While they were in Tahiti Lorraine got a call from her Mum to let her know Lorraine’s Dad was very ill and was in Hospital. Lorraine decided to return back, bringing Terri with her. They left Tahiti, flew via New Zeeland and arrived back in Melbourne two days later, to find her Dad had past the day before. Steven and Alan and Alan jnr. arrived back around four days later.

In preparation for this overseas trip Terri and the family had the vaccinations required to travel. After the trip around a year later at the age of twelve Terri started to experience a loss of balance, no strength in her legs, droopy eye lids, tired quickly, difficulty chewing and difficulty swallowing. In 1978 at the age of thirteen the Doctors at the Royal Children’s Hospital concluded that Terri was suffering from Myasthenia Gravis and started medicating Terri with Mestinon. This effected Terri in many ways and one of them being Terri was unable to play her beloved sports and also affected her school work. Terri was not improving so in 1979 at the age of fourteen the Doctors removed Terri’s Thymus Gland and reduced the amount of Mestinon Terri was required to take. Over the next year Terri’s Symptoms reduced but Terri was still tired and still unwell and the Doctors advised living in a warmer climate would help.

So then in 1981 Alan and Lorraine moved the family to Queensland to the Gold Coast. Terri then went to the Southport High School however, this didn’t last long, Terri came home and said to Mum Lorraine, she wasn't happy at school. Terri soon after left the school and started her first job at the place to go when you are a teenager [McDonalds]. Then moving onto bigger and better things Terri then took a job at a store in Surfers Paradise [selling every girls dream] handbags and jewellery. Around the same time Alan jnr. missing his friends in Melbourne and not settling on the Gold Coast decided to return to Melbourne and build a life for himself.

At the age of seventeen in 1982, Terri started to feel a little better and the Doctors took her off the Mestinon medication. Continuing to work in her dream job, at the age of eighteen Terri got her driver’s licence and Dad Alan bought Terri a car, an orange Ford Laser. Now free to roam Mum Lorraine started to feel the anxiety of her little girl out in the wild until she returned home each night safe and sound. Terri could now jump into the car and take off with her two girlfriends Terri met at school and the trio explored far and wide, going to dances, visiting friends and just venturing.

At the age of nineteen in 1984 Terri started experiencing pain and blurred vision in the back of her right eye, this was Diagnosed as Optic Neuritis and Terri was medicated with Prednisolone tablets. In around two months Terri’s eye pain reduced and Terri was weaned off the Prednisolone. Terri’s teenage years were filled with illness and her wicked sense of humour and positive attitude got her through. Terri was enjoying her life out and about and enjoying her friends and having fun.

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From 1985 to 1991 Age 20 to 26, while trying to live her life to the fullest, every 6 months or so Terri was experiencing re occurring attacks of Optic Neuritis, attacks alternating between the left and the right eye and Terri was being treated on each attack with Intravenous and tablet Prednisolone. Each attack would take a little more of Terri’s eye sight. Terri told me she had a boyfriend around this time in Brisbane, but don’t tell Lorraine I don’t think Lorraine knew.

In 1991 Age 26 Terri’s eye sight had deteriorated to the point that she had to stop driving and sell her Ford Laser, this also made working difficult and suitable jobs hard to find.

Dave got a maintenance job at a school for deaf children in Sydney, so off they went and they lived in a house on the school grounds.

I’m not sure how long the band EarthWorx stayed together, I think they played pubs and clubs on the Gold Coast at least for one year or so. I remember a story [big Dave] Dave Callard telling me, they were up on stage at a pub playing a song and he noticed a man walking toWards the stairs at the front of the stage. He said he could see the man taking coins out of his pocket and fumbling through them, he said the man was stumbling and clearly drunk, he kept walking toWards the stairs and started walking up the stairs, Dave thinks to himself, how nice is this he is coming to give us a tip. When he got on the stage, he looked straight past Dave and Greg and started walking toWards the back of the stage, Dave and Greg had to get out of his way as he stumbled past them making his way to the back of the stage. The band kept playing, they looked to the back of the stage and saw what the man was heading for, the cigarette machine!

In the same year as starting the Duo in 1998 now age thirty-three, Terri was still having Optic Neuritis attacks and went in to Hospital many times. Terri lost all the sight in her right eye and the sight in her left eye had diminished so much Terri was deemed as legally blind. After having a brain MRI scan Terri was told there were lesions on her brain on the optic nerves

[ the lesions are from Terri’s immune system damaging the tissue on the optic nerves] and Terri was also told she had Multiple Sclerosis. Terri was having a ball singing and was coming to terms with having Multiple Sclerosis. Again, Terri’s wicked sense of humour and positive attitude was getting her through.

Soon after in 2000 at the age of thirty-five, Terri started to get swelling in her hands and shortness of breath. A chest x-ray showed that Terri had Lupus on the lungs.

[Lupus is a disease that occurs when your body's immune system attacks your own tissues and organs (autoimmune disease)]

The Lupus was attacking Terri’s Lung tissue, Terri also had low blood platelets and had to see a Haematologist to keep a check on the platelet levels. Terri had many attacks around this time affecting her brain and mobility and had to go into Hospital on each attack. During one of these times Terri said the Doctors didn’t taper her off the medication and Terri suffered from an attack that lasted over 5 days. Terri said this was horrible and it sent her into a state of psychosis and was like this for 5 days till they finally figured out what happened.

Still gigging and trying to get on with life, Terri was dealing with a lot and was starting to feel the strain. Terri’s friend Cathy said to me at this stage of Terri’s life Terri did not look happy.

Alan and Lorraine would often head down to Melbourne to spend time with Alan jnr. and their grandchildren, so Terri and Dave would look after the real-estate office for them.

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Playing Gigs with Dave and often times in Hospital due to further attacks was life for Terri for the next few years until the end of 2006 when Terri and Dave had discovered they had drifted apart and decided to end their relationship.

Terri went to stay with her Mum and Dad and needing a break from singing Terri would go and help out at their real-estate office. Dave and Terri still remained friends.

Terri did this for the next year and at the end of 2007, Terri attended a social group at the Sharks AFL Football Club setup by vision impaired people for vision impaired people to meet up on a Thursday night. I was there that Thursday night and met Terri for the first time. Terri was dropped off by her Mum Lorraine and Terri said that she could only stay for an hour because she is going out for dinner with her family. Terri spoke around four words that night, hello, good bye and thanks.

The following Thursday night Terri came to the social group again, this time I was sitting down the table from a lady who was telling jokes, laughing, talk, talk and talk, I said to the person sitting beside me, who is that down there? They said Terri from last week. Wow I couldn’t believe it was the same person, I saw Terri for the first time and I liked her straight away. The following Thursday night we discovered there was karaoke in the other bar and off we went and I got to hear the amazing voice of Terri McGillivray.

In January of 2008 Terri and I started spending time together and after a short while we were inseparable. I loved Terri’s sense of humour and everything about her. We would go to karaoke venues, out to dinner, fishing and sit around and talk, talk and talk, Terri was pretty good at that and I held my own too! This is when I learned that Terri was a staunch supporter of the Essendon AFL football team. We did talk about our illnesses and our difficulties in living life with limited vision [I am vision impaired as well] and we mostly talked about getting on with living life.

We started going to the Sharks Football Club every Thursday night for karaoke. Every couple of weeks dinner with Alan and Lorraine. Then on the weekends we would either go to other karaoke venues or out with friends. I was working for a market research company and I was also doing an advanced course on computer and router networking. I did both of these from home and it also meant working nights sometimes so our social life worked around this.

Terri and I did a couple of trips in 2008, the video clips are of Terri on those trips we did. I am the one taking the videos, I have around two per cent vision so if heads are cut off you know why!

In April we did another trip down to Sydney for a Christening and for the rest of 2009 our weekly routine was pretty much the same. I was still working, doing my course, we went to Karaoke, out to dinner with Alan and Lorraine, socialising with friends and we would go fishing. Terri and Lorraine would spend Wednesday and Saturday together and go shopping and whatever they felt like doing, Terri really enjoyed this time with her Mum. Still on the Prednisolone tablet medication, Terri’s health at this time seem to be ok, the Lupus and the MS weren’t affecting her day to day life and we were having a lot of fun.

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Terri was very conscious of the side effects of the Prednisolone tablets when taken for a long time, so Terri worked very hard to keep her skin healthy. Terry only used natural beauty products and was very particular about what ones she used and would only use soap made from natural products. Terri was very educated on what was good and what was commercial rubbish and her skin always looked and felt fantastic. I had an electric walking machine in the garage and Terri would exercise nearly every day, doing at least 30 minutes at a time.

One night we were having dinner, Chicken Schnitzel, oven fries and vegetables, Terri started banging her plate on the table, are you ok? Terri banged the plate again, I got up and went around the table to Terri and Terri was sitting looking straight ahead, I put my hand on her chin and I said can you breathe? And Terri shook her head, I said are you choking? Terri nodded her head, I stood her up stood behind her and made a fist with my right hand, placed it under her belly button, then cupped my left hand over my right then I started pushing into her tummy and pushing up, did it and did it again and again and again and nothing, then the phone started ringing, pushing and pushing and pushing it seem to go on for a long time, and then I realised I had Terri’s feet off the ground and I was slamming her body into mine, then finally I heard her cough, I sat her back on her chair and said can you breathe ok now and Terri nodded, I said don’t try and talk just breathe for a bit. Then the next thing I knew I was sitting back on my chair staring at Terri and eating my dinner, I went into shock I suppose, Terri said a chip got stuck in my throat. Within 5 minutes Terri was all back to normal, it was a pretty terrifying and surreal experience for both of us. I only read on how to do the Heimlich manoeuvre around 2 months before, it’s incredible how things work out. It was not easy to do and terrifying for both of us when it seemed like it wasn’t working.

