RSS Feed Print
someone please talk to me
Sylie
Posted: Monday, July 2, 2012 2:46 PM
Joined: 7/2/2012
Posts: 153


I'm so sorry to sound like a whiner, I am having such a terrible time with my diagnosis, my PCP diagnosed me, I am working with another doctor who seems to be alot more thorough, so maybe it will turn out I don't actually have EOAD. I don't know, I am confused and scared and I just have so much frustration, my PCP gave me Aricept and the first dose turned me into a zombie, I couldn't walk, I couldn't think, I couldn't function so he told me to stop taking it but didn't give me any other medicine to replace it, just told me to get 2 other blood tests, (B and folate) which I did not do for him,  I went to a different doctor for a second opinion and although she is more thorough, she was strictly focused on the side effects of the medicine, it was as if she thought the side effects were normal for me,  they definitely were not, I only experienced those symptoms when I took the Aricept. So I'm not very confident in her either, I have an appt. with a neurologist but it's not for another month, in the meantime, I'm essentially alone, my husband and teenage children live with me but my kids don't know how to handle this and my husband thinks he is being caring but I need more than "Now you can get disability checks Hon!"  I just need someone who understands what I'm going through and to realize that I am devastated. I am 43, my kids are still teens, I had plans! I want to see my kids get married, I want to meet my grandchildren...somebody please help me.
Randy55
Posted: Monday, July 2, 2012 2:57 PM
Joined: 6/21/2012
Posts: 40


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
Posted: Monday, July 2, 2012 3:05 PM
Joined: 7/2/2012
Posts: 153


Thank you Randy,  for about 4 yrs now I have had some memory lapses that at first were just..."oops, I forgot"  kind of things, cell phone in the fridge,  my eyeglasses are lost but in reality are on top of my head. Those kinds of things, in the past couple of years, maybe a year and half or so it has gotten increasingly worse to the point now that I lose entire days, my husband has to leave work and come home because he says I am crying and don't recognize my surroundings, that I am afraid of our dog (that we've had for 10 yrs).  I get lost going to places I've been going to for years. I forget names, people I've been friends with for 20 yrs are suddenly strangers to me now.  Not everyday is as bad as that, I do have "lucid" days and semi lucid days when I am just overly forgetful rather than amnesiac. My PCP did an EEG and said that it indicated EOAD...geeze alot of initials in that sentence,  my apologies. Now...I have forgotten the other questions you asked so I'm going to post this and go look at your reply again lol
Randy55
Posted: Monday, July 2, 2012 3:34 PM
Joined: 6/21/2012
Posts: 40


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


Nie
Posted: Monday, July 2, 2012 4:58 PM
Joined: 5/30/2012
Posts: 66


Hi Sylie, I think we have some things in common. I'm 48.   You have come to the right place.  As many have told me, you are not a whiner! I think the same thing when I post.  This is tough. Not knowing is tough, waiting is tough, but remember..you are tougher than you know.   

 
Sylie wrote:
I'm so sorry to sound like a whiner, I am having such a terrible time with my diagnosis, my PCP diagnosed me, I am working with another doctor who seems to be alot more thorough, so maybe it will turn out I don't actually have EOAD. I don't know, I am confused and scared and I just have so much frustration, my PCP gave me Aricept 
I can relate to this.  Although Aricept just kept me in the restroom contemplating the meaning of life hours on end..that was all it did as far as side effects.  But, I've been on many "lets try this" drugs that led to the zombie walk, the jitter/shake til you drop, the "headaches from hell" effects.  Remember, there is a reason why it's called "Practicing Medicine".....  Seriously though, I'm not making light of your feelings or experiences..I do understand.  
and the first dose turned me into a zombie, I couldn't walk, I couldn't think, I couldn't function so he told me to stop taking it but didn't give me any other medicine to replace it, just told me to get 2 other blood tests, (B and folate) which I did not do for him,  I went to a different doctor for a second opinion and although she is more thorough, she was strictly focused on the side effects of the medicine, it was as if she thought the side effects were normal for me,  they definitely were not, I only experienced those symptoms when I took the Aricept. So I'm not very confident in her either, I have an appt. with a neurologist
Good, finding the right doctor (neurologist) seems to be key.  And finding the right one can be frustration on top of frustration.  But worth the wait, even though the wait feels like eternity.   I am on doctor #2 now.  Last appt I took in a 6 page list of what had been happening.  (I had written stuff down I was told happened or that I recalled)  This Dr wasn't going to get the chance to brush me off. 
 but it's not for another month, in the meantime, I'm essentially alone, my husband and teenage children live with me but my kids don't know how to handle this and my husband thinks he is being caring but I need more than "Now you can get disability checks Hon!"  I just need someone who understands what I'm going through and to realize that I am devastated. I am 43, my kids are still teens, I had plans! I want to see my kids get married, I want to meet my grandchildren...somebody please help me.
I have found that is just seems to be so hard for people to understand what they have not experienced or what they may fear.  Or for that matter, to even really try and believe that your age does not mean this isn't happening.   
You should still have plans! Don't quit.  Anything is possible. Example:  The other day I simply could not count change out correctly.  Somewhere in my mind the number 4 ceased to exist.  When my boyfriend realized what was going on and explained to me..I was very, very upset.  But he said.."We don't need no stinkin 4's!" Who cares about them."       Humor does help at times for sure! Today I have my 4's back.  They might leave again.  I might realize it, I might not.  

