Tuesday, February 8, 2011


8 February 2011
for those that haven't read the first post I think you should view it

Since today is pretty much like yesterday i'll spare to dfiry entry instead I;ll elaborate more on my illness as best to my knowledge.
Ok so this is what I gather about it:

adrnoluekodyrtrop;hy ot X-linked AlD has 3 forms, a shildhood form,. Adult form and addison's only form. The childhoood form is the worst one as it leads to a vegatble state and eventual death in about years after the symptoms appear. The adult onset form which I hve it similar to the cbut the outcome will be the same, vegetable state and then death. The Addison's only form is the one where the patient just has adrenal insufficiency so they will need to take hormone replacements for their entire life. So I was told by a doctor that about 50% of cases are childhood form so I guess I passed it witho9ut knowing. The adult onsetfrom is about 40% of the time and lastly the addison's form is 10% of the time.

ALD is a disease which means the body doesn't produce a vital protein that aides in the breakdown of very long-chain fatty acids (VLCFAs) this leads to a build up of it in the brain and in particular the motor cortex. This build up causes the electrical signals in the nerves to be weakened or non conductive so its not a problem that I have with my muscles but the underlying drive that controls it. Right now its painless and I hope that it will remain painless.

I think I covered it in enough detail here for now you can akways ask me or reserch it online. Each case is different but generally it is the outcome. Its hard to say how long i'd have but my best guess is like 5 years though I feel the symptoms arew getting worse at an alarming rate of like 3 days so I will keep my blog updated.

I'd like to say a huge thanks to my friends who are helpuing me and see this as a chance to do all things I can do right now. I normally don't mention names but I will now as I want to name these people. First and foremost is Lo Tech I think I've known him sincce year 5 thats like 10 years or so and he looks out for me when we go anywhere in that right now he ensures I don't get hurt and tries to make it convenient for me. Victor, I first met you through another friend and we got along before I had the illness you helped me with my life and lots in terms of magic wqe oftren talked about it. Victorr noticed that I had been clumsy so I went to the doctors to get it checked out maybe he noticed it because of the time we spent Henry I know you want to help me deeply but you would not know how when you firswt heard of it you called Seney (my gf) and talked to her about it which was easiier I suppose, I soent a lot of time with henry aswell before the illness and the knowledge he has is awesome. Henry once said “i'm the kind of guy who helps someone and if I can't I get help for them from others”. Almerick is the niest guy I know and I hope you can marry Gillian soon. I met Almo at the store where I played magic, he works there part time now. Thinking about it i'm sorry that I didn't go to his 21st birthday I don;t remember what I had but it must've been important.. Wilso\n bought me some crystals when he first heard of it and i'd like him to know that while I do not believe in it theres no hwarm in using it and wearing the necklace of the crystals. Seney the unsung hero and only female so far, you have helped me a lot over the years and I have grown to take you for granted often times picking things over spending more time with you making you angrier in the process. The last person that I need to talk about is Jacqueline, she helped me with the blog and doesan't want to hear of me being at home wasting what time I have left and she wanted me to come up with a list of things I want to do we'll call it a bucket list. People should know that I am fine with staying at home I do not need to do things all the time.

Man that was a long section, there are mnany people who had an impact on my life so far and I coouldn't name them all or else this blog post will be so long.

What is the next step? A meeting with the bone marrow doctor on thursda 10/2/2011.