I am a computer person and over the years have trained vision impaired people on using computers and mobile phones with screen reading software. Terri had never really had a need or a use for a computer so didn’t know how to send an email or search Google and so on. We started to work together on this and I started Terri on searching Google and sending and reading emails. Using a computer as a vision impaired person we don’t use the mouse, because we can’t see it so everything is done via the keyboard. As an example for you, let’s say you are using a program such as Outlook 2019 and you want to send an email. With your mouse you click on new email, then you click on to: and a list of your contacts comes up for you to choose who the email is going to, then you click on the contact name and the email is addressed to that person. So far you have only had to do three things, 1, click on new email 2, Click on to: 3, click on the contacts name. Now doing this via the keyboard 1, press the alt key to open the menu, 2, press the down arrow to get to new email, 3, press the space bar to open the blank email, 4, press shift-tab to cycle up through the different boxes EGG cc and keep pressing this and listen for when you get to the to:.. box, 5, press the space bar on to: now the contact list dialog box opens, now there is around another 5 steps or so to do before you are able to select a contact. So, as you can see there is far more involved in doing this via the keyboard than the mouse. There are shortcut keys to simplify this by a little but that’s an example.

Navigating a website via the keyboard is the same, as in there is so much you need to do via the keyboard. Terri and I had started to work on websites, working on how to navigate a website via headings, using search edit boxes, how to access drop down lists and so on. We had only spent a little time on this and there was much more to go. I had setup a laptop in the spare room for Terri to use and practice on and I remember a day Terri had gone in to practice sending emails and an hour or so later Terri came out and said to me can I use your credit card? Hmm, aren’t you practicing sending emails? Terri said to me no I gave up on that it’s too hard, I have been on Google and I have found some beauty products I want to buy so I need your credit card. I couldn’t believe it and I went in and looked at how Terri got to the website and what was needed to search for the products she found and place the order and so on. What Terri had done to get to the website and place the order was far more complex and difficult than sending an email, but apparently sending an email is too hard. This is the day I learnt motivation is the best teacher. Terri got her products and I was very proud of her.

Around June of 2010 both of us had a bad cough and we went to the Doctors and were told we both had Whooping Cough. We were to go to my Brother Costa Son’s Christening and we didn’t go because of the Whooping Cough. Terri said she hadn’t seen the respiratory Doctor for around six years and the Doctor said due to the Lupus this was no good and that she needed to see them more often than that. Terri made an appointment to see a respiratory Doctor Terri had seen before and Lorraine, Terri and I went up to Brisbane to see him at his practice. I think his name is spelt [McEvoy]. He said he wants Terri to have a Lung Flush and he wants a Lung Biopsy done. He said he is no longer with the Hospital and Terri will need to get it done under a different Doctor. He organised the tests and Terri went into Hospital a few weeks later to have them done. The Doctor that did the tests said that he did not do the Biopsy because he was concerned the lung may not re inflate and that he did do a Lung Flush. At the Hospital Terri dealt with a Doctor, Christopher Zappala. He said that because of the Lupus on the lungs Terri needs to have immediate treatment using a drug called Cyclophosphamide. Zappala said this needs to be done right away. Zappala made an appointment for Terri to come back in two weeks and let him know if she is going to have the drug. Zappala gave us a document to read about the Cyclophosphamide, we were told that this is everything there is to know about the drug and its side effects. Terri later told me that in the past Doctor McEvoy said to her that she should never have any drug stronger than Prednisolone.

When we got home Terri then called Doctor McEvoy and told him that Zappala had said she needs to have intravenous Cyclophosphamide, McEvoy said Zappala is a cowboy and not to do that. Two weeks later Lorraine, Terri and I went back to see Zappala, Terri told him what Doctor McEvoy had said, [minus the cowboy comment] Zappala said that Doctor McEvoy was wrong and if she doesn’t have this drug now that things are going to get worse very soon. When we got back home Terri again called Doctor McEvoy and told him what Zappala had said and asked him what she should do, Doctor McEvoy then said that Zappala is your treating Doctor now and you need to do what he is saying.

Terri was very confused on what to do, Terri asked me what do I think and Terri asked me if she should have the Cyclophosphamide, I said to Terri I don’t know. Terri talked about this with Mum and Dad and all of us were really confused on what to do, one Doctor has said don’t have anything stronger than Prednisolone and the other is saying if you don’t, your lungs are going to get a lot worse very soon. This was a horrible time.

A couple of weeks later, the three of us went back to see Zappala and we all asked about side effects and what could be the danger of having the drug. Terri asked him will this drug affect my eye sight, Terri told him she had lost sight in the past due to having a drug. Zappala said there is nothing in the records that report people have experienced sight loss due to this drug. Again, Zappala said if you don’t have this drug treatment your lungs will fail. Terri agreed to have the drug and Zappala said he will be in contact once he has organised it.

In November we were at a Restaurant and Terri knew the Duo that were playing there, Terri got up and sang a couple of songs with them and they told us about a Karaoke they ran every Sunday at a restaurant nearby. Terri and I started going there on a Sunday and it was a lot of fun.

Terri went into the Brisbane Hospital for the Cyclophosphamide at the end of 2010, I can’t remember what month. It was administered via an intravenous drip. Alan and Lorraine were there as well. After the Nurse had put in the Cannular and started the drip she said, you have to read this and handed us a pile of flyers and booklets. Lorraine started reading them and they said that we had to have a Hospital strength cleaner for the toilet and this needed to be cleaned each time Terri used it, then it said that Terri could not eat garlic and some other foods and more and more do’s and don’ts. We thought what happened to Zappala saying to us he has told us everything we need to know about the drug? None of this was in the paperwork he gave us. Terri said to the Nurse while the drug was going in that her sight was going blurry, the Nurse didn’t react to this and continued the treatment. On the way home we had to buy everything listed on the flyers, gloves, cleaners and masks and so on.

Over the next couple of days Terri’s sight didn’t improve and Terri was very upset about this, she didn’t want to lose the little sight she had left. Terri called Zappala and he said Terri was over reacting and he would see her on the follow up appointment in a few days. When we got to that appointment there was another Doctor in the room we hadn’t met before, he said that Zappala is reading something and will be here shortly. We asked what it was he was reading and the Doctor said he was reading a report of patients suffering sight loss from Cyclophosphamide treatment. When Zappala came in he was more interested in defending himself and saying that his decision to have the drug is the right one and he then said to me that he takes umbridge at me questioning him, I replied to him by saying I haven’t spoken with you, how dare you have a go at me, clearly you are wrong because Terri is experiencing sight loss and now we know it is documented that this can happen and you said it couldn’t. He then left the room and didn’t return, neither Zappala or the other Doctor addressed what can be done to address the sight loss Terri was experiencing. When we left Terri said that Zappala is more interested in protecting himself than helping her.

In the next couple of days we went to see a GP and explained to him that Terri wasn’t happy with the Respiratory Doctor she is seeing and asked him for a referral to see a Respiratory Doctor at the Gold Coast Hospital and he refused, saying that they are very busy on the Gold Coast and you already are seeing one in Brisbane. We then went to see another GP and they gave Terri the referral she asked for.

Early 2011 Terri got an appointment with a Respiratory Doctor Ian Feather at the Gold Coast Hospital, Terri told him about the effects she had from the Cyclophosphamide drug and he ran a Lung function tests and many other tests and Ian said Terri should have 2.6 litres of lung capacity and due to the Lupus Terri only has 800ml of lung capacity.

Ian started treating Terri with a drug called Mycophenolate Mofetil, it was a tablet that Terri would take daily. Ian said to come back in see him in a week to see how she was going with it. Ian was treating Terri for the Lupus on her lungs and he referred Terri to a Neurologist for the Multiple Sclerosis {MS} and also a Rheumatologist for the immune system.

Terri was taking the Mycophenolate and after a few days she said that it was also effecting her sight. Terri had an upcoming appointment with an Ophthalmologist at the Gold Coast Hospital in that week so when we went Terri told the Ophthalmologist that the Mycophenolate was effecting her sight and the Ophthalmologist said you’re taking it to treat the Lupus and if it is effecting your sight that’s just the price you have to pay and she wasn’t going to do anything about it. Terri and I were both disgusted with the attitude of the Ophthalmologist and being Terri had another appointment with Ian the following day, we just left the Hospital and went home.

The following day we saw Ian around 5pm at his clinic at the Hospital and Terri explained to him the sight loss she was experiencing and told him what the Ophthalmologist had said the day before. Ian said he is appalled by the Ophthalmologist’s attitude and said the Ophthalmologist should have contacted him straight away. Ian had his Nurse call to have Terri admitted into Hospital straight away, we could hear the Nurse on the phone arguing with someone and thirty minutes or so later she came into the room and said I’m still working on it. Around 6.30pm the Nurse came in and said she has got Terri admitted and Ian then organised for Terri to receive IV Methylprednisolone straight away. Ian took a call on his mobile around the same time 6.30pm we could tell it was his wife and she and their daughter had been waiting in the carpark since 6pm. He said to her he wasn’t sure how much longer he was going to be and his daughter around ten years old then came into the clinic. Ian stayed with Terri and I until Terri was admitted into the Hospital and he came with us into the Ward and he insured the IV Methylprednisolone was given to Terri, this was around 7.30pm. This is the day we realised that Ian Feather is not only a good Doctor, he is a great human being. We found out later that Ian had written a scathing letter to the Ophthalmologist criticising her attitude and criticising her for doing nothing to help Terri.

Terri told Ian that Terri needs to be tapered off the Methylprednisolone with tablets of Prednisolone due to a attack Terri had in the past because Terri was not tapered off Methylprednisolone, Terri told him the attack lasted for 5 days and didn’t want to risk that again. Ian said he always tapers patients off the Methylprednisolone, Ian did this and everything went well.

I went to the Hospital every day arriving around 9am and most days wouldn’t head home until 7pm or so. Depending on the whether I would either catch the bus there and back or catch a cab. When friends David and Cilla found out that Terri was in Hospital they came down and filled our freezer with frozen meals, this was really nice.

After three daily doses of the IV Methylprednisolone Ian tapered Terri off by using tablet Prednisolone then Terri started to get some of the sight she loss back again. Ian lowered the dose of the Mycophenolate and kept Terri on the tablet Prednisolone and Terri was having no bad reactions and Terri’s lung function had stabilised.

Our weekly routine continued, going out and having fun, we went to a friend’s [John] 50th and he had a friend of his, an entertainer [nickname Tapper] playing guitar and singing at the venue. John said to Tapper I want George and Terri to sing and Tapper came up to us both and said only room for one star here and walked off. As the night went on John again told Tapper he wants us to sing, so Tapper came up to Terri and said I’ll get you up on stage but we won’t sing a song we will just adlib, [I got really scared for Terri and realised that Tapper was trying to humiliate Terri] So he started a rift on the guitar and Terri started coming up with one liners having fun with John and they just kept coming, Terri had the whole place in stiches and laughing their heads off. People came up to Terri later and said you really put Tapper in his place. I couldn’t believe how Terri could come up with stuff like that off the cuff, like everyone else I was really impressed.

