It has been a while, but with good reason. The start of 2024 was not in any way a good one. I cannot enter into details, it’s still too raw. Yet suffice to say it was an all too stark reminder of the fragility of life.

It also served as a reminder that living life to its fullest is so important. So many of us put things off for later, keeping clothes ‘for best’ occasions that hardly ever occur, saving the pretty china teaset, only to never use it at all. Not taking a trip because it’s not the right time. The issue is, there’s never a right time, or enough time, money, whatever. Some people always find a reason to not do things, when we should instead put effort into finding more reasons to get out there and just do it.

I have been struggling with many things recently. Christmas and New Year was quite stressful, (twin birthday, Christmas, 21^st birthday and New Year all in the space of 10 days) yet that paled into insignificance when faced with what followed. Stress is, as we all know, not great for those of us with Parkinson’s. Yet stress cannot be avoided entirely. We must push on, get through and all that.

Being positive isn’t easy. Recently I’ve found myself disappearing down a rabbit hole of bleakness and negativity. It’s easy to feel sorry for oneself, and don’t I have the best excuse? My left leg and hip had been hurting. Why I cannot tell. Is it Parkinson’s? Is it issues with my veins? Is it arthritis? Osteoporosis? Hip impingement? Bursitis? When I stand after sitting it’s very painful, yet seems to ease off. I’ve been doing heaps more walking, cycling, stretching to try to improve strength. I’ve not looked on Google… oh of course I have. It’s everything listed above. I’ve exercised too much / not enough / too hard. It needs rest, it needs exercise, it is incurable and I can do nothing.

I went to see a physio friend who recommended I see a doctor. I visited on Monday 29th January and the earliest appointment was the second week of March. I took it anyway.

I mean. With support like this is it any wonder I’m frustrated? “Perhaps you should rest it” said the receptionist. Yeah. Because as my mobility slowly deteriorates sitting around is just what I need, right? I’ve tried a mixture of gentle exercise (walking) and slowly trying easy yoga poses and squats. It helps sometimes, others not so much. I have tried ibuprofen, I’ve tried all kinds of stuff. I am just walking until it eases up and hoping for the best.

Yet ‘just walking’ isn’t always as easy as it used to be, but I realised instead of bemoaning this fact and finding alternatives, what I actually needed to do was, if course, walk. This hasn’t always been fun. But I know it’s vital if I’m to keep the ability to do it at all. I also know that possibly I’m fighting a losing battle, that one day I might only be able to shuffle a few steps. However, the very real and present danger comes from allowing that thought to cross my mind at all. I desperately wish that I didn’t remember the words of a woman at a networking group who, upon discovering my plight, cheerily told me about her uncle who was “so positive, just like you, but went downhill quickly in his 50s.” I turn 50 this year. I’ll have had this for 8 years. I read things can get bad at about 10 years plus.

Hoping for the best sounds kind of feeble, but perhaps it’s all I’ve got. Along with a determined attitude to continue to live life well. Part of that includes writing regularly. Once I thought that meant feeling down every week as I thought about how Parkinson’s affects me. Now I realise this is part of my own personal therapy. I write because the very process of putting these words out to the world helps motivate me too. Selfish? I don’t know. But if it helps keep this horrible thing at bay, it’s worth every moment.  

The awful start to 2024 reminded me that I’m lucky to ‘only’ have Parkinson’s. Fill every moment because life is special and growing old is a gift. Live your life well.

Until next time.