My husband's dementia was first diagnosed by his primary care physician. I'd been concerned about some of his behaviors and called ahead to share them with the doctor. He went through the classic questions and sent us to see a neurologist. The neurologist did some testing in the office with questions, asking husband to remember three words, etc. He did a few things with pencil and paper. He confirmed the diagnosis (it's been five years ago this summer) and started us with the traditional medications and treatments. The doctor at the nursing home where my husband ended up this week (long story) asked me if he'd ever been diagnosed with Parkinson's or even Lewy Body, based on some physical observations. It started me thinking about the fact that we never pursued any more in-depth testing at the beginning of all this. What was your experience?
Often, the symptoms of Parkinson's or Lewy Body dementia don't show up until years after the original Alzheimer's diagnosis. I have seen it many times with patients in the support group I attended for 4 years.
I know we have members whose spouses have Alzheimer's Disease and Parkinson's, and others who have Lewy Body Dementia. I believe there is a very recent topic on these boards by someone whose spouse was recently diagnosed with LB after many years. If it's not on this first page, it's not more than a page or two ago. ( I think)
Joy, My husband’s PCP referred him to a neurologist in 2007. When the neuro walked in the door and saw my husband reading a newspaper instead of talking to me, he immediately said my husband had FTD. That was before any tests. The neuro had some scans done and referred him to a cognitive psychologist, who did hours of testing and diagnosed him with vascular dementia, possibly with some Alzheimer’s. The neuro rejected that diagnosis, said that he had FTD, and would not prescribe Aricept or Namenda because they did not help FTD. But 6 months later, after more testing, the neuro said that even though those drugs would not help FTD, he was going to prescribe them anyway. He would not explain why. I realized we were being played for fools and stopped taking my husband to the neuro. My husband’s PCP treated him from then on.
It has been clear for many years that my husband does not have FTD. I later found out that this neuro diagnoses most of his dementia patients with FTD.
So my experience with testing and diagnosis was negative. I’m sorry I subjected him to all those visits. I still don’t know what my husband has – whether its vascular or Alzheimer’s – but it doesn’t matter. There is nothing they can do about either one of them.
Joy, My DH was diagnosed by his PCP only. She would have sent him for scans and to a Neuro if we insisted. We did not. Her thoughts were that even if a specific diagnosis was made the treatment would be no different since each individual progresses with different behaviors and medication is given on a trial and error basis until they find one that helps. I have never felt guilty about forgoing any of the advanced tests. It has been a long ten years but I don't think having a specialists educated guess as to which type he had would have made any difference for me nor would it have been beneficial to DH. We are all going down this rocky road together Joy, hang in there.
I was tired of my husband's selective hearing. I told him he needed to go find out what was wrong. I am not sure what he told the doctor but the doctor ordered a neuropsych testing and CT scan. My husband told me the doctor said he was fine, so we took off on the road again. (we live and at the time were traveling around working in RV parks) It was while in Nevada he went to the VA doctor and they gave him a copy of the neuropsych results where it was recommended he be referred to the dementia clinic. The VA doctor ordered a MRI and referral to a neurologist in Las Vegas. He diagnosed him with dementia of the Alzheimer's type. That neurologist didn't seem to know much about Alzheimer's so we left Nevada and went back to Portland are where the VA has a dementia clinic associated with OHS. That was 2008 - the rest is history.
My husband is starting to have his hands shake. I noticed it before he became aware of it. From others here I have read that is often the case - parkinson like symptoms.
My DH had mood changes and memory problems. He had trigyminal neuralgia. Went to a neurologist and he said that. DH was depressed and stressed, to yoni to have memory issues. He then had an. MRI neurologist said showed nothing. A few years later things were worse and PCP sent him to neurologist after. DH became lost in familiar places. They diagnosed mild cognitive impairment. Then through more testing AD. He had a PET scan and came back consistent with AD. Then neurologist moved found a new one and he said MRI was FTD. I do not believe that his symptoms and progression are more AD. The neurologist wanted to do a spinal tap to see. It is experimental and I said no. He is also a research neurologist. But to me it really doesn't matter he said would not treat it any different. DH is part of yearly testing for Reaserch. It has been 6 years since findin out what he had. In the beginning we were having marital issues and seeing a counselor. So I know it was goin on way before I suspected anything.
Around the time I was going to ask to join my wife with a session with her psychiatrist because I felt some issues weren't being address, she was in a bicycle accident which resulted in a TBI. 6 months later the speech therapist felt that L was continuing to decline and we started seeing specialists. She was considered to be an odd case and after a few months we had a FTD dx, the neurologist/psychiatrist who made the dx was shocked that she had a normal PET scan.
The TBI might have made the road easier for us than it might have been. It allowed for a graceful end to working, SSDI, and it was easier for her to share that she had a TBI with others than having FTD. She has improved in a few areas since the accident but overall gradual decline over time.
Interesting thread, and for me especially to read what you wrote, Paulc. My husband was diagnosed with MCI but was very much in denial. Then he, too, had a TBI from a bicycle accident. A piece of plywood came off a truck and hit his head. Like your wife, he has found it much easier to talk about a bike accident and to accept changes because of that. It has made the insurance settlement, still ongoing, very complex, but in many ways has, as you say, made that transition to not driving and a few other things a bit easier. His diagnosis is now AZ, frontal variant.
