I've been checking this board recently, and am so interested in (and very sympathetic to) everyone's situations here.

This is such old news to you all, but I'm just wondering exactly how your phyicians initially suspected Alzheimer's, and what tests are run for a positive diagnosis? Is it a disease that has to get to a certain stage before showing up on an MRI?

My grandmother exhibited many of these symptoms, but I think before Alzheimer's was "invented". She died of cancer in 1961 in a mental hospital. She had been paranoid for several years...believing my aunt was trying to poison her, etc. Thank God they lived in a small, rural town, and her wandering into other people's houses was tolerated by the neighbors! I'm fairly sure that it was some neurological disorder, but we'll never know what.

I've mentioned that my dad had many of the symptoms of all seven stages of Alzheimers, but has Normal Pressure Hydrocephalus. Seems like the big difference between the symptoms of NPH vs. Alheimers may be the lack of dramatic personality change, paranoia, obsessive behavior, etc. Even with fairly severe dementia, I haven't heard of those characteristics being common with NPH. As a matter of fact, my dad's primary care physician must have known something about NPH, because he quickly decided that it was *not* Alzheimer's.

Just curious to know what you went through to get to a positive diagnosis, and if it was a clear path or a wandering path. ;-)

Hello Pat,

how's it going? In our case we never actually got a diagnosis. In November the GP said 'normal for her age; not Alzhimer" and prescribed ARICEPT, a drug used only for early onset Alzheimer. We discontinued it because of side effects and no improvement

In February the doctor said "fast deterioration, probably Alzheimer's, get an MRI done" and prescribed Namenda. A drug for later stage Alzheimer and other dementias.

This has not yet been done .Mom is going out of town for 3 weeks from March 10 to 31, and when she gets back we will see ... B and SIL are not in favor of it and Mom is petrified of it ... B thinks 'leave her alone, what difference would it make at age 96.5 if we have a name tag on it?' He could be right.

Love,
Martha

We went through several years of my dad acting a bit strange. Not bad, just a little.
I started going to the doctor with him and telling him about the little things that concerned me (dad repeating stories of long ago 20x a day, forgetting to shower and change clothes, forgetting to take meds-things he had always done before). The doctor pretty much blew it off as dad always "seemed" ok to him.
After we moved in with dad, he was getting worse. He also has congestive heart failure. I took him to the doctor and she refered him to a geriatric clinic at our local VA hospital. there, they did a psychological exam as well as a physical and blood tests. He went for an EKG, CT scan and an MRI. Based on all of the findings, the doctor concluded it was alzheimer's. She explained to me that it was more important to rule out other causes of his memory loss and behavior. One of the blood tests they did was a TSH to see if there was a problem with his thyroid gland. Since thyroid problems run in dad's family and I have hypothyroidism, they needed to rule that out as thyroid problems can affect the brain.
The doctor could not conclude solely by the MRI that dad has alzheimer's. It was the culmination of all the tests that the doctor based his conclusion-that and the fact that Aricept was helping him.
The first MRI did show that dad has a brain tumor called meningioma. It's most likely not cancerous. He was sent for another MRI (with radioactive dye) and we go to see a neurosurgeon on March 7th to find out the results of the MRI and the reccomendations for course of action.
Barb

Hi Pat,

My mother was initially dxed with "dementia" at age 85. In looking on the internet, I came across the 7 stages of Alzheimer's and quickly recognized the progression of symptoms that Mom had matched about stage 3 to 4 on that model. I took the list to her doctor along with my observations on Mother's behavior and confusions. He agreed her problem could well be Alzheimer's. The following 3+ years and her continual decline seemed to bear out that diagnosis. She never completely lost the ability to speak, but she could not voice a complete sentence before she was lost in confusion. She could reply the well-used sentences of "I love you, too" and "That feels nice". 18 months before she died she forgot how to walk, and in the last months she lost a lot of weight and her joints became somewhat rigid.

I think the only value of an accurate diagnosis is if there is an effective treatment available or to give the family an idea of what the future holds. I agree that there comes a point when more testing is pointless because the patient is too debilitated or far too old to have time for treatments to be effective. As Mom forgot how to walk, she fell over backwards 4 times, each fall was a trip to the ER and the first two times she had a CT scan. The 3rd and 4th ER visits, I said no to the CT scans, that we'd watch her for signs of a head injury and bring her back to the hospital for testing if symptoms appeared. I felt that was reasonable. She didn't know me, didn't know day from night, and had forgotten a million other things. I felt she didn't need any scary or painful medical tests or situations and there was nothing medicine had to offer to cure her.

I think at this time the absolute definitive Alzheimer's diagnosis is still made post-mortum. There is some shrinkage of the brain that can be seen on CT or MRI before then and is a probable diagnostic finding.

Wishing you well - Barbara

It's interesting and educational hearing about the various experiences. It sounds like there are a lot of factors involved in the diagnosis, and that an MRI won't necessarily diagnose Alzheimer's - it will just help to rule out other causes, such as NPH. Also, a lot depends on the age and general health of the patient in how aggressive the doctors would want to be. The MRI is a piece of cake, so tell your mom not to be scared...as long as Medicare and Insurance will pay. At least you'll know more than you know now.

I see everything through different eyes, because we just couldn't put together my dad's symptoms and make them make sense. The dementia was severe and so were the gait problems (lots of falls toward the end), but we *never* put those together with the incontinence. He'd been treated for several years for an enlarged prostate, and we thought that was causing the accidents. Would have been nice for his urologist to be more alert!

I know exactly how that feels to try to decide what's best for an elderly patient. It's awful having that responsibility! In the last two years, Daddy has gone through the shunt surgery, cataract surgery in both eyes, and is now facing a prostate biopsy. Lots of discussion with the urologist before even *talking* to my dad about a biopsy, because, if it's cancer, what next?
And how might any treatment affect his neurological symptoms? We'll find out soon, I guess.

From what I have heard about prostate cancer, the older the patient, the less aggressive the tumor. My Father in Law had it and died at 91 from other causes. The method his urologist chose was 'watchful waiting.' It didn't increase very much or cause insoluble problems. I would spare an elderly man that surgery if possible, although there are other non surgical treatments such as radioactive 'seeds' and other types of radiation.

The surgery can be devastating . My ex husband had it and it is part of the reason we are no longer together. AFTER he had recovered from incontinence and impotence, he chose a younger woman who had never seen him in that kind of shape. Also because I was away a lot caring for my Mom in NY, but that happened after he had already survived the prostate cancer by over 4 years; now it is close to 8 years. In medical terms, he is cured, in his own mind, he is dying. Has been 'dying' since 1996. It doesn't stop him from having his full time live in "friend with benefits" however. This probably belongs on a Prostate Cancer Board and not here ...Sorry..

M

Hi Pat,

Just one other thing, the doctors I've worked with say the most prostate cancers in elderly men are so very slow growing that most patients die of old age or something else before the prostate cancer is large enough to be harmful. That's just food for thought as you take your Dad to see the urologist.

Good luck - Barbara

Thanks Martha and Barbara,

I didn't mean to get off topic, either, but I appreciate the advice. I think this is not fast growing, as his PSA has been elevated for several years. He's not worried, but (selfishly) I'd really hate for any treatment to make the incontinence reappear. He's a typical stubborn man, and doesn't like his four daughters meddling in his business...even if it is our problem. He thinks his car is just fine, too..."runs like a clock" as he will tell you. ;-)

Pat

Just thought I'd tell you my uncle was diagnosed with prostate cancer when he was 75. He lived another 10 years with it. The last few weeks of his life were rough but most of the time, he was his old self-just a little slower.
Barb