Hi

Today I went to see my neurologist and was  given the results of the biopsy that was done on my left leg back in January this year. The news is not good, but I don't think it is all that bad either.

They have found that I have Nemaline Myopathy. It is a degenerative muscle disease. There are two different variants of it. One can be treated, the other can't. My neurologist is unsure which variant I have, at the moment. I will end up in a wheelchair. This is no surprise for me really, my left leg has been giving me worse problems over the last 9 months. This last month or so, I have had discussions with my wife about getting a wheelchair anyway. Every morning I bounce off the walls when going down the hallway towards the kitchen. I suffer terrible cramps in my left calf, especially if I try to stretch my left leg, like you do first thing in the morning. I also suffer when the muscle starts to tremor like a jackhammer. I can't control it so I just have to wait until it stops. It often happens when I'm asleep and wakes my wife, but not me. I just sleep through it.

The treatment requires a special transfusion of a blood product, not sure what blood product that is at the moment, but not whole blood. It will cost about $20,000 for the first 5 days, followed by $4,000 to $5,000 a month. I'm not totally sure, but I think the treatment is supposed to be for the rest of my life. Fortunately, for me, the government will pay for this, but only IF I meet their very strict criteria. I have been rejected once, but it is under review and I might get through second time around.

This year is turning into a really crazy one for me. I will be back in hospital next Tuesday to have surgery on my AC joint, which I dislocated about three years ago when I fell of a verandah and landed on my head and left shoulder (a fall of about 4 or 5 feet), dislocating my AC Joint. Luckily for me, I landed between two cement paving tiles and avoided hitting my head on either of them. Because of the injuries I suffered in my motorbike accident, it was decided not to do anything about it at the time. This has caused me a lot of pain and, finally, after three years it is getting put back in place. I admit myself into hospital, very early in the morning, have the surgery short afterwards and, all going well, return home the next morning. One and a half days in hospital.

Mark

Mark, we cordially wish you good luck with the surgery, and hope everything will be OK with all problems you have! We will keep fingers crossed!!!

Oh, wow Mark. I hope your surgery goes well! We'll all be thinking of you!

Best of luck to you Mark!!

Bruce

All the best, Mark.

It doesn't matter in what sort of chair you may be sitting, you will always a friendly Captain around here.  :)
Since you don't like hospitals (who does?), I'm hoping for a fast release there.

Mark,

Good luck with the surgery and my best wishes for your quick health recovery.

Pinatubo.

Mark,

I wish you good health and quick recovery.

Sanal

Mark ol boy, sorry to read about your problem.
I guess I can't say, no worries mate, since I have to worry about you.
If you do get a roll-about chair I'll pay Nath to do some painting on it to make it airworthy!  8-)

Hope for the best my boy...

Lou

paint nose art on the back of the chair and hot rod flames on the rest  :D

Mark

It's enough to make tears come to my eyes. Jesus, what can I say?

Michael Cubine

Good luck Mark. I hope you come out okay. :-[ I'll be missing your comments and help, and everyone else will too.

good luck and God's speed

Sheesh. Flight Simmers just haven't been having good luck health-wise, have they?  :'( (I hope you're feeling better, Nathan) Anyway, the best of luck to you! I can only imagine if I was in that scenario, but you have my sympathy.

... and I like Nathan's paint job idea.  ;)

Thank you for your support, and concern, everyone.

I'm not worried about the need for the wheelchair. It's better than falling over. I'll just need to give it a paint job - black with red and yellow flames shooting towards the back, like a rocket ship. Then I'll tweak the electric motor for more speed! :D

I'm actually looking forward to having the surgery, as strange as that may sound, and hoping like mad that it'll give me some release from my daily pain.

Mark

Okay.

It's a little after midnight Monday night/Tuesday morning. I have to get up at 4am and head for the hospital in Melbourne (120 kilometres away) at 5am and have myself admitted by 7am (operation should be before Noon). I should be allowed to go home at around 9:30am on Wednesday and be home by Midday. All going as planned, I hope to b back on here sometime Wednesday afternoon (unless I'm in too much pain from the surgery).

See you all when I get back! Take care. ;)

Mark

We will be thinking of you Mark.

Talk to you when you get back home.

Lou

I'm back!

Unfortunately, I don't feel too great at the moment. The surgery I had yesterday was three hours long, instead of just on/over one hour.

When the surgeon went in, she got a very nasty surprise. My shoulder and socket were a real mess. The cartilage surrounding the socket, had pulled away from the bone and was floating around. The original idea was to bond the clavicle (collar bone) into place, but in the end it was better not to do that. She also found signs of arthritis in there too, which is not all that surprising because of my age.

What WAS done. The socket was cleaned up and smoothed. I'm not sure, but most of the rubbish floating around inside were removed. I'll know better in a couple of weeks when I go back for followup consultations. A small portion of the clavicle was sawed off because it was scraping on the socket when it moved, and is what had pulled the cartilage away in the first place. As well I had some bone growth in a bad spot and this was catching ABOVE the shoulder bone when it was supposed to be below it, this was sawed off as well. So this meant that there was quite a lot of bone grinding on bone.

Anyway. I'm back home and everything went quite well, considering the findings inside my shoulder. It could be a while before I get fully back into the swing of things. At the moment, I'm just wanting to rest a lot, which is a good thing, but is also extremely boring. It could be a few weeks before will feel how well this has turned out to be.

Mark

Mark, sorry to hear things are not that good as expected, but still hope they will turn out to be good! Take care and get rest!

Mark, your explanations sounded rather technical (watch that oil pressure!) and I'm really hoping the best for you, buddy.
You seem to take all this stuff like a champ and that's an adorable thing. I wished I was as brave as you are.  :)

I hope things turn out well in the end. We're all rooting for you, Mark!  ;D

My idea of rest is flying some CS airplanes :D. I hope everything turns out well for you, Mark. Feel better!  ;D

It looks like Mark is on the mend.....  8-)

http://img51.imageshack.us/img51/309/markfz.jpg

Lou

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Mark,

I'm sad to hear bad news about your surgery, but don't despair. My best wishes for a speedy recovery.

Pinatubo.

Mark, you are an inspiration to me! I'm in my 7th decade and also have a few less parts than I started with, but nothing to compare to your situation. You are a real example of pressing on and making the best of it. I hope I can emulate your performance. Best wishes for speedy healing!