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I Have Alzheimer’s or Another Dementia
I feel stuck in this angry , bitter place. I have a hard time letting go of things, I'm more a nagger, a lecturer and becoming a little 'know it all'. I don't like this person but I don't know how to make her go away. My behavior is much more confrontational than ever before, I respond like someone else at times, but I never know when "Cybil" will appear. Anyone know if there are any tests that can determine if it is FTD Dementia? I get easily agitated, and of course, I recognize it AFTER the tornado ran thru the entire town and wiped away Everyone in its path. I read that Aricept can be detrimental to FTD so it would be nice to know, if at all possible, if it were that. Went thru neuropsych 4 hr tests, no mention of FTD, diagnosis unspecified neuro cognitive disorder, probably due to Lyme Disease and probably as well , to other inherited mental illness! Last year diagnosis was the same but the cognitive decline was quite significant, esp in executive function, memory ,i don't remember the rest. I see my neurologist on the 15th.
There are more specified neuropsychs that run like 6 hours or more that can tell the dementias apart better.
Some neurologists do PEC Scans or other MRIs that they claim show Alz or FTD...however, you should note that (although *some* rely on these tests) these tests lack specificity....in that many of the normal population show the same biomarkers but are perfectly fine. They rate these around a 35% specificity. So they are not reliable enough dx off of.
Aside from the Major Neurocognitive Disorder...all the kinds doctors like say it is, really are just guesses. Sometimes they are good educated guesses (based on tell tale signs and symptoms sets that are telling), but more often than not, they based on doctor's preferences...like those who dx everyone as Alz. There no true way tell until one dies and they autopsy brain. Have you considered donating you brain that Dr. Alan McDonald(??) who found Lyme in Alz brains??
For me, I had get the Lyme part taken off my first dx by getting a spinal Lyme test...in order rule it out. IF you get a spinal, please make sure that they include a number of rule out tests like viral, fungal, and bacterial infections...as these are all fixable causes.
One way you can know, however, is whether the issue started after you started Aricept. And, if you have not been on Aricept very long, you could try going off it for a bit and see if that doesn't improve things. As someone else said, there real no way of telling who going do well or not on Aricept....so the practice is put everyone on it and see. And, indeed, not doing well on it is a medical sign of one of the dementias that do not do well on it.
That said, dementia is brain death....it mean that you brain being attacked in parts and parts are dying. It have no particular order what part go when.
As you lose background tasks, ones that you don't particularly notice, I found that I lost many of the things I had learned in life on how keep my cool and make stupid things people do be ok. I called them the write offs. And things that used not phase me started bothering me and taking a long time process - like weeks. I was shocked by this at first...as I saw a pattern starting develop. But in the end, and I as started getting know others with this and saw that they had it also, I realized that it had a lot do how people approach me. Those that were hostile me tended be met with equal amounts of hostility back...and there is little I can do about this. And, if you read the CG Sections as well, you will find that there a fair amount of that being described over there as well.
The FTD behavioral variant tends come with lack of inhibition and the tell tales are sexual promiscuity and money over spending issues.
On the good note, if you do get an FTD dx, there are really great FTD org and support groups. Indeed, of all the dementias they doing things the best.
Hope that helps.
There are 2 types of thinking....and I understand both perspectives. One is the CG idea that, seeing how they likely came in things late in the game when a person is quite impaired, why put people through that. The other is PWD, who often come in early in the game, when it very first starts interfering with their lives. These are 2 completely different points of reference...and often amounts apples and oranges conversations.
Also, there are 2 different kinds of Neuropsych Tests. 1 the basic test see if a person fits the criteria dementia. The other is a MORE specified test see *which* dementia pattern it is...ie whether it FTD, Alz, Lewy Bodies (not every neuopsych person runs this one). And this a much more detailed and specified test.
This is the Alz Section...and Obrien is a PWD who is asking how she can find out whether she specifically have FTD or not. She will have make up HER mind whether she up for the testing.
