Today my husband took me in for our 1st evaluation by a team of experts to the UCI MDA ALS and NEUROMUSCULAR CENTER Clinic and to meet with Dr. Mozaffar. What a wonderful resource this is. I met with a speech and language pathologist, a physical therapist, a respiratory therapist, and a licensed clinical social worker. We also met with the research coordinator the MDA Representative and the Medical Assistant. And we met with Dr. Mozaffar who told me in no certain terms, I have ALS, but we already knew that.
He was most interested in getting my genes tested, particular the SOD1 gene. Because I have 2 known relatives who died from ALS, my dad's sister (my Aunt) and my dad's cousin.
He also was excited to tell us about 3 clinical trials going on right now, they are all very interested in a case like mine that is familial. One is in St. Louis, one in Baltimore and one in Boston.
Next on the agenda is the sinus mri and then the chest mri and then a barium swallowing mri.
Its getting increasingly hard to type. I get tired more easily so farewell until I log in again.
I think about you all the time! How hard it must be to accept all these hurdles, knowing your journey will be tough. I think you're so great and so strong. Most of all, you raised an AWESOME daughter.
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Your blog looks great! We had so much fun with you at Disneyland; the picture of you with all the grandkids is adorable! I'm sorry you have to go through all this, and will keep on praying for you everyday. You are being such a great example - I love u. -- sb
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