Hello, I am still here; been slack of late in regard to writing!
Life is just hectic and crazy; “… avoid or reduce stress and take time out for me they say …” chance would be a fine thing! As most parents will appreciate especially working mum’s my needs come last and there is very little time left; just enough to shower occasionally (if I am lucky haha)!!
So, what’s new with me?
Well I discovered to trust my own judgment and instincts more when it comes to my treatment. As my previous post mentions my sleep has been terrible with long periods of insomnia. I believed this was made worse since I started taking prolonged (24hr) release Ropinerole (Requip XL) but this wasn’t acknowledged when I mentioned it to my PD nurse; who instead suggested taking in a morning appose to the evening as I had been taking it for a couple of months. I soon realised taking it of an evening had ‘masked’ the side effects as I had put the ill feeling before bed down to just being wiped out and hadn’t appreciated how much that had become my ‘normal’ until I decided to stop taking it to see how I felt (taking it in the morning made me feel awful). Well after just 2 days of coming off it; the brain fog eased, and I slept a lot better than I had in weeks!
So now I am back to just taking Madopar which I struggle to go 3hrs between doses (should be at least 4hrs) before the wearing off begins and if not timed right I switch ‘off’; meaning I struggle to move my right-hand side, I move in ultra-slow motion, go rigid, unbalanced/stumble and my brain follows suit! … yes, apparently you can suffer some of the same physical symptoms mentally too! So, I have slowness of the mind; my thoughts take time to process, it takes much more concentration and harder for me to retain thoughts …. this can be very frustrating! I have always been a quick thinker, off the cuff, quick witted and never needed lists/diaries/reminders; yet now I have them all and still forget things …. You know that feeling after an interview when you think “I should have said this and should have said that…or responded in a different way” well this is me after nearly every conversation or interaction because my mind has to play catch up and takes a lot longer to process the information. So, apologies if I come across uninterested or offer a half-hearted response …. it’s really not you, it’s me! I will get back to you next week once my brain decides to catch up!
Every single parky warrior has their own version of the condition; their own set of symptoms; effects of medication and own set of circumstances which make us all unique (well always knew I was special haha) This however makes it difficult to manage as there are vast amounts of varying medication and therapies to help manage (suppress symptoms as they do not slow any progression) which comes with its own challenges to find the right medication and/or combination to suit each person.
“…….…We don’t yet know exactly why people get Parkinson’s, but researchers think it’s a combination of genetic and environmental factors. The term ‘environment’ refers to the world around you and the pathogens (viruses and bacteria), toxic chemicals and heavy metals that occupy it. In particular, there has been a great deal of speculation about the link between the use of herbicides and pesticides and the development of Parkinson’s…………………..The level of dopamine then continues to fall slowly over many years, causing symptoms to further develop and new symptoms to appear…….”
I have heard anecdotal comments of “a good 5 years” post diagnosis before things really start to gown downhill but whether this is reality? I guess time will tell. I try not to think too far into the future or in too much detail as I am not ashamed to admit it does daunt me if I think about it too much:
Will I get to be the “hands on” grandparent I dream of being? Helping with childcare, play fighting and taking them to the park? – probably not.
Will I get to retire ‘comfortably’ / fulfil the life goals I still want to see/do/achieve? – Possibly?
BUT I will be there (hopefully) for these points in my lifetime (providing my boys decide to make me a nanny one-day hahaha) to see, hear and be part of it in whatever capacity that may be.
Each of us parky or non-parky don’t know what the future holds, and our futures are all uncertain yet for us ‘parkies’ our futures have a ‘CERTAIN UNCERTAINTY’ in that we don’t know how or when our symptoms will progress; just that they will.
For now, I am enjoying the challenge and new-found strength and determination to make positive change in my life and outlook. Yes the ‘pesky p’ is a pain, gets in the way and hinders me but at this moment in time the ‘pesky p’ fits in and actually compliments me; it drives me; it makes me stronger; it makes me give less of a f*** about the things in life that just really don’t matter.
Will I always feel this way? Probably not; but I can only deal with right now and that’s all that matters!
“Live life for the moment; because everything else is uncertain.”