B-right side

After five or six weeks, I joined the Occupational Therapists in the kitchen where they told me, that I was about to make some toast and tea! I was thrilled, as I thought that making 'breakfast' was a real achievement!  


I manage to burn the first lot of toast because I couldn't coordinate myself in the wheelchair and 'do things'! I had to put more toast in the toaster and I watched it turn golden brown and then I remembered that I had to make a cup of tea. When it was almost ready for me to add milk, I almost burnt the toast again - Ness (the young OT) managed to get the slices out and ready to be buttered. That was a whole other thing right there, because I had been a right handed person most of my life and now, I didn't know what to do because I didn't have a right handed anything! I didn't even registered that I had a right side because it didn't do anything! My right side didn't hurt as such, it just did nothing. So, I remember looking at my right hand and my left and my right again, then I tried to butter with my left hand - whoaaa that was a mistake. I tried to put the knife onto the bread and I never realised how difficult it was to use your left hand, but that was what I had to face, that and more tears because I had no idea how I was going to butter this stupid toast!


After a few stops and starts, I managed to get the toast sort of buttered and took it and my tea and went to eat it in the 'dining room' that is set up in the hall of the Brain Injury Department. There where about 4 different lots of people learning various chores that morning and all of us were concentrating on our mission to the exclusion of everyone else. That hall saw many a herculean task I can tell you, as all of the broken people tried so hard to 'fit in' and be 'normal'.


This was one of the many meal time tasks that I and the other residents of Royal Rehabilitation Centre Sydney had to learn again. The simple tasks like making tea and toast seem are a huge learning curve and you really do feel 'chuffed' when you get it right! However, once won't do it, because you forget how to do it almost as soon as you make something - another thing I didn't know - and most people who are trying to make breakfast for the first, second and third time don't know this either!!! So, the whole process takes on surreal concept. 


After 3 or 4 times, it is set in your mind (brain) and you can go on to the next step, so, again learning everything, takes a long time. When we had the tea and toast down pat, we moved on to an egg, the next time it was an egg and bacon! Then, after I had made a simple breakfast a couple of times, we moved on to a full breakfast that included: cornflakes and milk, and fried egg and bacon with a piece of toast and a cup of tea, I wasn't going to eat all that anyway, but I felt really empowered!! That day was one of smiles and it only took me 8 weeks!


The staff are so patient and calm that it does make one wonder, is there a special place where they all come from???

Research or Re- search???

I am extremely lucky to have been chosen

by Dr Zeman the Medical Director of the Royal Rehabilitation Centre Sydney, as one of the research patients here at Coorabel.


Dr Zeman has been teaching other doctors at RRCS to use the drug Dysport or Botox, so, I get to have it used on me, which allows the new doctors to get to use the drug and me to get the benefit of Botox.  Yes Botox, the same thing that people who like to look 'younger' and 'refreshed', have injected into their faces, but for me, it's not a case of 'how much better will I look', but how much easier is it to use my hand, if at all.


RRCS have a new OT Lisa, who is fantastic and she has come to Royal Rehab from Westmead Children's Hospital, Brain Injury Dept, and now does the same thing for us, however, she only spends 1-2 days a week in outpatients. 


She checked out my hand and was curious to see my wrist was turning down wards and asked Dr Zeman if he would object to her doing some more therapy on my arm, as they were doing all sorts of wonderful things that she had learnt from working with the children. Dr Z and she talked about it and he felt that she and I were a good match and he said, YES! 


I got the botox today and next Fri I am getting a soft cast on it. They change the casts every three days for about two weeks and hopefully my hand will have come back up (because they are lengthening the tendon), **they will then make me two new splints I can wear day and night,** and hopefully, things will look up from then on. I am very, very fortunate! 