 
I guess what I'm trying to say is, don't count yourself out.  You will get diagnosed with whatever it is, get the right meds, and find out family takes time to process things. Maybe some friends won't.  Maybe they are "4's" and you don't need them.  Allow yourself to feel what you feel, its your right, and know that you have friends here who understand and will listen.  Big Hugs 

 



Sylie
Posted: Monday, July 2, 2012 5:22 PM
Joined: 7/2/2012
Posts: 153


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!
nomemo
Posted: Monday, July 2, 2012 5:32 PM
Joined: 3/21/2012
Posts: 439


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!!


Nie
Posted: Monday, July 2, 2012 6:16 PM
Joined: 5/30/2012
Posts: 66


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)    


Sylie
Posted: Monday, July 2, 2012 6:44 PM
Joined: 7/2/2012
Posts: 153


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!  

I believe and am training in herbalism, I have been studying herbalism for a few years, I 100% am against those medications the doctors want to prescribe, my very soul cries when I think of taking something that has such negative impact on the rest of your body just for a little help with one influence.  I took the Aricept with great resistance and massive guilt trips from family and was punished by my body for it. I was very relieved when my PCP said to stop taking it.  I have since started my own treatment plan, I use brain training games (3 hours a day), vitamin E, melatonin, niacin, ginko biloba, color therapy and I'm pretty sure I own stock in Post It Notes! my husband noticed that I have no had a major "bad day" event in over 2 weeks now. (I started my own therapy 3 weeks ago)  I know this won't work forever but in my humble opinion, it's doing something.
Ut oh!  I just realized I have gone off on a tangent and have completely forgotten what I was going to say lol!  Please forgive me, I have started my own book!
    Re: bloodwork, my 2nd opinion doctor ordered a whole slew of bloodwork which has been done but I haven't gotten the results yet, she ordered an MRI but I could not do that because I am SEVERELY claustrophobic, as in...can't even have my blankets up to my neck at night or cuddle my cat near my face, long kisses make me breathe funny and my brain go frenetic.  the doc that ordered it was not "comfortable" giving me a sedative I would probably not take it anyway, so...guess the neurologist will deal with that.
    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  
I did look for a support group in my area but the closest one is much too far to drive with gas prices as they are. Plus, husband would not go with me and the chances of my getting lost are very high.
I have always laughed at inappropriate times (funerals etc) so I don't think that is a symptom lol 
Ok, this is the end of MY book  thank you again for talking to me!
 

Sylie
Posted: Monday, July 2, 2012 6:55 PM
Joined: 7/2/2012
Posts: 153


Nie,  hahahaha!!  I agree...digital clocks for all!
eaglemom
Posted: Monday, July 2, 2012 7:02 PM
Joined: 3/7/2012
Posts: 2408


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

 


Mimi S.
Posted: Monday, July 2, 2012 7:16 PM
Joined: 11/29/2011
Posts: 7035


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.

