interesting story - he had NPH normal pressure hydrocephalus
I’d not heard of that before but apparently it does get mistaken for Alzheimer’s
https://www.bbc.co.uk/news/world-us-canada-49375308
I have this condition. It was an accidental finding about 7 years ago but the neurologist who diagnosed it was not a good one and seemed intent on getting rid of me off his books as soon as possible. He arranged for me to have two MRI scans of my brain, three months apart. Since he couldn't spot any differences between the two MRI scans he told me that my condition wasn't getting any worse, I required no treatment, and he discharged me. I really don't know how fast the deterioration usually is in NPH. In my case, after approx 5 years of getting worse and worse I couldn't really walk upright for more than a few feet without staggering badly and bumping into walls, furniture, corners etc and I was very close to buying a walker of some kind. I also had a very wide gait which made me look weird. My memory for vocabulary had deteriorated badly, and my general speech fluency had disappeared. I find it hard to have conversations now because I can't speak fluently. (Being deaf doesn't help.) I lose the thread of what I'm saying a lot too.
I asked my GP for a referral to see someone about my brain issues, and ended up being seen by the same man, much to my annoyance. This time though, he referred me to a neurosurgery department in a different hospital. Hallelujah! It took at least 18 months to go through the motions of having more tests to confirm the diagnosis, a lumbar puncture, various long conversations about what my options were. I finally had surgery (an
ETV) earlier this year. It has made a big difference to my walking ability. I still stagger occasionally, particularly when I'm really tired, but I am generally much improved. My general confidence in being outside has improved as a result. Unfortunately it has had no real impact on my spoken vocabulary, general apathy, intellect, and, if anything, I would say my intellect has diminished since going through the surgery. I think I am disappearing, little by little, and within a few years I will be completely demented and unable to look after myself. I wonder how I would have been if I had been treated when the condition was first discovered.
One thing I haven't mentioned is that NPH is usually diagnosed in older people. However, whatever it is that causes it can occur at any age. I was told by both the neurologists I saw that the MRI evidence suggested that I had had the condition since birth or childhood, which explains why I could never stand on my head like other five-year-old kids (it hurt), and my balance was so bad that I couldn't walk a balance beam. I was so bad at it, in fact, that PE teachers thought I was mucking about for attention and so I was told off for my repeated failure. I've also discovered that my pituitary doesn't look normal either, but I haven't had any blood tests to check out my pituitary function.
I’m glad you were able to get some benefits from the surgery
