PD, Fasting and Me
It was about November 2018 when I first became aware that something wasn’t right. My right middle and ring finger had developed a mind of their own – and began to independently move depressing the right click button on the mouse when I didn’t need it to.
Initially I put it down to some sort of RSI and changed my mouse pad, mouse position etc etc. When improvement hadn’t appeared by February 2019, I conceded that I needed professional help so made a Physiotherapist appointment and began to google differentials that popped into my head. Parkinson’s was on the list, but fairly low down – after all I was only 40yrs of age – surely that couldn’t be a serious option? But as my research intensified and I began to realise that Parkinson’s was far more than just the “shaking palsy” it began to creep higher and higher up the list of possible culprits. Why, you may wonder, did it creep higher up? My irregular movement was not particularly progressing – but my awareness of the fact that Parkinson’s is not just the “shaking palsy” was increasing.
As my reading around the subject progressed it seemed as though little pieces of a puzzle, that had been accumulating for the best part of a decade, all began to fit together revealing a complete picture of Parkinson’s symptoms.
The non-motor symptoms
I realised that the constant fatigue, that hadn’t left me once my children were sleeping through the night and could not be put down to Iron deficiency, might indeed have been caused by Parkinson’s. When I write constant fatigue – please understand that this is an understatement – the fatigue was such that it felt as though it was infusing my bones and being proactive about anything became a battle – which I’m glad to say I mostly won … but had I remained undiagnosed for much longer this may not have remained the case. The fatigue combined with a feeling that was completely new to me - apathy, was a real sucker punch. The days leading up to my monthly period everything would seem worse, I felt sluggish, tired and irritable. My low mood seemed particularly persistent, traversing into the territory of anxiety and remaining there for several days. Sometimes, I felt irritated with myself – like I might slowly, but surely, be going mad. I couldn’t see why everything for me felt such a chore, where others at the same stage in life seemed to be coping ok. All of this was heightened by my inability to get a good night’s sleep – my restless mind would be poring over to do lists, as my body would sink further into the depths of fatigue.
Physical pain and motor symptoms
There was also physical pain, in my right hand initially – extremes of temperature would cause pain, which would induce a sharp intake of breath. The pain invariably passed, and a radiograph revealed no early signs of arthritis, so I ignored it. But, in the months leading up to diagnosis the pain became constant and dull – focused more upon my right shoulder than my hand anymore – it made me wince if I reached up too suddenly.
Then there were the embarrassing falls, my right ankle would suddenly give way, making me sometimes stumble and fall. Memorably I once fell in a car park, ripping a hole in my favourite trousers and sustaining a rather sore graze at the same time. I felt rather foolish tumbling like a toddler quite so much, it was embarrassing how suddenly it would occur. I saw the GP who said I must have sustained a ligament injury during one of my initial stumbles, and poor healing was likely causing the recurrent falls. He recommended wearing an ankle support, which I duly did, and it did help. But, when a few years later the falls returned and I finally got myself to the GP again – this time they referred me to a physiotherapist who gave me some great exercises to do, which I still practise today and am happy to report that doing so has helped reduce the sudden inexplicable falls considerably.
The most common sign of Parkinson’s that I had was reduced arm swing on my right – combined with reduced gesturing. Where previously I had gestured with both hands my husband noted I now predominantly used my left hand. The same applied to eating, my husband observed that at some point during most meals I would shift to eating with my non-dominant left hand. When walking around I now almost cradled my right arm, neither my husband nor I could recall when this had begun – just that one day it was there.
The diagnosis
By the time it came to my initial Neurology appointment in July ’19 I knew that there was a good chance the Neurologist would confirm a diagnosis of Young Onset Parkinson’s. To be honest, the confirmation of diagnosis came with a sense of relief. Relief that a) it wasn’t anything terminal and b) I wasn’t going mad and imagining my symptoms – there was a real cause for all the disjointedness I had been experiencing.
So far so good? The story of my symptoms and diagnosis is a sadly familiar one. But today I want to discuss how Parkinson’s affects my daily life – my life as a person with younger onset Parkinson’s at home and in the practice of my faith – Islam.
Well one thing is for sure, when I have insomnia, it makes it a lot easier to get up for the dawn prayer if one hasn’t fallen asleep in the first place! Jokes aside – my faith has helped me immensely through this time. I find it easier to accept all that is happening to my body, as I believe the body is just a vessel for my soul - and my soul – well that Parkinson’s cannot touch. This thought, when brought to mind, will instantly bring a smile to play upon my lips – it feels like sticking a metaphorical finger up at Parkinson’s to say “You may have my body, but my soul? My soul remains free!”
Parkinson’s, Fasting and Religious Identity
Starting medication is a big decision for everyone – and very much a double-edged sword. On the one hand there is immense gratitude that there is a medication that can help relieve the symptoms of Parkinson’s, while on the other hand the idea of becoming dependent on a drug that you’ll have to take for the rest of your life, every day, several times can be difficult to accept too – especially if you develop Parkinson’s at a younger age.