The site has been very helpful for me in many ways, but one has been to see how often MRIs show nothing despite serious symptoms. Some doctors have trouble accepting that. The other part is to see that many of you, like me, noticed symptoms so long before, things we chalked up to something like mid life crisis or depression. And finally, to help accept that a specific diagnosis doesn't matter that much. A lot of energy can be used up chasing that.
I noticed significant personality changes and some "forgetfulness", but nothing out of the ordinary. My husband has always been good about getting an annual physical, so when his PCP retired due to his own health problems, I took the imitative to find a new PCP who might be more alert to what the changes meant. after the exam, I spoke with the new PCP and told him about the various changes. Apparently my husband had told him that he was just fine and had no problems.
PCP sent us to a neuro and after several tests to rule out other causes, including an MRI that the neuro said was inconclusive, he diagnosed him with "pre-senile" dementia and prescribed Namenda. Well the Namenda made my husband more physically violent than he had been (neuro knew I was being abused) which ended him in a psych hospital. Psychiatrists at psych hospital said AD, but I felt that wasn't an accurate diagnosis, so I found a specialist who agreed to see him. While talking with the specialist by phone and describing my husband's behaviors, etc. he said "I know exactly what he has but I have to see him and all his medical records to be sure." After 2 visits he diagnosed him with FTD and offered us an introduction the physician in charge of the FTD research clinic at UPenn so DH could participate in clinical trials. From visit to PCP to specialist diagnosis was 6 months, 4 months which were spent in psych hospital due to violent behaviors.
I sought a specialist because unless we got an accurate diagnosis, I know he would still be living in a psych hospital. For a while I felt guilty that I did not have him participate in the FTD research trials at UPenn, no longer do because all of the trials to date have failed.
edited to add: DH also could not have tolerated the 150 mi rt commute and the rigors of the testing, etc.
LFL, my wife declined to participate in trials. She understood that she might have a placebo and the stress of attending testing would have been too much for her.
JudyBC, around 3 months before the accident, after a long drive with L I told one of her sisters "I think she has dementia." I think she had repetition in the car ride that day. Her sister thought it was just anxiety (my wife was diagnosed with anxiety problem). The sister did agree that the FTD dx a year later made a lot of sense.
For my husband, dx took quite some time. What really caught me was myrtle's post about FTD dx because he was reading a book!? Also, as LFL noted, personality changes and forgetfulness. When I think back: my husband always read. This is before tablets- magazines, newspapers, books- so, he would have likely been reading in that waiting room too!
What a fine line, IMO, it can be in the beginning between personality changes and a disease process. My husband was 28 when we met and we married quickly. He was in his 40's when "the troubles" started. What person does not change in their 30's and 40's?
So, trying to differentiate what was personality from what was a problem took awhile. His age was, I think, a partial cause for the urgency. The differential dx list included: brain cancer or tumor, anxiety, depression, ALS, MS. The tests were numerous as were the specialists.
Of course, my husband was depressed and anxious. He was prescient enough to fear for his career. Our location is mid-sized, mid-level everything, so he went to California Pacific Medical Center in San Francisco for a consult.
As the FTD progressed it became more classic and especially based on MRI's the dx was definitive. As joan said, very late in the process he developed Parkinsonian traits.
It was 1993, no one knew the word Alzheimer's. I knew it because I was working with a woman who said her father-in-law had it and was in a care facility, didn't know his children, etc. I thought, big deal, just remind him, yada, yada. Whatever.
For years I attributed my husband's behavior to distraction, stress, male hormones, etc. But when it got so bad that I knew had to do something, I asked our adult children if they had noticed anything. They said, yes, for a few years at least, but we'd never talked about it with each other.
I took him to our family doctor who knew us both well and told him: 'If it's Alzheimer's, don't tell me, make something up.' I didn't want to be where my colleague was with her FIL. And so the doctor did, 'short-term memory loss' he told me, and gave me an AD book by some doctors, saying 'You'll notice some similarities.' And so I swam in the river of denial for some time. Did I really know? Meh. When our situation finally got my full attention, I began extensive research, learning things I'd wished I'd known in the beginning, but there wasn't all that much available over 20 years ago.
Eventually I wanted to help ease the unending trauma and travail for others and so ten years ago I wrote one of the first books about AD by a caregiver with information I wish someone had told me in the beginning--not technical medical stuff, just caregiver stuff, had to self-publish. Now there are a lot. I also put up a free info website that I'm in the process of re-doing now. For 8 years I've written a monthly AD column for Today's Senior Magazine (todayssr.com). The editor says readers show the most interest in it, and I'm not surprised. Since the time when no one knew the word 'Alzheimer's' until recent years, almost everyone thinks about it now, it's not my writing, it's the topic so many worry about. I will never fault anyone who chooses denial or anything else one does to get through it.
Our PCP diagnosed my DH based on changes he was witnessing and the things that I told him. Last week we had another Brain Scan done, he confirmed what I knew that the disease has progressed rather rapidly. He has been gracious in dealing with my DH, he simply says that "your brain has been insulted by alot of things that are going on in it, this is why you cannot remember and get agitated." this has been a merciful manner to let him know. Of course I am in indepth converation with the same PCP about what is occuring. My DH has so many phyical problems that I do not try to bog myself down in terminology.