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.