Things will get better

Rehab is something that I can't get away from and sometimes I am really fed up with it and want to take some time off or stop doing any more Rehab!! However, when I actually think about the almost 6 years that I have (and the 'family' of professionals that we have at the Royal Rehabilitation Centre Sydney), put into the exercises, I have to go back and do them again!

I have always been told that the only person who misses out from me not doing any rehab, is myself, and ain't that the truth! The couple of weeks that I had off over Christmas and New Year, gave me some much needed space to consider what my options are and I know that I am SO lucky to be able to go to the Royal Rehab Centre SO I just have to pull my head in and go for it again!

The last time I was talking about Rehab, I was getting more botox from Dr Zeman and having my hand cast (again!) and saying how much it hurt because Lisa had to wrap my arm in such a way, that my tendons got stretched - and that really, really hurts! Since then, I was using my Saebo flex (hand) and everything was going along nicely, but the botox wore off so much quicker than it ever has before and after a little time, I couldn't put my hand inside the Saebo anymore.

Unfortunately for me, lovely Lisa has been moved up to the top of the hill (the temporary hospital until the new one is completed) and out-patients don't get to see her at the moment, but I am having a consultation with the fabulous Dr Z next Wednesday and I should know a bit more at that time, I will keep you posted on that score.

I have been having some more Speech Therapy with a lovely young woman named Jo, because even though I can speak more or less ok, I talk (mumble) much to quickly! Jo has told me many times that no one knows what I am talking about so please, 'slow down'!! 'Think about what your tongue and mouth are doing before you try to speak' - (we do so much to speak that you wouldn't believe it!) so, I have paragraphs that she gives to me that have different sounds and phrases and ARE helping, but again, it comes down to how much I practise and how much better I want to get at speaking.

After I have had a hour with Jo, I move on to Clare for physiotherapy and try to kneel down on the floor - it is very hard and I spend a lot of time - crying again!  Apparently, I have what is called 'limb neglect' which is something that I had never heard about until someone mentioned the book by Lisa Genova (who wrote "Still Alice", about a woman who got early onset alzheimer's) called "Left Neglect" in which she wrote about this very strange affliction and Clare said that it was what I had!!

I don't 'see' my leg and it is as though I don't have two legs, until someone mentions it and sometimes I know that it's there and sometimes - I don't. Lisa and Clare would like it if I could do an adapted yoga that has been beneficial to people who have had a stroke, but in order to make use of this type of yoga, I would have to be able to get down on the floor and get back up again! Very, very hard! We have been trying to kneel before a mirror and teach my brain to observe and use my other leg since before Christmas. I was quite nervous about it, but would you believe that this week.....I could do it!!

So, thank you again to the Angels that are the professional staff at Royal Rehabilitation Centre Sydney.

11.1.2013

Bunny Boiler???

A heap of really funny things have happened over the last couple of weeks and I think I will just let you decide who was the lamest.

My youngest daughter has been doing the HSC this year and had been working so hard (for her!) that she thought that she deserved a pet. She whined and wheezled her way around me asking for a Tea Cup Chihuahau that is so gorgeous but I am not THAT silly! We had cats before the stroke and one after the stroke and guess who was the patsy who ended up looking after them??? Right, it was me! This time I was pleased with myself and no matter how she pleaded and cried, I just said "no".

Then one day, she was looking at a pet site when she said to me, "Please Mum, can I have a bunny to love, they don't do anything except hop around and love us", please, please, can I have a bunny, just like this one"?? It was a mini Lop eared bunny - black, gorgeous and already toilet trained to go to the bunny litter after it was fed. So, I looked at the lovely bunny and thought, "she said that it doesn't DO anything, just hops around and be's lovely and will love us" - yeah right!!!

At first, the poor little thing was so traumatised with having to leave her brother (I certainly couldn't have two of them!!) and I was feeling so bad, that I let her come inside to be with me when my daughter went to schoolies at the Gold Coast in QLD the very next week!! I let her come into my room and hop around the lounge room and just be with me when I was home so that she wouldn't think about her brother etc and be lonely but I hadn't had a phone call that I was waiting on that week, to tell me when I had to go to Rehab, so, I waited and waited and thought that nothing was happening when I got a text message.....'what's wrong with your home phone Wendy, I have been trying to ring you for....' - OMG!!!!!

That's right, the bunny - named Duckie, had bitten though the telephone cord!!! Then when I was tracing the cords back through the house, I found out that the TV in my bedroom was kapput as well as my mobile phone chord!!! I was stomping around telling her that I was going to put her outside and she needen't look at me like that etc, but she is little and lonely and didn't mean it and I love her and my daughter would be so annoyed.....and so I let it go.