I had recently finished working for the market research company and we talked about what we could do working together to make money. We decided we both had a story to tell and maybe we could create a two hour or so talk and include our music performing songs with the guitar and singing with backing tracks and try and get work through motivational speaking. We both were excited about this but not sure how to start.

Terri received an appointment with a Neurologist Monica Badve at the GC Hospital. After a couple of months and after three or four visits with her, Badve said she is consulting with the leading Australian expert in MS Professor Simon Broadley and he wants Terri to be tested for a condition called Neuromyelitis Optica. We went and saw Broadley and Terri had the test done and he said Terri does not have Multiple Sclerosis, Terri has Neuromyelitis Optica. Terri asked how in 1998 did they say that it was Multiple Sclerosis, he said that it’s only been in the last few years that they have been able to test for Neuromyelitis Optica also called Devics disease and NMO. He said the effects of it normally start to show up in your mid-forties.

[NMO, the immune system attacks a substance in your body called myelin — the insulation around your nerves. Specifically, the myelin cells in the spinal cord and optic nerves are attacked. Usually, people with NMO have flare-ups of the disease that may strike months or years apart. Between these flare-ups, people may have some recovery. The protein aquaporin 4 and IgG1 antibodies are involved in the development of NMO].

A short time later we went back to see Monica Badve and she said that Broadley has recommended that Terri go onto a drug called Rituximab, to treat the Neuromyelitis Optica. She said to Terri if you take this drug the likelihood of having another attack will be reduced by 98%. Terri was very concerned about taking another drug and we said to Badve if she is getting her advice from Broadley why don’t we then deal with Broadley ourselves. Badve then transferred Terri over to Broadley and we waited to see Broadley.

Soon after we went to see Broadley and Terri had an MRI scan done. The results of the scan showed that Terri had several Lesions on her Brain including on the Optic Nerve and it also showed that several parts of the Myelin on the Spinal Cord were damaged and this had been happening over many many years. The Lesions on the Optic Nerve is what caused the loss of Terri’s eye sight. We were told that Terri’s immune system due to the NMO is eating away at the Myelin on the Spinal Cord and the brain. It looks like the damage to the Myelin on the Spinal Cord would have been why Terri couldn’t walk in Sydney in the 90s, it looks like this is when the damage to the Myelin started happening.

[Myelin is the insulating layer around the spinal cord, it is made up of protein and fatty substances. The myelin sheath allows electrical impulses from the brain to transmit quickly and efficiently along the nerve cells. If myelin is damaged, these impulses slow down and if there is to much damage to the myelin sheath the electrical impulses cannot get through. ]

Broadley said that the Rituximab drug is the only way to stop the attacks from occurring and this will stop further damage to the myelin on the Spinal Cord and the brain, he told Terri to think about taking the drug and let him know. Terri said she was somewhat excited about the drug helping but also terrified of what it may do.

On 23 July 2011 I proposed to Terri and thankfully Terri said yes. I proposed at the place we met, at the Sharks football club. Terri and I were now engaged, we were very happy and looking forward to living our lives together.

We heard about a lady in her forties Natasha who also had NMO so we went to meat her, she had lost the use of her legs, had lost her sight and lost control of her bladder and bowel., she said Dr Broadly was her Doctor. We spent around four hours with her at her house, she was a very lovely lady and dealing with a lot.

Terri then got an appointment to see the Rheumatologist Julian De Jager, he seemed to be a straight shooter and said his job is to monitor Terri’s immune system.

Our lives went on, Karaoke, going out for dinner, fishing, socialising with friends. We enjoyed living alone, we had our routine, took turns in cooking, one cooked the other did the dishes, Terri was very particular about what foods Terri would eat, each meal had to have a balance of protein and either vegetables or salad. Terri did the clothes washing, I did the bathrooms and toilets, Terri and Lorraine did the groceries, we were having a lot of fun and really enjoying our relationship. We talked about the motivational speaking and a friend David suggested to join a Toast Masters group to develop public speaking skills.

Around November Terri had another attack and Terri’s left arm and left leg became very week. Terri went into Hospital; they did a Lumbar puncture test and for three days they gave Terri more IV Methylprednisolone. The Neurology Registrar Doctors told us about a process called Plasmapheresis also called Plasma Exchange and they said Dr Badve said she would like to try it and see if it will help. They said it will hopefully remove the proteins in the blood that are causing the attacks. They said we have to meet with the Renal Specialist and see what he says. I would go into the Hospital and be with Terri every day, I was starting to learn the Hospital procedures and a little about the drugs they were giving Terri. One day a Doctor walked into the Ward and spoke with the lady in the next bed, [she had told us she had been in Hospital for 5 days just waiting for an MRI scan to be done] she asked him when will this scan be done, he said I have ordered it and we just have to wait till they are ready to do it, she said I have a family and a job and just can’t wait any mor and she picked up her things and walked out of the Hospital. We then started asking Doctors how much does it cost to have a patient in the Hospital per day? the answers varied from $1200 to $2000 per day without any medications and a MRI scan cost around $500, so if we use the average of $1500 per day, that means the Hospital spent $7500 on a patient to carryout a $500 scan.

Terri was waiting to see the Renal Specialist to see about the Plasmapheresis / Plasma Exchange,
[Plasmapheresis removes the blood through a Permacath, circulates it through a machine where the blood is separated into red cells, white cells, platelets and plasma. The plasma which is the fluid content of the blood, is discarded and replaced with a substitution fluid called albumin solution].
We were both really excited about this and it sounded really positive and Terri was looking forward to having it done.

We then met with the Doctor who ran the Renal Dialysis Department, Alan Parnham, he was a straight shooter and told it as it was. He straight out said I don’t want to do it! He said the Plasma Exchange is done by surgically inserting a Permacath. He said a Permacath is a long, flexible tube that will be inserted into the jugular vein in Terri’s neck and 2 tubes will be poking out of her chest. He said they use these two tubes to connect to the Plasma Exchange machine. He said the risk of infection during and after the surgery is very very high, he said the surgical people do their best to sterilise the surgical equipment but infection from not properly sterilised equipment is common and being that I think the process of Plasma Exchange is not going to help with Terri’s condition, the risk of infection outweighs the benefit of the Plasma Exchange. He said I have read all your records and they like to label things and conditions. He said no matter what they tell you, what you have is a very over active immune system. He said now you know what the risks are and I don’t believe it’s going to help you. I will come back in a couple of days and if you still want to try it I will do it. This was not the news we wanted to hear and he left us feeling numb but grateful for his honesty.

When he came back Terri said she wants to do it and he arranged for the surgery and the Permacath was put in. Luckily all went well and the Plasma Exchange was started. They said we can go home and come back each week for the rest of the Plasma Exchange, they said nobody is allowed to touch the Permacath, they said if there is any issue with the Permacath only the Doctors from the Plasma Exchange / Oncology unit are allowed to touch it. They said not the GP or any other Doctor from any other department only the Doctors from the Plasma Exchange unit. They said you have to keep checking your temperature, [we already had a talking thermometer so this was ok], they said you need to make sure during showers its kept dry, you need to make sure there is no bleeding or weeping from it and you need to make sure the caps on the two tubes are not coming loose. They said you can go home now and I got terrified, I said are you kidding! we are not going home until I’m shown how to care for it, I can’t see and I’m terrified because I don’t know what I’m doing. We stayed until one of the Nurses showed me what to do, she showed me and I taped it up as if we were about to do showers and she showed me where and how to check for bleeding and weeping and how to check the caps. The Nurse gave me bags to cover it and rolls of tape and we both felt a little better about this now and we went home.

Terri’s left side was still weak, we managed to get around ok at home, we just took things slow. We went back to the Hospital each week for the Plasma Exchange. They kept checking the Permacath and said we were doing well in caring for it, we took Terri’s temperature each day and gave them the numbers and everything was going well.

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Terri had her last Plasma Exchange on the 5 January, the weakness had improved and Terri was starting to walk a little better improving week after week. On 7 February they removed the Permacath and all went well. They do this by cutting the stiches away and simply pull it out, we heard a pop sound as the tube came free of Terri’s chest.

Terri and I caught a lot of cabs, this was our main means of transport when going out, this was a cab ride we would never forget. Most drivers are great, then there is the clown we dealt with on this day. Terri and I had contacted a Toast Masters group in Arundel here on the Gold Coast and we arranged to go to their meeting on 28 February 2012. We caught a cab to go to their meeting and when we got there, before we got out of the cab, the lady we were dealing with came up and said that when she got to the hall she found they are renovating it and no one had told her so the meeting will not go ahead tonight. We said no problem and we will come to the next one and we said to the driver we want to go back home. The driver said he was having trouble with his subsidy card reading machine and as we drove off he lost his temper over the machine, punching the dash, yelling swearing and screaming, didn’t slow down for the corners and this went on for around 2km, I said to him he needs to calm down and when he didn’t I yelled at him to pull the car over, he did and Terri and I got out. He asked me for his money and I said not until another cab comes to pick us up. He took off and Terri and I were left on the side of the road and had no idea where we were. We walked for around 3km till we found someone and they helped us to a servo where we called for another cab. We put in a complaint with the Gold Coast cabs company and this did nothing, so we then put in a complaint to the QLD Passenger Transport complaint department and this went nowhere as well. Both of them said they did not look at the cab camera footage. Left with no other way to have the driver and cab company held responsible for this behaviour, we put in a discrimination complaint and around a year later we had a mediation meeting. During this meeting we had a legal aid barrister helping us, I asked him why would they not look at the camera footage in the car, he said they probably did but won’t admit it. The outcome was, GC cabs paid us $2000 the owner of the cab paid $2000 and the driver paid $1000. Terri and I were both shocked and found it hard to understand how dysfunctional this process was and how little protection we had as passengers.

We kept on living our lives, Terri had not yet made a decision about whether to have the Rituximab drug, Terri said she wants to talk with Julian the Rheumatologist before she makes a decision.

