I'm going to appear to know nothing here, oh well.  What's the "real" difference?

DH's has had every text available and they call it Dementia because he doesn't fall into any other catagory.  All test showing pictures of his brain are "normal."  However there is a huge deficiet and he fails short term memory test and the neurological psy test was overwhelmingly bad.

We keep being told to have him stay on his medicines and that this is so early on in the process that within a year whatever it is will manifest itself so "we know exactly" what we are dealing with.  Doesn't make me feel great.

eagle

Eagle, join the club!  Frustration is the name of the game!

Many of us are in the same boat. We don't have a precise diagnosis. 

Dementia is not like cancer where you can look at cells on a slide and say what it is, nor like an infection where you can grow bacteria in a culture.  That is because there are so many causes for dementia and not all of the symptoms are apparent at the same time. 

Dementia is a progressive disorder, and the progression is a necessary part of the disease process. 

We on this board are trying our best to SLOW the progression.  That's why we discuss the various medications, using Best Practices and other treatments, and staying positive.   

We have to make the most of the Early Stages because we don't know if and when the later stages will show up.  We have to prepare for the later stages as best we can, using the experiences of those who have already reached that point to guide us.  

This is not something that people in the outside world can help us with so much because dealing with dementia is so different from dealing with other diseases--even other progressive diseases.  We have to learn from each other.  And then we have to teach the outside world, too.

P.S.  I'm in the same situation.  My diagnosis is cognitive impairment not otherwise specified.  Without this board I wouldn't what this means nor what to do about it.

Iris L. 

As I understand it dementia is a broad range of symptoms, progressively getting worse.  There are many causes to dementia. 

The doctor runs all the different tests to rule out the different causes, some of which are reversible, such as those caused by Vitamin B deficiency, B 12, I think.  When all identifiable causes have been eliminated the doctor will usually issue a diagnosis of "Dementia, Probable Alzheimer's type" or some similar statement.  There is no 100% definite diagnosis of Alzheimer's because the only sure way of diagnosing it is with a brain autopsy after death. 

The Early Onset Alzheimer's Disease diagnosis has to do with the patient's age.  If under age 65 it is considered Early Onset, if 65 and older it is Alzheimer's Disease.  It's the same disease, just different time frame, although there is thought that the Early Onset may tend to be more genetic, but nothing has been proven, to my knowledge. 

Alzheimer's is the diagnosed cause in over 60% of dementia cases. 

It is important to get the best diagnosis possible because the treatments/medications tend to be diagnosis specific; treatment or medications that help with one diagnosed cause can actually result in problems if used on a patient with a different diagnosis.  Also, if the cause is treatable, such as Vitamin B 12 deficiency or a thyroid problem, the doctor can prescribe the correct treatment to eliminate the dementia cause and symptoms. 

You can read about a lot of this information by going to the main Alzheimer's Association site at www.alz.org. 

Bob   

 D'lynn, a lot of patients have cognitive impairment or dementia that "could be caused by a lot of things" but they are diagnosed as dementia consistent with Alzheimer's type.   

The main thing to consider is what of the "lot of things" might be reversible or improved if treated in time?   

For example, if a patient has dementia but is also anemic, treating the anemia might improve the patient's cognition.  Treating the anemia will not change the underlying dementia if Alzheimer's is also part of the pathology.

Iris L. 

Maybe you will get a lot of your questions answered by going to this site:

http://www.nia.nih.gov/alzheimers/about-adear-center 

This is the Alzheimer's Disease Education and Research Center (ADEAR)

You need to have a neurologist who specializes in dementia and memory disorders. This site will help you find one.  It is also  filled with all things' Alzheimer's.

DH has had all of the tests, includding the neuropsychological test. The decisions by the neurologist who administered the test and our neurologist was "dementia, early on set" further diagonosis within a year.  Who knows.........eagle

I truly believe that we early stagers are at the forefront of history regarding Alzheimer's disease.  I believe we CAN prolong the early stages and DELAY progression by doing just what you have mentioned! 

But the outside world gives no encouragement.  They don't know what we know and they're only focused on later staged patients.

Iris L.

Oh, Iris, I do so heartily agree that we are on the forefront of AD research, especially for newly diagnosed people with AD.. Yes, I believe that sooner rather than later, there will be medicines that will stop the progression of AD, and I also believe that some of these medicines will be able to reverse some of the damage already caused. Every day is one stop closer to a breakthrough. Volunteers are needed for  many clinical trials.  When the trials are not be able to get enough people to participate, often the research project closes down and these are MISSED opportunities.

