Progression

I was recently asked what the progression of parkinson’s was like. I had to think about it for some time. I replied truthfully, if perhaps not acurately. I replied with my truth, which may not be entirely satisfactory from a medical point of view, yet I feel is still valid. I told my friend that for me it was slow, which was good. That I denied it was there, which works for me. I try to not think too hard about what lies ahead, which is very true, and that I fought it. I do fight it, yet that’s also often easier said than done. however, it’s also true that nothing seems to boost your mobiliy like a solid week of daily physio and / or exercise. I am not someone that enjoys exercise. I am by nature indolent, and like most people past forty I too had begun to accept that geting older also meant I could no longer do things I could in my 20’s. Hello diagnosis. Nothing kicks you up the jacksy quite like realising if you don’t move, don’t exercise, don’t keep going, then maybe you really will stop. I am incredibly lucky in that exercise […]

Whispering Voices

Here I am on the rocks at Makara Beach near Wellington in New Zealand. We came out here for a day trip. Mr D’s Dad has a bach out there and he goes out most weeekends to sit on the deck and watch the world go by. It goes by pretty slowly. There’s not much there but ricks, wind swept grass, shingle and rocks. Lots of rocks. Mr D has been coming out here all hs life, the first time as a small babe in arms. He’s brought all his children out too, and yesterday I took my twins. It was a perfect Spring day and we carried our bags along the beach towards the little house. I find it hard to walk along the beach. I find that because i need to think about it it’s better for my legs and feet, but I still struggle on the uneven, moving surface. Once there we unpacked our bags and after lunch we decided to go for a walk along the beachfront. The tide was high but receding fast. Soon there would be rock pools to explore and small creatures to be discovered. I was hesitant along the rocks. I was beginning […]

Anniversary

I missed my anniversary this year. Not a fun anniversary, like a meeting, or wedding, no, no no. This was my Parkinson’s anniversary. It flew past on Facebook, in those memory things they put up. “and so begins my nine-tablet a day habit” I’d written. There were of course all the usual comments underneath, from well-meaning friends all making sympathetic noises. Things like “Goodness! That’s lot!” (Insert laughing emoji here) Or “You’ll be rattlling soon!” Hm. Five years later and it’s risen to thirteen. Fourteen when I need an extra hit on an evening. As I explained to my neurologist “I’m not dead yet, I still enjoy going out on an evening.” People still think I take a lot of tablets. Knowing what I do about Parkinson’s, whilst I hope it stays like this a while, I know different. That’s not a self-pitying self-fulfilling prophecy, it’s simply pragmatic honesty. It’s highly likely the number will rise. How do I feel about this? Well firstly as I sit at my table typing this, feeling my left hand not performing as well as my right (yet I persevere and force it to operate, knowing my meds will kick in soon) I am […]

Life is a Rollercoaster…

I was once told that my life appeared to be like some kind of film. Actually, I’ve been told many times my life appears to be some kind of major work of drama. Personally, I’m not convinced it would make the most riveting piece of action, however, it’s certainly never dull. Whilst others complain of the monotony of their lives, I often find myself longing for a quiet weekend when not much goes on. Such was the plan for this weekend just passed. Finally. Some nice weather and no major plans aside from a trip into the city on Saturday night for dinner to celebrate Mr D’s birthday. The sun was shining on Saturday morning, and as I drank a cup of coffee on the deck in the Spring air, Mr D sent me a message on my ‘phone to ask if I fancied a bike ride along our local cycle path. It was 0730. Good idea, I thought. We can have our ride, I’ll be back by ten thirty and the weekend can begin. It was an idyllic day. We were having a great time. Mindful of his heart and wary of him ‘overdoing it’ Mr D stayed close […]

Living with Parkinson’s: Not Selling Out, Not Giving In

I’ve been struggling with lots of things recently. My life kind of fell apart for a while last year (I know, we all had our problems) but I’m claiming extra issues. I realised just how bad it had been when I undertook a presentation at a networking group I was in. While researching the information I wanted to discuss, I realised something that shocked even me. I was looking at the various different stressors that occur to people in their life. I realised with not inconsiderable surprise that out of the ten most stressful events you can experience in your life, within twelve months I had encountered seven. I’d completed one of them twice, so you could count eight. For those that aren’t aware of these events, here’s the list. Death of a loved one Separation or divorce Getting married Starting a new job Workplace stressors Financial worries Moving to a new home Chronic illness or injury Retirement Transitioning to adulthood I didn’t retire, get married or transition to adulthood (some might say I’m still waiting on that one), but I moved house twice. With four children. In a volatile market. That was fun. I certainly have everything else on […]