A couple of days later, I got dressed in a reasonably new dress and went to work, when Marci said, "what's wrong with your dress?" She often has to fix up my outfit because I have a subluxioned shoulder (one side is lower than the other) and I just thought that was what she was fixing......after a few minutes, she said, "something is wrong with the hem on this dress, it looks like something has chewed it".......say no more!!! Duckie was nibbling on my dress that I had hung on a coat hanger on the clothes line the day before and I had been walking around with the nibbled dress on for some hours!! Grrrrrrrrrrrrrrr!

My daughter came back from schoolies and was not feeling very well so she went to my Dr the next day, only to be put into hospital for the next couple of days due to a virus and through that her Asthma. So, she had only spent a few hours with Duckie and then went into hospital, so, she was very excited to be coming home and finally be spending some time with her bunny....... only to find out that Duckie had eaten her Haviana thongs!!!! Duckie is also now, untrained to go to the bathroom in the litter tray since I haven't been able to put her in or take her out of the litter tray, so, yep, sucked in!

We have to start the training all over again but she really is a great pet, providing that we keep her out of the house where there are cords, clothes, thongs and .........so, who was the lamest??

 7.1.2013

Family fun and feasting

I think that I would like to tell you about my lead up to Christmas and New Year because they were awesome!

As I have said before, I am still lucky enough to be working two days a week at Screenrights, the company that I was working in before I had the debilitating stroke. Believe it or not, they kept a job opening for me! I have been so happy to dress up, make my way by bus and go to work, that I probably would do the job for nothing - but don't let on to them!

We have always had an end of year luncheon and this year was no different, except that one of the women at work had suggested to Marci that they should book 'Tastevin' in Darlinghurst which was one of her favourite restaurants. What a gorgeous restaurant it was, overlooking the main street, with windows all across so that you could see the people outside. The food was French with an Australian twist and we all had a great time mingling and chatting away with people that we didn't get to spend a lot of time with during the year.

Many years ago, Kylie had organised that everyone who worked at Screenrights, gave $5 to be sent to a Charity that we had chosen, and also brought a fun gift to go into the 'Stocking' and be used as a Secret Santa or Kris Kringle gift. These gifts range from the ridiculous to the sublime and everyone joins in the hilarity of the occasion. Being a Friday afternoon, the company allowed us to have Monday off as well, so, we were all able to be organised for Christmas!

Although it rained for most of the day, the girls and I went over to their Dad's house for Christmas lunch and we all had a wonderful time together and then my younger daughter and I drove to Newcastle to spend some time with my Mum and sister's.

On Boxing Day, we all went to Terina's beautiful Federation home in Charlestown, to welcome her son Joe, home from looking after the elephant's in Thailand and have another Christmas lunch with another Secret Santa! It was fantastic to hear of Joe's experiences with the elephant's and for him to speak so well, was marvellous! The food was superb, the wine wonderful and the conversations hilarious! It was such a gentle and fun loving day that you couldn't ask for more.

On Thursday, my sister Maria or Ria, had her yearly 'do' where everyone and anyone drops into her home bringing food, fun and Bocce! (I used to be on a Bocce team before I had the stroke, but the bocce balls are so heavy that I can't throw them anymore). As the day gets longer, and we start getting tipsy, then we start to sing Christmas karaoke......finally finishing off with.... limoncello - what a day!!!

To bad for me though, because I had gotten a text from my dentists, telling me that I had to come in tomorrow and have some casts of my mouth done as the specialist who was going to be 'growing me some new bone' had become free and it would all take place early January (*That is another story for next time)! That meant that I had to catch the train back to Sydney the next day and go to the dentist to have the plaster casts done and of course, they were doing track work on the Newcastle/Central Coast line Grrrrrrr!!

Anyway, Maria and Milt came down to Sydney on NYE as Milt plays on the South Steyne, an old ferry that is moored at Darling Harbour. He went to work and Ria and I walked over to the Lindt shop and had some yummy chocolate drinks and some food from Adori the restaurant next door. Ria managed to get another table in a fabulous place for the 9 pm fireworks, so we stayed there and had more food and another sister, Stephanie, came along as well! We chatted until our cousin Cindy and her husband Livio came to meet us and then we all were lucky enough that Macca (the man who owns the Sth Steyne) invite us to come on to the boat and watch the midnight fireworks!

NYE was fantastic and I could just tell the 2013 was going to be my year.

6.1.2013

Sepsis - what's that??

Last year was not a bad year, but it wasn't good either! Not for me, but for others who I have loved.