Having said this  Clinical trials are personal choices, and participation in one should not be be entered into lightly without thorough research and discussion with one's primary physician.

My DH and I embrace the hope that the clinical trials bring, and are trying to get him accepted into one that he is compatible with.  We also know not to get our hopes too high, but it is a good feeling to be active in the pursuit of even a better day....one step at a time....one foot in front of the other. It will make us better for trying it.

Hope is good for the soul, but pessimistic thinking keeps us close-minded, and robs us of new possibilities that my come our way. Take your blinders off and be prepared to look for solutions.

W encourage and challenge  you to  fight this diagnosis with every fibre of your being.

eaglemom - i'm actually adding to your post of may 13th - when i first went to my neurologist, i went through the gamut to rule out anything that might be reversible; after determining negative on that, went through brain cat and brain mri as well as neuropsych, eeg, cognitive eval, 3 lumbar punctures, (my 1 l.p. actually came back false-positive for Crutchfield-Jakob Disease),  it was finally determined that i did have dementia, not otherwise specified.  that was in  2007; however, my neurologist really felt that it was not alzheimer's and did want to know what specific dementia i had.  he felt that knowing that would help him to better treat me.  in the meantime i had already been on aricept and namenda.  after further testing including spect, it was definitive for frontotemporal dementia (ftd) and that was in 2009.  during my most recent discussion with my neurologist and based on self history, it was determined that this has been going on for at least 10 or so years, with me seeking help after about 3 years of being symptomatic. 

i'm saying all of this to let you and others know that, even though the diagnosis of dementia may be made, to be specific takes more testing and, unfortunately, more time.  of course, as my neurologist felt, being specific means specific treatment.  although i'm not sure what more can be done except for the aricept and namenda.  that, at least, keeps a person stable.  but, along with ftd comes the behavior and mood stuff, so there are meds for that.  each dementia comes with its own stuff and care.  but, i have begun to follow best practices, continue with my cognitive therapy as well as psychotherapy, which is SO helpful, and try to be as socially involved as my dementia allows.  i just spent a wonderful afternoon on sunday with friends and their daughter, son-in-law and new granddaughter and had a blast!  of course, when i got home about 4:30 p.m. i was exhausted and about 6:45 p.m. i was OUT on the couch until midnite and then when to bed and was OUT again!  but it was all good!  i'm now in the midst of cleaning out my storage room of stuff to put out for spring cleanup in our neighborhood on thursday  so, trying to do as much as i can.  i try to have as much normalcy as i can.

take care eaglemom, and know that you are not alone.   my prayers are with you!

Thanks so much everyone, especially nomemo for the kind words.  DH has had what I'd think is pretty extensive testing.  Multiple blood tests, mri with/wo contrast, xrays, cat scan, PET Scan, spinal tap, neuropsychological test (the 6 hour test) and several other tests.  He's been seen at UT Southwestern Dallas Alzhemiers Memory unit by the founder.  I do feel we'd done it all.

Having said that I know not everyone on the board is 54 years old.  We've been married 35 years......we're a high school love story that's lasted through the years.  He does much better when he gets out around people.  Our friends are fantastic and such a Godsend to us.  Lots of encouragment and positive attitudes which is what we need - not gloomy junk!

I've increased his fruit / vegetable intake - and to his surprise likes it!!!!  Since we are relatevly need on this journey we are still finding out our "normal"  Routine seems to help him also - if we deivate from routine he's fine, just restless.  Like everyone some days he's slower/foggyer thinking than others.  We are trying to keep busy, be positive and I'm trying to find out as much as possible. 

This forum is wonderful...........people who do understand and the "been there done that" so you all know.  From the bottom of my heart I truely care about each one of you.  eagle

nomemo,

If I haven't said welcome before, let me say it now.  "WELCOME"  You're among friends here.

I must say, "I really like your attitude!"  Stay with us and we'll stay with you.

Bob  

Hi to All, this is Kim posting as KawiVal, my husband.
KawiVal was newly diagnosed with Frontotemporal Dementia. We are looking for information, support and friends. I can see by the many posts that there are more 'folks' like us seeking an answer.
I am so glad to have found a forum to help me with questions and perhaps some answers.
We have done the testing (except for a PET scan). KawiVal, did not mesh well with the last doctor and we are going to a new neurologist on July 2nd.
We hope to find information and a local support group.  

KawiVal will do well with a face to face group in addition to the online support we are finding here.
I am so HAPPY to find you!
Thanks!!!

Hi All!

