Basic & Comfy

In search of ideas to fix up the guy pad downstairs, I found this. Braeden really likes it, so i think ill try to use some of ut for inspiration. The pillows with wildlife photos and the ottomans are Fantastic! The ottomans could even have cushions and double as extra sleeping space. I also had an idea to bring more light to his area, Xmas lights behind a "screen" on the wall. Aawesomee!!
a mad tea party with alis: Basic & Comfy: Sade & Rahat {} {} Home Reno round 2 is going on in my home, and spring has failed to arrive. That means we are getting toxic fumes whil...

Awesome ideas

a mad tea party with alis: Likainen Parketti: {}   {} {} I am in awe of this blog, Likainen Parketti , written by Nena from Finland. She shares incredible photos from her own home, and ...

Lemony herby Flounder

http://heavenlyhighs.blogspot.com/2010/02/baked-flounder-with-lemon-herb-butter.html?m=0
I just came across this recipe for flounder, I can't wait to try it. She has lots of recipes! Woohoo!

Finding out

I have had plenty of just plain ol' shitty luck the last few years. I broke my ankle in June of 2011 and have not been the same since. I am sure at some point I will talk about that more because it had a Huge impact on my life. But for now I want to talk about this "condition" I have. 

"You have a Neuro-degenerative Disease" is not something you want to hear from the neurologist. Add to that however, "we don't know what is going on exactly" may be even harder to grasp. 

Looking over my MRI and consulting with several other neurologists (including Mayo Clinic) they are baffled, well what the doc said was "you are an Enigma, a Neurologists dream to study". Ok, I have referred to myself as an Enigma before, but relating to my personality, not my screwed up brain. I have been on this road to try to find out what is wrong, why am I experiencing these things and having Nobody take me seriously. I was told nothing was wrong, I just need to lose weight and control my diabetes. I was even told it was just me getting Old! OLD??? I am 41, NOT 71. I understand the natural aging process, but give me some credit, I live in this body 24/7 so I kind of know what is normal for me and what is NOT NORMAL. I kept blaming my bad ankle  on my problems with walking, although that didn't make sense either. So when I had numbness in the right side of my face that then spread to the entire right side I called the doc and was told to get to the ER asap. Had the partial MRI ( I had a hell of a time staying still, my spasms in my right leg are involuntary) and was again told that I was Fine. No Stroke No MS. The neurologist on duty that day was a Bitch. She came in with this attitude talking to me as though I was an idiot hypochondriac with no MS symptoms and that we should not even finish the MRI because it would be a waste of time, I was Fine.

She also was kind enough to tell me that if I didnt get off my Butt and start  working out and stop taking ibuprofen I'd end up a vegetable in a wheelchair. Like I said...Bitch! 

So when I met with a Different neurologist (who agreed with me that she is a bitch ;D) and he started telling me they were concerned you can imagine my surprise. I said "I was told by several doctors in the ER that my MRI was fine, No, he said, your MRI is far from fine".

I wanted Pat there with me really bad right then. But I hadn't asked him to come as I thought it was a follow-up to tell me that nothing was wrong with me and that I was crazy. I guess I am not as crazy as I originally thought. 

So what I know now is that I have atrophy of the cerebellum, medulla, & the brain stem. They noted other abnormalities that they can not explain, which worries them that it could be something that they simply do not have the technology to detect. After consulting with other docs they feel strongly that it is Alexanders Disease. 

Rather than me try to explain what that is, here is an excerpt. 

What is Alexander Disease?

Alexander disease is one of a group of neurological conditions known as the leukodystrophies, disorders that are the result of abnormalities in myelin, the “white matter” that protects nerve fibers in the brain. Alexander disease is a progressive and often fatal disease. The destruction of white matter is accompanied by the formation of Rosenthal fibers, which are abnormal clumps of protein that accumulate in non-neuronal cells of the brain called astrocytes. Rosenthal fibers are sometimes found in other disorders, but not in the same amount or area of the brain that are featured in Alexander disease. The infantile form is the most common type of Alexander disease. It has an onset during the first two years of life. Usually there are both mental and physical developmental delays, followed by the loss of developmental milestones, an abnormal increase in head size, and seizures. The juvenile form of Alexander disease is less common and has an onset between the ages of two and thirteen. These children may have excessive vomiting, difficulty swallowing and speaking, poor coordination, and loss of motor control. Adult-onset forms of Alexander disease are less common. The symptoms sometimes mimic those of Parkinson’s disease or multiple sclerosis, or may present primarily as a psychiatric disorder. The disease occurs in both males and females, and there are no ethnic, racial, geographic, or cultural/economic differences in its distribution.

Is there any treatment?

There is no cure for Alexander disease, nor is there a standard course of treatment. Treatment of Alexander disease is symptomatic and supportive.

What is the prognosis?

The prognosis for individuals with Alexander disease is generally poor. Most children with the infantile form do not survive past the age of 6. Juvenile and adult onset forms of the disorder have a slower, more lengthy course.

What research is being done?

Recent discoveries show that most individuals (approximately 90 percent) with Alexander disease have a mutation in the gene that makes glial fibrillary acidic protein (GFAP). GFAP is a normal component of the brain, but it is unclear how the mutations in this gene causes the disease. In most cases mutations occur spontaneously are not inherited from parents. A small number of people thought to have Alexander disease do not have identifiable mutations in GFAP, which leads researchers to believe that there may be other genetic or perhaps even non-genetic causes of Alexander disease. Current research is aimed at understanding the mechanisms by which the mutations cause disease, developing better animal models for the disorder, and exploring potential strategies for treatment. At present, there is no exact animal model for the disease; however, mice have been engineered to produce the same mutant forms of GFAP found in individuals with Alexander disease. These mice form Rosenthal fibers and have a predisposition for seizures, but do not yet mimic all features of human disease (such as the leukodystrophies). One clinical study is underway to identify biomarkers of disease severity or progression in samples of blood or cerebrospinal fluid. Such biomarkers, if found, would be a major advantage for evaluating the response to any treatments that are developed in the future.

WHEW!! Ok so what does that all mean?

It means that my body is attacking the cerebellum/medulla/brain stem causing it to atrophy (shrink). They can not tell me what I can expect. For right now we are in a sort of limbo of not really knowing what to do. Not knowing is very hard.

They are worried that it is degenerating so rapidly the last 9 months. Will it keep degenerating at this rate? We don't know, we will do another MRI probably in Sept to see what if any changes there are. 

I am really hot, and beginning to hurt so I need to stop for now. I will continue later. 

I 

I have been meaning to start up this blog so that I can document my journey dealing with this "condition" that I have recently uncovered. I have been stalling.
Mainly because I have a hard time with my concentration. I wanted it to be something really....pfft hell if I know what I want it to be. I can't expect myself to....to always be comparing myself. I am simply going to start writing. I can't promise whoever reads it that it will always make sense, I topic hop all over the place all the time, so it will probably be kinda like a loosly tangled ball of yarn. No fiber, really cool messy pretty strands of fiber.
Haha See!
I just need to do this for me, so here it goes.
I have to come back later becuz my thumbs get really tired since I am posting via my cell. :P
But hey, its a starting point.