This is what she and another OT Ian are doing:  They have bent my hand back so it is 45 degrees to my arm and cast it (with plaster)for 3 days, then they do it again, casting it for 2 days, then again, casting it for 1 day, until they hope, my hand will be straight enough to have splints made. **I will wear them constantly over the next 6 months (the length they hope that the Botox will work in my arm), except for an hour a day when I am doing my hand/arm exercises.**


**Now I have to make a few corrections because I have written things that I have got mixed up and mistaken! Firstly, I got the cast off today and I find out that I will only be having one new splint for my hand because Lisa doesn't want me to rely on the splint and it will do some nasty things if I wear it constantly - things that I had no idea that hands went through! My hand, it has swollen up hugely, I think it's  because of having the cast on but I am not sure and thank heavens I will be going back to Rehab on Friday (today it is Wednesday)so I will ask Lisa then. The lengthening of the tendon has hurt quite a lot, but it is something that I can see the benefit of straight away!**


People still get confused when I say that 'I am getting Botox in my arm', and they say 'don't you mean your face?', no, I don't! It is amazing what researchers are finding out that they can do with some medical conditions, using drugs that were made for one thing, they are using for another or they are being used on a plethora of different kinds of complaints. 


Take Dysport or Botox (protein extracted from the bacterium Clostridium Botulinum) it has been used for neuromuscular disorders, like spasticity, (*the meaning I have taken from Wikipedia, so that we all know what I am talking about):


**Spasticity is found in conditions where the brain and/or spinal cord are damaged or fail to develop normally; these include cerebral palsy, multiple sclerosis, spinal cord injury and acquired brain injury including stroke. Muscles affected in this way have many other potential features of altered performance in addition to spasticity, including muscle weakness; decreased movement control; clonus (a series of involuntary rapid muscle contractions often symptomatic of muscle over-exertion and/or muscle fatigue); exaggerated deep tendon reflexes; and decreased endurance.**


[When I have been researching the articles for this blog, I have been suitably chastened by the much more severe kinds of problems, the diagnosis and treatment of the conditions that these drugs have opened up to me, I am inspired by all the amazing people all over the world who have these different conditions or are researching them.] 

***Then I look at the next paragraph that I have ready for this blog...'I am excited about my arm, even though it is very painful, and I am feeling a bit sorry for myself, because at the moment, the ot's at Rehab are trying to straighten my hand and my arm it hurts - badly'*** and I am ashamed. Yes, it does hurt, but compared to others, I have nothing to complain about.


I am ashamed that I should be whining and moaning, when someone like Lara exists:

*Lara a young physiotherapist who worked with stroke survivors, and was known to the staff at RRCS, a girl of 25, who had been on a working holiday. She didn't feel well and took herself to see a doctor in the UK, worried that she may be having the symptoms of a stroke. That doctor told her that working in the medical field was not good for some people as they self diagnosed and she probably had a migraine, gave her paracetamol and sent her home. That night, she had a major stroke and is now, wheelchair bound, she is 29.

*See: Lara's Gondola - a book that Lara Friedman has written.

History

This is the timeline of the fantastic facility that has become the RRCS.


1899 Miss Susan Schardt, blind from birth, became aware of the accommodation needs of patients being discharged from hospital as 'incurable'. She rented a cottage in Surry Hills - the cottage eventually housed sixteen 'incurables', as well as a nurse to care for them.

1901 The Governor of NSW, The Hon. Henry Rawson, became aware of the Commonwealth Home for Destitute Invalids, as it was then called, and became its patron.

1905 Name changed to NSW Homes for Incurables.

1906 The Governor called a meeting in the Sydney Town Hall to consider how best to expand the activities of the Home.

*The Hon. Henry Moses, M.L.C, offered his property in Ryde. In December, Weemala opened with 65 beds.

1924 The Moorong building opened with 24 beds for patients with malignant growths - today it houses our Spinal Injury Unit

1967 The Coorabel building opened with 114 beds to provide rehabilitation services

1987 The Spinal Injury Unit opened

1993 Coorabel building refurbished and modernised

1996 Orthopaedic and Neurological Units amalgamated to form the Coorabel Adult Rehabilitation Service (CARS)

The Royal Rehabilitation Centre Sydney (Royal Rehab) is classified as an affiliated health organisation within the Health Services Act 1997, but is also a Company limited by guarantee. We retain an independent Board of Directors, who continue to oversee the development of strategic planning and excellence in rehabilitation and extended care.

Royal Rehab is a highly specialised physical rehabilitation facility located within the Northern Sydney Area Health Service.

