Hello, it's been a while since I have been here but have had multiple new health issues in my family come into play so I want to ask if others have dealt with these things.
My background- I am a 3/4 and my father is at least third generation with Alzheimers, and I believe at least 4th (earliest ancester I have identified says she died from pellagra, but no one else in her immediate family dealt with that because they should have had a more varied diet. Pellagra is from eating a primarily corn-based diet). Both of my father's sisters have extensive heart disease and have had heart attacks, surgeries. His older sister has COPD and is on oxygen, and also has type 2 diabetes. His younger sister had two surgeries for colon cancer recently, and her son had a massive heart attack recently in his mid-40s.
It is this younger sister that apparently has just been diagnosed with hydroencephaly, which has caused memory issues, balance problems, and incontinence. My brother says that is what they think might be causing my father's falls and walking difficulty, but any hydroencephaly he may have is not as severe as hers. She has not been diagnosed with Alzheimers, but could obviously be a possible 3/4 or 4/4. She hasn't done her DNA.
Has anyone heard of Alzheimer's associated hydroencephaly? Or could this be related to a poorly functioning heart? My father has high blood pressure and high cholesterol and has been on statins, but has not had a heart attack probably because he never smoked like his sisters did.
Would love to hear thoughts on this.
Hydroencephaly with Alzheimers?
Hydroencephaly with Alzheimers?
3/4, ADD, Aspergers, Fibromyalgia, father is 3rd gen Alzheimer's 
Re: Hydroencephaly with Alzheimers?
Hi Noogie;Noogie wrote:
Has anyone heard of Alzheimer's associated hydroencephaly?
Are you referring to hydrocephalus? (Perhaps the terms are the same - in the US, it seems like medical terms evolve every 10 years or so, just to keep us on our toes!).
My very quick google search indicates higher risk of dementia, but not necessarily AD, with normal pressure hydrocephalus. Here's a link. It's quite possible that older adults with hydrocephalus get misdiagnosed with AD.
Slacker
E4/E4
E4/E4
Re: Hydroencephaly with Alzheimers?
Yes, that would be what it is. I was just relaying what my brother heard from my mother, so I wasn't sure if that was what the doctor said or it got jumbled on the way to me.
It seems like this may have been a rather quick onset for her, when for my father it was gradual. My father even had back surgery to try to help the problem, but it didn't do much good. The longer he stands, the faster it kicks in and it is almost like his upper body is separated from his pelvis and legs and he can't control what his legs do and he starts to lean way back like he will fall backwards. He has injured himself almost on a regular basis from falls where he loses his balance and can't catch himself in time. It's like he can't feel it coming and is shocked that he fell.
If his sister is now having the same issues, I can't help but feel there must be a genetic component to it.
If I had the money, I would buy 23andMe tests for my whole family and fuss at all of them to go keto and work hard to save their lives. Things that didn't affect past generations are really taking their toll now. I keep telling people to pay attention to their ancestral homelands too, like I am almost 100% Northern European, so there really is no reason for me to be eating pastas and tomatoes and New World foods. I bet the first generation in my family to have something like spaghetti was my grandparents, and that probably wasn't until they were adults. If I have have it now, I will be doubled over in pain, and I don't have celiacs or anything worse than IBS.
I find all of this fascinating, but also a little nerve racking. I want to know as much as I can not just to try to save myself from this kind of future, but to save my son, too.
It seems like this may have been a rather quick onset for her, when for my father it was gradual. My father even had back surgery to try to help the problem, but it didn't do much good. The longer he stands, the faster it kicks in and it is almost like his upper body is separated from his pelvis and legs and he can't control what his legs do and he starts to lean way back like he will fall backwards. He has injured himself almost on a regular basis from falls where he loses his balance and can't catch himself in time. It's like he can't feel it coming and is shocked that he fell.
If his sister is now having the same issues, I can't help but feel there must be a genetic component to it.
If I had the money, I would buy 23andMe tests for my whole family and fuss at all of them to go keto and work hard to save their lives. Things that didn't affect past generations are really taking their toll now. I keep telling people to pay attention to their ancestral homelands too, like I am almost 100% Northern European, so there really is no reason for me to be eating pastas and tomatoes and New World foods. I bet the first generation in my family to have something like spaghetti was my grandparents, and that probably wasn't until they were adults. If I have have it now, I will be doubled over in pain, and I don't have celiacs or anything worse than IBS.
I find all of this fascinating, but also a little nerve racking. I want to know as much as I can not just to try to save myself from this kind of future, but to save my son, too.
3/4, ADD, Aspergers, Fibromyalgia, father is 3rd gen Alzheimer's
Re: Hydroencephaly with Alzheimers?
Dear Noogie,Noogie wrote: I find all of this fascinating, but also a little nerve racking. I want to know as much as I can not just to try to save myself from this kind of future, but to save my son, too.
I'm so sorry to hear of your family's continued health concerns, and totally understand your goal to spare yourself and your son from them.
We tend to think of Alzheimer's disease as being the term for any dementia, but there are other types of dementia and other diseases of the brain, typically labeled by where they occur or who first described them (ex. front-temporal dementia (FTD), Lewy Body Disease, white matter disease, vascular dementia, small vessel disease.) The link that Slacker provided is to a condition that is different than hydrocephalus seen sometimes in newborns, or after injury, and is not the same as Alzheimer's. Normal Pressure Hydrocephalus (abbreviated NPH) seems to happen in the lower areas of the brain, when the passageways for cerebral spinal fluid (CSF) to leave the brain narrow and the ventricles that contain CSF are forced to enlarge to contain the extra CSF, which can cause injury to the areas of the brain that the ventricles compress. The symptoms you described your aunt having are those seen in NPH, and so it's possible her doctor referred to it as hydro-encephalopathy (meaning the fluid (hydro) is causing damage to the brain (encephalopathy), as opposed to amyloid, or tau, typically seen in Alzheimer's. Here's an article about it from the Alzheimer's organization. Normal Pressure Hydrocephalus
It's sometimes linked to dementia, but the causes are uncertain. It may well be unrelated to having pasta and more related to general cardiac issues. (i'm pretty sure my Northern and Central European ancestors didn't have pasta either--but they did have lots of dairy, potatoes, beef and sausage--so maybe a Mediterranean diet would have been an improvement.)
I hope that your aunt has a medical team that is taking the time to explain all these confusing terms, and that she knows how much you and your brother care for her and your dad's welfare. Don't assume that the conditions they have are inevitable for you, your brother or your son. It's highly likely that they had life experiences and multiple health conditions that tipped the balance against them. You have time and knowledge on your side. I would also see if you or your brother can ask her medical team if they would recommend specific monitoring of your vascular health.
4/4 and still an optimist!
