I am trying to help my dad to find a diagnosis for my mum. I got him/them home from Florida, because she had one colonoscopy to many...w no answers.
Long story short,,,4 docs thought NPH for sure, her MRI was "iffy" and her lumbar puncture negative...
So the docs say, she can walk,(she cant walk) it must be dementia..
She is almost as bright as can be expected...(allways a little dingy) But her gate, incontinence, and at times confusion...is the desription of NPH to a "T".
She also has bi polar, and in this situation, she has given up. Her psych doc still says NPH..and we feel the others just dont feel its worth any more effort.
How significant are the test, how many falses? I cant really word what i am trying to say, but i feel like when people get to a certain age, some docs just dont give it enough. She is 74, and can run circles around the stock page...
Or at least she could, when we thought we could fix her. But now she is loosing muscle mass and fading away to nothing. I think a trip to Boston, if we can get her in before she throws in the towel.
Oh well, thanks for reading, i am open to thought...

Dear P Ryan,

Finding a diagnosis can be very challenging and you seem dedicated to improving your Mom’s quality of life. I would like to first address NPH. This is a very rare disorder that has recently got a lot of attention due to a special on 60 minutes and a commercial. Similar to other dementias there is usually no known cause for NPH, and there is no definitive test to indentify it. NPH is known as water on the brain, this is due to the inability for the fluid around the brain and spinal cord to drain properly. NPH is usually identified by enlarged ventricles, and brain shrinkage, however these two identifiers are also seen in a brain with Alzheimer’s disease. CT scan and a MRI are not sufficient for a diagnosis, there must also be a lumbar puncture and a spinal cord fluid scan called a RHISA scan. The main significance these sorts of test have is to know how to treat, or to care for your loved one now and in the future. Some cases of NPH are treated with a shunt. Your Mom’s symptoms could be treatable, but they also may be a part of a dementia in which case her symptoms become progressively worse and planning for her future care will be very important. The number of inaccurate tests is not known, but if you feel that your Mom’s care was insufficient, then you are in the position to find new doctors and request a more thorough evaluation. If you are concerned about how your Mom is being treated by her medical professionals because of her age perhaps finding a Geriatrician, a doctor that specializes in the care of older adults, could improve her primary health care treatment. A Geriatrician could act as the primary physician and is well versed in understanding the needs of our aging loved ones. To address the neurological problems and cognitive changes and to find a more probable diagnosis, it is highly recommended that you find a physician who specializes with dementia to do a complete work up. The thorough evaluation for dementia includes a full history; a series of evaluations that test memory, reasoning, vision-motor coordination, and language skills; a physical examination; an examination that tests sensation, balance, and other functions of the nervous system, a brain scan to detect other causes of dementia such as stroke; laboratory tests, such as blood and urine tests, to provide additional information about problems other than Alzheimer’s that may be causing dementia; a psychiatric evaluation, which provides an assessment of mood and other emotional factors that could cause dementia-like symptoms or may accompany Alzheimer’s disease; and finally interviews with a spouse, partner, or close family member or friend of the person suspected of dementia. Your family’s experience is very similar to others searching for a diagnosis, treatment, and care for their aging parent or loved one.

You mentioned your Mom is losing muscle mass; this is often due to inactivity which happens as a result of a physical ailment, and or with age. Some options to discuss with your doctor include daily exercise (which could include chair exercise if she is unable to walk) and/or the usefulness of a physical. Physical therapists may help decrease the risk for falls by giving tips for around the house, like removing throw rugs, etc.

I hope you and your father are able to find a diagnosis and the care your Mom deserves. Please feel free to contact our 24 hour call center and speak with a Care Consultant directly about this or any other topic at 800.272.3900. Thank you for participating in the Alzheimer’s Association’s Online Community.

Sincerely,

Jaimie E.
Alzheimer's Association
Care Consultant