We provide individual rehabilitation programs for adults with disabilities arising from;

•Spinal cord injury

•Traumatic brain injury

•Age related illness and disease

•Amputations

•Occupational Injury

•Orthopaedic injury and illness

•Neurological illness

•Stroke

•Burns 

Thank you to the Board of Directors and the wonderful and caring staff of the Royal Rehabilitation Centre Sydney.

Day by day....

Coorabel Adult Rehabilitation Service or CARS, was the name of the building that I was sent to after the RNSH.


Many of the buildings in the rehab complex, are considered to be unsafe because of asbestos, making these older ones a liability. It has been decided pull some of them down and new ones are being built as I write, but some of these 'old ladies' will live on in my memory until I die.

The routine that I had to follow was one that stands in good stead, so, I will take you through it starting off when the hospital 'woke up' for the day.


A lovely older nurse would come to wake me up early in the morning about 6.30 and it was ascertained how I appeared to be or as I came to know the ropes, how I planned to be that day! If I had had little sleep that night, I was fractious and weepy but 'no, no, no, this isn't good', so, generally, it was better to go along with the nurse as she said (in her sing song voice) 'how are we today, we are going to have a lovely breakfast this morning' (no we're not, we are going to have that horrid mush we had yesterday, and the day before and the day before that!!!) and she sat me up, and held onto me, while she manage to get slippers and a dressing gown on me, then she would somehow get me seated in the wheelchair and push me into the dining room, (that was nearly filled with all manner of broken people) around 7 o'clock and place me at 'my table' with a few others. This was supposed to help us to 'socialise' with one another???


We all tried to smile at each other in our lopsided way or nodded or mumbled 'blahblah' and finally when we were finished as much of the food we could manage, (more went on us, than into us!) we shuffled or in my case, were pushed in the wheelchair back to my room and the morning really began.


The morning meds came next and then the very embarrassing 'showering routine' which I got used to quite quickly. After I was undressed by another lovely nurse, she would push me into (my own) the bathroom and into the shower recess (the wet chair was used in this case), she would don a 'wetsuit' type of apron and macintosh shoes that prevented her from getting as wet as I was!! Then she would hop into the shower recess with me, where she took hold of the shower hose and then played the shower all over me and then she would have to hang it up and wash me little by little, then get the shower hose again and play it all over which ever piece she was washing, then hang it up again and then finally after playing the shower over me again, she would have to dry me, which wasn't very easy, as I would flop to the left or right every time she wanted to get hold of my knickers or bra or whatever, but after 50-60 minutes, (when I was exhausted) I was finally ready to face the day. 


Can you imagine being the nurses and having to do that for 30 people every day, and that was just in Coorabel!!! The Spinal Injuries Unit and the Brain Injuries Unit had a lot people as well as Coorabel, so getting the lot of us broken people ready for the day, took a really, really long time.


It was 9am, time for Amanda and speech therapy. I was not a happy vegemite at this stage, I can assure you. I had worked with my voice for most of my life as a DJ, compere, voiceover artist and actress, now not to be able to make any kind of credible speech was just overwhelming for me, I thought I would rather be mute than to make the horrible sound that was coming out of my mouth, I was speaking in fits and starts and I sounded like a cockatoo - hideous!


Amanda had such a way with her that I did want to please her, she was so  understanding and knew that I was grieving for my voice, which once, only a couple of weeks ago, used to be warm and inviting. Amanda spent her time coaxing some kind of voice out of me, little by little over weeks, there was something we could work with at last, it was certainly no where near what you would actually call a voice, I sounded more like a robot, but with a couple of words, I was actually speaking! 


The next thing on the roster was physiotherapy, were I met someone who still works with me occasionally and that is Philip, (a most wonderful, patient and caring man, someone I have been blessed with, and who now works with his patients in their own home) he was not the first physio that I worked with, but definitely the most successful. Physio was a horrid thing, it was unrelenting, it hurt, I cursed everyone and then cried again, but it is something that they know has to be undertaken as soon as possible to get the most out of a person who has had a major stroke - I was one of those people.