My attention in this section, the section for PWD, is *how* help US be proactive and get the answer WE are seeking. This may sometimes conflict with or contradict what CGs do. Most US PWD want answers. We want know FOR SURE...or as sure as we can. Because understand that we have been told we going DIE...and that a bit hard swallow without being SURE...as in absolutely dead certain sure. So it very common for PWD want extra testing...again, just be sure this is what it is before we give away our assets and sell our souls. In this case, Obrien wondering whether the Aricept could be causing her problems...which is a fair question be asking. And, as a human being, she have a right for her doctors tell her this...and answer this question for her.
As for CGs...I see the value in late stage of not bothering with testing...however, I also cringe inside a bit when I read it, because I can't help but thinking...but what IF? What IF it not dementia...what IF it was just a B12 def or low thyroid or an infection...and people are just letting us die for something that could be easily fixable? However, I generally don't say anything because I don't think that there is an easy solution...and CGs have their hands full. But I know, for me, I would want be given the benefit of the doubt.
Maybe it make me a dementia pioneer or something, but when they wanted do spinal on me for rule out Lyme as a cause and see if Alz....I asked them tack on EVERY test for fixable things that could cause this. When neurologist asked me why, I stated that I did not want die if I did not have do....and he commended me for be only person who had ever asked him this. I said it really should be standard anyone dementia who you doing a spinal on. The 23 tests that they ran, aside from give me Alz dx, were negative for anything fixable...and as hard as that was hear, I am glad I did it...because what if it had been something fixable.
I do think there a big difference if others are seeking this dx for us, or whether we, the PWD, are the ones seeking it.
In any event, the testing is there and exists for anyone who wants it. That don't mean everyone have do it.
Hope that helps clarify for you.
O'Brien...My husband went for the "long" test for the purpose of knowing what areas of his brain were or were not affected. The knowledge was helpful to him.
This if from UCSF and may be of interest to you:
Neuropsychological testing is useful to obtain a clinical assessment of the disease. These tests evaluate conduct, language, visuospatial abilities, memory, abstraction, planning and mental control, motor skills and intelligence. Tests of the FTD patient may show visual and memory abilities intact. However, abstract thinking, word generation, motivation and ability to follow rules may be disrupted.
Here is something else from UCSF:
Hi OBrien, I'm Joe, 56 and was diagnosed two years ago with Early Onset Alzheimer's. The only suggestions I can help with, is: Let the doctor know everything, as you probably have already. Ask lots of questions. Let the doctor do his work, and have patience with them, as you no to have them get it right. It took me awhile to get my diagnosis. Keep talking to us on this forum, I don't have the answers, but I understand what your going through, I've had the same reactions. People that don't have a diagnosis at the time, have a lot of fear and frustration, which is you don't have memory problems, they will never understand, but please have patience with hem, as like us, they are human, and some things are not as simple as they seem to be.
I hear and feel your anger and frustration, the final diagnosis is never ever easy to hear, and to know that there isn't anything we can do about it. Let your loved ones and friends know xactly what your going through, as being honest and being upfront with them, may give you some peace. I cannot say in words what I am typing, as that is a different part of the brain. I understand and support you in your frustration fo knowing what's going on. Please keep us updated, and please know that you are not alone.
Good morning o'brien. I sooo feel your pain. I am in very much the same place as you. I was dxd with early onset about 2 yrs. ago. My new neuro is "questioning" that DX and has ordered neuropsych testing which will be done the end of April. I am greatful that the testing has finally been ordered, but being in limbo again truly Sucks.
In the meantime I am also going through many personality changes that really scare me. My response to just about everything seems to come out as anger. You called your "alter" Cybil, mine is now known as "Lizzie Borden". I am also wondering where "I "went? I know from reading these boards that the real me is still in there somewhere, but right now I'm having a helluva time finding her.
I can't offer you any good advice or suggestions right now but I do want you to know that you're not in this alone.
For now just keep posting, sharing, venting and commiserating. I intend to do the same. I know we will come out on top with all of the support and wisdom that exists in this community.
Best of all to you.