In August, a very good friend who had a bad cold that wouldn't leave him, he just kept getting sicker and sicker. This young man, of 34 years, had had a pace-maker ever since he was a young child, so, he had a lot of experience with being sick and even going to hospital, thought that he was fighting with the same problem again, so, he took himself to the Royal North Shore hospital to see a doctor.

The doctor put him straight into hospital and called his parents. They then proceeded to work on him, after telling him that he had a very bad case of pneumonia and it would be to his benefit if they put him into an induced come for the time being. They needed to fill his body with the drugs that would hopefully help him with the infection and they thought that they could bring him out of the coma after that time.

Friends and family gathered around and were visiting him every hour of every day, hoping that they were going to be the ones who were there when he woke up. The staff in the ICU were inspirational and if I ever had to go to another hospital, (please noooo!) I would be very happy knowing that I was going to the fantastic RNSH. They did everything that you could ask for, they talked to Chris as if he was awake and they had to shave, wash make him look as pretty as possible, we all knew that Chris was a bit ....vain!

I started thinking about how long I had known him and all the things that he did to make him special to me.

I first met Chris 12 years ago, when he was working as the 2nd Chef along side of a girl friend called Dee and another friend called Doug. They were funny, loud and such wonderful quirky people that you only had to watch them work to know their food and coffee, would be superb - and it was.

They worked together for the next 6 years and I was lucky enough to be considered their friend and their 'Sydney Mum', being that much older than they and with two children myself. Sometimes when my girls had gone to their father's place for the weekend and I was at a loose end, Chris would ask me over to his place to watch a video or play some games on the Playstation and have something yummy, that he made to eat.

Dee got married and Chris was in a relationship with Miwa. He was entranced by everything Japanese, including, Astro Boy, the Playstation and Miwa!

During the next couple of years, Dee started working in the horticulture field and had a baby; Chris went from restaurant to restaurant honing his skills enough to cook with The Iron Chefs - he thought that he had made it and I had the stroke.

Being Chris, he was a source of fun and laughter, even when I wasn't anywhere near my best and he told me many times, "we're here for a good time, not a long time", I wonder if he knew???

As time went on, they helped us to understand that if Chris was to recover, he would not be the Chris that we had known. He would certainly loose his fingers and toes if not more and that meant that he wouldn't be able to be a Chef - he would not be very a happy man at all. As well as these extremities that were affected by gangrene, his liver, lungs and kidneys were all in a bad state with the kidneys being on dialysis 24/7 and himself being on life-support. I remember that all of us at one time or another over the next three weeks, were sure that he was just sleeping and we would talk to him as though he was listening.

He never woke up.

Chris died of Sepsis - a horrific infection of the very blood that flows around our body and is supposed to keep us alive - I am putting a link to the Sepsis Organisation to help people to understand what this hideous and potential fatal complaint can do.

This is for Christopher Mack Galloway R.I.P.   -    29.3.1978 - 11.9.2012

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http://www.sepsisalliance.org/faces

Pneumonia

Sepsis and septic shock can result from an infection anywhere in the body, including pneumonia. It is known that in the United States, health care–associated infections (HCAI) affect 1.7 million hospitalizations every year. And, the two most common conditions are sepsis and pneumonia. In February 2010, a study published in theArchives of Internal Medicine, confirmed the high costs resulting from caring for patients: an more than $8.4 billion per year. In addition to this, the study found that such infections cost an average of an extra 11 days in the hospital and $33,000 dollars, per person.

Sometimes called blood poisoning, sepsis is the body's often deadly response to infection or injury. Sepsis kills and disables millions and requires early suspicion and rapid treatment for survival.

Worldwide, one-third of patients who develop sepsis die. Almost 20% of patients who develop sepsis after surgery die. Many who do survive are left with organ dysfunction and/or amputations. (What is the prognosis (outcome) with sepsis?)

The most common source of infection, among adults, is the lung or lungs.

Famous People Who Developed Sepsis Following Pneumonia:

Actor Jeff Conaway

Born October 5, 1950, died May 27, 2011 due to sepsis from pneumonia.

Jim Henson, creator of the Muppets

Born September 24, 1936, died May 16, 1990 due to sepsis from pneumonia.

Definition of Pneumonia

Pneumonia is an infection in the lungs. The infection can be only in one lung, or it can be in both. There are several causes of pneumonia but the most common are:

• Bacteria
• Virus
• Fungus

Left untreated, pneumonia can be deadly. In the days before antibiotics, it’s estimated that about one-third of those who developed bacterial pneumonia died.

5.1.2013

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