I think most of you know by now I managed to get home for Christmas and had some great R&R with Jen & Mick to help speed up my toothless bogan recovery! I also had long overdue catchups with some of my best friends from school. It was just what I needed, followed by 5 days on the beach with Jo in Broadbeach. My first actual holiday I think since the last Whitsunday's trip way back when.... give or take a couple of long weekends away.

My progress has been overall really positive. My fevers have ended, my energy has improved significantly, and my brain is coming back to life ... more days than not. I've been able to get some work done again and that has been a relief. It feels good to be able to get back to helping my clients and I've started to have some social catchups. I did learn the hard way though that I can only handle 2 to 3 hours at a time or I crash for a couple days.

On the downside my SPS without infection is worse. Yes, you read that right.

This was a potential outcome of the infection clearing. The gurus had said the infection could have been supressing or amplyfying the disease and/or it implicating the side effects of my treatment for better or worse..... me being me I'd gone with the.... 'my side effects on treatment will be less and my disease will be better'! Turns out I was partially wrong. There's pro's and cons. Seems clonozapam is ok for me and not causing toxicty but seems my SPS disease is worse. You win some, you lose some!

At the moment I'm managing this with 4 hours of manual support - twice weekly physio and twice weekly rehab and the occassional break through clonozapam on top of my daily morning and night doses. I’m also running my own rehab morning and night and sometimes during the day, every day of the week.

When I say worse.... it means I'm getting more spasms and rigidity, but not at extreme levels like before, and I can usually break through them and rebound quicker. I get days where I'm super weak and parts of my body tremor and some days I still fade quickly in rehab and can’t follow instructions but I’m better than I was. Additionally, I've somehow lost my sense of where my limbs are from time to time when doing rehab (no doubt daily living activities too without someone following me around to tell me!). AND I've adopted the wonderful duck feet (opposite to pigeon toe) approach to walking and standing!! Seems this is a subconscious functional strategy for keeping my balance. So, you guys are all on duty now to point out if I'm leaning and not straight or if my feet are in duck mode haha

Thankfully Yolane picked up on the beginnings of this just before Xmas during rehab when she kept asking me to move my head to the left to be in alignment and when my arms were in the air to bring my left one over to the left to be straight.... and I'm like they are straight......And she'd reposition them manually and I felt like I was tilting way left when she did that.

It was over Xmas when we ran a Zoom rehab sessions I actually saw it in the camera! haha
I looked hilarious. Basically a mild leaning Tower Of Pisa with my arms in the air haha.

Then a few weeks ago she started asking me to bring my feet straight under my hips in standing and I was like, 'what are you on about', and she crouched down and adjusted them.... and it was then I noticed what she meant. What the heck were my feet doing out there on 45 degree angles and wide apart!! My right one worse!

We kept an eye on it for a few sessions and then escalated it to my physio squad who all agreed we have some neurological issues going on but they feel confident we can work on it. I am to discuss it with my SPS crew tomorrow as this is part of the SPS disease (brain implications) and I'll be bringing my neurological physio into the squad more often then once every month or so. She's going to be ramping up to get me ship shaped before the ship sails!

It was a bit of an eye opener and I'm glad we caught it quickly as most SPS patients go onto having lots of falls and become wheelchair bound and so far my specialists have been impressed that my hard work over the last 8 or so years has kept me from that level of degeneration. So I'm motivated to work even harder now.

Last month I had my sleep study which we needed to proactively do to check any ramifications from the neck spasm spinal cord trauma. The section that had been impinged for 5 weeks was the section that can lead to respiratory issues (because I don't already have enough of them!).

The bad news - I had the most horrific rigidity episode I can remember on record that went most of the night and they only got a few hours of data. It was agonising and distressing....just as much for them as for me. They said even in the few moments I was sleeping I was grunting in pain. I was then banned from driving home that day and got myself to Hans and Carls looking like I was 107 (just after bragging the day before that I was the best I've been in a year and I can't wait for them to see it!).

The good news - After a few hours sleep at Hans and Carl's, my Brisbane physio crew fitted me, I then returned for a shitload more sleep and my body rebounded within TWO days. That's crazy. Usually an episode like that would be weeks. Believe it or not, it was something to celebrate.

