Happy New Year! This is going to be a great year for me and I can't wait to bring you up to date with what has been happening out here at the Royal Rehabilitation Centre Sydney at North Ryde and I can't wait for Lisa (my absolutely fabulous Occupational Therapist or OT) and the SAEBO Flex to get the recognition that they so richly deserve!!
Firstly, the whole of the rehabilitation centre here at the Royal is..........GONE!!! The kitchens (which were a source of much amusement to the patients, I can tell you!) which were old and horrible (we are glad those have gone), the wards, the reading rooms, the dining rooms, the 'private rooms' and even the hydrotherapy pool, the speech therapy rooms, the neuropsychology rooms and heaps of others are all GONE!!! There are a lot of rooms that I have forgotten what they were used for, but it is so strange that almost all of gardens and the balconies and even the back verandahs - are gone as well!!
It seemed as if it was going to be quite some time before it got to this stage, and I have to say, I got a huge surprise when I went out there today and saw what has been done. The only buildings left for the moment are the Gym and some of the Physio/OT rooms and on the left as you drive through the centre, there is what was, the Admissions and Reception Centre building that I go to now, which is called the 'outpatients' block.
The demolition team who have had to deal with the dreaded 'Asbestos' and the workers having to don huge outfits reminiscent of the Moon Walk (not Michael Jackson's the actual Moon!!!) but they have done a sterling job and it will not take too long until the new Royal Rehabilitation Centre Sydney, emerges from the mists. Everything that could be recycled has been such as bricks, concrete, steel, copper, windows, pipes, cables etc and now there are a whole lot of tractors, earthmoving equipment and workers busy beeing around the site getting it ready for the next stage!
It is hard to get your head around the fact that for 50-60 years the buildings which have seen so much suffering, tears, heartbreak and despair on the one hand and so much hope, rehabilitation and pride on the other, are, no more.
I will try to keep you all up to date with what is happening out there over the next few weeks, months and beyond, but of course, it will depend on how much time I have over the next couple of weeks as to how much I can write in my 'spare' time, that I haven't got a lot of!
Since Christmas, I have been to Rehab three times and before Christmas I was going to Rehab at least once if not twice a week to tweak the SAEBO and get it working properly and once they did that.......it has been fabulous!!! Everyone is extremely happy with the whole thing a couple of other 'clients' or patients have are being fitted for a SAEBO as well!
It is amazing that your mind truly WANTS TO WORK and I can see my fingers twitching and my thumb going up and down as Lisa asks me to do something! It is AWESOME! As you know, the human person only used 10% of the brain, imagine if it used 12% of 15% what we could achieve!
My shoulder has caused me grief lately and Lisa called my condition 'subluxion' or a dropped shoulder and that will be the next (I don't like to call it a problem, because I am so grateful that I have got any movement at all!!!) area where I would like to aim for rehabilitation, at least to a degree. Lisa told me about a "Givmohr" shoulder brace and I am keen to meet another patient of Lisa's who has one of these seemingly fantastic slings in coming weeks. I wear a splint every day, all day and a different one for night and it is heavy to say the least, I don't have much muscle any longer, with is why my shoulder has started (after almost 5 years), to drop. I hope by I will be able to carry my shoulder in a different or less unweildly fashion after looking at some of the slings that this patient or my own daughter have come up with, for the future.
Since I have started to used the SAEBO Flex, things have really moved along nicely and my hand is a little bit less tight and a bit more flexible and I am pleased with the overall routine. Lisa has gotten me to work harder and harder, as she says, "If you don't use it, your gonna lose it", so, I sit in my living room and work away as if I am going to space or being a contestant in the olympics! Some of the exercises are things like, lean on the table and bend my hand flat out and do it for about 5 mins, then sitting down at the table and squeeze my arm close to my side in and out several times, pull out my thumb several times a minute, then move my thumb in up and out several times a minute and so on as you can see, when I say sometimes I just want to give up because it all seems to hard, boring and pointless!!
Then I remember how some of the people I have known either at the rehab centre or from reading their blogs - and I know that I can't give up, because sometimes a person that you happen to get to know through their blog, will have such a huge impact one you life, that you end up doing it for yourself and them.
One of those people was a young woman named Christina Symanski who at 24 in 2005, dived into a swimming pool at night, a pool that was only half filled and since then, she has been living with paralysis (C4/C5 complete injury) needing constant care, around the clock. She has been writing a blog since 2009 an unfortunately she has passed away - by choice.
["Symanski is a tough blend of realism and hope, bitterness and determination to live. She lives for the hope that, someday — before her muscles are atrophied — research will discover how to repair torn spinal cords. She is angry because of the religious objections to the stem cell research that might allow her to leave her chair."]
It is a sad state of affairs that this young America woman thought that her life was so unbearable (her words), that she had no choice but to refuse all food and hydration until she died. It made her furious that in a country that is as wealthy as the USA can't find a cure for paraplegia!!!!
{{According to an April 2009 survey conducted by the Christopher & Dana Reeve Foundation, there are 5.6 million Americans currently living with some form of paralysis. Paralysis is caused by various types of disease and injury, such as; Amyotrophic Lateral Sclerosis, Brachial plexus injury, Brain injury, Stroke, Cerebral Palsy, Friedrich’s Ataxia,Guillain-Barre Syndrome, Multiple Sclerosis, Muscular Dystrophy, Spina Bifida, Spinal Cord Injury, Syringomyelia/Tethered cord, Transverse Myelitis, Lou Gehrig's disease & Parkinson’s disease. This recent survey also indicated that 1.275 of people here in the USA were paralyzed due to spinal cord injury. An estimated 12,000 spinal cord injuries happen every year in our country. According to National Spinal Cord Injury Statistical Center 23% of all spinal cord injuries resulted in paraplegia, while 18% result in complete tetraplegia otherwise known as quadriplegia.[[During President Bush’s years in office our country spent less than $120 million a year on spinal cord injury research. In contrast, we spent $12 billion a year for care and support of people with spinal cord injuries (these figures do not account for the millions of other people receiving care and services related to other forms/causes of paralysis).] Where is the logic in that? [ Leading experts in the field believe that's an investment of less than $2 billion a year could provide a cure within the next decade. That is a small price to pay, especially given what a huge impact a cure would have on the lives of those people living with paralysis, not to mention the enormous savings it would produce over the long term.]] *****From Christina's Blog of 2.9.2009}}
Fortunately, President Obama has reinstated the stem cell research that was going on several years ago and a cure can't be that far away - in Chrissy's blog's she talks about WHEN not IF they find a cure - I hope it is not that long, but it is too long for Chrissy. I was shattered when I found out that she couldn't face life any longer.
RIP - Christina Symanski.
