From brother Pete

It had been close to an entire month since I last saw Mike. Thanks to Mon for the many updates on this website I have been able to keep up to date with Mikes progress. I spent 4 days with Mike, Mon and Ash over the last weekend.

Mike was sick last week, and took it a long time to isolate what his illness was. We may never know what it is but Mike has his theories.

Possibility No.1 – It may have been a side-effect of the medication that he started on at the beginning of last week. Mike has started getting lots of spasms particularly at night, and in his legs. This is normal for Quadriplegia, but may be more evident in Mike as he is taking the strong tact of accepting the spasms and dealing with them the best that he can. One way to reduce the spasms is to subdue the neural messages that cause the spasms. Those neural messages are closely related to the ones that Mike may make use of again to help him master ‘Ballet’. Valium is one such medication that helps with subduing spasms. Mike had been taking it for 4 nights last week to help him sleep, as the spasms were waking him and often required the night staff to ‘realign’ him in bed. Mike was sleeping better with the low dosage of Valium. However, no drug seems to come without its side-effect. Logically Mike concluded on Friday that his poor state; nausea, suppressed appetite and light headedness may have been a result of the medication he was having on the night before. Mike had also been on a spout of ibuprofen to help with the pains in his lower back. A common side-effect being nausea.

Possibility No.2 – It may have been a common stomach bug. Mike is beginning to read the Morse Code that his new body sends to him. It is difficult for him to explain how or what he feels and doesn’t feel. We could not begin to imagine what it must be like. As mike quotes “what I am experiencing is not exactly normal”. The symptoms Mike had last week were similar to those of a stomach bug.

Friday’s meeting with a visiting doctor yielded no obvious reason to bound Mike to Royal Talbot. In fact, Mike had convinced the doctor that a rest from the Valium and Ibuprofen may alleviate the illness that he was feeling. Feeling not so well, Mike endured a peak hour transfer with his lack-of-suspension chair strapped to the chassis of the Maxi Taxi. It is hard to appreciate the frustrations that come with quadriplegia. Mike’s vision in the taxi extends to just two car lengths in front, as the height of his chair inside the cab puts his eye-line above the front windshield. Let us say that mike arrived home feeling more sick than when he left Talbot.

Friday evening Mike had arrived home with Ash and I in the taxi and Mon followed calling by a well known grease shop for lining Mike’s stomach (not something he would normally eat, or that Mon would prescribe!). But maybe it was the answer, or just being home at the ‘blue house’. Mike arose on Saturday morning in the Blue House feeling a little better. Whether it was the grease fix of Friday evening, the night off Valium and Ibuprofen, a night in the ‘blue house’ or just his body getting better; no-one will know. Throughout Saturday his nausea improved.

To see mike in the environment of the blue house was so comforting for me. Mike spent a lot of time this weekend at home watching his lovely daughter Ash and her close play-mates Leyla, Fidell and Chloe roam the back-yard. What Ash contributes to Mikes rehabilitation cannot be measured; she truly gives him the greatest motivation every day.

Finally, on this trip home to the ‘blue house’, Mike finally got to use his new Bar-B-Q plates that he purchased before his accident. He loves them! Should you think of visiting Mike at the blue house, I am sure that Mike would love for you to fire up the Bar-B and share a meal with him.

Mike educated me on the weather arrangements in Melbourne at this time of the year. Crap weather during the week to encourage you to work and beautiful days on the weekend. Mike certainly did make the most of the Melbourne Spring sunshine this weekend. The grey skies did come in on Monday as Mike returned to Talbot… As he looked forward to the next return home to the blue house; a 5-day extended visit.

Mike it was great to see you come through yet another set-back with your illness last week. It was great to spend such a lovely time together for the weekend. Keep those spirits high, and the fight strong… because at the end of this you will get your rainbow!

Thankfully Mike was well enough (just) to make it home to Blue House for the weekend. Apparently it has medicinal properties as we returned him on Monday well and refreshed for hopefully a full week of therapy – lots of early starts this week and an early finish on Friday – what a great week!

Due to the hotter weather, I was forced to find a thinner single doona and cooler doona cover – apparently the one I had was hot??? The only one I could find was one I bought years ago for a friends little boy when they came to visit – it was a Bob the Builder one. At first Mike was not impressed but by Sunday afternoon he had decided that Bob was on to something …. “can we fix it – yes we can!”.

A massive thankyou to our pre-injury physio / magician – Rob Capaldi. As many of you know Mike has had a niggling sore lower back for a month or so that just wasn’t improving. An hour of Rob’s time and he is much looser and feeling fantastic – thanks Rob!