Hi Lynda, One of the benefits of this site is having you and O'Brian chat with each other.
Some PWDs have found it helpful to speak with a counselor. You must select one knowledgeable about dementia . Your local chapter is a good source.I am glad you are getting the neuro done. It should be administered to all before a diagnosis. Why does doc think you were misdiagnosed?
Thanks for your post Mimi. I am currently looking for a therapist but am having trouble finding one that deals with dementia issues. I have sent emails to three so far and am waiting to see if they take my insurance. I only want to pursue the ones that offer a free consultation.
The reason my doctor questioned my dx is because she is an a**hole! Supposedly she treats and diagnoses dementia but I am not impressed. She takes my insurance and unfortunately that is a huge consideration for me.
Thanks for your help.
Thank you for this post, I am new here and I am not the patient, I am dealing with two pt, one my mother age 87, diagnosed with mixed dementia. She has had minimal testing, I am sure due to her age. The other my sister 65, diagnosed with Alzheimer's, but she disen't want anyone to know.
It had not occurred to me that there could be other cause i.e. Diseases, my concern is my mother was put on Trazadone which she didn't take right, I speak to her everyday, I noticed changes in her as soon as she started using this drug. Fast forward about two years she fell last spring and by mistake did not take the Trazadone for a few days, by day one I had people calling to say that when they went to visit her they expected her to be upset and more confused than normal, they said the opposite was true, they said she was the clearest headed they had seen her in a couple of year, (length of time she has been on Trazadone for sleep), they all said that she was her old self that they just could not leave when the time came for them to go.
I went to care for her while she mended, I realized that her really good days correlated to no Trazadone the night before. I stopped giving her the Trazadone at bedtime, right away I noticed her old self and memory was coming back, (thought I would never see that person again) the first couple of nights I could just sayi had given her the sleeping pill and she accepted that, by the third night she knew she had not taken it. I took her to her doctor explained what I and others had observed, I asked for her to be taken off that Med, and a notation to be put on her file not to give it again. Everything was fine for a month or do she was on a low dies of a narcotic at bedtime, so she slept. When she no longer needed this she went to her doc and asked for a sleep aid, the doctor gave her a script for the Trazadone, I knew with in a couple of weeks, because she was slipping away before my eyes. I made a call to her doc, she said she would change the Med fir sleep. My sister went eith her for this app, this was hood she went but her medical knowledge is limited, they told her the new Med was some other sort of med that had sleep as a dude effect. After a few weeks I called doc again, she was annoyed but did admit it was basically same medication. I again asked for her to be taken off of it. Anyways we yo you'd back and forth over this for months. One day mom called in tears, really suffering from anxiety, They had just put her back on the Trazadone, she was telling me how she really didn't like how it made her feel. Back to her doc, who put her on an antidepressant to deal with the aniexty, which made her worse yet.
I understand theses all can be symptoms, but why can't we try no meds instead of adding more mind altering meds.
The good that came out of this is they sent her to a team that assess all her abilities and needs, then makes recommendations to her doc as to what to prescribe.
To me it us a no brainier, she tested the worst when on Trazadone, and better off of it, worse when back on it.
So I have been pondering the value of testing someone old.
My sister's care and testing has been under control of her husband, so I have no idea what tests have or have not been done.
I came to read theses posts in hopes of maybe getting a bit of an insight as to what she is feeling and going through.
My mom and sister were both given diagnoses about a month ago.
I am trying to learn all I can about this disease, effects, progression, how I can best help them at different stages.
I will probably not end up being the main caregiver of either of them, but I will be the one that determines what is best for my mom. I would willingly help care for both of them, but I have my own on going health issues that will prevent me from doing much hands on stuff.
I appreciate any words of wisdom anyone can offer.
JK- I want to thank you for always doing research and sharing information with me. That speaks volumes about you as a person. I really appreciate all your support.
Joe- thank you for suck sweet words. You can see my gat you're a nice guy. Best to you, Joe and thank you all.
Grandma Lynda, I tried to email you but for some reason your name doesn't appear as one of my connections on the email page.
