Rehab Rules

I have a lot to tell you today and all of it good news!!

Last Wednesday, my sister Maria and her husband Milton, drove me to Royal Rehabilitation Centre Sydney, because it had been quite a while since they used to spend their days out there with me, and boy did they get a shock to find that all of the buildings (except one the out-patients use) that they had spent a good deal of their time in, were gone!

They came into the out-patients building to see the nurses and Dr Zeman and my lovely, long suffering OT Lisa. When we got to Lisa, Maria asked her what else she thought that I should be doing (uh oh!), and was there anything else that I could be doing (more than using the Saebo Flex, the Saebo Stretch, using the mirror therapy, the tens machine, the balls little and big) to help my recovery. 

They chatted for a bit while I picked up and put down the special balls from Saebo and Lisa told Maria that I was extremely lucky, as I was to be given another dose of the Botox in my wrist! As I have mentioned before, the government gives stroke recoverers, 4 doses of Botox/Dysport (providing it is having a beneficial effect) for the treatment of upper limb muscle spasticity due to the stroke, I have been given this amount of the drug quite some time ago and since then, the other doses that I have been fortunate enough to have used on me, are for Dr Zeman to teach different doctors how to use Botox/Dysport, how much and where they can used for the treatment of the spasticity.

When I went into the clinicians room, Maria came with me to see what Dr Zeman does and how many Drs are getting the benefits of Dr Z's expertise. Then they were ready, and it is not a pretty thing as I am given an electric probe to help find the correct muscle and when they do find it, the probe bounces up and down as my heart beats. Not nice at all, but I am very, very grateful for being a research specimen!!

After they have given me a dose of Botox, I then have to do as many exercises as I can, until two weeks have passed when I will get my affected arm cast in plaster again. I returned to rehab for the next appointment and although I had done a lot of the necessary exercises, a dear friend is in Royal North Shore Hospital ICU as he fights a virulent virus and that had got in the way of the amount of exercises that I did do.

Lisa has been very patient and kind with me, and I know, that I have been ready to give up on me long ago, but she is NOT, so, I am trying to do a lot more of the Saebo exercises than I have to do, so, when I return to have my arm cast again, I hope that I will have done everything that WE can to have a successful outcome this time!

26.8.2012

Painless pain???

One of the reasons that I haven't written for a couple of months, is that I feel so bad that I have been going through a plateau and haven't been doing ANY of my exercises for 6 weeks! I know! After doing more than my share of the boring, repetitive and sometimes painful exercises for over 5 years - I came to a stop! 

Now, I am going to be in trouble with my lovely OT Lisa, as my little muscle in my right (affected) arm is soft and going away! Lisa is a fantastic and very hard working Occupational Therapist, who is going to see me next Wednesday!!! 

You see, I have been so fed up, that I couldn't be bothered to do the exercises, but you don't realise how quickly your muscles atrophy in such a short space of time, and I didn't realise the Lisa would be able to get me another 6 weeks of Rehabilitation at the Royal Rehabilitation Centre Sydney!

What had happened to me was something that no-one could foresee happening, but had enough of an impact on me to make me not want to do anything! I thought that I had had another, small stroke! 

One day while I was at work, I had a dull headache all day but didn't think anything much about it until I appeared to have 'broken glass' in front of my eyes for at least an hour. I kept blinking it away, except it wasn't going away! Then after a while, I noticed that it was gone and really didn't think about it again. Later that night when my daughter came home and I was speaking to her about her day, she started looking a bit frightened and as she is only 17, it worried me and I thought I was saying 'not to worry, what is the matter', but I was talking 'gobbledegook' and that really got me upset!

We called my neurologist and made an appointment for me to come in and see him. When we did tests etc Dr Joffe said that he thought that I was having a 'painless migraine'! I had never heard of such a thing, but I felt that he at least should know what was wrong with me. The more I mentioned to people about this, the more I heard about it and it the more I heard about it the more people said, 'oh yes, my ***** gets that'! So, I had a 'painless migraine' and apparently it isn't painless at all, but my pain sensors are in a part of my brain that has been altered by the stroke so pain is different in different parts of my body now and I can't explain it, but I can still feel it in a different way!!

After Dr Joffe told me that this is what was happening to me, I was left with....an 'oh no' sensation! Now that I knew that every thing was a-okay with my health, I had to face the prospect of seeing Lisa and telling her that I hadn't done my exercises for...

