Christmas and Parkinson’s

Is it just me or are the years passing quicker? Living with Parkinson’s disease and the significance of time become more and more entwined as the months and years move on. The concept of time for anyone living with the impact of a degenerative disease is monumental. I heard once and I cannot remember where that this is the best version of me and my condition, now, this very moment. Well, I was told this some years ago so you can imagine the impatience and urgency to cram life experiences in, today as it was back then.

Time! For me, speaking only for myself, is primarily a gift. I feel guilty when my anxiety flares, reducing my enjoyment of each precious moment. I take my meds to mitigate the worst of my Parkinson’s related anxiety but it doesn’t completely eradicate it so I’m left with this gnawing worry which really annoys me because every hour is an hour I won’t get back and over-thinking is a waste but there we are, it is what it is. Time is also a harsh reminder of the parts of myself that are inevitably fading, and that is harsh. Harsh to acknowledge, shocking at times to discover and always, always difficult to put into words. All I know is that more and more household and personal aids are creeping in which is a blessing, allowing me my independence, but also saddening because they remind me of the me last year. What do I do? I buy a lovely throw and drape it artistically over the the chair with the obvious hand control at the side that shouts, ‘She needs help getting out of her chair!!!’ I don’t all the time I want to shout back, just when I’m tired or my meds aren’t at their best! I have no words at this time for my newly installed stairlift… still processing that one but it’s only needed when my hip is bothersome or my balance is wobbly. My motto is if I can I will. I don’t want to rely too heavily on these adaptations…. not yet! It’s my way of keeping a sense of control, a sense of self. Deep Brain Stimulation surgery has afforded me the ultimate gift of keeping my Parkinson’s within the realms of manageable for now.

Looking forward is healthy and 2024 is a big year for me. It is with mixed feelings that I will mark my ten year diagnosis, although in reality it will be fifteen, as my Parkinson’s was undiagnosed for a good few years before. It’s been a journey and a half to get here and when I look back over those years, I’m happy to say I’m doing ok even though the disease is becoming more disabling. Importantly for me even though I do struggle with anxiety and low mood my creativity has blossomed and I take pleasure in making my surroundings as joyful and vibrant as I can. I read books with a deeper understanding of life. I respect that life is not a fairytale with a beautiful ending but I am trying to lean into the experiences of life consciously and glean any opportunities and moments of joy along the way. I am also fulfilling a long-held dream next year with the completion of my Master’s in English Literature. When I’m studying it’s not about my Parkinson’s it’s about me, about the schoolgirl who loved to read and write stories. So lots of hard work still ahead of me in the coming months, combined with the self care required to stay healthy and steer clear of the pervasive fatigue that I navigate daily.

So, a really meaningful gift this Christmas is the gift of time. Time to slow down just for a little while and indulge with real pleasure in the food, the films I have seen countless times (Sleepless in Seattle), fresh air in nature, laughter, catching up and ultimately celebrating this gift of Christmas once more with Parkinson’s by my side making sure I’m sensible at all times…. Parkinson’s, always the party pooper! Wishing you a Merry Christmas and thanks for reading.

The Time is Now

It has been some time indeed since I have written a personal blog entry. In all honesty this year has been challenging in the extreme for me. Initially I thought my Deep Brain Stimulation surgery would be happening earlier this year but as with a lot of things they follow their own path and all we can do is hang on and have faith that in the end things will work out. The saying “what is for you won’t pass you by” springs to mind this year and thankfully after a long, long wait with a few tears shed along the way I am relieved to say that I now have a letter in my possession with dates to work towards.

So this year, as mentioned, has been really challenging. I have worked with the Huffington Post and Parkinson’s UK as normal which has given me a sense of achievement raising awareness. In all honesty though I haven’t had the emotional strength to write about the more personal stuff. For the first time since my diagnosis nearly five years ago I can honestly say that I feared Parkinson’s Disease was actually going to break me.

Depression and anxiety have been colluding along with my physical symptoms to erode the essence of who I am. It has been challenging and frightening to live this life and if I’m honest it still is. The only way I can describe it is every morning I am wiped clean of any calm or happy feelings. The tank is literally empty and I have to try and climb out of the abyss every single day by feeding my brain levodopa until I’m out of the red. The exhaustion that goes with this is really hard to shake off. Somehow I’ve muddled through countless days trying really hard to hide from my family, in particular Dominic, the horrible sense of fear that has dogged me. Thankfully Dean who has been watching me like a hawk intervened when I crashed a few months ago and took me to see our doctor. Just sharing my anguish, fear of the future and confusion about how I was feeling was a massive weight lifted. Does it take away the reality of progression of Parkinson’s Disease: No! Does it take away the fear of surgery: No! Does it solve all of life’s problems that happen irrespective of my Parkinson’s: No! What it does though is to lay the massive weight that is Parkinson’s down for a little while and let those around me, professionally and personally so that I can get a breath before my journey continues.

So in a couple of weeks time I will look differently, sadly the hair’s got to go and I will have hardware on board and in truth I can’t at this point look beyond this aspect of the process. I know that I will have my first programming session sometime in December. My DBS team have warned me not to expect any miracles for about a year. I am prepared for ups and downs along the way. Following my final screening assessment a few weeks ago and receiving a report based upon the specialist’s finding I was very saddened to find out my Unified Parkinson’s disease rating scale was 119 out of 199. Leave this nasty to its own devices and I dread to think what I will be dealing with in 10 years time.

So, even though I wish I didn’t have to take this route I know it is my only real option to try for a bit of freedom. I have every reason to be optimistic and I’m sure once I’m back home that optimism will start to germinate and grow. So what will I do with myself in the intervening weeks? Dean and I have got to get Christmas sorted so we can literally just roll it out ready to go. We’ve got a bit of decorating to do and I’m filming for the BBC World Service next week for the programme I am doing with them relating to my DBS journey. This is a really positive move for me and makes me feel that something good can come out of my Parkinson’s disease.

A problem shared is a problem halved

Little post today. But wanted to highlight another off-shoot from one of PD’s anxiety non motor symptoms which is catasrophizing. It is really scary when it strikes. For me it manifests when minor physical things occur – a twinge quickly becomes something serious in my head and then the panic sets in. I have to be really tough with myself to bring the anxiety down and feel in control again. I find this behaviour accelerates when I am stressed or tired. I now recognise when these these thoughts intrude to take care of myself a bit better emotionally and physically. It also really helps to talk to someone about your fears as well. Don’t be afraid of expressing your thoughts. The more we talk the more we can cope with PD and the better those around can support us on this journey.

Thanks for reading and have a great day.