Sylie,

You are not alone. I certainly understand you being scared, but until you have all the facts, you can't be certain things are as bad as they may seem to you. In defense of your husband, he might be scared too and is handling it by sticking his head in the sand. What symptoms were you having that caused you to do to the doctor in the first place? Most important thing I want you to hear is ...YOU ARE NOT ALONE!!!!

Randy

Sylie,

I sent you a private message. And you don't owe me or anyone an apology!!! You have every right to feel how you feel!!

Randy

sylie - i join with the others...you are NOT a whiner!  any diagnosis of dementia is a blow!  we all know...those who have been diagnosed and those who are caretakers.  i was initially diagnosed in 2007 and then formally diagnosed in 2009 with frontotemporal dementia.  to this day, i find it hard.  but please don't be so hard on yourself...allow yourself some grace to deal with this.  you've found this forum and we're all here for you and for each other.  laugh, cry, vent....do whatever you want here.  we don't judge.  and it's also a terrific place to find resources.

re: the bloodwork.  i hope that your new dr. orders some.  any dr. who is worth anything will order tests to try and rule out anything reversible that may be aiding in memory loss: vitamin/mineral deficiency, etc..  i had all of the bloodwork, eeg's, cat scans, mri's, lumbar puncture, spect scan, cognitive testing by speech therapist, and neuropsychological testing.  and make sure the dr. finds a med that works for you.  not all meds work for everyone.  i take a combination of aricept and namenda, but have recently found out through publications and on this forum, (thanks iris!) that aricept is contraindicated for people with my type of dementia. i will address this with my neurologist with i see him at my next appt.

please, don't be afraid to say, "THIS REALLY STINKS!  IT MAKES ME SO MAD!!!"  you have every right to say that, because it does stink!  and it should make you mad!  and dont' be afraid to cry.  oh, my, what a catharsis that can be.  sometimes crying is a part of the dementia, too.  i have "pseudobulbar affect" which basically means that there are times that i laugh and cry uncontrollably and at inappropriate times....but that doesn't mean that this is a part of all dementias.  

i agree with randy...this may be the only way right now that your  husband can deal with this.  is there a support group in your area?  do you think he would be interested in the caretaker forum on the boards?  and your kids.....i agree with nie, also.  it's tough enough for adults to process, let alone the kids.  please, give them time.  educate yourself and your family.  i always say that knowledge is power, especially when a person feels so powerless!  i don't seem to socialize as much with my circle of friends and one reason may be that we're just so close in age they may feel, "if it can happen to her, will it happen to me?" (i just turned 57 by the way, so my first diagnosis happened when i was 54, although i was being tested for about a year before).

well, i'll close this "book" now.  please come back...we care about you and, like i said, you can say anything you want!!!  BLESSINGS!!

Sylie wrote:

Thank you Nie  a much needed giggle,  I may have your 4's...seems I have too many and not enough 7's  my clock does not seem to have any 7's today,  if you have them,  lets trade!

Oh don't get me started about those darn clocks that trick us with the hands that "might be pointing at this or might be pointing at that"!  Ban them all.  I vote digital clocks for all.   (Unless its 4 or 7)    

Nomemo,  Thank you for replying, I read your post, probably 3 times and some parts 4 or 5 times, I forget what I've already read and reread again and again lol, I will do my best to respond to all parts of your post.

I know that my husband is having some troubles with this and I feel for his frustration, I understand that it affects everyone around me,  on my totally blank days he says he is very caring towards me, he sits with me until I stop crying (apparently I am afraid of everything on those days) my issue is why can't he be that way when I'm having a semi lucid day?  Does he think I don't need him just because I know where my house is today?  I sat down with him last night and we ...well just say communicated about this and he said that he is not a demonstrative person and if I'm not crying then he has no reason to be nice to me. o.O  I attempted to explain to him that just because I'm not having a blank day does not mean I'm not having troubles but he only sees black and white I guess...anyway, I can't make him support me or see that I need him all the time so that is what drove me here and thank the goodness that I found you people!  

    My husband is not a social person and would rather "suffer in silence" than tell anyone he has a problem, chances of him getting on the caregivers forum are slim to none but I will most definitely suggest it to him  

Ok, this is the end of MY book  thank you again for talking to me!

Not winning - scared.  There is a very definate difference.  This is the "safe" place.  I hate when we have new people - hang here and remember to breath.  eagle

Hi Sylie,

Welcome to our message board. you've already been welcomed by so many wonderful people.