25.8.2012

Homecoming

When I came back to my apartment after being at rehab the second time, I had no idea what to expect, I just that I knew nothing would ever be the same again.


My family settled me in at my home as best they could but I was so upset that my children were not to be living with me anymore that I thought that I would literally die, but at least, I was back at home. 


The first day I spent at home, (with most of the time spent in bed) and then the second day, I got a taste of what my life would become for the fore-seeable future. I was awakened by my front door bell and then the carer came in to my room and the daily washing, dressing and feeding began. I had gotten used to carers at my sisters house and of course I was used to the nurses at rehab, but no one ever told me that I was to have a nurse or carer for most of the time when I first came home.


My mother came to spend a few days with me every couple of weeks, my sisters all came here and there and my girls came over most afternoons after school, so, I wasn't left alone completely by myself which is a good thing, after such a traumatic event, and at least with them at my home, I had something to occupy my time.


However, when they went home, silence descended on me and I was alone. My family had organised Foxtel for me (the cable pay for channels) and I had the normal television to make my life 'a bit easier', but I can tell you, there was nothing that could make up for my previous life and I spent a lot of my now time crying and thinking what I would be doing in my life, if I hadn't had the stroke!


This is the list of people who came into my life and spent a great deal of time in my home from that day forward: The counsellor - very important, the Occupational Therapist - they helped my to organise my time and made sure I could do my exercises, the Speech Therapist - for obvious reasons, I couldn't speak! Physiotherapist and at least one Carer who washed, dressed and helped me to learn my way around my home, the grounds, the garden and to the local shops. These people were to all intents and purposes - me.


The most important person to me at the time was Gemma, the counsellor. I railed and ranted in fits and starts as best as I could since I still couldn't speak hardly at all. She organised for my girls to speak to her when they wanted or needed to, all the services necessary for me, such as community cars, taxi vouchers, laundry service, Stroke Survivors group and other things like that.


Tania, the Occupational Therapist came and tried to make things better for me and all of her 'clients' I am sure, but I really didn't understand what she spoke about and how my doing what she was doing was going to make my life 'better'! She made up lists for me to follow when we went to the supermarket, or when we went to the cafe, or when we just went up to the Mall. She tried to show me how and what I could do (which wasn't a lot!) and I tried, but mostly, I cried.


Then there was Ness, the other Occupational Therapist who worked on my hand and arm and spent a long time trying to get me to work with a casino 'chip', running it round and round my left hand and fingers to try to help me become adept at using my left hand. What a lovely young woman she was and she tried hard to make me lighten up. I know that she would be amazed at my progress as I think that I type quite fast with only my left hand!!


Of course, the most important person to my mind at the time was the Speech Therapist as I had been an actress and a compere and had used my voice as my way of making a living! Amanda and then Julia were the most vital people in my mind - they could give me back my life and my living - or so I thought. However, it was a long and very arduous undertaking to try to make my mouth make the sounds that I was used to making. 


After a while, I had to employ my own team of people as I had used up all the services that the government provided to a disabled person for free. Luckily I was able to choose the best people from Royal Rehabilitation Centre Sydney. So, I had Philip W for my physio, Jennifer W for speech, Helen for OT and Peter my ex-husband to make sure everything was going like clockwork, but nothing and no one could help me to try to become the person who was left over from the person that used to be.


15.7.2012

Subluxation-ed

I have written what I have been feeling lately and haven't thought about how my readers can follow me through my rehabilitation - but I am going to be talking to some others over the next few weeks to work out how I can do that, so, it becomes easier for you. However, I shouldn't get carried away like I usually do, as I have a heap of things that I want to write about right now!


The SAEBO has been AMAZING!! I am a bit miffed because it has been 5 years since I had my stroke and it has taken me 4 and a 1/2 years to find the 'mechanical hand', meanwhile my knuckles have become subluxation-ed(? I don't know if that is what it is called!!) they have gone inwards and don't work properly and that is a big concern of mine. 


I doesn't matter how fantastic a piece of equipment is, if you don't have the correct way of holding it, it won't work properly and that is what is happening with my hand!

The Saebo (*taken from their website so that readers can get a fix on what it looks like!) is a fantastic piece of mechanical wizzardry, that the wonderful people at Royal Rehabilitation Centre Sydney, have tried to help me to use. 