After a couple of weeks, I was getting ready to start trying to walk and that was a whole different kettle of fish! The physios' strapped a light weight belt on the me, (it had handholds along the edge of it so that they could hold me as we tried to walk) off we went - me straight down in the chair again! We did this many, many times and I couldn't work out why I couldn't walk - the first and hardest thing that I had to learn now, was that nothing made sense - I had a brain injury.
  

One Strike and Your Out

As I said in an earlier post, my life changed 'in the blink of an eye'. These posts in my blog, are me, trying to tell the uninitiated, what it is like to have a stroke and to live with one afterward, so, the time has come for me to let you in to my medical world.

This article comes from bettermedicine.com web site in the US but it is a pretty good one, so, here we go....My principal diagnosis was as follows: (L) Basal Ganglia Haematoma with (R) dense Hemiplegia - subsequent right-sided weakness and global dysphasia.

What is stroke?

Stroke, also called brain attack, occurs when blood flow to the brain is disrupted. Disruption in blood flow is caused when either a blood clot blocks one of the vital blood vessels in the brain (ischemic stroke), or when a blood vessel in the brain bursts, spilling blood into surrounding tissues (hemorrhagic stroke).* The sort that I had.

The brain needs a constant supply of oxygen and nutrients in order to function. Even a brief interruption in blood supply can cause problems. Brain cells begin to die after just a few minutes without blood or oxygen. The area of dead cells in tissues is called an infarct. Due to both the physical and chemical changes that occur in the brain with stroke, damage can continue to occur for several days. This is called a stroke-in-evolution.

A loss of brain function occurs with brain cell death. This may include impaired ability with movement, speech, thinking and memory, bowel and bladder, eating, emotional control, and other vital body functions. Recovery from stroke and the specific ability affected depends on the size and location of the stroke.* A small stroke may result in problems such as weakness in an arm or leg. Larger strokes may cause paralysis (inability to move part of the body), loss of speech, or even death.* What I had in the beginning. 

   What are the different types of stroke?
Strokes can be classified into two main categories:

• 87 percent are ischemic strokes - strokes caused by blockage of an artery.
• 13 percent are hemorrhagic strokes - strokes caused by bleeding.*My type
  

  What is a hemorrhagic stroke?

  Hemorrhagic strokes occur when a blood vessel that supplies the brain ruptures and bleeds. When an artery bleeds into the brain, brain cells and tissues do not receive oxygen and nutrients. In addition, pressure builds up in surrounding tissues and irritation and swelling occur. About 13 percent of strokes are caused by hemorrhage. Hemorrhagic strokes are divided into two main categories, including the following:

• intracerebral hemorrhage - bleeding from the blood vessels within the brain.
• subarachnoid hemorrhage - bleeding in the subarachnoid space (the space between the brain and the membranes that cover the brain).*The type that I had
  What is asubarachnoid hemorrhage 
  Subarachnoid hemorrhage results when bleeding occurs between the brain and the meninges (the membrane that covers the brain) in the subarachnoid space. This type of hemorrhage is often due to an aneurysm or an arteriovenous malformation (AVM).
  
  
  An aneurysm is a weakened, ballooned area on an artery wall and has a risk for rupturing. Aneurysms may be congenital (present at birth), or may develop later in life due to such factors as hypertensionor atherosclerosis.
  
  
  An AVM is a congenital disorder that consists of a disorderly tangled web of arteries and veins. The cause of AVM is unknown.
  • http:/www.bettermedicine.com/topic/stroke
    *Thank you to the 'bettermedicine' website.

Foe or Friends

Days became weeks and things started to settle into a strange miasma that turned out to be coming from ME. I was mad, I was furious, HOW DARE this thing happen to ME.

Of course it doesn't seem strange that my sisters and I used to fight like cats and dogs when we were young, but no more would we fight each other, because we had bigger fish to fry this time and boy, did they fight some great fights not only for information about what they could expect to happen to me, but they had a huge fight with me because I was becoming a real misery guts! Nothing was going my way and I didn't want to do anything, anymore.

The medical staff were still working with me to try to make sense out of this craziness and the more they tried to tell me that this to would pass, the more I resisted until the day that I wheeled myself into my room and sat facing the wall - I would show 'them' all. I don't know quite what I was going to show them but I thought that if I sat in the corner long enough, something would change, and it did.

