Who am I ?

I have Multiple Sclerosis (MS). It started in 1998, but was finally diagnosed in 2006. I was in NZ at the time and was not treated until I returned to Australia in 2011. 

In 2005 there was some damage to my lower spinal chord,but in 2015, a very agressive phase hit my cervical spine (neck). If it had not been stopped, it would have cut the spinal chord making me a quadraplegic (nothing from the neck down). Fortunately, it was stopped, but a lack of effective treatment saw a steadiy declineuntil 2019, when a fall left me bed-ridden. I describe myself a an effective paraplegic. I can no longer stand and although the surface feeling is apparently unaffected, the feeling below the skin is, meaning I don't feel broken bones (except at the time they break) and other sensations are reduced.

Before this journey started, I was involved with a dance school that taught me how to isolate and control (independently) every muscle group in my body. I may not be able to move those muscles, but the pathways alow me to still feel most of them and the beauty of the brain is that with a lot of help an hard work, there is every hope I can get back control.

More details of the beauty of neuroplsticity will follow in my blogs as I share what I have learned.

I will also share what I have learned about such things as how to avoid bed sores, properly care for catheters and other things that can help. The beauty of my situation, is that my body awareness and my remaining sensations allow me to pass on that information where full paralysis can't. I am hoping that those involved with caring for the disabled, aged and even those in hospital, will take on board the lessons I have learned, allowing them to better care for others worse off than me.

Below my  blogs is some more information that you might want to know

that I don't want to get lost in the Blogs. 

What is MS?

The basics Neuroplasticity and the body

The Official Me

My hopes for Kingfisher Care QLD

MS translates into 'common speak' as multiple scars.  It is an auto immune disease, that means my body is attacking itself. It has now been proved that three things work together - My genetics, Vitamin D3 deficiency (that means that the closer you are to  the poles, the more likely that the reduced sun in winter is to cause problems) and the Epstein Barr Virus (EBV), better know as glandular fever. It is best diagnosed by Magnetic Resonance Imaging (MRI) and regular MRI's are the only way to track  its progression. Noone who has ever had an MRI will forget the bang, bang, knock, knock of the MRI machine. I had 3 in the space of 6 months !

I grew up in Canberra, where winter sees little sun, and caught glandular fever when I was in my late teens. It turns out, it came down my father's line, my half brother also has MS.

The way I explain MS, is to imagine that the nerves which run throughout our body work like electrical wiring - imagine the wire with its plastic coating. The EBV convinced my body that the plastic coating (myelin) was a disease that needed to be eradicated, and so my MS journey began.

MS starts in the brain, and now I want you the change the image in your mind to roads. We all have nerves that work like the motorbarns of Germany. The messages move at hyperspeed though our body and brain making us react quickly to new information. For people with MS, those motorbarns are now like that country roads with potholes, reactions are slower and there is always room for the odd short circuit.

For everyone with MS, the biggest issue is heat sensitivity and fatigue. In hot weather, the fatigue is worse. We work best in cool weather - but don't make it too cold, or we spasm. I work best on vampire time. I come alive after the sun goes down.

The brain is an amazing organ, it can learn new ways to bypass those roads that become impassable, through a thing called neuroplasticity, but eventually those  processes, that we take for granted, start to suffer. We have problems with balance and sometimes vision and memory.

Because the nerves are attacked are random, the range of symptoms is vast, so the journey  is different for each of us.

There are 3 forms - Relapsing Remitting, which means something goes wrong and we are dramatically affected until the neuroplasticity allows us to recover (almost), followed by secondary progressive, where neuroplasticity can't keep up and we go into a steady decline. The third is Primary Progressive, where the body just starts with steady decline.

For the unlucky ones (like me), the MS  spreads to the spinal chord. There is  no way to find another route, there is just one way for messages to get from the brain to the rest of the body. Partial permanent paralysis is the result.

The good news is that the body does actually produce myelin, Unfortunately, it is just enough to reseal the road and as we all know, just filling a pot hole never really works, and just a little seal doesn't even fill the pothole. Until scientists find a way  to get the body to totally replace the myelin, the fight back is virtually hopeless. 

Current drugs can only slow down the process, but recent advances have meant that for many with MS, that is enough to prevent the kind of major damage I sustained. I was lucky in that a new drug, introduced in 2015, turned out to be very effective against MS in the aggressive phase mine was in at that time. 

Since that treatment, my MS has totally stopped, there has been no change in the MRI'S at all. Others were not so lucky, so it was not the miracle drug we had all hoped for, but the research march goes on and there  is a real chance that MS will no longer be an issue for future generations.

 Neuroplasticity is a reasonably new concept that recognises the brain's ability to adapt and change those pathways that have been damaged. Obviously, it applies to MS, but it also applies to stroke and and any other event, whether accident or health related, that affects the proper use of our limbs. 

It involves someone or something else, moving that limb, while we allow our brain to 'pretend' it is controlling that limb for itself. The pathways thus reestablish, and in a perfet world, full movement is restored.