It works so amazingly well, that I am very annoyed with myself and my hand because by this time (six months) I should be further along with recovery, however, I am going to be given another injection of botox (botulinum toxin) in May and it will probably the last time as I have been so very lucky to have the staff at RRCS on my side and trying to do everything in their power to help me to recover as well as I can. So, I HAVE to work harder than I have ever worked before, to try and get as much use out of my hand and the Saebo while the botox is in my system.


There are a system of exercises that I have to do each day (I get frustrated and won't do them sometimes because after 5 years, I am so sick of doing them - but then I think about Christina and how her life became so hideous that she felt that death was her only recourse - and after a few days of thumbing my nose at myself, I come crawling back to do my exercises again) with the saebo, they are not that hard but you see, we are trying to teach the brain to go along a different path and explore them in a neuroplasticity way, hopefully, my hand and my brain will end up working together! 


So, as I was saying, the hand has to work in sync with the brain and that is where it becomes a bit sticky but the saebo helps and I would have never thought it possible that something as simple as this, would make such a difference to peoples lives. I have to strap the saebo on to my right arm and then I pick up the first ball and put it in the basket, then pick up the second one etc I have ten of the balls and then a heap of different shapes and sizes of 'things' that I have collected over my rehabilitation, that I have to pick up and put somewhere different. At the moment, my aim is to try to make my right arm able to become stronger and stronger so that I can pick up the saebo and put the balls where ever I want. It is starting to come to me slowly, but me being me, wants it to be able to be strong right now!


I can now pick up my toothbrush and rub my teeth in a kind of brushing way, pick up my splayed and use it to put food in my mouth, and kind of brush my hair with my right hand! All of these things are new to me, thanks to the saebo! As you can see, small things amuse small minds but they also help us to feel like we are getting somewhere.


27.4.2012

Life is good....sometimes.

My 5th anniversary of having the stroke, was last Saturday the 17th of March, the day that time stood still for me, and I was a little bit afraid of the day and the date until it came to it, but I can tell you now, that the day came, was seen and was conquered!!


I celebrate the fact that I have lived through a stroke. Like a cancer sufferer, the consensus is that once you have passed the great number 5 in years and have survived, you can only look up.


The next day, the 18th of March, a girlfriend (Kristina, the wonderful girl who washed my hair in the rehabilitation hospital!) and I, walked the length of the Sydney Harbour Bridge and back just so I could defy the odds and spit in the eye of fate, and boy, did it feel good!


I have made a huge amount of recovery but there is still a really, long way to go. I think that is to be expected when my family was told, that I would most likely spend the rest of my life in a wheelchair with little or no speech and would probably be better off in a nursing home! Not only did I not go to a nursing home, I have almost lost the limp that I have, my arm is very good and my hand is 'functional'. Those are all pluses in my book!


The doctors and the nursing staff of a rehabilitation facility, have a tried and true way of dealing with the "client" and their families, by telling them the worst possibly outcome and then have those "clients" and families push to ensure that they would not be a statistic but would prove them wrong. This is me to a T!


This past week, I was asked by the head of the OT department, at the Royal Rehabilitation College, if I would be one of the 'patients' that were to be used for showing the electrical stimulation machines and what they could do on a real person. Of course I said 'yes' because they are wonderful to me and need all the help that we can offer them and for once, I could give something back.


I had also been asked to take another woman (who had her stroke 6months before me and who Dr Zeman has taken on), under my wing. I had to show her how to get the bus to Rehab as she has just got on to the pension and has to get to rehab the best way she can, like the rest of us! However, she is much worse in the physical aspects of her recovery than I am but I realise that more than half of her reasons for not being any better are soley because she has relied on other people for the whole time! 


I decided to do both things at once, go to Rehab to help with the Electrical Stim and to help this woman by asking my friends to use her as another helper in the ES. I had to meet her in city of Sydney and show her how to get the bus to rehab and then we had to walk up the hill to Weemala and go to the workshops there and then walk back down the hill again! I was totally bushed by the end of the day and now I know why she isn't any better than she is - she finds every thing too hard - I understand were she is coming from believe me, but it is hard enough for any of us to get around and I for one can't have someone else pulling me down, so, I have to tell it like it is so that the new people will realise that we are all in the same boat.


