![]() This organization was mentioned by joopiter296 above: A positive genetics test would mean you are not free. Paulandpaul, not all the affect genes are known so a negative genetics test would not mean you are free. I knew about it because of of my family history, so in that way, I feel lucky.Īlso, does anyone else (women) have difficulty urinating? I have much difficulty getting my muscles working to "push" the urine out. And why do they NOT tell their patients about ALSA? The arrogance of some of the Neuros is appalling. My primary Doc is super because she listens, and does NOT claim to be an ALS expert. My questio is, how do we communicate better wiht neurologists who act like they "know everything," yet have notr expereinced being in the body of a PAL, nor been the caregiver of PALS, like I have. Also, I'll be cheked for carbondioxifde saturation ( anABG test.) I will be getting a hospital bed next week to help me breathe at night. I have a "blong" blog + song+ blong, at : And our music website I attended the ALS Adovocy Days in Wash DC in May. This is difficult, because I've always had an excellent memory, recall, etc. I am experiencing some of the "cognitive" challenges people rarely talk about. I have a wife and a puppy, and we live in a wonderful, suportive community in Northern Calif. I seem to be following my mom's and brother's progression. ![]() Like the others in my family who already died or now have ALS, have the E133A mutation. I' sure (intuitively) that one of my sisters either had ALS already (but not daignosed) or was goign to get it. I am the second youngest of nine children. My oldest brither Paul has it, and so do I. My mom was misdiagnosed for a year or more, then died at age 52. ![]() My brother died 2 and 1/2 months after diagnosed. then BAM ! it hits and we're gone (dead) in about 3 to 4 months. Our patern is the first one ortwo years, the disease seems to be failry mild. The women in my family tend to get it earlier, around 50 or so. Much of my family has sent blood sample to Northwestern Univ in Chicago. My family (from my mom's side) has a rare SOD1 mutation. Hi, thanks for your energy, heart, and determination to work for something, anything to rid our lives of ALS. ALS is a frightening disease and I hope you get the answers to your questions. Again, please chat with your doctor and your father's doctor if you have more specific questions on your situation. I hope this helps you and wish you well in your family research. If you can look at your tree and see that in the last 2-3 generations, there is no case of ALS in your father's family, then more than likely your father's case is an unfortunate case of sporadic ALS (meaning, not familial). In studying our family tree, we see that it usually hits every generation, without gender preference, but has been known to be "dormant" for at most two generations in some branches. He/She will ask if you have any cousins or siblings with the disease - if so, how many and at what age was the onset of the disease.įamilial ALS is rampant within our family. He/she will ask you about your family history and how much you know about both sides of your family (mother/father). Absolutely agree with RochesterBob on chatting with your doctor.
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