Living With Parkinson’s – Stuff I Find Hard

Stuff I’ve found hard and things that help. Just like everyone, I go up and down in life and wellness. Good times come and go. Sometimes I’m doing well, sometimes I’m going through a rough time. I feel like I’m doing well at the moment, yet not that long ago I was feeling like I was approaching rock bottom at a fast pace (or maybe smashing through it to delve new lows).Everyone has suffering in this world, and I hope everyone can experience at least a bit of joy. Maybe my highs and lows fluctuate more wildly than what is “normal”, or the peaks and troughs are higher and deeper. I really don’t know, and can’t assume what others are dealing with. I do know that when you live with something like Parkinson’s, maintaining a reasonable level of functioning can be a difficult balancing act.Here’s a list of some things that I find challenging and stuff that has helped me deal with it:1. Challenge number one for me is to stop losing weight. Yes, I got the message about exercise, and maybe I overtrained a bit (I honestly don’t have a sense of this). I also maybe wasn’t eating enough […]

Anniversary

It has been an odd time here.  Five years ago to the day I was told I had an incurable neurological condition. Immediately followed by the cheery phrase “you will be limited.” From the so-called support person. Five years ago I was in a state of shock.  Stunned.  Disbelief. Denial. To create additional angst on the same date exactly, four years later, I left my husband of 17 years.  On paper it looks crazy. Why would a person with a one-way ticket to who-knows-where with their health leave financial stability, safety and a life of ease? Because dear reader,  I had learned in the very worst way that life is indeed too short. My husband, not a bad man, but not one that wanted to seize life by the horns and just get out there. Well, not while there’s so much good stuff to watch on the telly. But I want more. I’d had fun in my twenties, but spent most of it building my career. My children came along, the twins after a terrible late miscarriage I thought I would never recover from. It wasn’t hard to choose to be poor for a while and give up my well-paid […]

Dopamine Crashing

After saying last blog that I would do the opposite of whatever I thought I should do, I then totally forgot about that and just carried on with business as usual. I’m actually repeating circles within circles, learning and re-learning the same thing over and over again. In the week just been I’ve had three instances where I’ve have just totally crashed. Fallen off a cliff from good dopamine levels into absolutely none and sobbing uncontrollably because of it. Feeling like I can’t manage my life anymore. I’ve discovered some awkward combinations for me. For example, when I’m tired (sleeping bad), and worried about something (one of my kids has been sick and I was worried), and if I don’t get rid of my stress cortisol through exercise, and combine that with forgetting to eat, followed by stuffing my face with sugar, and taking an extra rapid Madopar or two to deal with hard times…then the result can be the floods of tears.    It’s easy to relax whilst building sandcastles on the beach. The really awesome thing that has resulted out of this is that it is serving as a reminder that if I don’t look after myself, I […]

Nothing Special

The last few weeks have been rather tough. In fact, rather tough doesn’t really even begin to cut it. Yet on we go. The world continues to turn for us, though sometimes it’s hard to understand how everyone else is out there living their lives like nothing has happened. Death has a strange way of making you look hard at your existing life. It left me wondering many things.  My life, how long I may expect and how much good quality of it I can reasonably expect. You’ll be surprised to discover I don’t really like thinking about this. I have come to realise that Parkinson’s progresses in a strange way. One day you’re fine, the next you find yourself really struggling to bend down to perhaps dry yourself after a shower, or to pick up more of that endless stuff the children drop onto the floor. I caught myself thinking “oh that was difficult” then realising with horror that this was probably down to my condition and not age. Some of my friends have slowed down / allowed themselves to relax a bit about exercise. In my ‘other’ life I perform stand-up comedy, (yes, really) and often hear lots […]

Embracing Imperfection

I’ve had a radical thought, that I’m going to apply to my life and see what happens. I’m doing to do the opposite of whatever it is I think I should do. This radical idea pinged into my brain a couple of hours ago, as a result of a day spent musing about stress buckets. The stress bucket model is a way to visualise what is causing stress in your life and to be aware of the things you can that work to release the pressure. Imagine you’ve got a bucket that represents your capacity to handle the stress in your life. Rain clouds above the bucket fill it with water (stress), and as the bucket fills up your ability to handle the jandal diminishes. An overflowing bucket for me is loud and messy crying face. The things you do to reduce your stress (rest, eat well, exercise, have a laugh, etc) cause holes to appear in the bottom of your stress bucket, thus allowing it to empty and avert meltdowns. I drew this beautiful picture today of my stress bucket: Beautiful drawing I know. I know – I’m terrible at drawing. And there I go again. Holding myself to […]