So incredibly happy and so incredibly sad, and it is ok.

I have been trying to find the words that sum up how I feel, and this just came to me. It is honestly how I feel as I write this, and I believe it is OK and ultimately a very positive state of mind.

I see the encroaching of PSP, I feel it, and as it speeds up, I massively slow down to the point where at times of the day crossing the room feels like a hike. Thankfully, it is my physical side that is slowing down, as I truly head towards the inevitability of needing to rely on a wheelchair (truth is I am overdue on that one) and worsening problems with my eyes- no doubt far worse lies ahead. My cognition and more important my emotional state is holding up very well.

I feel a huge mix of emotions at levels perhaps I have never or at least seldom felt.

Yes, I am, in all honesty, incredibly sad, Not just for me but for my family and loved ones who are with me on this trip.

But I am so, so happy. I have and continue to have a life full of inspiring and special moments, humour (some of it dark but nonetheless funny), meaning, and am surrounded by the best. As I find it harder to walk and move, that hasn’t- or isn’t- changing. I am not paralysed by fear, which I would have thought would be the case, but I am in a really good place.

As I say often, this is not how I feel 100% of the time- I feel the frustrations you can probably imagine, and I show my annoyance to those I love, but things are good.

This is my blog and I can only talk about me and in this strange and weird mix of incredible happiness and sadness simultaneously, I say clearly that the first trumps the second.

Why am I writing this? This bit is not for me….

Whether I had intended it or not, I (once a very private person) have been very public about my journey, and for some strange reason a fair amount of people are tuning in (I was gobsmacked this morning when I checked and saw that my site has had over 75,000 views by over 42,000 individual visitors from 105 countries). Trust me when I say that my family and friends don’t extend that far. To the young generation who see their role models followed by tens of millions it is of course tiny but each person is important to me and let’s face it – it is a pretty niche topic. It fills me with responsibility.. So, for those who read this who don’t know me- there is an important message from me…

I have read other sites where things start getting worse and at some point the person ‘disappears’ from view and it causes sadness and stress.

I am a long way from this truly! But if and when it comes (and as I can’t predict it, I feel I have to say it now)…don’t want my journey to be seen in any way as a sad story or tragic tale of a 50-year-old who is eaten by PSP. I want you to know I am truly grateful for the life I have and have been given and am heading down the rest of the journey with PSP with that in mind. I hope I am writing for years to come, but should I be unable at any stage, I want to leave behind me a message that illness doesn’t have to define you, no matter how hard. It impacts you and the ones you love, it is devastating no doubt, and I think you have to face it head-on- but fight you should.

One day they will find ways to treat PSP, it is just a matter of time, but something else will replace it. I believe, G-d has made a world where there is death, tragedy, and hard times. There, I suppose, must be, to also create free will and harden us for life to enjoy the competing world of love, happiness, and blessing. I don’t ask why good things happen to bad people and vice versa, and I truly wish the friends I have who have struggles far worse than mine, didn’t, but these things are way above my pay grade.

For now, I accept that life is full of happiness and sadness, and I choose, in the overall equation of life, to lean heavily on the positive scale, and hope it continues for a long time. So if you happen to see me struggling to walk or in a wheelchair – please no pity – I am really happy and in so many ways healthy mentally (of course I’d prefer it without PSP!!!!).

My struggles are individual- on the one hand, I pray people don’t receive the diagnosis I have, but I am also aware that we can all dig deep with whatever challenges lie ahead.