All the Doctors were saying that if you take Prednisolone over a long time there are really bad side effects, thinning of the skin and thinning of bone and clubbing on the fingers and toes being some of them. So the Doctors were saying need to stop taking Prednisolone. Terri’s skin was beautiful, Terri had severe clubbing on her fingers [clubbing is, a dip forms on the finger behind the nail up to the first knuckle] The Doctors ran a bone density scan and Terri’s bone density was really good, this surprised all the Doctors because Terri had been taking Prednisolone for over twenty years.

We joined Toast Masters and went to their meetings and were learning the art of public speaking. Terri was a natural and surprised everyone on how confident she was when she got up and gave a talk and also how well Terri could come up with a story off the cuff.

Terri spoke with Julian and he said at the moment the Rituximab is the drug they are having the most success with in treating NMO and he said to go ahead with the Rituximab. So, Terri let Dr Badve know and she was going to arrange it. Dr Badve ran some tests first to make sure it was safe for Terri to have the Rituximab and she said Terri’s CD 20 count is to low and we will have to wait, Dr Badve said this is to do with the B cells.

Around June 2012 I put in an application for a seeing eye dog with Seeing Eye Dogs Australia, they said it was around a twelve-month waiting list.

Ian had Terri have a lung function test at the Hospital every 6 months or so and Terri had appointments every two months or so at the Hospital with the Specialists, Ian for respiratory the Lupus on her lungs, Julian the Rheumatologist for the Immune System and Broadley for the NMO. Terri would see the GP in between these appointments, for scripts and a general assessment on how things were going. Lorraine would be with us at most of the visits with the Specialists.

We found out about an organisation that were a charity run by volunteers providing transport for people who have a disability. We started using their service, they were great and half the price of a cab.

In July Terri had another attack, this time her right side was effected. Terri said her right thigh feels dead and her right hand feels numb. We went to Hospital and they again started giving Terri IV Methylprednisolone. Terri was in Hospital for a week and Terri again went through surgery and had another Permacath inserted and we then went home and went back each day for the next four days for the Plasma Exchange. Terri couldn’t walk on her own again but this improved again week by week.

Early August Terri started on the Rituximab drug, we would go into the Hospital for around 6 hours and Terri had the drug via an IV.

Around mid-August I got a call from the Seeing Eye Dogs trainer telling me they have got a dog that is a match for me. He said the dog had been assigned to someone and he has come back into the program to be re assigned. He said his name is Ugg, a yellow lab nearly three years old and he is a big boy he is tall and weighs around 40kg. I fell in love with him straight away, the trainer said I need to go to the Gemini resort in Caloundra on the Sunshine coast for the training with the dog, he said I need to be there Monday 24 September. He said I will be there for three weeks, I said Terri is not well and I said I didn’t want to be away from Terri for that long. He said they can cut the training down to a week in Caloundra and do the rest at home. Woohoo I told Terri the news and we were both excited.

In early September Terri had another attack this time it was an Optic Neuritis attack, we went to Hospital and they said they will give Terri more IV Methylprednisolone and also more Rituximab. They said we can go home and come back in for the drugs on the scheduled days.

Depending on what Neurology Doctor was on shift at the time we arrived at emergency, Terri would be treated by that Doctor and some Doctors would say they will give Terri three daily high doses of the Methylprednisolone and nothing after that, we were constantly having to ask them to Taper Terri off using Prednisolone and we would explain why telling them about the prior attack Terri had from not being tapered off but a lot of the times they would get upset stating we are the experts and this is how we do it. We would always argue until they did what we asked. [It was really frustrating and scary having to argue with the people you are relying on to help you, and it's all over the internet that you must taper off high doses of Prednisolone which is Methylprednisolone in the liquid form, so we didn’t understand why they didn’t want to taper off]

In October Terri started going to the Hospital for Physio, I think we went once a week.

Our friend John told us about the Queensland Community Support Scheme [QCSS] this is a Government scheme that we could get help at a subsidised rate to take us out during the day to shops and help with cleaning the house. We had seen the Blu Care ads on the tv and decided to give them a call. When we called Blue Care, they said they had availability and after a couple of months of their red tape we started receiving services on Tuesday the fourth December 2012. They sent a PC [personal carer] by the name of Sadie to take us out and we had three hours between 9am and 12pm to go shopping, this was once a fortnight and on the following Tuesday a lady would come for one hour and clean the house. At the end of each month they would send us the invoice and this is when I decided to start using internet banking and we both set this up.

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With Christmas and new year celebrated we got on with 2013. Our routine now included doing our grocery shopping each fortnight with a PC [personal carer] from Blue care. The PC and Terri would be ahead with the grocery trolley and Ugg and I would be trailing behind. Blue care were already proving themselves to be a mistake in choice, by the end of January we already had to contact them a couple of times and explain the cleaner you sent said they can’t use the vacuum cleaner because they have a bad back , [it’s a regular vacuum on wheels with a hose] and one of the PC’s for shopping came in their own car and weren’t happy about me taking Ugg my seeing eye dog with us so we had to ask them not to send those people again.

One night in early February Terri told me her legs were starting to feel strange, they were feeling num, Terri said it feels like I’m wearing wet genes and my legs are feeling very heavy and hard to move, Terri said she is feeling numbness from the waist down.

I’ll never forget that night, Terri cried all night, this was the day we realised the NMO disease was starting to do some real damage.

We went to the Hospital and they said Terri is having another attack and was admitted into the Neuro Ward under the Neurologist Koshy George, and he gave Terri a drug called Intragam via an IV. After Terri had her dinner Ugg and I went home.

When walking from the Hospital to the bus stop in the past, using my white cane it would take me around 20 minutes but now with my boy by my side leading the way we were doing it in 11 minutes. When coming back to the Hospital once we turned into the Hospital and entered the doors, he knew he was about to see his girlfriend and his pace picked up and he most times would find the room Terri was in without any instructions from me.

The next morning Terri said I can’t use my hands. Terri said her hands were num and couldn’t feel anything through them. We asked the Doctors what’s going on and they said it’s due to the attack. We didn’t except this and said to them if this is correct then there will be a new lesion either on the spine or brain to account for this. We asked for an MRI to be done to confirm this and they did an MRI and a Lumbar Puncture. After the MRI was done, they said there are no lesions that account for the loss in Terri’s hands and again said but this is due to the attack.

There are six beds in this Ward, as you come in the door to the Ward there are three beds along the left wall and three beds along the right wall, Terri was in the first bed on the left, I was sitting on a chair next to the bed against the wall next to the door, we heard Doctor Monica Badve talking with the patient in the bed on the far right, when she finished with them she walked over to Terri and leaned over to Terri and said I’m really sorry Terri I never wanted you to have the Rituximab and she walked off. I couldn’t believe what I just heard, I asked Terri what did she say? And Terri said she said I’m really sorry Terri I never wanted you to have the Rituximab. We were both in shock.
Terri and I talked about this and didn’t know what to do, we thought if we ask her about it, she would just deny she said it and each time we saw Badve after this she was always with someone else.

They continued to give Terri the Intragam for five days, and then gave Terri three days of IV Methylprednisolone to try and get some use back in her hands.

They then said there is nothing more we can do for you in Hospital and said go home and wait to see what happens. Terri could not walk on her own so the Nurse wheeled Terri in a wheelchair to the front of the Hospital and I lifted Terri into a cab and we went home.

I had to help Terri with walking and a friend of ours loaned us an old wheelchair. Terri’s legs were still strong but Terri struggled to move them. I put a plastic chair in the shower and helped Terri into the chair and I helped Terri shower. Every few days Terri would be able to walk a little better but Terri said it still felt like waring wet genes and her hands felt like she was wearing baseball gloves.

Terri again had surgery and another Permacath inserted, each time they put it in a different spot and Terri started Plasma Exchange again as an outpatient. After this they gave Terri more IV Methylprednisolone and then wanted to give Terri more Rituximab. Terri told them that didn’t want any more Rituximab and was concerned about it.

We would either get a taxi to the Hospital for the Plasma Exchange or use the charity service if they were available, we did this for around three months.

We went and saw the Rheumatologist Julian and during the visit we asked him about the Rituximab and we said to him we are concerned about Dr Broadly, we said that we looked him up and from what we can find that he has been deemed to be the Australian leading expert on MS and NMO due to a research paper he wrote. We said we are concerned that we are not sure how many patients he has treated himself and his experience is just from the research rather than treating patients. He said I understand your concern, we then asked who can we turn to to have a look and make sure that they are doing the right thing. He said there is a Neurology Doctor in Brisbane Dr Hogan.

When we got home, I looked up Dr Hogan and I came across a phone number and called it and it was him that actually answered the phone. I explained who I was and started telling him about what was happening for Terri, I spoke I reckon for around ten minutes and he just listened, after I gave him all of Terri’s history and what our concerns were, I didn’t mention any Doctors names just Terri’s attacks and medications given. He said if you get me a report from the Neurologist, he said not from the registrar make sure it’s a detailed report from the Neurologist and I will look at it and if I think there is any concern, I will contact you. He then asked me how did I get this number and I said I googled you.

I contacted Dr Badve and asked her to write a report for Dr Hogan and she said no, she said Terri already has a team looking after her and there is no reason for a second opinion.

One day while Terri was having Plasma Exchange Dr Broadly came to see her and he said to me that Terri’s NMO is very Aggressive and when you have had your Thymus removed you are one hundred and fifty times more likely to develop NMO.

The next time we saw Badve I asked her again for a report for Dr Hogan and again she said no, I said I don’t understand why you won’t do this, Julian has asked for this to be done and you won’t do it, she said Julian asked for this? and I said yes. Around a month or so later we got a letter from Dr Hogan with an appointment to go and see him at a Brisbane Hospital. Lorraine took us up and we saw Dr Hogan, he said after looking at everything and if Terri was his patient, he would be doing the same thing, using the Rituximab, Plasma Exchange and Methylprednisolone. So, Terri agreed to have the Rituximab again.

The Doctors told us to call our service provider and get them to assist us with getting a Wheelie Walker and Terri needs Massage Therapy and Physio. I called Blue care allied health and told them the above and a few days later an exercise Physio named Uric came to us. He walked in with a Wheelie Walker and said we are loaning this to you. We asked him about the Massage Therapy and he said we don’t do that. The Wheelie Walker was a very old one and we soon realized the brakes didn’t work properly, but it was better than nothing and Terri could now get around the house on her own.