Please call your library and have them order 

The Alzheimer's Action Plan  byDoraiswamy & Gwuyther of Duke Univ. 

It will explain the gold standard of testing and the reason for so many of them. it also discusses some dementias that are not Alzheimer's. And some other conditions that mimic dementia. 

Finally there is a section on the next steps.

Everyone has a right to complete testing. And your doctor should discuss side effects and what to do. 

I also had GI upsets from Aricept and another med I was taking. A lactose free diet took care of it. Sometimes there are sleep disturbances which can be taken care of by taking Aricept in the morning. What you described, means stop the med and get another.

I understand you are interested in herbal remedies. There are none that do what drugs such as Namenda and Aricept do. But they can most likely be combined with herbs. You might want to check with a pharmacist who is also knowledgeable about herbal remedies.

Thank you Mimi

yes I feel very welcome here and really do appreciate everyone's contribution and comments, I finally feel I have support!

i agree about the clocks!  i have all digital in my house now.  i even went a step further!  well, my cognitive therapist did....she went to our local association for the blind and handicapped and got me a "talking" clock!  it's in my liviing room...it's digital and it's set to automatically "tell" me what time it is on the hour.  plus, it has a giant green button on it that i can press and get the time any time of day, not just on the hour.  that being said, there are times when i think..."ok, it's 11:00 a.m."  now, what exactly does that mean?  i'm very diligent about crossing off each day on my calendar (in my bathroom!) and my daily planner, which is an important to my as my Bible.  but, then again, when i look at the next day, sometimes i think...ok, tuesday, what does that mean?  wierd.  i, too, could be a shareholder in post-it notes!  and....florescent card stock!  i have giant card stock signs  up everywhere in the house....on the lamp beside my med box reminding me what time to take the meds...big "STOP" sign on the front door reminding me not to leave (hope it works!)...at each lightswitch reminding me to turn off....on the stove reminding me not to touch it..HOT!!...also reminding me to turn off....at every faucet reminding me to turn off...and also on the mirror in the bathroom with numbered steps of directions on how to take a shower.  also in the basement with instructions on how to use the washer and dryer. 

i also wanted to tell you that i'm in personal therapy 2 times a month.  initially i started under recommendation of my neurologist to help me with acceptance of this dementia and now it's coping mechanisms and dealing with people who just can't get it.  a lot of  people cringe when it comes to the suggestion of therapy...i can only say that it helps me and really gives me another safe place to talk about my feelings.

i can commiserate with you re: support or lack thereof.  i have a large family of sibings (10 others!) but i may as well have told them that i have a cold.  my brother and sister in law live right across the street and my niece and her husband and 3 kids live next door.  no one checks on me, either in person or by phone.  as i stated before, my circle of friends has shrunk.  it's just me.  but my faith is strong and this forum is great! 

Blessings, friend...take long, deep breaths....long walks, if you can. 

Nomemo,

Funny you should mention walks, I was just telling someone else that I love to walk every morning with my mother!  

One of the methods I have been using to help me remember things is color, I use those color swatch card thingers from Wal Mart paint dept (thank you Wal Mart!!) and assign a color for day to day activities, for example,  I love to walk with my mom every morning so I put the purple card on my alarm clock before I go to bed and set the alarm for 8am, when the alarm goes off, the card is there reminding me to go meet my mom for our walk.  The neurologist is my least favorite thing to do so I pick mint green,  green is my least favorite color but of all the shades of green, the most tolerable color for me is mint so I have the mint green card stuck to my calender on the day I have the appointment and the time written on the card. 

I don't know if this method would work for anyone else but it sure helps me and if there is a chance that someone else can use it, please feel free.

I love that clock idea!  Talking clocks, I never thought about that,  that would help me with alot of things.

A lot of good tips in your post,  thank you so much.

Sylie, I'm so happy you found our online family!! I hope you know now, from all of the responses, that we don't want  you feel like you are alone any longer!   

I only wish you didn't have to be on this road with us.  But while you are here we can share ways to help you over some of those "bumps."  Nie, nomomo, Mimi, Randy and Eagle have given you a warm welcome and good pointers so far. 

Namenda and aricept are on my regiment.  What a difference these meds have made in my life.  Two years ago I felt like a mess! stuttering for words, getting confused, going blank... wow, yep I was a mess! LOL! 

