart that engine of yours again until it gets the right fuel and the trouble with the brain is that it is light-years more sophisticated than a two-stroke engine that just needs petrol so when certain parts of the brain switch off they are very hard to switch on again and I knew that as I took my meds because nothing happened.
The trouble is when those meds don't work you've had it and there's nothing you can do. I tried to look at my phone several times to answer messages from various people and I just could not hit the right keys but being the stubborn person that I undoubtedly am I persevered and managed to type a three-word message but the amount of sheer willpower that I was having to expend to complete a very simple task like that gives you some idea of the problems that I have to cope with every two or three hours. But I don't complain to anybody. What's the point, Nobody is going to wave a magic wand over me and make me feel better.. So I just do as much as I am able to do and accept it for what it is.
It's just turned 8pm in the evening and I'm about to take my last but one dose of medication for the day but after the last fiasco of eating food at the wrong time and it interferes with my medication I decide to take it slightly earlier so that I can have my evening meal but even that is that isn't always guaranteed so I take my medication and sit in the very same armchair that I was sitting in at 4.30am this morning and wait for my medication to kick in. And that is what my cycle of life is now. Three to four hours of relative normality with the dyskinesia to follow.
I just don't think farther than the next dose of medication and I make damn sure that I make the most off the bits in between. But its something I have had to get used as the years go by and there's absolutely no point in feeling sorry for yourself because unfortunately, that is what life has thrown at you so you have just got to get on with it. The only problem is that the people who have to fit in around you, namely your family have to fit in with your time frame and that's not really fair on Jane my wife because it retracts on the things that she would like to do as well.
I have just woken up from being asleep in my armchair after having my evening meal and without being aware of it I've been asleep for nearly two hours through sheer exhaustion and not enough sleep and any normal person would just switch all the lights off crawl into bed and sleep for eight hours plus to make up for the sleep that they lost at the start of the day but I can't because I'm an hour away from my last dose of medication for the day and if I don't take that I won't be able to get into bed and get any sleep at all so I have absolutely no choice.
So I gather what energy I have left and shuffle around the house doing one or two chores that I can still manage and by about 11.30pm Jane my wife is usually so exhausted through looking after me and doing all the household chores that she has to go to bed so I am let alone with my thoughts.
I am very much a creature of habit mostly and what I usually do if I am still capable of it I make myself a hot cup of tea which is the totally wrong thing to do when you need to rest like I do because of the caffeine and I get a handful of ginger biscuits and I slump down in that overused armchair of mine and I think about things because I have clarity of thought. Now you would think that after having the day that I have had which started at 4.30am in the morning you would want to just crawl under the nearest bush and try and forget what I have to put my mind and body through each day but not a bit of it. I feel happy because it could have been so much worse if I had allowed it to be but I didn't. I made the most of the years when I was capable of leading a fairly normal life and doing normal things. Jane and I had a family and we tried to lead as normal family life and do all the things that families do even though my Parkinson's was starting to get worse as I knew it always would. And that was so important to me in the years before the illness really started to take hold because I know now if I hadn't have done that I wouldn't be able to go through what I have to now.
I dunk all the ginger biscuits which I have taken out of the biscuit barrel into my hot cup of tea and realise that I have only another twenty minutes to wait until my final medication of the day and if I'm very lucky and my medication starts to work I might just be able to get into bed before the clock strikes 1am in the morning.
Rob Keene (2020)