My husband was also misdiagnosed with Alzheimer's and had a severe reaction after a month on aricept. In '05 he had a fall resulting in a left frontal lobe brain bleed. The symptoms increased and the diagnosis was made. The shunt surgery is not a good option because of his age. He is 79 yrs. old. Very difficult to find a support group for NPH and I really don't think an Alzheimer's group would be helpful.

Hi Deser192, I'm sorry to hear of the ordeal you and your husband went through with the misdiagnosis of NPH. You should know that NPH has been around for over 50 years and the ability of the doctor to diagnose this condition really has nothing to do with the age of the doctor but his ability to get the complete picture including asking all the right questions. NPH testing has never been discontinued on a regular basis, rather, the tests used to make the diagnosis are evolving, like for example doing extended spinal fluid drainage as opposed to a single spinal tap.

My mother was having trouble with her heel "sticking" to the floor when she was walking; she also had a tremor. They also had her on psych drugs that can cause those issues, esp. after her hospitalization for a serious kidney issue. After that, she couldn't stand or walk by herself. They thought parkinsons and were going to start her on a parkinson's drug, but we managed to get Mom off the psych drugs and her physical issues went away. She also was not taking the parkinson's drug the next time we went in to see the neurologist. He had her go through the motions and when she had no tremor and could get up by herself, he's going "this is amazing!" - "That's incredible!" - but then he found out she wasn't on his pill and boy did he ever get mad. I should also say that one doc did think that Mom had NPH as well and she was wrong on that count, but I would agree it's worth the test to find out.

NPH is what my husband had - misdiagnosed w/Alzheimer's. After a horrible mental reaction to Aricept (taken off it after 2 weeks of hell - against Dr.s "best" judgement) - Shunt surgery - returned to near normal self. If we had proper diagnosis when gait issues first appeared I am sure recovery would have been better.
Best advice - if your Dr. is over 50 get a second opinion if you suspect NPH - testing NPH testing used to be routine, but because of percentages (cost) it was discontinued. Dr.'s over 40 began practicing after NPH testing was discontinued on routine basis. Estimated that 10% of all nursing home patients have NPH and most could (or could have) benefite/d by shunt surgery.
While MRIs are 1st line test - only spinal drain test (removes fluid - and see if improvement noted) is done will you know if shunt surgery will help (or if it is NPH).
Immediately after drain - my husband who entered hospital via wheelchair unable to walk more than a short distance - was able to walk to car. Next day went out to eat - thinking was reasonably clear - no wheel chair needed.
Symptoms come back within 2 - 3 days - then surgery was done - results were reasonably good - if had been done sooner (took nearly a year to get diagnosis)- I think results would have been even better.