However, as a practising Muslim starting medication, which in my instance I must take 5 x a day, also came with the knowledge that partaking in the Muslim month of fasting, Ramadhan, would never be quite the same again. This impacted me hugely both at the time and now. It’s still something I struggle with. Ramadhan isn’t just about fasting, there is a huge spiritual element to it, but abstaining from food is such a big part of it and hugely helps in focusing one’s mind upon the spiritual self. It also helps one feel connected to the wider Muslim community; this is where on a personal level I began to worry I may begin to feel a disconnect if I wasn’t fasting. Which is primarily why I have continued to fast as normal – bar my needing to take this tiny tablet (without water) – I have fasted with my family from Sunrise to Sunset for the month of Ramadhan. My logic was that if by the time of diagnosis most people have a dopamine reservoir that has already gone down by approximately 50%, and I have managed to fast ok the previous years, then why not now? I figured that now, with medication on board, fasting should, if anything, be easier.
A Post Diagnosis High
Thus, I continued fasting as normal during Ramadhan, apart from my little magic pill, nothing else passed my lips. The first two years post diagnosis I fasted every day during Ramadhan, with very little issue – I became a bit dehydrated, but otherwise my movement was improved – if anything I was on a post diagnosis high. The medication helping me move with an ease I hadn’t realised I’d been missing. Such is the insidious nature of Parkinson’s – it takes so gradually from you that the reduced function is barely realised until it reaches a pivotal point. Stirring sugar in tea suddenly feels difficult, one’s hand fatigues halfway through a meal and placing food in one’s mouth feels like a chore one’s body can no longer complete, washing hair to suddenly realise one hand is doing all the hard work – the list goes on. But medication and exercise post diagnosis worked a treat – I could suddenly manage all those tasks and fast without any issues.
Where before diagnosis I had what I thought was usual Ramadhan fatigue, post diagnosis and starting medication I realised the fatigue had been more than just due to Ramadhan. Getting up for the pre-dawn meal – in our house invariably poached egg and toast – was suddenly a bit more manageable. Don’t get me wrong yes, it was still tiring, but everything felt more manageable.
The last ten nights of Ramadhan are considered especially important; therefore, many Muslims will stay awake late into the night praying and contemplating. Staying up late has often proved to be difficult for me. Fortunately, this was also one thing which improved post diagnosis – I now have an ability to stay up a bit later, not much mind!
What a day in Ramadhan is like with Parkinson’s
To be honest, a day in Ramadhan with Parkinson’s is not very different to before diagnosis. We wake for the pre-dawn meal at about 4am. I’ve always been conscious of what I eat therefore there are no fried breads and /or eggs for our family! We routinely have poached eggs and sourdough toast; I will sometimes vary it by having porridge instead. It goes without saying that we drink as much water as we can, before going to pray and back to sleep for a couple of hours. This pattern of broken sleep can make one tired, but after about a week the body seems to adjust.
Through the day my energy levels do fall, and prior to diagnosis, I would need a mid-afternoon nap. Now, post-diagnosis, as I know to listen to my body, I’m able to catch myself before I crash. During Ramadhan I always book a few late starts combined with some early finishes, and if I feel the need I do sometimes take an extra tablet during the fasting day.
After work I will often have a rest before preparing a simple evening meal. The key to being able to make Ramadhan work, despite the onset of Parkinson’s has always been to rest and make meals as simple as possible.
Until this Ramadhan I was quite proud of how I was able to fast, even with a Parkinson’s diagnosis. Unfortunately, this year has made it apparent to me that despite my best efforts – it may not always be possible to fast as I have previously done. The dehydration slows everything down, including gut motility and quite possibly the efficacy with which my drugs work. This resulted in me feeling more sluggish this Ramadhan, I felt like my medication wasn’t working as well and felt disjointed. I was able to function and do everything required of me, however I felt that familiar slight stiffness of movement creeping back. Tremor re-emergence on my right side, earlier than previously noted – everything in my body just felt a little off kilter. I thought maybe it was just dehydration, so I drank as much as I could in the hours between sunrise and sunset. I continued to keep all the fasts and made it to Eid, and felt ok, not brilliant but ok.
Time for a change
After Ramadhan I had assumed that once diet and routine returned, I would return to my “normal” too. However, we’re a month on, and this time I sadly don’t think things are returning quite to the “normal” of before. My family feel strongly that it is now time that I stop keeping all the fasts, and only keep the occasional one. They’ve all noticed I’m a little slower and slightly more “shakey”. I have mixed feelings about it all, stopping routine fasting is a big psychological hurdle. Of course, there is no compulsion to fast, and as Muslims we believe that no one with a physical or mental health condition should be made to fast. There’s even a stipulated amount of money that you can donate towards feeding the needy, in lieu of fasting – yet the idea of stopping fasting when I have no physically obvious reasons for not fasting feels wrong. I worry I won’t feel a part of the fabric of our community, that the spiritual advantages associated with not focusing on food will elude me. I know this isn’t the case – if one feels one’s health may be adversely affected by fasting it is not advised to fast at all. But I can’t help feeling it’s another part of me I am having to give up prematurely, and this saddens me. Then I remember that I am here and present for my children, living well with my family – that in itself is a huge blessing.
Though it may feel as though I’m giving up pieces of me in considering stopping regular fasting and reducing work commitments – I still think I’m lucky. There’s plenty more I have to offer the world, and plenty more I hope to learn from it! Life may not be as I thought it was going to be in the future – but that doesn’t mean it won’t still be happy and fulfilling.
