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May 01, 2009, 11:12 AM
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Member Since: Jun 2007
Location: Chicago, Illinois
Posts: 5,518
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Quote:
Originally Posted by _Sky
Get yourself as healthy as you can, exercise, eat right, go to positive places to draw on spiritually, educate yourself about your symptoms, research free studies and pursue obtaining approval for those tests! Create a support team of doctors, nutrititionists, physical therapists, psychologists and counselors. Let each one treat what symptom they know to treat and maybe together you will have a better outcome than your mom. Please don't assume things... it isn't in your own best interest.
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Sky
Dr. Kiuru-Enari confirmed my diagnosis back in 1998.
I'm as healthy as I can be at this point, and eat healthy foods when I'm able to eat solid foods. I'm whole in my spirituality and relationship with God. I've been educating myself on this disease for the last 13 years, not to mention growing up observing the behavior of a "patient" very close to me (mom). I know all the medical and personal stories of my ancestors in Finland.
I appreciate your efforts to help, but I don't think you understand. It's like telling a patient with Alzheimer's disease if they focus on nutrition, education and positive reinforcement, they will no be forgetful and confused. 
The amyloid protein that effects the brains of Alzheimer's patients is the same type of protein that is produced in my bone marrow and is flowing through my bloodstream. The amyloid plaques slowly lodge and build up wherever they choose - organs, nerves, and all tissue down to the cellular level. My face is paralyzed/drooping with what they call a "classic Bloodhound look," my corneas now look like the surface of the moon, my kidneys are producing way too much protein, I have a dilated aortic root in danger of dissection, orthostatic hypotension causes me to faint - even sometimes when I'm sitting, and occasional cardiac arrhythmia. My skin tears at the slightest scratch and develops dark purple sores. I have peripheral neuropathy in my arms/legs, as well as autonomic neuropathy (causing the heart rhythm/BP and gastrointestinal problems). I also have intermittent bouts of trigeminal neuralgia. It has also begun to infiltrate my lymph nodes.
I don't qualify for a stem cell rescue as with other systemic types because mine is hereditary. Due to a mutation on the 9th chromosome, the gene would continue to instruct my bone marrow to produce an overproduction of amyloid.
I deal with my pain and overall health problems as best as I can. It's the problems I'm now having with my brain function that concerns me most. Medical literature confirms a build-up in the frontal lobe.
Would you give the same advice as you gave me to an Alzheimer's patient? Wouldn't the professionals you mentioned need to have at least SOME knowledge of Alzheimer's disease in order to help the patient? That's my problem - no one has any real knowledge of my illness and are quick to assume the effects of the amyloid don't matter.
As for my husband, you're right about it causing him more grief out on the streets. I wish people would stop calling it the "Mexican flu" and blaming it on Mexicans. It only leads to further discrimination. That kid in Mexico who first got the disease got it from a nearby pig farm owned and operated by a U.S. company. I'm glad they're not calling it the "American Business flu." 
My mother-in-law is a nurse in Arizona. A frantic doctor approached her the other day and said "I just came in contact with a MEXICAN! WHAT SHOULD I DO!?!" My husband joked she should have told him "Give me your wallet and your expensive watch and you'll be safe.'" 
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