My wife at age 51 was diagnosed with dementia.  Then after seeing a Psychiatrist, we were told she had Picks Disease.  Went back to the neurologist and after retesting with the Psychologist, we were told no she didn't have Pick's Disease and that it was dementia / Alzheimer's Type.  We now have seen (3) neurologist and the third one after looking at all her tests, came to the same conclusion; dementia / early Alzheimer's.  It is very frustrating.  We've been married 15 years and to watch someone struggle with daily activities is hard.

We've even gone to University of South Florida Health Byrd Alzheimer's Institute, but because of her young age, she isn't eligible for a lot of the testing because our beloved FDA puts age limits on the test. You would like to think they would be interested in finding out why this is happening at a younger age.

My question if anyone can answer is that I still have to work and I don't like leaving her home alone, but I have too.  I can't afford to say home with her, yet I can't afford any type of adult day car.  Our son is in the Air Force and stationed overseas.  My wife's sisters live out of state.  I'm really in a pickle to know what to do.  Had I known what I know now, I would have gotten Long Term Care on her cause we started to see a change in her about 6 years ago, but she kept blaming it on the change of life and couldn't convince her to go to the doctor, till about 3 years ago when her oldest sister told her to cut the crap and this was more than just the change of life.

Any information anyone could help me with would be great!

Welcome, Kim, KawiVal, and James3656,  I'm glad you all found our online support group but I'm sorry for the reason that you came.  We're here to support each other in dealing with dementia, whatever form it may take. 

Please feel free to start your own threads and post any questions or concerns you have.  We'll do our best to answer you. 

If you have urgent concerns, please call the 24 hour Helpline number at 1-800-272-3900 and ask to speak with a Care Consultant.  They are knowledgeable in all areas of dementia and caregiving and can help you locate resources in your area.

I'm 62 and I've been a member for three years.  My diagnosis is cognitive impairment not otherwise specified, probably associated with systemic lupus, and major depression.  Often the symptoms of dementia and depression overlap.  I've been on Exelon patch and Namenda for three years, and just recently began an antidepressant.  I'm also attending a Brain Fitness program called PositScience recommended by my neurologist.
 

Please keep reading and come back often.  You are not alone. 

Iris L.
 

Hi Kim, KawiVal and James3656,

Welcome to the Younger Onset AD/Other Dementia's Message Boards.  I am sorry for what brings you all here but I am glad you've found us.

I wanted to introduce myself.  My name is Lisa.  I was diagnosed at age 53 with EOAD/Younger Onset Alzheimers disease.  I am now 58 and doing OK.

The beginning of this disease is very difficult.  Many emotions flourish.  Fear, anxiety, depression, anger and severe sadness.  It's so hard.

Please, find doctors that specialize in treating patients with AD/Dementia.

I am now on an Exelon patch (had bad GI side effects with Aricept), Namenda 2xday,  an antidepressant, Cerefolin and supplements.

You have been given some good advice.  Please act on it.

Again, Welcome to OUR family.  You are NOT alone.  We are here,

Peace and Hope,

Lisa

KawiVal - welcome to the boards, although i, too, am sorry about your diagnosis.  i was formally diagnosed in 2009 with frontotemporal dementia (ftd) at age 54 after an initial diagnosis in 2007 with dementia not otherwise specified.  i have been very fortunate, especially living in a small town, that my doctors have taken me seriously and i have a neurologist who has a lot of experience with dementias as well as a psychiatrist, who, also, has a lot of experience with dementias.  during my initial testing i had a lot of bloodwork to rule out anything reversible, such as vitamin/mineral deficiencies, etc.  i then had cat, lumbar punctures (false-positive for crutchfield-jakob disease), mri's and then was referred to another neurologist in a larger city for second opinion.  that neurologist ordered spect scan and definitive diagnosis of ftd was made.  i worked for another year as administrative assistant at speech and hearing clinic that i had been at for 34 1/2 years then i retired, my own decision before i was fired.  immediately filed for ssdi, which was approved within 3 months and starting receiving checks 5 months later.  i formed my own support group among caring friends and speech/cognitive therapist.  we meet quarterly as a group and individually on a social basis in between times.  i still try to attend church, which is very important to me, but it's difficult at times.  the large group as well as music and singing sometimes gets me unhinged!  i sit in the back in case i have to leave and go to the foyer to sit or outside to sit on a bench to regroup.  i have trouble processing conversations of more than 2 in a group.  i get easily agitated and at times my emotions are on the surface.  i have what's called "pseudobulbar affect" which causes me to  laugh or cry at inappropriate times.  in spite of this, i try to stay as socially involved as i can, which includes this board.  the responses that i receive on here have been so important to me and my well being.  i also have therapy sessions two times a month with a therapist who has experience with brain disorders and brain injury.  she helps me by giving me coping strategies and just listening to my concerns.   i'm on namenda, aricept, depakote er, paxil as well as my vitamins and supplements.  i have a headache 24/7 above my eyebrows and when things get really tough, it seems as though something's trying to bore out of my forehead.  that's from too much auditory or visual stimulation, concentration or just plain agitation. 

please come to the boards often.  we're all here for you and we care.

peace and blessings to you....