  After 2-3 weeks on Aricept, my stuttering became less embarrasing.  It was easier to form my thoughts and I felt more in control than I had before. After several months, my dr. stopped the Aricept because of the severe gasto problems it caused. It was certainly a great way to drop some weight!   I switched to Exelon patch and by stomach problems are much better.

 I also tried a prescription medical food that you mix with water____________ (hope I remember the name!--if not someone will fill it in!) LOL!  However,since it's not compatible with IBS, I had to  stop it also. Otherwise, I would still be taking it because of the brain benefits it provides.  Remembered  YAY!  it is called "Axona".  It's something to certainly talk to your Neurologist about.  Aricept caused enough gastro problems!  I would still be taking it if I didn't have IBS! 

Namenda was added later after I learned about it on this site.  This place has been a life saver for me.  I also take Cerefolin Nac (medical food-pill form), and Vitamin D3, with my lactose free and Mediterranean diet.  

That's enough about me.

Please try to be patient while the neurologist explores all other possible reasons for your confusion, etc. symptoms.  The best care is with a neuro that specializes in dementia or memory disorders.  You can also look for  Memory Disorder Clinic in your area.  One that is associated with a University is a great place for information.  Geriatric Psychiatrists are well qualified for a diagnostic assessment.

Check out Mimi's usual recommendation regarding Best Practices.  These include strenuous physical excercise, mediterranean diet, increased socialization, brain game/exercise, taking prescribed meds...I may have left something out.

Iris

 or someone may find the link for Mimi's video quicker than I can at this time.

We all welcome you and want you to know that we care.  Keep us informed.

Welcome to our online support group, Sylie.  Geegee mentioned Mimi's video--here is a link to her video.  Mimi is doing better now five years after diagnosis, thanks to her medications and Best Practices. 

http://www.youtube.com/watch?v=Q2w9LG3hMlU 

The other members are correct, a thorough evaluation does take time. Keep reading and posting.  The more you know the better you will be able to understand what is happening with you.

Iris L.

Welcome Sylie from another newbie whose husband was just diagnosed with dimentia of a rare form. 

I can't even pretend to know anything at this point, but I can share that we found a neurologist to be a valuable point to start.  The testing, blood work and scans all helped define the issues.  And we got a referral to a Dr. Mikel in Kenosha WI who specializes in this area of younger onset dimentia and behavior concerns.  She was wonderful!! 

It was a drive for us to see her, but she was kind, compassionate, thorough. 

My husband has been put on Citalopram...a very low dose and in 3-4 days there was a marked improvement in his mental state,his energy, and outlook. 

Where you are is the dark space of uncertainty.  The light will come soon and answers found...and a journey begins. 

No not the path we envisioned, but the path we find ourselves on. 

The resources everyone here is suggesting are sooo worth exploring. 

Hopefully as you see the Drs. your husband will go with you, he can be a very valuable resource for those Drs. and he will become educated about life as you are experiencing it. I will share until the point we sat in a Dr.s office I had very little real knowledge of my husbands issues and shortfalls that were present. 

My guilt at not seeing the 'true' picture was imense at first, but has eased as I become clearer about the circumstances and our journey ahead.  Your hubby

may be in the same grey area....

I look forward to more interaction with you....Sylie

time4us2,   I want to also welcome you to our caring group!  I'm sorry for your DH's diagnosis.  If you have not yet found the Caregiver's or Spouses forums, they can be a great resource and support for you.

You can have more interaction with other caregivers and spouses in that section of the Discussion Board.  You are also welcomed to our forum for  those of us with a form of dementia.

.  If at anytime you need some voice to talk to, or need advice, you can call the 24/7 Helpline at 1-800-272-3900.  Ask for a Care Consultant.

Time4us2, GeeGee and Iris,

I hope you don't mind if I lump my reply to each of you in this one message since what I have to say encompasses all that was said.

I believe I am in some "stage" of figuring out how to accept this, similar to the stages of grief when someone dies,  I am finding that things are not cut and dried, so many things that work for others most likely will not work for me because of other health issues,  I cannot be on a lactose free diet for example,  I cannot do strenuous exercise, I do not believe in synthetic drug therapies, it's in my core, my soul, to keep my body free of things that do not belong there,  I feel physical panic when I think about taking those medications, maybe it's my beliefs, maybe it's part of my "stages" I just do not see the need to put that kind of stress on my body when there are perfectly viable alternatives.  It has been mentioned to me that herbs don't do what the drugs do but I have to disagree,  I've seen it work in other people and I see a difference in myself after only 3 weeks.  My husband sees the difference as well.