Terri couldn’t hold a coffee cup or use a knife and fork but Terri could hold the handles of the Wheelie Walker and walk slowly.

Now remember, that Ugg my seeing eye dog would trot rather than walk, he liked to go quick, I’ll never forget the day we all went for our first walk with Terri now using the Wheelie Walker, I had Ugg’s harness handle in my left hand, then I grabbed the front of the Wheelie Walker behind me with my right hand and then looked down at Ugg and said go slow, he looked to his right back towards Terri and then looked straight ahead and strolled off walking at a slow pace, I couldn’t believe it, I expected to have to keep holding him back but he knew what was going on and walked accordingly. We were off and nothing was stopping us now.

We were still going to the Sunday Karaoke when Terri was not in Hospital and feeling up to it but we stopped going to the Thursday night one at the Sharks. We still went out with Alan and Lorraine and spent time with friends. When we went out most times, we would take the wheelchair because Terri couldn’t walk far.

Around mid-June Terri had another dose of the drug Rituximab and the next day Terri couldn’t walk again. We went back to the Hospital and they said Terri is having another attack and gave Terri IV Methylprednisolone.

This time Terri went into the Rehab Ward and was there for around 2 weeks. I was at the Hospital every day and I helped Terri with the Rehab Therapy where I could and I helped Terri with eating her meals. [Terri felt humiliated when other people would feed her so Lorraine or I made sure we were there to do it] Terri was in Rehab for my birthday and Lorraine brought in a Carrot Cake and we had a party with all the other patients.

Terri hated being in Hospital and said to me I want to come home for the weekend. I knew Terri hated being in Hospital and I said to her if you come home for the week end will you come back? and Terri said yes. I believed the Rehab was the best thing for Terri and wanted her to continue with it. So, on the Thursday I went and spoke with the Rehab Doctor and said Terri wants to come home for the week end and she has promised she will come back Monday. The Doctor said she can’t go home because she can’t walk and they have a duty of care and can’t release her while in this condition, I told him we have been living like this for months and said to him go and check the records and you will see that the Hospital has released Terri in this condition and we have gone home and managed with Terri not being able to walk many times. Later he came back to me and said he will not release Terri with consent but if we agree to come back on Monday, he will not cancel her bed in Rehab. I said to him Terri promised me she will let me bring her back either Sunday night or Monday morning.

Friday afternoon Terri and I went home and it was great to have Terri home again, we had dinner together and spent Saturday fluffing around the house. Saturday night after dinner lying in bed Terri said to me, I’m not going back, I said it’s the best thing at the moment to be getting the Physio and Rehab but Terri was having none of that and said I’m not going back.
[Hmm, I think I’m the only one who didn’t see that coming!]

I said to Terri well we have to go back to the Rehab Ward to get the rest of your things and you are coming and you can explain to the Doctor why you are not going back. On Sunday I called the Rehab Ward and told them what Terri said and I said we will come in the morning to pick up Terri’s things. So, on Monday we went to the Hospital and spoke with the Doctor, he said it’s really important to keep getting the Physio but he couldn’t talk Terri into staying, I tried again too but didn’t want to distress Terri too much. He told us about a program called the Community Rehab Program, he said it’s a program for OT and Physio done at the home but it only goes for eight weeks or so.

When we got home, we called the Community Rehab Program and they sent out an OT once a week and a Physio once a week. They sent a Physio by the name of Pete and he was great. He worked really well with Terri and Terri did get some gain from him. This unfortunately only went for eight weeks.

During a visit with Dr Broadly we told him that we had found out that Natasha the other lady with NMO had regained some of her sight back and what treatment was she on, Broadly said it was the same but Terri’s NMO is much more aggressive. He said we will keep going with the treatment plan and hope for no further attacks.

I again called Blue Care Allied Health and this time spoke with someone else. I told them about Terri needing Massage Therapy and they said that they do have that service but you have to come into the office to have it done, I said I have done a Remedial Massage course and I have a Massage table and if the Physio likes can come here to do it and use my table, she said Uric has a bad back and needs to use the electric table. I then realised that she was talking about Uric the Physio we saw before and he said they don’t do the Massage Therapy, I asked why did he tell us you don’t do it, she had no answer. I then asked her about Physio help and she said she will have their Physio Arron call us.

So Terri and I went in to Blue Care for the Massage Therapy with Uric, once a week for five weeks I think it was but Terri really didn’t get anything from it.

We bought an emergency pendent and phone for home, so if I was out the back or taking Ugg for a walk and Terri needed help, Terri could press the button and it would call me first then 000. The pendent hung around Terri’s neck and it had a large button and Terri could press it pressing it between her two hands, it worked well. We also put a key safe out the front and a message on the emergency recording with the code for the key safe, so when it was answered by 000 it had all the details on it, house address and so on.

The Blue Care Physio Arron came to see us and said they have a program run at their office called, Find Your Feet. He said Terri would not be able to attend this program because Terri is vision impaired and she may bump into someone with the Wheelie Walker and he will send one of their Support Workers out once a week to carry out Physio with Terri at home. The following week on 29 November a Blue Care Support Worker a lady named Gail came for the Physio and took Terri for a walk around the block, it took around 15 minutes. I said this isn’t enough and Terri needs more Physio than that, she said that is all they can provide and she will be back next week.

I called ACAT the [aged Care assessment team] who also look after people with a disability to try and have Terri assess to get her more funding for Physio. They told me that they won’t come because Terri still has more services through the QCCS program she hasn’t used, but they couldn’t tell me what these were.

February Terri started having some trouble breathing and we went to the new Gold Coast Hospital [it was opened in September 2013] and Terri was admitted in the Respiratory Ward under Ian Feather. When Terri was first taken up to the Respiratory Ward I and Ugg went with her like we always do, but this being the Respiratory Ward we thought I may have a problem going in there because of the dog, we wondered about patients with respiratory issues and if they would let me in. In the new Hospital most of the rooms are single rooms, so we sat there quietly chatting and every ten minutes or so a Nurse would come in and say oh I heard about your dog can I pat him. Then a lady walked in and said I am the Nurse Unit Manager I need to talk to you about your dog, I thought oh here we go she is going to say we have a lot of patients with allergies in here and you can’t bring the dog in. But what she said was, I have a problem with your dog, I keep losing my Nurses coming in here to pat him so I’m going to keep your door closed. We laughed and all was good.

Ian said it’s a flair up of the Lupus and after more doses of the Methylprednisolone Terri was breathing well again. Ian said that Terri may struggle to breathe for a moment but this should pass and if this does happen at home to call for an ambulance just in case Terri can’t breathe for an extended time.

While we were in the Respiratory Ward, we asked the Nurses for a Wheelie Walker so Terri and I could go for a walk, when the Nurse arrived with the Wheelie Walker, I checked it out and said wow this is a Rolls Royce. The Nurse was surprised and said this should be the same as yours it’s just a standard Wheelie Walker. We said ours is much older, no ware as sturdy and the breaks on this one work really well. The Nurse said your service provider should have got you one from MAS, we asked what is MAS, she said it stands for medical assistance scheme, I said the one the service provider Blue care gave us is the old broken down one I just told you about. She said get back onto them.

When we got back home, I called Blue Care Allied Health again and asked them why did you give us an old broken-down Wheelie Walker and not a new one from MAS,
she said you are not entitled to one because you have a wheel chair from MAS,
I said no we don’t and I have never heard of MAS till now,
she argued with me saying we can’t have one,
I asked her to send me the paperwork she is going from stating we have a wheelchair,
she said ok and put me on hold,
on return she said she can’t find it and I said because it doesn’t exist.
I asked that a request be put into MAS for a new Wheelie Walker.

A few days later Uric arrived with the MAS paperwork to sign and he told Terri off for complaining about the Wheelie Walker he loaned us. He said you shouldn’t have complained I did you a favour by loaning it to you, I was in another room and I overheard this and came back in and I went right off on him, Terri signed the paperwork and he left. The new Wheelie Walker arrived sometime in March.

Gail from Blue Care Allied Health was still coming every Friday morning and taking Terri for a walk around the block, again I kept saying to Gail this is not enough and we need to talk about what else can be done because Terri needs to get stronger to be ready for the next attack and better recover from it.

I again called ACAT to try and have Terri assessed but got the same story, you haven’t used all your services but they couldn’t explain to me what these were. This was really frustrating.

Terri’s hands now were in a way where Terri could pick up a cup using both hands but Terri couldn’t use a knife or fork. Terri wanted to do the dishes each night and one day I noticed the sponge had been cut through to the scour, I had used a carving knife and this happened when Terri was washing it. So, we learnt we had to be mindful of this sort of thing. Also, at a visit with Broadly he told us that heat can exacerbate the NMO so we put in an aircon and were also really mindful of this from then on.

When we would go shopping Terri would hold onto the shopping trolley and we would go slow, Terri and the PC at the trolley and me and Ugg trailing behind, it was a struggle keeping Ugg behind, he always wanted to be the leader. One day while grocery shopping, we got to the checkout and I went up to the trolley and leaned on it to talk with Terri, my hand felt something in the trolley and when I grabbed it it was a frozen meal or something like that. I looked at the PC and said what’s this, she said oh that’s mine, I looked at her with a look of what? And she said I’m really sorry George. This is the day we realised it looks like we had been getting ripped off by the Blue Care PC. I wonder how much of her shopping we had paid for over the last year or so. We told Blue Care what had happened and they never sent her again, I know she wasn’t fired from Blue Care. This now would be around the sixth PC we had to complain about and tell Blue Care not to send again, this was getting to be beyond a joke.

I was spending hours on the computer looking for answers and alternative ways of Terri fighting this disease. We had already seen four or so Naturopaths and these went nowhere but cost a lot of money. Money is nothing if it helps but none of it did, but we kept looking and trying.

We even contacted the MS group here on the Coast, we were told they had received funding to setup a gym to assist people with MS. We went down to have a look at it and it had Walking machines, Rowing Machines and so on. They said Terri couldn’t attend because Terri is vision impaired, they wouldn’t even meet with us, we couldn’t even get to talk with them. I wanted to put in a complaint about them but Terri wouldn’t let me, Terri just said stuff them! So, I had to let it go.