My estranged father came into the picture, he had heard that I might die, so he came to RRCS to see me and believe it or not, I cried and cried! I was so happy to make contact, that the years in between lost their poignancy and he became another friend trying to help me out.

One morning, two dear friends came to see me in RRCS, Leanne had come down from Byron Bay for the weekend to see me and Kristina had driven her out there. Apart from getting very teary because I love them both so much, they washed my hair and that was the best thing anyone could have done for me, because they toughed me!!!

Other friends who came to see me as well, just looked frightened and you could tell that they were shocked at my feeble state - I didn't have a mirror and I still couldn't speak or articulate the words to ask for one - but Kristina washed my hair and Leanne combed and dried it and they both put moisturiser on me. They talked and laughed with me and made me feel normal, which was a great gift to me. Even though Leanne had to go back home after the weekend, Kristina came out almost every week to give me a hair wash, rub moisturiser on me and do some other treatment to make me feel normal.

Thank you both, from the bottom of my heart.

On and on and on...

Once I was at the Rehab centre, it all became a nightmare.  I slowly realised that I had no voice and no one was listening anyway! The nurses on the whole were great, although I didn't think so at the time. When grown people began to sing-song to you, you know that you are in trouble!


The first thing that completely threw me, was finding out that I was wearing diapers! Of course, no one tells you that you are wearing them or that they need to be changed every so often. They just come into your room and proceed to change them as if you are a baby. The diapers were changed a couple of times a day and in the night, when it was more scary, because you would be woken from a sound sleep and your lower clothes just taken off without you having any say at all, I could not talk to or fight these people off and here were people taking away my rights and privacy - I was devastated.


I remember sobbing because I didn't understand what was happening to me. Someone who was so independent and proud of it, was now little more that a big baby.


After a week or so, when I was starting to get my head around the idea of 'a stroke', (I still didn't know what a stroke was, let alone what they did to a person), the ways of Coorabel started to take on a routine. 


I had to use a wheelchair for almost a year, because I lost the ability to walk. Speech Therapy, Physiotherapy, working with the Occupational Therapist, Hydrotherapy and sleeping where main occupations and these endeavours took all day, every day, for months. Trying to eat was something of a hazardous occupation, as you lose the ability to chew and swallow, and the things that we all take for granted like swallowing, become Olympic medal feats!


I had gone from not being able to walk or talk, to being able to walk and talk a little and Amanda, my initial Speech Therapist was used to me being a mess  crying, angry and depressed - but, she was the first one who said to me 'everything - is up to you', and she was right.


A wonderful thing that happened to me, was meeting a boy in the 'gym', (a place of torture and misery that just kept on being there everyday, and still is!). His name was Darcy, and he was about 17. He lived in a wheelchair, couldn't walk, talk, sit or play, but each day he was an inspiration to not just me, but everyone who came up against the cold hard facts, that they were forever changed. He was unable to do anything much, but he had a fantastic and cheeky grin, that kept many of us in check and a great head of hair that his family, (knowing how important his hair was) dyed different colours every week or so! He taught me by his eyes and nods or shaking his head, that nobody but you would be helped by doing the things that the staff asked of you and the quicker you learnt that the quicker you would get to go home. He and Amanda were two of a kind.


My ex-husband was a person that I couldn't have done without during this long, hard road. Boy, did he prove me wrong when life had become so different for them all, he was there and took over the rearing of our two girls aged 16 and 12. He tried to fill the gap between them and me, so, that I didn't become that weird, strange, sick person that they had to visit and pretend that everything would be alright. To say that he was a rock would have been putting it mildly. 


I know that all of my sister's tried to spend as much time as they could with me to try to make things easier, and I thank them for it. They all have jobs and most of them have children, husbands and pets, but sometimes, I was a real bitch.



My eldest sister, Maria, had taken it upon herself to be the go-between with she and my sisters on one side and the medical staff, doctors etc on the other. Maria quickly learnt the way of speaking to and asking for, information from the medical staff and never giving up, when she wanted to get something done for me or work something out. She and her husband Milton took it upon themselves to be my lifeline and I will never forget the way they changed their lives to accommodate me.