Do I want to know or do I not?

It sometimes seems to me when you have a ‘condition’ – I refuse to think of myself as ‘diseased’ – that reference to that condition crops up everywhere. Of course with social media being what it is and clever little algorithms (or whatever) stalk you and this affects what comes into your feed. While I am reasonably OK with the use of a computer and I have my blog and podcasts, I am not schooled enough in the workings of said media to know how tracking and targetting me works!

The word is obviously out with the Chat Bots chatting to other Bots and real people all know that I am drawn to references regarding Parkinson’s. Whether it be good news, bad news or something in between, it pops up.

Let me just say, before I go much further that Michael J Fox is a hero to me. He has had so many years of battling this condition and he still finds the energy – which must cost him – to go out in public and talk about his journey and use his experience to help inform us all in what living with Parkinson’s long term can look like. You know, I almost said, “….still finds the energy – which must cost him – to go out in public and represent those of us with Parkinson’s” Why did I ‘almost’ write that and then change it? The answer is simple. I do not see Michael as someone who would represent themselves as speaking for other people with Parkinson’s. Michael does not strike me as being egotistical enough to feel he could represent us all, or to make any kind of ‘one size fits all’ statement about Parkinson’s. We can all have those moments of identifying similar experiences with fellow Parkinson’s folk (I will not say victim) but our lived experience is unique to us and no two of us are the same. Similarities will exist, but it is a condition that is almost as varied as mankind itself.

Michael bravely puts himself out there in the world. He does not seem to shy away from cameras or interviews, despite his obvious challenges to speak and to be present and to share his experiences. I don’t know if I could do that.

I have thought about the option of adding video to my podcasts, but first of all I tried doing a brief Video podcast and I didn’t know where to look, I looked stiff and didn’t know quite where to look. So, I think that’s a hard pass on that one. Just my voice is what I will continue to do. Audio is so much easier and I feel more relaxed because of my radio background.

By now you might be wondering when I will get to the point of “Do I want to know or do I not?” and I can’t say I blame you. I can be a bit tangential at times, and I am aware of that. But, after all, this blog is about me and my life with Parkinson’s and this is how I rock. I start with a topic and it leads me in many directions while I try to bring all these thoughts into some cohesive structure. I promise we are nearly there!

So, what is it all about? The “Do I want to know or what?” is this.

Among the various things that come up on the computer, there will usually be at least a couple a day – probably more – on people in various stages of progression. The segment may be about a new treatment – which it often is – and scientific studies to try to find something to cure this accursed thing that has snuck into our lives. For me it is like a sleeping giant, it seems to lie dormant for a time and I can feel reasonably ‘normal’ – no such thing – in comparing myself to other non PD people and don’t think I am doing so badly. I see people online with PD and some of them seem so together, going about their lives. Some have huge physical programmes set out for them which exhaust me just thinking about them.

I know exercise is important for Parkinson’s, but I am very much someone who has to enjoy whatever exercise they are doing, or it won’t get done! Add into the mix that I have had major back surgery, I have to be cautious about what sort of exercises I can safely do. Exercises that involve lateral pulldowns or anything pushing or pulling weights is not going to feel very safe for me to do.

So, I look at the information that is pertinent to my current situation. Things like changes and advances in medications that can help to manage symptoms are of interest. ‘Before and After’ videos of people using medicinal marijuana which appears to help with issues with gait, seem promising. But, I am not at that stage yet and I understand that this is expensive and there are varying views from GP’s as to whether they feel comfortable prescribing marijuana, even if it is in a medicinal form.

Then there are clips showing someone who is going to have DBS surgery aka Deep Brain Stimulation. This is usually in the latter stages and appears to help with movement and dyskinesia. While the before and after videos look very promising, it is still a look into what the future might look like and makes me feel uneasy. I have always said that I ‘live for the moment but plan for the future’ and I stand by that. I will perhaps have a quick glance at a DBS video and see how it can help people in need of it. However, for my own journey, I don’t like to look too far into the future or to think that there is inevitability and that everyone needs DBS at some stage. It was described at a conference I attended in the early stages and it sounded pretty scary and full on. At the time, I said it was something I wouldn’t do, but perhaps now having lived for nearly six years with this condition, I may be worth considering at some point.

Q So, Do I want to know?

A Yes, but only things that are relevant to here and now.

• Crystal ball gazing will not serve me.
• Looking too far into the future will not serve me.
• Making assumptions of what will happen to my body, will not serve me.
• Staying abreast of current thinking about how to best help myself will serve me well.
• Noting any changes in my presentation and ensuring that I have the support and medications that I need will serve me well.
• Living in the moment and enjoying life will serve me will.
• Doing the ‘bucket list’ stuff – not leaving it or another day – will serve me well.
• Doing exercises that I enjoy and doing them consistently will serve me well.
• Being present for those I love and who love me, will serve me well.

So, the answer to ‘Do I want to know or Do I not?” The answer is, that I want to know what I need to know about how Parkinson’s is affecting me and what assistance medically, physically or psychologically is available for my current presentation.

When I start to progress and my needs are likely to increase, I will look at other options or supports that I feel I need when the time comes.

Until then, I will live each day as it comes and enjoy spending time doing things that I enjoy, with people I love as much as I can.