Terri was having Rituximab every month or so and Terri had another attack and this time Terri’s legs were affected again, again in Hospital and more IV Methylprednisolone. Again, we had to argue with the Neurology Doctors to taper Terri off the Methylprednisolone. It was ok if Terri was admitted under a Neurology Doctor we knew or had dealt with before but all the new ones would say no we don’t taper off and we are the experts and so on. We would ask them to look at the records and we would always win the argument but it was very tiring and frustrating.

Another MRI was done and more damage had been done to Terri’s Myelin on the spinal cord. Terri’s brain was sending signals to her legs but the signal was not getting to her legs because of the damage done to the myelin on the spinal cord. Terri was losing more and more control of her legs. After a while Terri could start to walk again but it was harder than before.

Soon after we saw Ian [the respiratory Doctor] he said Terri’s lungs are stable and doing well. We told him about how we have to argue with the Neurology Doctors to taper Terri off the Methylprednisolone, we asked him if there is a way we can have it put on Terri’s file, he said if we do the Doctor still has to read down the file to wherever that note has been put in to be able to see it, he said the computer system is not very good and you have to just keep telling them.

Around the beginning of May Terri had another attack, again effecting her legs and this time effecting her bladder and Bowel control. Terri spent around another 10 days in Hospital having three doses of the IV Methylprednisolone and they again operated and inserted another Permacath. This time the Plasma Exchange was done differently. At the new Hospital the Plasma Exchange department was run by a man named Nick and they had a new Plasma Exchange Machine. The old one would pump the blood into a filter and this would remove the proteins they wanted, now the new machine pumped the blood into a bowl that spun and separated the blood cells, Nick said you can see the different colours of blood cells running up the wall of the bowl as it was spinning and they just setup the suction pump over the line of cells they wanted to remove. Nick said this type of machine has been around for years and they upgraded the old one to this one when they built this new Hospital.

Terri was still struggling to walk and now needed to use Incontinence Pads. When Terri came home, we hired a Commode Chair from Red Cross and asked Blue Care Allied Health to put in a request to MAS for a Commode Chair and a new Wheelchair, they said they have to send out their OT Penny to write a report to then put in the request. In the mean time we used the old Wheelchair that had been loaned to us. When we went out somewhere, I pulled the wheelchair backwoods, I had Ugg’s harness handle in my left hand and the left handle of the wheelchair behind me in my right hand and off we would go. I was looking where we were going and Terri was looking backwards keeping an eye on where we came from.

Terri said when she is in the Wheelchair people talk to her differently, Terri said people talk to her like she is a child and Terri said she hated it. So, Terri wouldn’t let people do this and make them talk with her the way Terri deserved.

Terri, Ugg and I would go grocery shopping, we would clip the Wheelchair to the back of the shopping trolley and we would shop with the Blue Care PC. We now had three Blue Care PC’s that we worked with, Blue care didn’t like to send the same PC’s all the time but we said we only want to work with these ones, Linda, Ria and Joan. Blue Care were really being difficult to deal with. We had many situations with Blue Care Management and Staff, one of them was, a PC had taken us grocery shopping and when we got home I was putting the shopping away and I noticed a bag of groceries was missing and the PC had already left, I called Blue Care and advised them what had happened and they said that we will have to wait till next fortnight to go back to the shops, I said to her I am saying that the bag is either at the checkout or still with the PC, again she said that we will have to wait till next fortnight to go back to the shops, [I couldn’t believe what I was hearing] and asked her to contact the PC and see if it is still in the boot. She said I will and get back to you, she didn’t get back to us till the next day and she said nothing was found. We lost a bag of groceries around $40 worth. Working with Linda, Ria and Joan we didn’t have these problems.

We contacted Blue Care Allied Health again and asked for Arron the Physio to come out and see us again. When he came, he came with Gail on the Friday and we said to him that Terri needs more Physio than what she is getting with Gail walking around the block once a week, he again said that Terri cannot attend the Find Your Feet Program because she is vision impaired. I said to him that Terri needs more than she’s getting and what you have said to us again is that Terri cannot attend your Find Your Feet Program because Terri is vision impaired. I said to him I am now going to go and get on the computer and submit a discrimination complaint against you and Blue Care, [he seem to lose a bit of his smugness then] I said I don’t want to do that I just want what Terri needs, I said Terri needs more than fifteen minutes walking per week, Terri needs hand, arm and shoulder Physio as well as more leg Physio. I asked him who runs the Find Your Feet Program, he said Gail, I asked what day it was, he said Thursday, I asked what happens in the room you run the program in on a Friday, he said nothing, I said so then Gail drives from your office to here each Friday, Twenty five minutes to get here, then fifteen minutes’ walk with Terri then another twenty five minutes back, that’s sixty five minutes. I said why can’t Terri go into your office on the Friday and spend that 60 minutes getting the Physio from Gail that Terri needs? He then said “yes we can do that”, I said “so we will start next Friday” and he said “yes”. Gail then left and Arron took Terri for her slow walk around the block. [We couldn’t believe that they didn’t come up with this themselves six months ago when we asked for Physio help]

Monday Terri had another attack, we went back into the Hospital and they gave Terri more IV Methylprednisolone and Plasma Exchange and this time Terri couldn’t move her legs at all. We kept waiting for a bit of movement but day after day and more IV Methylprednisolone and Plasma Exchange Terri still couldn’t move her legs at all. They did an MRI and one of the Doctors said that the entire length of Terri’s spine is coloured [I can’t remember if he said it is all white or yellow] because of the amount of myelin that is damaged.

Terri then went into the Rehab Ward and they continued with the IV Methylprednisolone and Plasma Exchange. They said the way it works in Rehab is, depending on what condition you have as to how much Rehab time you can get, so in Terri’s case, they said four weeks of Rehab is what they will provide.

I was there every day and they let me go in with Terri during her Rehab sessions, Terri tried really really hard but day after day still no movement in her legs. A lady ran the Rehab Unit and a man was her 2IC, I can’t remember their names, they were both great and really tried hard for Terri. After four weeks of Rehab Terri had no improvement and we had to go through a request to extend the time in Rehab and Terri got approved for another three weeks. Terri tried and the Physios tried really really hard but there was no improvement in Terri’s legs. So, after seven weeks they discharged Terri and we went home.

Close

Terri often sat at the kitchen table sobbing and was trying to come to terms with what she was going through. What Terri went through slowly losing control of her body was horrible, heartbreaking, sole destroying and a million other words I don’t know how to pronounce or spell! I broke down one night too, after showers I had just put Terri’s pyjamas on and put her in the Wheelchair and I just collapsed sobbing with my head on Terri’s lap and Terri was stroking my head telling me everything is going to be ok. I’ll never forget how strong Terri was that night stroking me and comforting me.

For around three months or more we didn’t go out at all to Karaoke or any socialising with friends, I understood Terri needed time to come to terms with what was happening to her, I said to Terri we need to start going out again, we can’t just stay at home all the time and we are both social people and we need to go out. I don’t want you just sitting around getting more and more depressed, so before any of that begins, lets go out and live our lives. I understood how hard this would be for Terri, not being able to pick up your drink to drink it, not being able to feed yourself and being terrified of not having control of your bladder or bowel. I knew we needed to except this as our new norm and get on with our lives. At the same time though we never gave up on having some improvement.

We got the new Wheelchair and Commode and when Terri felt up to it we went to the Sunday Karaoke again and things were working out well, all the people we knew there were really supportive and helpful to us both. Everybody loved Terri, one day we arrived and I did our normal routine, we pulled up in the cab, I got out of the back seat of the cab, got Terri’s Wheelchair out of the back, lifted Terri from the front seat and into the Wheelchair, then I got Ugg out of the back seat, then pulling the Wheelchair backwards we would go into the club, then I would tether Ugg to a chair, then position Terri at the table, then I would go and sit on the chair I tethered Ugg to, then one of the people we knew, Graham came over to say hello and we started chatting, then one of the staff came over and said George do you want your dog? This is when I realised, I broke our routine, I forgot to tether Ugg to the chair and straight off into the kitchen he went.

We went to see Julian the Rheumatologist and during the visit we asked him if there is any chance that any of the drugs that Terri has been given could be the cause of anything that has happened? Julian said no unless it was an Immunoglobulin, we said like Intragam? Julian said yes. We then said to Julian look at the records and that is what the Neurologist Koshy George gave to Terri the day before Terri lost the use of her hands. Julian didn’t say anything, but we all now knew this was a huge mistake by Koshy George. We always suspected this and questioned them when it happened but now we knew.

[What we now believed was that Intragam is a drug used to treat MS and should not be used to treat NMO especially when you are positive for aquaporin 4. We believe that when Koshy George looked at Terri’s records, he read MS but didn’t read enough of Terri’s record to see that Terri actually had NMO and treated Terri for an MS attack. The question now was what can you do about that]

We contacted the Hospital and asked them to send someone out to ensure that when I was transferring Terri from the bed to either the commode or wheelchair that I was doing it the best way. They sent an OT, Rusty out the same day and he gave me a couple of tips in lifting Terri but overall he said we are doing well, he did say though you should have a hoist here.

Over the last few months, I had been talking with a lady Juley from DSQ and Juley was trying to help with Physio funding for Terri. I told her where we were at now and what Rusty had said about a hoist, Juley said you can get one through MAS but this will take some time, Juley said leave it with me and I will see what I can do.

Being that Terri was now confined to either the bed or the wheelchair, we were mindful of bedsores and blood clotting so we contacted Blue Care Nursing and asked them to come out to check for these. When a Nurse Chris came the OT Penny came as well, we spoke with Chris and asked her if they can come a couple times a week and check Terri’s body for any signs of sores or blood clotting. Chris said to Terri we can shower you as well, Terri said no I don’t need you to shower me, Chris said again while we are here I think we should shower you, Terri said no I don’t want you to shower me, George and I are doing fine with showering and again Chris said we should shower you while we are here. I said ok let’s say you guys are going to shower Terri, Terri is lying in bed, how are you guys going to get Terri into the commode, Chris said well you can lift her onto the commode, I said ok then you need to lift the commode over the rise into the shower, how are you going to do that, Chris said well you can do that as well, then I said well while I’m there why don’t I just shower Terri. So after all that we arranged for the Nurses to come Monday and Friday to check for bedsores and blood clots, but no showering, starting this Monday.