Neuroplasticity has even been shown to work with some disabilities by using a mirror to move one limb, thus making the brain think it is moving the other. After this process, movement in the other is slowly restored.

And again, there is even evidence that the use of virtual reality can trigger movement.

Where the spinal chord has actually been severed, from my understanding, it is of limited use. As I said earlier,  there is only one pathway. If it is cut, it is not possible to find another way, but given research in this area, it would be a case of 'never say never'. Robotics have proven to apply with amazing results. If the brain can direct an artificial limb, there is nothing to prevent a robotic 'frame'. It is just a matter of time and money and progress has already started on the 'cage'.

In my case, moving my legs allows me to slowly regain control and strength. I pent many yeas in a dance mean I am already able to identify the  muscles I need to control, but my brain gets tired before my muscles do and there is one more issue. The majority of my subconscious processes from the waist down, are gone. That means that where most people just think 'I want to walk to the other side of the room', it just happens and they don't have to think about how, I have to actually control the whole process from standing upright to each step. It also means that if you touch me, or even talk to me, I fall down. A great party trick, but not from my point of view!

My legs spasm regularly during the day, if they get cold, or if I haven't moved for a while.  It is not painful, it is like when you have been sitting for a long time then stand up and your body forces you to a full stretch. During that time, normal movement occurs and if I concentrate, I can move that body part a little. We have also found that if we slightly overstretch a muscle, movement is possible, eg stretch the hamstring and I can move an otherwise immobile foot a little.

All of that tells us that the pathway still exists and the problem is more likely compression of the nerves, as opposed to actual damage.

And  while we are talking about movement, there is one more thing I have learnt. When we can't stretch our muscles, there are 2 reasons, tight muscles or tight nerves. The muscles require one treatmennt', the neves another.

Isabel Tilyard started her working life in the Public Service with 6 years in accounting and then with a move into the investment arm of the Commonwealth Superannuation Scheme. Initially as Operations Accountant, she then became Resources Analyst where she was charged with making long term investment decisions on Companies listed on the ASX. This position gave her the opportunity to visit all major resource operations in Australia, as well as a number of major overseas operations. It gave her a unique opportunity to view major businesses from the outside and analyse their management, strategies and operations with a view to forecasting future performance. It started a lifelong passion for the Resources sector and its importance in Australia’s future

Isabel then moved back to accounting and joined the senior management team of Drew Australia, a chemical water treatment company which was partly owned by Ashland Chemical Inc. As Group Accountant, she was responsible for the accounting, administration and IT operations of Drew, its subsidiary in NZ and eventually Drew Ameroid Australia, a direct subsidiary of Ashland Inc.

In 2000, Isabel become a Software Consultant in NZ and successfully grew her business from a ‘one man band’ to a growing company with 3 employees in less than 2 years. The consultancy involved implementation and support of the Prophet Accounting system for more than 200 clients. The majority of these businesses did not have an Accountant on staff, so she became involved with accounting procedure and internal control advice. One of her major achievements was the implementation of the software in the Reserve Bank of Tonga.

After selling her business to move to Tonga, Isabel returned to NZ in 2003 and worked as a consultant. She eventually became the Project Accountant with Transpacific, a waste management Company. In 2011, she returned to Australia and worked as part of an implementation team with responsibility for overseeing the amalgamation of more than 200 different accounting systems, based in Brisbane, with sole responsibility for overseeing the integration of all of the NZ operations.

Isabel has been a self-managed Participant with the NDIS since 2017, when it started in Ipswich, QLD. She has Multiple Sclerosis which started in 1997 and was diagnosed in 2006 after a lesion on her lower spine affected her left leg. In 2015, a major lesion on her C3/C4 started a trip towards quadriplegia. Fortunately, in August 2015, a ‘miracle drug’ for MS treatment (Lemtrada) stopped the progress of her MS, but only after it had significantly weakening her right leg. For various reasons, her mobility continued to deteriorate until August 2019, when a fall saw her permanently bed-ridden.

At the present time, Isabel is on the DSP, but supplements her pension through accounting consultancy and has recently set up a company (Kingfisher Care Pty Ltd) to share her carers with others. The motto of the company is ’Personal Carers not Support Workers’. Care is missing from so many staff who work in Disability and Aged Care. It should be a vocation not a job.

She has now made the decision to move into politics, standing for the Senate in QLD for the Australian Federation Party. Their main claim ‘enough is enough’ says it all. Politicians need to get back to basics and represent the people they purport to represent and not their own or party interests and agenda.

One of the best things about the team I have built around me, is a feeling of family. It is something that  for so many is missing today. With all of my family in NSW, it is something I missed for many years. 

That environment leaves me with a confidence that I am not alone and that that vulnerability that so often comes with being disabled, is significcantly reduced. Everyone, whether they are disabled or not, deserves that.

Vern Hughes, from the Sensible Centre, calls it a 'circle of support' and he suggests that it should be put into place for everyone from birth to death. I want to see that concept put in place for every vulnerble person at least, and I will work with anyone in your current circle to ensure the best outcome for you.