The long and short of it – Mike is better and back on deck. He started some woodwork yesterday – I am demanding a chopping board before he leaves here! Anyway, he will be doing that with Ash over the next week or so. And the lovely Erin has set up some cooking time in the next couple of weeks. One of the other guys in here has a 13 month old girl so apparently there is going to be cooking with the boys and their little girls – I believe that cupcakes and muffins are on the agenda!

 

I think the saying went like this:
“Yesterday is history, tomorrow is unknown and today is a gift – that is why they call it the present”.
(A quote taken from the blog of Susan Davies Leyden).

I have meant to do a post since we found out that Susan Davies (Leyden) lost her battle with cancer late last week but I didn’t really know where to start. I think I still don’t. Sus sent me the most heartfelt letter I think I have ever received after she learnt of Mike’s accident. What an incredibly selfless act when she was so unwell herself. Until 2 weeks ago when her health declined significantly she was a regular caller to touch base and see how Mike, Ash and I were going. When she asked, you knew she would really listen to your answer. She was incredibly perceptive and knew when I was fibbing!

Andrew mentioned today that Susan longed for a day without pain – I can’t imagine how she thought of others so often when in so much pain herself. The lovely words spoken about her by friends and family today are testament to the selflessness she constantly displayed and her guenuine interest in those around her. Mike was incredibly upset that he was not well enough to attend todays service – he had in no uncertain terms advised those at Talbot that he was to be up and ready (in respectable clothes,  not tracksuit) in time to get there and had moved his program around so that he could pay tribute to someone who had shown him so much kindness even in her own dark hours.

Our thoughts and prayers are with Andrew and Mackenzie through this very difficult time. We will never forget Susan’s thoughtfulness and the many kindnesses she showed us both (and Ashley), or that huge, all encompassing smile. Her offers of help were always thoughtful and practical. In particular I remember the receipt of some hairclips for Ashley that she and Mackenzie had bought and posted – another wonderful and thoughtful gesture that will be remembered by myself and one little girl for a very, very long time. I remember wondering at the time where she had found the time or energy to think of this gesture, let alone actually do it!

The service today reminded me to hold those close to you very, very dear and enjoy each and every minute you spend with them. Mike may have many challenges ahead but he will get to see his little girl grow up which is really what every parent wants. He might not get to be the dad that he had planned but he will be a dad none-the-less.

Susan’s diary noted something that was said at my sisters funeral: “No one truly dies while at least one person remembers”. Susan is here with us for a long, long time to come.

Here’s the video of Mike’s little steps in the hydro pool that Mon was talking about in the previous post.

Those of you who saw Bov’s legs in lycra in his past re-incarnation will not be surprised by this post but it is too exciting to not share – what a huge week at Talbot – 2-3 hours of therapy each day so far plus massage and a FES bike session … only an hour tomorrow but he will need a rest before another busy weekend at the blue house!

All the hard work by the amazing Harri and his new physio Janet is paying off – his arms are much looser than they were (he can almost rotate his forearms outwards – there will be a technical term for this like flexion or something but anyway you get what I mean!) and today he can move his fingers a bit – too exciting! Unfortunately he can scrunch them in a bit (as though to make a fist) but he can’t then unscrunch them ….  but maybe that is for next week!

But those legs …. never say never …

Yesterday on the FES bike he managed to pedal it himself – yep, he overrode the stims and pedalled it. The bike kept the pedal stroke smoother than he could control it himself but still! He managed this for about 10 mins and even got up to 5 watts! I don’t think he could decide whether to laugh or cry – the last time he was riding he was pushing closer to 250 watts but as the song says – “the only way is up”. He also got his heart-rate up above 100 and he even had a bead of sweat on his forehead!

And today in hydro he took his first baby steps – so exciting .. I got some of it on video on my phone (it was all I had with me!) so when I work out how to download it and get it to Sparky (hopefully before Christmas knowing my incompetence) you can all have a look and cheer him on too! It was not a very manly walk – he was really relying on tone (or spasticity) in his muscles and was up on his tip-toes, he couldn’t push his heals down. Being the ever supportive wife that I am, after cheering for a bit I told him I would be in late tomorrow so I could go pick him up a pair of ballet slippers. Apparently I am a bitch … I prefer to think of it as motivation!

Looking forward to another fun and busy weekend in the blue house – Mike thinks he might want a rest but there is too much to fit in! I promise his post is coming – he did get some computer time today and hopefully a bit more tomorrow. A massive thankyou to the wonderful Jacquie who came to drop some stuff off today but ended up staying to clean up (probably b/c she couldn’t actually get inside!) – what an angel, I will get some sleep tonight – yippppeeeee, yay! And no, I am not sharing her!