So, I hope you're doing ok. You've always offered me words of encouragement and compassion and I hope you are smiling and laughing a little bit more each day. Cybil sends regards to Lizzie and hopes that she's laying low. Haha!The kindness you've given me has been priceless.
I'm glad you are feeling better, obrien.
oBrien, I also tried to connect with you. I currently have a request in to the help line to see why your name isn't showing up. Will let you know what I find out. I'm glad you're feeling better! I have been smiling more this weekend, thanks!
Glad to see you're smiling more, Lynda. We can find happy again, we'll get thru this!
Have a great day!
Dear Obrien and The Sun Still Rises,
Thank you so much for the insight on behavior changes. My DH has agreed to go in for a diagnosis in Aug, by his 65th birthday. His behavior has been changing steadily for a few years now. At first I thought it was due to too much stress on his job, but his company offered him a less stressful position, and his altered personality continued. This helps me to understand that, as much as he wishes this was not so, he is helpless to change it. He is still, usually the dear sweet man, that I married 40 years ago. So, when this happens, I now understand that it is really not him, and he means no harm.
Hi Billy Bob,
Welcome to our world.I'm so glad you found us.
Also so happy hubby is going in for an evaluation. What do you know about where he is going and what tests they expect to run.
From your library ask for a copy os Doraiswamy and Gwyther, The Alzheimer's Action Plan. It tells what a good exam must consist of.
Also work on getting as much of Best Practices into his daily routine as possible. if there are a lot of changes, go slowly:
There are other things you can do to help slow down the course of this disease, including:
(1) Sticking as closely as you can to a Mediterranean diet (with wine and nuts), which has been shown to help prevent/delay the onset of AD, and also slow its progression. See:
Basically, it involves:
- High intake of vegetables, legumes, fruits, and cereals
- High intake of unsaturated fatty acids (mostly in the form of olive oil)
- Low intake of saturated fatty acids
- Moderately high intake of fish
- Low-to-moderate intake of dairy products (mostly cheese or yogurt)
- Low intake of meat and poultry
- A regular but moderate amount of ethanol, primarily in the form of wine and generally during meal.
To that, I would add eating a quarter cup of nuts every day -- quite a few studies have found they're very good for you.
Also, olive oil is very good for salad dressings etc, but not so much so for cooking especially at higher temps. Use canola oil for that, or a mix of the two. (I've seen plenty of products that contain olive and canola oils.)
Avoid hydrogenated fats and trans fats like the plague.
(I also take Omega 3 and antioxidants.)
(2) Lots of physical exercise ... there is quite a bit of evidence it can help prevent/delay onset. (As strenuous as possible. Recent research shows such build new brain cells!)
(3) Lots of exercise for the brain -- activities that involve learning something new. I've seen some reports that learning new things coupled with using a computer can be particularly helpful. (A variety is best. Figure out what stretches your mind but is not so hard you are frustrated.)
(4) Socialization, doing things with friends and family. (Most of us do not do well in large and/or noisy groups.)
(5) Plenty of rest.
(6) NO SMOKING!!! and avoid air pollution as much as possible.
(7) Do whatever you can do to minimize stress.
(And take meds as directed.)
Thank you so much for the warm welcome, and the wealth of helpful information. We have Kaiser, so he will have to start with his primary care doctor, who is a wonderful doctor. My husband will also very much like the healthy diet approach. Who couldn't use more of that.
While I'm here, I would also like to thank all that have shared their first hand experience, so I can try to understand what my DH may be experiencing. I now know that I have to approach nearly everything differently with him. Without everyone on here, I would have felt lost and overwhelmed. I thank God that I have found all of you.
Hi Billy Bob and a welcome from me too.
There is much to learn from these forums...all of them. I do hope you will also post on the spouse board.
Thank you for the warm welcome. I shall post on the other boards. I came to this one, because the good folks here give me insight for what it must be like for my DH. Someday, I shall encourage him to join, because before I came here I felt so alone. I can't imagine how he feels as he begains this journey.