When I said to her, "you should come down to the swimming pool" (the council one at the leisure centre), and she said "why" and I said, "it will make your leg stronger as you have to push against gravity and in a couple of weeks, you won't know yourself" and she said, "I don't like getting wet"! I was gob smacked! She is like that with everything and I am not going to let her get away with trying to sabotage herself by living up to her image of "poor me"!


When she said "well, my stroke was bigger than yours because the Drs told my husband that I would be probably not get any better, and I might even be in a wheelchair as my walking was so bad", and I said, "Well my friend, I was in the same state as you when I was here at the Royal Rehabilitation Centre Sydney, Dr Zeman thought that I would end up in a nursing home and virtually washed his hands of me when I was discharged! Now look at me, when I come in here, Dr Z comes over to me, we shake hands and have a really good old chat (as you saw today!), he calls me his 'star pupil', and not for nothing! 


"I was as bad, if not worse than you when I had the stroke, because I couldn't talk and you could and can, you can use your right hand and a lot of us were predominantly right handed and we have had to learn to use our left hand, so stop measuring yourself against who is worse than you and who isn't and who has it harder than who. The first thing you will have to realise if you want for me to mentor you is that it is up to YOU not to become a statistic"!!


She was so upset with me that she didn't talk to me for most of the way home - then she must have thought it over because she emailed me the next morning, this is what she wrote - 'I felt I grew so much today by finding out how to get to Rehab by public transport and it was fabulous to meet so many new and lovely people. I had the best day ever..thanks to you…love *******…xxx'.


So, it just goes to show - you can't give up on people!

24.3.12

Dignitas or not Dignitas

It has been a few weeks since I wrote and more than a few weeks since I have wanted to write - I still mourn for Christina Symanski, and she is still in the news in the US even though she has gone from us. 


Firstly, I am appalled (I know what the English newspapers are capable of!!), at the Daily Mail on-line who has started all this rubbish again about whether Christina took her life because she had a broken heart and makes people question her motives etc, isn't it enough that the poor woman said in her own words she "was living an intolerable life"?


I have read a few articles about this now, to try to make up my own mind how I feel on assisted suicide. I have read a lot about Dignitas in Switzerland and how they assist the suicide of people who want to die and I believe that a cause like Christina's could have been properly assisted with this aim instead of having to take TWO MONTHS to bring about her death, herself.


There are two books that I have read about the case for taking your own life, they are, "Whose Life Is It Anyway" by written by Brian Clark in 1972 and "You Before Me" a novel written by Jojo Moyes last year in 2011.  


I happened to see the movie of 'Whose Life Is It Anyway', in mid 1984 and I wanted to see it again, so, when this topic became crucial to me, I sent for the dvd and watched this fantastic movie, starring Richard Dreyfuss as a sculptor, who is left as a quadriplegic after an automobile accident. He came to the decision to end his life as did Christina, but he was in a hospital and had to get it legally contested in order to do as he wished. He, like Christina, had to not take any medication and basically starve to death, in his case, it was the 7-10 days of horror, he was fortunate to have a good lawyer and hey, this was a movie after all.


In the book, "You Before Me", the hero has decided that his life is intolerable and wants to die after 2 and a half years as a quadriplegic, but, his family asks him to 'give the six months to change his mind'. He agrees, as he wants them to accept that for him, his life 'before' compared to his life 'after', is not a life at all. 


In the book, "You Before Me", by telling us of his daily struggle just to breathe, just to try be comfortable, to sleep when he gets too hot and there is no one about to take of the top blanket, to have an itchy nose and not to be able to scratch, it go in their car to a Doctor's appointment where they have to be like a General in the Army to actually get there and be seen and not to mind too much when people (just curiosity!!) look at them as though they come from another planet! Christina when through that and more!!


In the book, he is still determined to go to Switzerland to have Dignitas help him out of this 'travesty of a life', but he has to wait the 6 months to make sure that his family will keep their end of the bargain. That is something that we can't even imagine happening to us. Can we????


Obviously, no ones family wants them to die because you love that person, but can't you just suspend your belief for just a moment to look at this person objectively? To just know that they aren't doing this for any other reason than life is just too hard, painful, and has no dignity at all.


I don't know what I want to or can do, but seeing this lovely, and intelligent young woman, who is torn by her diving into a pool one warm night 6 years ago and ending up in life as a quadriplegic, driven to death in a most horrible way, has so affected me, that there MUST be something that we as compassionate, human beings, can do about it.

Bad things happen....

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.