Juley called us and said she has arranged for a hoist, she said she contacted an organisation called FSG and they said they will fund the hire of a hoist till we can get one from MAS, she said she has to get an OT to sign off for it and she said she contacted Penny from Blue Care and asked her to do this and the hoist should be delivered Friday. Juley also said you need to contact ACAT again and tell them that Terri’s condition has changed and you want an assessment. We contacted ACAT and this time they made an appointment for an assessor to come and see Terri.

Friday the Hoist arrived and Monday morning the Nurses came and so did the OT Penny, we were talking with the Nurses and they were telling us about creams to use and so on, they were really good, I then walked into the bedroom and found Penny lifting the bed and putting these big round things under the legs, I said what are they? She said the bed needs to be raised and I’m putting these under the legs, she said you have to pay for them and there around $100. [I looked at them and they were huge and poked out the side of the bed that far I wouldn’t be able to get the Wheelchair or Commode beside the bed, she only had four of them and it’s a six leg bed] I said who said you could do this? I said look at this I won’t be able to get the Wheelchair or Commode next to the bed now and who authorised you to spend $100 of our money? I told her to remove them and to never make decisions for us, I said you can’t come in here and start changing things without talking with us first. Penny then took them out, then went and took the battery off the hoist and said you’re not allowed to use the hoist and she said I’m going to go and talk to my supervisor and get back to you and she left. I told Terri what had just happened and we both just shook our heads and said, who are these people!

That afternoon Rusty the OT from the Hospital called us and asked how are we going, we told him that we got a Hoist and told him that Penny has taken the battery for it and we can’t use it. He said he couldn’t believe it and said leave it with me. The next day Rusty called and said he has got the battery from Penny and is coming to us this morning. When he arrived, he showed me how to use the Hoist and I hoisted Terri from the bed into the Commode and back onto the bed with no problems.

Terri and I talked about Blue Care and all the crap we have copped from their Physios not allowing Terri to go to the Find Your FeetPprogram and the old Wheelie Walker and not wanting to do the Massage Therapy and not providing the Physio we asked for and now the behaviour of the OT, we decided enough is enough and we put in a complaint to the ombudsmen.

The ACAT assessor came and straight away said Terri qualifies for a level four Home Care Package. This was great news for Terri because this meant Terri would be able to get more Physio and we could get away from having to deal with Blue Care. All we had to do was find a Service Provider that had a level four package available.

We went online and I got the CDC Home care package operational guide lines and read it. This is the government book on how service providers are to run CDC home care packages.

We decided that we should have someone help us with this and after all that has happened it would be good to also have a witness to see what we are copping from Blue Care. We called an advocacy agency and they sent a lady out Li, we explained to her all that has happened with Blue Care and Terri has now been approved for a level 4 home care package. She called the service providers she knew of that had the type of services Terri needed but couldn’t find one that had a level four package available and she said there is a long waiting list for these packages.

[The government provides funding for the packages, lets say on the Gold Coast they decide they will provide Four Hundred level One packages, Three Hundred level Two packages, Two Hundred level Three packages and One hundred level Four packages, {the higher the number the more the funding the package has} then service providers such as Blue Care say to the government, we have the staff, nursing, OT’s and Physios and personal care staff to manage and provide forty-five of the level Four packages so the government give them those packages to provide. Then Blue Care find a client who requires a level Four support to live in their own home and they give them the package, now the only way that package becomes available for someone else is when that person either goes into a Nursing Home full time or passes away. That is why there is a waiting list to receive a package]

Terri started getting a cramping pain in her legs, the pain was excruciating and Terri would scream out in pain, I grabbed Terri’s leg and rubbed it like you would a cramp, the muscles in her leg were so tight it was like her leg was about to explode. We went to the Hospital and they said it is due to the signals the brain is trying to send down the spine and because of the damage to the Myelin the signals are triggering the nerves in the leg muscles. They gave Terri a drug called Lyrica and said we need to slowly increase the dose and from what I can remember One Hundred and Eighty was what they wanted to get up to. I can’t remember what level of Lyrica they started Terri on, the attacks kept happening and it was horrible to watch her go through it, they got up to One Hundred and Eighty and it still kept happening and Terri’s urine had a really vial smell to it and Terri was getting drowsy from it.

Broadly then changed this and put Terri on a drug designed for people with Parkinson’s, I can’t remember the name of it I know it began with a M, and it did nothing and it then started in Terri’s arms. Terri’s arms would be beside her then the attack would hit and her arms would slowly move up till her hands were nearly touching her face and the pain sounded and looked excruciating. Terri was getting these around 3 times a week or so, it was horrible.

Terri was still having the Plasma Exchange but really not sure if this was helping in anyway, but you dare not stop in case something else happens.

We went to the Sunday Karaoke when Terri felt up to it and we started having friends over and we were getting on with our lives. Terri said it was harder singing from a sitting position, however Terri still sounded great.

This is a recording Terri & I did at home in March 2015

The Ombudsmen called and spoke with us and said they have spoken with Blue Care and Blue Care would like to talk with us about our complaint, they said if Terri agrees that we can talk with Blue Care then if we are not satisfied can get back on to them. Terri agreed and we were told that someone will call us. The Ombudsmen emailed to us our complaint and the Blue Care response to our complaint. We read this and, in the response, Blue care lied, they had documented in their records that Terri said things Terri never said and things had happened that never happened and on it on it went. It was a shock to read and how full of lies it was. So, we waited for them to call.

We gave the advocate Li a copy of the complaint we submitted against Blue Care and a copy of their response and asked her to be at the meeting when they come.

We got a call from Blue Care and arranged a meeting, the advocate Li, Blue Care Michael Kwan Cluster Support Officer, and Blue Care Donna Clift Service Delivery Manager came to the house. The meeting went on for over four hours.
[It’s going to be hard for me to write for you how this meeting unfolded, we proved to them by the documents and records we kept just how frustrating and inept and disgraceful Blue Care were to deal with and how inept and disgraceful their behaviour was. I haven’t written for you everything that has happened with Blue Care or things we experienced at the Hospital. For example one of these things with Blue Care was, the seat on the Commode was too hard for Terri, we found out that there is a Pressure relieving seat that is much softer and we had the OT Penny order one through MAS, when Penny came and fitted it to the Commode, I felt it and noticed I could feel a bolt through the padding, I pointed it out to Penny and Penny said Terri is only light see how she goes. That night when we had showers I put Terri on the new seat on the commode and Terri couldn’t sit on it because the bolt was poking her in the bum, I had to change the seat back to the old one and I called Penny the next day and told her about it and nothing was done about it and this was one of the things we complained about. But in the response that Blue Care submitted, it states in Penny’s records on the day she came and fitted it and the day I pointed out the bolt to her she wrote “Ms McGillivray stated she was satisfied with nil discomfort” What actually happened is the day Penny came and fitted the new seat, Terri was in bed sick and Penny didn’t see Terri at all and Terri didn’t sit on it till we did showers that night. So, this is what we were dealing with and we had the proof to show they were lying]
Before they came, we created a document with the list of things that happened that we complained about and then Blue Cares response to each one. We went through each one of them one by one and we proved to them that both the OT Penny and Physio Uric had lied and didn’t do the job they are meant to be doing and didn’t provide to Terri the supports we were asking for and the Physio Arron and Gail did the same and in fact had put Terri in danger by walking Terri on the road each time they came out here for the fifteen minute walk instead of Terri going into the office for that sixty minutes. We proved to them that Blue Care had let Terri down by not providing the Physio and OT they should have been and Terri will never know now how Terri could of recovered from each attack if the Physio we were asking for had been done. By the end of the meeting Donna had realised how badly Terri had been treated by Blue Care and how Terri had been let down by Blue Care. Donna kept apologising for what we had gone through and the way we had been treated by Blue Care. We later got a letter of apology from Blue Care and they had to admit that they did the wrong thing and didn’t do their job.

[We unfortunately choosing Blue Care as our service provider ended up dealing with an organisation that is getting paid well to provide services but have a culture of doing as little as they can to better suit themselves rather than doing what is best for the client and not considering the devastating impact this can have on the vulnerable people they are paid to help]

During the meeting we told them that Terri has been approved by ACAT for a Home Care Package Four and they said to us that Terri has QCCS hours through her current funding that are not being used and we can use these on Physio and OT if we wanted too, and they sent Physios and an OT from another Blue Care Allied Health office and Terri started receiving the Physio and OT we had been screaming for for the last 12 months!
[amazing what happens when you complain]

Terri had this amazing ability to see people for who they are and didn’t let it bother her, Terri just got on with her life. There were many days that Terri was not well, I could tell the days that Terri was feeling well though, because the naughty cheeky side of her would come out.

So now Terri was getting Physio and OT four times a week and our lives continued, Sunday Karaoke, Plasma Exchange, going shopping, time with friends, Doctors appointments and so on. Terri still had no movement in her legs and her hands still felt like they had Baseball Gloves on them and Terri was still suffering from the muscle nerve cramping attacks and still dealing with the excruciating pain. They weren’t happening as often as before but often enough and Broadly didn’t seem to have any answers on how to fix this.

A short time later Blue Care came and told us that they have a Level Four Home Care Package available .
[no other service provider had one available and staying with Blue Care was the last thing we wanted to do, so this was a really hard decision for Terri to make. We spoke about it and spoke about it with the advocate and being it may be years before another provider has a Level Four package available Terri decided to take it and see how they go]

Terri took the package with Blue Care and nothing changed as far as the services Terri was already now receiving, Physio twice a week, OT Therapy twice a week, Nurses twice a week and PC for shopping and now all these services were being paid for through Terri’s package. Terri was still having the Plasma Exchange and our routine went on.

Remember we downloaded the government Home Care Package Operational Guidelines and had read it and we learnt how a CDC Home Care Package is meant to be run by the service provider, including how the funding and budgets work and including how the surplus funds roll over to the next month.

Blue care gave us their fee chart and service fee hourly rates and so on, so we knew that Blue care take from the package over $11000.00 in administration and service management fees, we knew their per hour rates for the Physio and OT Therapy and Nursing and PC for shopping, we knew their travel costs and any other fees because we had read it all. We also knew how much per month there was in the package to pay for the services. We knew that any surplus monies left over in the package for this month then rolls over to the next month.

