BMX Bandits.

Today I had some friends come to visit me which was nice, even though I can sense they are grasping the reality of my situation.

Tonight I went to watch my boy race his BMX bike.
My Son turned 9 in October and I got him a really good bike for his birthday, I figured I could help him with that and get involved a bit more easily while I am ill.
I used to race Karts, Moto X and my Car, (its in my blood my Father used to race cars and boats) .
Kids see you do stuff and want to do the same, If I wasn't ill I would have got my boy a Go-Kart, (I have always had a passion to race cars or be an engineer on a race team), but there is too much involved for me, at least with BMX I can still give advice and help out.

I was really into BMX when I was a kid, there were films called RAD and BMX Bandits that were iconic in their time but its gives me so much pleasure to see my boy getting into the culture that I was once into.

I will be admitted to the GCH for treatment for (hopefully) two days on Tuesday the 2ND of December 08.
Apparently this is a very very very rare illness with most of the up to date study being done in Spain.
The good thing about this site is people can read and keep up to date the world over. My case has generated a lot of interest from people in the medical profession.
I am happy to create awareness of this little known illness. I hold eduction in high regard.
The treatment is simple, it can be done two ways, I.V.I.G. (expensive, synthetic blood) or a thing called fluid transfer which is when you get hooked up to a machine that filters your blood. It's similar to dialysis.
The Neurologist that found my diagnosis was not sure how I will recover from the treatment. It could be marginal or full.
Whatever the outcome, it sure beats being undiagnosed!

Moving Forward!..

Today, like most Wednesdays, I go to the G.C. Hospital for Re- Hab.
No its not the place drug /Alcohol addicts go to get weened off their respective substances!
They help me with Occupational therapy, Physio therapy and Speech therapy, a community based company transports me.
It must be funny to see from the outside, me (sporting an eye patch) travelling with mostly senior citizens, I call the other passengers my homies.
Anyway, today at Re- Hab a well known Neurologist and his team took some video footage of me as before treatment and after treatment evidence.
My confidence builds.
I also saw other Doctors early today who suggested another Lumbar Puncture to test the spinal fluid again. For those who don't know its a sample of spinal fluid extracted with a big needle. They are horrid. The pain lasts for 7 days, the only way to relieve the pain is to lie FLAT on your back.
An old friend of mine said his brothers baby boy has to have an L.P. once a week or once a month, he has leukemia.
When I think of that it puts so much into perspective.

Progress!..

Today I had an appointment with a Doctor, (a reputable Neurologist), late this afternoon. He studied my tests and found something called GAD, it is both rare and hard to get information on.

I went to a Hospital in Brisbane, July/ August this year, where I underwent further testing and whatever it is that has afflicted me first surfaced then. But I guess because I had all these other tests my results simply just got 'swamped' by the QLD health system.
When I was told of the possible diagnosis I was so happy I cried, I have been failed so much and whatever that got hold of my health caused such a disruption to my life and to those around me, Finally we can combat this thing.
Finally some positivity.

I am trying not to get my hopes up too much because a part of me, every time I go somewhere medical, gets excited. But there is only so much bad news you can handle before you become a pessimist.
If what I have is treatable then this is the beginning.

Happy Monday...

Today I did a HEAP of grocery shopping, its pretty funny because I wear the eypatch when I walk, (it doesn't help my symptoms but it helps to give me clear vision), I either scare kids or hear them saying to their Parents "Mum/Dad check that guy out I think he is a real life Pirate". Bless.
It's funny as most Parents scold their children for saying it out loud and then take a double look themselves.
I then got a haircut off a good friend. Most people probably think that I would be fussy about my hair, looking after so many people for so long, I can honestly say that I'm not fussed at all. Just really hot with too much hair in this heat.

Today (the 22nd), I went and saw a Naturopath. I'm seeing my children too, 'til Wednesday (it's hard work, but rewarding).

Just when I thought I had this thing mastered. It teaches me an exercise in humility. I described my last two days and it does'nt work!
So here am I typing again. Enjoy! (nothing inersting, sorry).
Yestrday (the 20th), I saw two Immunologists in Brisbane at a Hospital. Today (the 21st), I went to another Hospital for two seperate appointments with another Immunologist and a Doctor who is the head of Neurology at this Hopital.
Then went to a friends studio where my drum kit is set up to play.

I'm not sure how this works.

I really hope this works! My friends helped me set this up, hence the name. I am much more comfortable using an abacus or playing stratego. I'm sure I will master it in due course.

Update from phil

Hi,

Finally an e –mail update, first things first, I hope this finds you well.

A lot has happened since April. I will start from then. In short:

I first knew there was something wrong when I had trouble walking and took an hour and a half to do a haircut (normally I allow an hour to cut and dry etc.)

When I first took ill I didn't do anything because I thought, like most things, it would go away by itself. Through healthy lifestyle and rest. But it didn't.

I knew my balance had gone but I could still do some things like cooking, driving, work etc. I didn't say anything but then I told the mother of my 2 children, that something was wrong one morning when she was picking up the kids for school from my place.

Me, being a typical male, approached my Health with stubbornness and neglect, I didn't have time to get sick and had too much responsibility. Luckily a few people said to me to go to hospital to get it checked out. I started to get worried. So I went to my GP and said to him my speech and co ordination wasn't the same, he said to go to hospital to get checked out. I worked one more day and found it really hard. Early the next day I went to the Gold Coast Hospital.

I spoke to a few doctors and then they put me on to some Neurologists that came and saw me and asked me a lot of questions and asked me to do some co ordination tests.

I have had countless tests like samples of hair, stool, urine, blood, M.R.I., C.T., P.E.T., 3 Lumber Punctures a Lymph Node biopsy and the Doctors still don't have a diagnosis. I have had an intense course of steroids and a course of fake blood called I.V. I.G. All came back clear.

I have been in hospital for 6 months of this year and have witnessed some shocking things. My Dad used to say that some people are hospital people, I never was, never have been and never will be.

Among other things I have a thing called Diplopia which is double vision, it means I can wear an eye patch!

Also, because of whatever I have is attacking my central nervous system it has affected my speech. Really badly. So I have to rely on others all the time, which, being so independent is really difficult.

I think what I thought from day 1 it is stress related.

I went to centrelink for help but ironically they couldn't do anything. Someone in my situation doesn't fit the criteria. They would help me if I didn't have my unit, car, business, and I never saw my children nor paid any child support. I can't even get a health care card.

Also I play the drums once or twice a week and it sounds like I have never played before (I have been playing since I was 11, have been in two good bands and sang too).

It is literally so bad that all I can do is laugh. I'm sick of the constant negativity and let downs.

I am going to do what I am best at keep on living and going.

Not only has what has happened been hard and disruptive to me but it has affected everyone I know in some way. Frustrating is an understatement!

Some of you may already know this, for other people it will give clarity with what has been happening.

Because this situation is literally unbelievable, I am going to turn a negative into a positive and write a book, it will take a long time, like 10 years. It will provide some inspiration and it will help for it never happen again.

There is so much that has happened but it took me 3 days just to do this e mail.

It can be hard to see an independent person become vulnerable and if you feel led to help out, just e mail me or pick up the phone.

Because what may be nothing to you, could mean the world to me.

Wherever you are.

Take care

Phil.

Welcome to Phil's new blog

Hi Phil - hope you like your new blog! All your friends can now band together and offer you support to get better! We are looking forward to helping you any way we can and making sure you continue to have some laughs along the way.