The extra good news - Lucy my CF doctor said she won't put me through it again as she had just enough data.... and the silver lining to the neck incident and new fake discs in spine is my prior hypopnea condition has resolved itself!! haha

Who would have thought... spinal injury and neurosurgery and the anticipated respiratory knock on effect was POSITIVE. She said to take the very unusual win! We concluded it was a reasonable result not requiring further study as anecdotally I had not needed my mouth guard since. Usually I can't sleep without it. Since the neck surgery I had no extra value wearing it!!

Today I saw the neurogenic bladder guru and we think we've made some marginal improvement there. We've got to continue on my daily Tens machine, some new exercises and a treatment to see if we can resolve the nocturnal issues. We will also do another bladder diary for hard facts but we think I'm improving. That was a win too!

Tomorrow I am off to see the SPS team to basically start again! They wanted to see me a couple months post tooth incident to see 'who is Loren' without the raging infection that was likely there 12 months or so! So we will discuss the many improvements, but also the random brain issues implicating my sense of limb location and spacial awareness and duck feet and increase in spasms and rigidity and tremors. They will also write me up a plan (well Jacinta my allied health support helper will request them to she said!) for my admission to hospital also tomorrow.

I'm going straight from the SPS guys to the ward to prepare for my long awaited procedure to check out my fundoplication (stomach surgery which is about 15yrs old and you normally only get 10 years so I've done well) to see if it could be the cause of my night time scary neck/throat/voicebox spasms (i.e. due to the lid on stomach being broken again and reflux being the trigger). We will also check out my squashed oesophagus and if feasible my bent and floppy trachea. And whilst there we will do an extremely overdue colonoscopy and endoscopy. For someone who likes to kill a lot of birds at once this feels great haha.

So we are getting a plan for a rigidity attack if the bed sets me off and asking what patients like me do to help during hospital stays (e.g. at the sleep study they did kindly get me an airpressurised bed in that is softer than a normal bed, but that DID NOT help! We had a laugh today preparing for tomorrow that the randomness of the air changing was probably in itself causing a SPS startle response! So whilst softer, actually worse for me. We will also get written up a plan for my post op so we don't go through the trauma of greenslopes again if a needle has set me off. This is because I am having a full anesthetic, not a twighlight and needles are a major trigger for me.

So in short, I go in tomorrow to see SPS guys, then I stay in that night to prep for the procedure, then do the procedure Wednesday, and they will keep me in Wednesday night to make sure I'm ok. In theory I get let out on Thursday! I'm not really sure what we hope for with this one. Basically nothing new is probably what we are gunning for. The rest we can sort out! I'm also eager to try a new hospital and one where my two key specialists are based. Hopefully the end of hospital nightmares begins tomorrow!

I'll use this post to put an update in the comments on Wednesday on how I got on with the procedure. That will help me to streamline the communications.

So stay tuned that way.

Oh and other quick tid bits who want to keep up with the nexflix style drama of my NDIS squad:
- Tom my cleaner was fired by the organisation (not me, I was performance managing him but had not complained like others haha). I now have Rebecca who has made me realise what's meant to happen!
- I've moved on from my support team who gave me drivers because, well, I got to the point it was safer me driving with only half a brain. My new provider who brought me up on Sunday to Brisbane was a breath of fresh air.
- I lost Iron Chef just before Christmas and I cried (it was the third bit of bad news that day but in fairness I may have any way, she was that good haha). I knew the day would come. My hardest break up in a while haha
- I now have Chef David who is 'interesting' and I'm trying to break him.... with his intense anxiety and stress energy and no doubt autism! We are getting there and his food is fine.
- I'm still toothless and am learning to embrace it and my occassional speech impediment haha
- I asked my immunologist in my annual review just before Xmas if he thought my tooth infection could have been causing my nausea and in particular on 1 standard alcholic drink. He said, 'there is only one way to find out, have a merry christmas, but not toooo merry' haha. I'm officially able to have 3 to 4 standard drinks and I'm so happy. That will do me. I don't need more.

One last thing - sorry to those I didn't reply to on my last post. I missed a few. I'll reply and I'll add some photos of the last chapter of life over coming days whilst laying around in hospital!