So we did our budget, budgeting for all the services used in that month, Physio, OT, Nursing, PC admin fees and so on, and at the end of the month we knew there was a surplus of $730.00 to rollover to the next month.

Well as they say a Leopard doesn’t change its spots and Blue Care again proved itself to be a high-ranking member of the cat family! Blue care then told us there is no rollover of surplus funds and any money left over at the end of the month will be gone.

So Blue care came and we had a meeting about the many things that Blue Care had either failed to do or did wrong in setting up and running the package and the disgraceful behaviour of the Package Coordinator they sent to us to work with. [That’s a novel in itself] So, at the meeting we had-- Li the advocate and Blue Care Michael Kwan, Blue Care Managers Debra Gilbertson and Jenny McDonald. We started talking about the budget and the rollover surplus funds, and it didn’t take long before we realised who we were dealing with.
[Michael who had no idea what was going on, Debra Gilbertson the bully! and Jenny who waffled on for ten minutes but didn’t say anything]
We told them that Terri has $730.00 of surplus funds left over for the month and this is meant to rollover to the next month, Debra Gilbertson said this package does not rollover surplus funds and there is no money left over. We told them we have read the CDC Operational Guidelines and it clearly states that this package does rollover surplus funds, Debra Gilbertson then said but there is no money left over and the reasons she gave kept changing throughout the meeting, it went from her saying there is a surplus but this CDC package does not rollover to her saying she spent all the money on setting up the services so there is no money left.
[remember they get $11000.00 for admin and service management; this is for setting up the services]
Debra Gilbertson said she is running Forty-five of these CDC home Care Packages and they are not rolling over any surplus funds for any of them, she started reading from the operational guidelines to prove her point and we pointed out to her the section she is reading has nothing to do with rollover, she then put down the tablet she was reading from and just said there is no money left over!
[There were many other issues we again had with Blue care that we talked about with them at this meeting, yet again we just sat there shaking our heads in disbelief in how inept they are and how disgraceful their behaviour is. The advocate and Blue care both said, they are not accustomed to clients understanding the guidelines and how their packages should be working, therefore we can question them and confront them knowing when they are doing the wrong thing and they are not use to this]

In true Blue Care behaviour they do things their way and it seemed like the government operational guideline rules meant nothing to them and no point arguing with an idiot, so we just submitted another complaint about the money, this time through My aged care who oversee the packages and also Social services who provide the money.

We just got on with our lives, Terri was working with the Physio and OT Therapy, we were going to Sunday Karaoke, having friends over and spending time with Lorraine and Alan. Terri was still having the nerve attacks and having the Plasma Exchange. There was no change in Terri’s legs or hands but still trying.

Terri was laying on the bed one day and I walked into the bedroom and Terri said to me, this disease is going to kill me, [one of the massive regrets I have is] I said to Terri we could get hit by a bus tomorrow [in my stupid way I was trying to say don’t give up we need to stay positive] I regret not laying beside Terri and giving Terri the opportunity to talk about that.

We heard from My Aged Care saying they had been in contact with Blue Care about our complaint, so we waited to see what the outcome was going to be.

We received a letter from Blue Care responding to our complaint regarding Terri’s package roll over surplus funds, the letter said-
“During the rollout of the CDC packages we have identified that we have given you incorrect advice regarding the implementation of your package, particularly in relation to the rollover of funds and therefore your funds will roll over”

[Remember the Blue Care Manager Debra Gilbertson said that there are no funds left over because she spent the money on setting up the services?]

[again we complain, and now they haven’t spent the money and it is given back to you. Make up your own mind about what happened there]

Wednesday we had two friends over for dinner [1 of the blind boys I had worked with in the past on computer training Andrew and his Mum Sandy ] and we had a great night. The next morning, I changed Terri’s pad, [as I did first thing every morning] this time it was dry. Terri suffered from urine infections a couple of years ago and the urologist told us to make sure Terri drank at least 1.5 litres of water a day, so we had a 1 litre bottle that Terri would drink at least two of each day and try to have this done by 6pm. So, the pad being dry in the morning had never happened before. Terri then had her Physio, Terri tired a little more than normal but seemed to be ok.

On the Friday morning Terri’s pad was dry again, I gave Terri breakfast and we went into the Hospital for Terri’s Plasma Exchange and we told Nick about the dry pads. Nick connected Terri to the Plasma Exchange machine and then took Terri’s OBS [blood pressure and temperature] Nick said Terri’s blood pressure is really really low, he tipped the bed back so Terri’s feet were up and head was down and he called for the Doctors. A Neurology Doctor came, it was an Indian lady we hadn’t met before, while she was examining Terri, Terri had another nerve attack in her arms and her arms started moving up as they did and Terri was screaming in pain, we told the Doctor the name of the medication Broadly had Terri on to try and stop that and she said that will never work, [we thought finally someone that may know what to do] They disconnected Terri off the Plasma machine and took her up to the Neurology Ward. We told them about the dry pads and we told them that Terri drinks around 2 litres of water each day. They said she must be dehydrated and started giving Terri saline [this made no sense] They ran blood tests and we waited for the results to come back. They said they don’t know what’s happening and hopefully the blood test results will show something. Terri said she is feeling a little drowsy but otherwise ok. I went home around 9pm.

Saturday morning, I went back to the Hospital and Terri seemed tired but otherwise seemed ok. Terri had her normal appetite at breakfast, lunch and dinner. Terri was in good spirits. Terri said she was still feeling a little drowsy but otherwise ok. The Doctors said they think Terri may have Sepsis and are waiting for the blood results to come back. Terri and I were a little concerned about what was happening but not really that concerned because Terri seemed to be ok over all. I left the Hospital around 8pm and went home.

Around 9pm the phone rang and it was Terri and she said to me get back here I’m feeling strange, I called a cab straight away and while I was waiting for the cab I called the Ward and spoke with the Nurse Lisa [Lisa and Peter were two Nurses that did a great job and Terri and I both really liked them] I told Lisa Terri had just called me and I asked Lisa what was happening, Lisa said I don’t know and went into Terri’s room while on the phone to me and I could hear Lisa asking Terri what’s happening and Terri said I’m not feeling well. I said to Lisa I’m coming back in to the Hospital.

When I got into Terri’s room, they had a large air blanket over Terri and I asked the Nurse what is this for? She said Terri’s temperature is to low, it’s 34 and we are trying to get it back up using the heat blanket, I said do you know that heat will exacerbate the NMO, so they lowered the temperature of the heat blanket and kept it on her for a little longer. Terri seemed to be ok but we really didn’t know what was going on.

Sunday morning Terri was struggling to talk, it was like her bottom jaw was starting to lock up and Terri’s speech was slurred. Terri also lost a lot of her appetite and only ate about half of her breakfast, lunch and dinner of what Terri would normally eat. Terri now was starting to look and sound sick. They were still giving Terri the Saline and Terri was starting to puff up in the arms and face. We asked the Doctors about this and they said this is normal and they said we don’t know yet what Terri is suffering from but are still trying to find out. This was getting really scary now, neither of us understood what was happening or what to do about it, with the NMO we understood a little and could rationalise it and learnt how to combat it. Terri was starting to sleep a lot.

Monday morning Terri was no better, Terri’s speech was the same and Terri said to me I’m really sick. Lorraine and Alan had been coming in and all of us were scared but thinking and saying that everything was going to be ok. Terri was drifting on and off all day, sleeping for a couple of hours then awake for an hour or so then off to sleep again. Terri still had no appetite and didn’t eat much all day. The Doctors still didn’t know anything and neither Badve or Broadly had come to see Terri. We had no idea what was happening.

Around 5am on Tuesday morning the phone rang and it was a Doctor asking me to come back into the Hospital because Terri’s condition had worsened, I asked what has happened and he wouldn’t tell me, he said you need to come to the Hospital. I called a cab and as I was walking up to the door to Terri’s room the Nurse said you need to wait out here for the Doctor, I just ignored her and walked into Terri’s room, the Nurses came in and Lisa said Terri has passed away in her sleep, they said that Terri passed away around 4.15am, I asked what happened and they said they don’t know.

Alan and Lorraine arrived, we just sat there with Terri, it took a long time for a Doctor to come in and when he did, we all said what happened? he had no answer. He said we can do an Autopsy and Lorraine said no, we all thought the same I think, you Doctors have done enough to her leave her alone now.

A week later just before Terri’s funeral, I called the Hospital to see if they had the results of the blood test and if they had any idea of what happened, they said the blood test showed Terri did not have Sepsis and they said that they believe that Terri had a severe attack effecting the brain and they believe Terri had a Heart Attack.

The first video below is taken at the chapel during Terri’s service, the people talking are in this order,
Alan and Lorraine Terri’s parents, then myself George, then Cathy and Greg Terri’s friends.
The second video is anti Di at the celebration to celebrate Terri after the service.

A short time after Terri’s funeral, a friend of ours Franny told me while her and Terri were sitting at the table talking not long before Terri passed, Terri said to her, I am worried about what is going to happen to George when I die. When Franny told me this I remembered back to when Terri said to me that this disease is going to kill me and I didn’t give her the opportunity to talk about this, again I really regret that because Terri obviously realised things were worse than we thought.

When Terri’s death certificate arrived, it says Terri died from complications of MS and Sepsis. By now nothing surprises me and it’s really sad how accustom I have become to people in responsible positions can be so inept. We know Terri didn’t have MS and they told me Terri didn’t have Sepsis. Getting it right is not going to bring Terri back, however It really does upset me, they couldn’t even get that right.

If you are reading this, then you have read all the above and how much Terri suffered in the last few years of her life and how Terri was let down by the very organisations that by design are there to help her.

I started off to tell Terri’s story, while writing down Terri’s life and how things happened [even though I have left out a lot of the inept things we experienced either at the hospital or from Blue Care] I found it hard to tell Terri’s story without including the few things I did include because this is what Terri had to deal with.

I understand that none of these inept things if not happened would of changed how Terri’s disease effected Terri, they were though extra pressures that Terri should not of had to deal with.

You now know what a very special person Terri was. Funny, smart, determined, honest, talented, loving, giving and so much more.

Please have a thought for Terri every now and then as you go through your days, we should never forget Terri and what Terri went through and who Terri was.

Terri always had a smile on her face and you please do the same for Terri.

if you have any comments or want to send Terri a message, I will create a page to put them on, just send them to me by clicking HERE

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