I believe each person has the right to take care of their own body their own way and no one person's way is better than another,  I do not appreciate being told that my way is wrong, or not as good as someone else's way and I would NEVER say that to anyone else, so in light of that,  those of you that are taking the medications, WOOOOOT!  I'm honestly very excited that it's working and you are succeeding with your treatment,  it's just not my way.  

I consider myself to be fairly smart,  my father raised me to be a seeker of knowledge, I have to know everything I can possibly know about any given topic and therefore,  trust me when I say,  I have done my research on EOAD, AD and several other forms of dementia as well as their conventional treatments and alternative treatments as well.  

My reason for being here is for support and to learn more about the disease if that's possible haha!  (I literally have logged 109 hours of dementia research in the last month,  I log every thing I do from playing games on facebook to my brain training games, to my research to reading emails to chatting with my friends, I'm just kinda...obnoxious that way lol.)

I have read the large majority of topics on the forums just since joining yesterday and have found a few new things that I hadn't read anywhere else and am grateful for the new information.  I thank the authors of those posts and all of the links and their respective authors.

I plan on sticking around here and seeing what more information I can get and meeting more people in my situation and making more friends, I already have so many new friends which is good because you can never have too many friends.

okay, this is the end of my message for now  I wish everyone a wonderful day and keep plugging away with whatever treatment works for you

Hi Sylie,

I do hope you at least check back to see if there any response to your farewell.

I think you were upset by the following paragraph which I wrote:  Well, I can't type below the quote, so the quote is at the end.

I sincerely apologize if what I wrote offended you. As you wrote, such would never be my intention.

I do hope you continue to post. Everyone's voice and opinion are important!!!!!

I understand you are interested in herbal remedies. There are none that do what drugs such as Namenda and Aricept do. But they can most likely be combined with herbs. You might want to check with a pharmacist who is also knowledgeable about herbal remedies.

Aricept can cause dizziness.  I don't say the drugs currently used to treat Alzheimer's disease are worthless.  They just are not likely as effective as other treatments currently available and certainly they can be used in conjunction with these treatments if a person does not experience side effects with them.  In other words modern medicine should be the complementary medicine to alternative medicine when it comes to Alzheimer's disease not the other way around.   

Essential oils act as anti-cholinesterases and as anti-oxidants.  They are probably better anti-cholinesterases than the current medications used to treat Alzheimer's disease because they are better inhibitors of the enzyme (phospholipase C gamma) which leads to the release of acetylcholinesterases.  They are also better peroxynitrite scavengers than Namenda/memantine and thus are better at blocking the release of glutamate and calcium which kills brain cells (via NMDA receptors).  Eugenol, for example, found in essential oils such as bay laurel, clove, holy basil, and cinnamon leaf appears to be highly effective in this regard. 

Eugenol inhibits Aβ-induced excessive influx of calcium ion into neurons that causes neuronal death.

http://www.ingentaconnect.com/content/ben/cbc/2006/00000002/00000001/art00005 

Several essential oils can also inhibit the nitration of tyrosine and perhaps reverse this nitration.  In  doing so, they inhibit the aggregation of amyloid plaques and contribute to better neurotransmissions by allowing for the reformation of tau proteins (untangling the tangles).  

Here is one piece of evidence that certain herbs are better at treating Alzheimer's disease than Namenda (not an essential oil in this case). 

Moreover, all of the neurochemical changes of the synaptosomes were also ameliorated. In conclusion, the behavioral and neurotoxic effects of intracerebroventricular injection of NMDA were ameliorated by treatment with honokiol [from magnolia bark] alone or combined treatment with either tea polyphenol plus memantine or honokiol plus memantine, but only partly by either tea polyphenol or memantine alone. The therapeutic potential of these neuroprotective regimens in treating excitotoxicity-related diseases merits for further investigation.