Thanks for the information.  I've never done a group discussion like this before on line.  I thought I was on the care givers group. 

While I'm here, has anyone found any natural remedies that have helped.  Like coconut oil?

James3656 welcome to the boards.  We (my sisters and I) have treated my mother with aromatherapy for the past five years; she has had Alzheimer's disease for the past eight years.  We have her smell four or five essential oils for a few seconds each morning (the oils that we have used are rosemary, bay laurel, cinnamon leaf, sage, oregano, thyme, clove, peppermint, orange, and Ylang Ylang).  Lemon, coriander, basil, frankincense, and fennel are some other good choices.  My mother now sleeps through the night, no longer sees her brother as an imposter, has few "delusions" any more, has some short-term memory (remembering the alphabet, counting numbers, completing simple phrases, knowing her name and sometimes spelling it), and is much more alert and aware than before.  Aromatherapy may help with various other forms of dementia as well, although there is some speculation that it does not help with dementia with lewy bodies.  Some essential oils can increase agitation particularly in combination with anti-anxiety medications. 

There may be many natural compounds that help Alzheimer's disease. 

I will try to copy a post I made on the Huffington post so that you can see the links on some of the natural products. 

thinkofanamefast

 

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09:11 PM on 06/17/2012

The real studies, done to scientic standards and peer-reviewed, show none of that works. So why should I believe some internet poster? Please dont tell me the whole scientific establishment - you know, all the straight A students who studied while we partied- are part of a massive conspiracy of evil to suppress your discoveries.

 

 

 

 

Lane Simonian

 

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09:51 AM on 06/18/2012

Not true. Let me provide all the links and then you telll me why the studies are wrong.

http://onlinelibrary.wiley.com/doi/10.1111/j.1479-8301.2009.00299.x/full
http://www.ncbi.nlm.nih.gov/pubmed/12605619
http://www.ncbi.nlm.nih.gov/pubmed/12810768
http://onlinelibrary.wiley.com/doi/10.1111/j.1755-5949.2011.00237.x/abstract
http://www.ncbi.nlm.nih.gov/pubmed/21905282
http://www.ncbi.nlm.nih.gov/pubmed/22468783
http://www.ingentaconnect.com/content/ben/cbc/2006/00000002/00000001/art00005
http://www.ncbi.nlm.nih.gov/pubmed/22470103
http://www.sciencedirect.com/science/article/pii/S0166432807001313
http://www.iomcworld.com/ijcrimph/ijcrimph-v03-n04-01.htm
http://www.plosone.org/article/infooi/10.1371/journal.pone.0016564 (cinnamon extract)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2806059/

One common aspects of these studies, other than the natural compounds studied were each effective, is that they were all done by scientists outside of the United States. Are non-U.S. scientists just more stupid than our scientists or are they more interested in non-patentable treatments for this disease. Moreover, when I presented evidence to the Alzheimer's Association for the use of aromatherapy to treat Alzheimer's disease, they would not put it on there alternative treatment page without results from phase three clinical trials, something they require for no other treatment. I won't use the word conspiracy, but some scientists and Alzheimer's organizations in this country are ignoring the evidence.

 

Coconut oil may help, but a medical food called Axona (containing a slightly different combination of ketones that coconut oil) may be more effective as long as a person does not have the APOE4 gene. 

James, I'm on the Exelon patch and Namenda. I also take Axona, which is a medical food, but instead of taking it daily, I'm now  taking it every other day because it has a lot of calories. I started aromatherapy and see/feel real improvement. There is a lot of info in the Clinical Trials board on aromatherapy. Lane is our in-house expert. I also take a LOT of supplements and herbs, and follow best practices, which includes eating a Mediterranean diet, exercising at least 3-4 times a week, and socializing. There are lots of posts on best practices. Do a search of the boards and you'll find the info.

These practices have kept me between stages 2 and 3 since November 2009.

Lisa,

I've read so many different things. Are there medications that actually slow the progression or do they just help one cope with the symptoms? My wife is 53 and was diagnosed last year with early onset. She still functions ok at home, but she isn't taking anything.

Randy