http://www.google.com/#sclient=psy-ab&hl=en&rlz=1W1GWYE_enUS310&q=characterization+of+neurotoxic+effects+of+NMDA+by+phytophenols&rlz=1W1GWYE_enUS310&oq=characterization+of+neurotoxic+effects+of+NMDA+by+phytophenols&gs_l=hp.12...100597.104245.3.106443.16.15.0.1.1.1.897.3760.0j2j11j6-1.14.0...0.0.WzZkXNldEnk&pbx=1&bavn.2,or.r_gc.r_pw.,cf.osb&fp=6e1244c3e9db30dc&biw=1440&bih=706 

Ok now here are some of the problems.  Most polyphenols (such as those in the Mediterranean diet) are either altered when they are metabolized by the body and/or don't enter the brain in large enough concentrations. This is why scientists are trying to develop nasal sprays for polyphenols (but aromatherapy already exists for single phenols).  Some phenols (and this includes essential oils containing phenols) can become pro-oxidants at high concentrations.  Certain herbs and essential oils can increase blood pressure.  Many essential oils will increase anxiety when taken in conjunction with anti-anxiety medications or thyroid medications.  Some essential oils will increase anxiety in people with high levels of adrenaline. 

Keep doing your research, Sylie.  The answer is out there.  So far it has been largely "contained"  to everywhere but the United States, but it is out there.  The idea that synthetic medicines always provide the best treatments for diseases is something that pharmaceutical companies and their backers feast off of. 

Sylie was interested in herbal treatments for dementia and Mimi felt that while these treatments could be used in addition to currently prescribed medications, none of them could do what the prescribed medications do.  I am of the opposite opinion--that there are certain herbal treatments for Alzheimer's disease that can be used in conjunction with prescribed medications, but that they are actually more effective than the prescribed medications.  The evidence for this is not ovewhelming, but it is strong.  I base it in part that after five years of aromatherapy my mother is still in stage 6 of Alzheimer's disease and a better stage six than she was five years ago and she is taking no other medicines for the disease. 

I usually keep these discussions confined to the clinical trial section, but when I think it might help someone, particularly someone who might be interested in alternative treatments, I also post the information on other forums.  I know it's complicated, but I have never found away around that.   

The only thing I really care about it, is that it has worked for others and it has worked for my family.   

Hi Sylie

As Lane said above, you don't need to apologize.  

If you need some space right now, maybe just read here. If you change your mind in 10 minutes and want to post, do it!  It's very easy to take things personal when in your life you have little support from loved ones or friends and you almost feel like you have to "defend" yourself.  That's how its been for me.  I think it is just a very unfortunate situation many of us deal with.  

As you have seen a bit, Im quite the smart azz on my posts sometimes.  Its how I cope. I always hope I dont offend anyone, they may not agree with how I cope. But, I think we all "get it" here.  Each person is on this personal journey in our own way, but we have "tied" our life rafts together to weather the storm the best we can.  No judgments.   Vent, laugh, cry, put your ideas out there.  Its all fine.  

And just so you know you are not the only one struggling: 

Last night my uninvited stepson (That's another whole story that would give anyone without brain issues a case of the crazies) showed up drunk and who knows what else. I was so out of it, sleepy, upset that he was there.  I picked up my 4 lb yapping chihuahua and went to get a soda from the fridge.  The whole time the stepson is following me saying..there you go again drinking out of cans and you wonder why you act so stupid blah blah blah.  HE had me so rattled.  I couldn't even speak.  I set my dog in the frig grabbed the soda and shut the door....   yes, I chilled my chihuahua.  Stepson was  laughing AT me, and saying terrible things.  Of course I got the dog out of the frig.  By then my boyfriend had enough and tossed his son out of our house.  I'm on the floor sobbing about the poor dog and how stupid I am.  As per usual my boyfriend has something to say.."well, it is really warm in here, I'm sure he appreciated it...but I don't think the Labrador will fit ".  And we ended up laughing like crazy.     

No Judgments!    And that's what you will find here on these boards.     It can really help flip a situation into something much more tolerable.

Big Hugs

Sylie....

If nothing else, you have to stick around to see what Nie has to say..LOL!! LISTEN to people like her....ignore people that upest you. NO one has all the answers...everyones journey is a little different.

I wish a few of us could all get together and have a margarita or two!! First on my guest list are Sylie, Nie, Nie's boyfriend, Penney, Lesa, Conundrum......

Can you imagine the conversation???!!!!

I'm in!  I could use a margarita right now! 

Welcome, Sylie!  You sound like you're in about the place my wife was in a few years ago.  I wish you the very best, and hope your road is easier.

-Mike