 

 


Sylie
Posted: Monday, July 2, 2012 7:18 PM
Joined: 7/2/2012
Posts: 153


Thank you Eagle, I intend to hang out, everyone has been so understanding and so encouraging and helpful and funny!  I love happiness and laughter and I really really needed this today,  THANK YOU TO EVERYONE!!  *hugs*
Sylie
Posted: Monday, July 2, 2012 7:31 PM
Joined: 7/2/2012
Posts: 153


Thank you Mimi

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


nomemo
Posted: Monday, July 2, 2012 10:16 PM
Joined: 3/21/2012
Posts: 439


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. 

 

 


Sylie
Posted: Monday, July 2, 2012 11:26 PM
Joined: 7/2/2012
Posts: 153


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.


Geegee
Posted: Tuesday, July 3, 2012 10:54 AM
Joined: 11/29/2011
Posts: 514


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.


Geegee
Posted: Tuesday, July 3, 2012 10:55 AM
Joined: 11/29/2011
Posts: 514


Sorry, that was a chapter!    I do tend to ramble at times.
Iris L.
Posted: Tuesday, July 3, 2012 12:47 PM
Joined: 12/15/2011
Posts: 16236


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.


time4us2
Posted: Tuesday, July 3, 2012 2:46 PM
Joined: 6/21/2012
Posts: 34


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


Geegee
Posted: Tuesday, July 3, 2012 3:12 PM
Joined: 11/29/2011
Posts: 514


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.


we wish you the best as you join us on your new journey and need for support.




Sylie
Posted: Tuesday, July 3, 2012 4:01 PM
Joined: 7/2/2012
Posts: 153


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


Iris L.
Posted: Wednesday, July 4, 2012 1:30 AM
Joined: 12/15/2011
Posts: 16236


I must admit, sylie, I'm confused and somewhat taken aback by your response.  Your initial introduction presented yourself as being in a state of desperation and uncertainty. At least that was my impression.  You have been given Aricept but you seem uncertain of the diagnosis and the treatment.  Did I miss something?

Nevertheless, I wish you well on your journey through the medical evaluation process until you find the answers you are seeking.

Iris L.

Sylie
Posted: Wednesday, July 4, 2012 9:20 AM
Joined: 7/2/2012
Posts: 153


Iris,
I am sorry that there is some confusion, in my very first post I mentioned that my PCP diagnosed me with EOAD and prescribed Aricept and after alot of fighting with my husband and parents on the issue, took the first dose which left me in a state of zombieness (probably not a word but I think you understand), I mentioned in that first post that I couldn't walk or function after it and my PCP told me to stop taking it.   I had taken the Aricept before bed as the pharmacist told me to since I am the only person in my household with a drivers license we didn't want to chance drowsiness.
When I woke up the next day, after 13 hours of sleeping due to the Aricept, I couldn't function, the dizziness was incredible,  the side effects in general were unbearable so I called an alternative medicine doctor that I felt would have a more natural answer, and she could see me right away that day, I went to her and she seemed to be mistakenly focused on the dizziness (caused by the Aricept) thinking that the dizziness was a symptom in general rather than a side effect. She ordered a ton of blood work, did a bunch of tests in the office including vision screens, depression questionaire, etc etc.  She ordered an MRI and set me up with a Neurologist and my appointment with him is not until the end of July. So I am currently in a holding pattern,  my PCP still thinks it's EOAD but the alternative medicine doctor isn't as sure.  I am just waiting for the neurologist appointment.  
In the meantime, I am using herbs and brain games, aromatherapy, healthy diet, my walks with my mother, and attempting to keep a positive attitude, obviously failing on that one. My sincerest apologies.  I was hurt by a comment made to me that my belief in the herbs over the drugs was essentially rubbish,  that wasn't the words used by this person but thats how it came across.  Not to make excuses but I don't think that I am handling everything quite as well as I would like and my moods tend to be all over the place,  even within a single day I could be crying and desperate and 5 minutes later be laughing and messing around like nothing was wrong.  This unstable emotional state is not normal for me, I'm assuming it's part of the way my mind and body are dealing with the uncertainty of whats going on and I do apologize to everyone.   
Because of my unstable emotional state right now, I think it best if I just not come here anymore.  I sincerely do not want to hurt anyone's feelings or make any trouble for anyone or anything like that,  you all have your own issues and do not need them complicated by me.  I do feel this is an amazing place to find support and answers and will miss you all very much.  But I think my emotional state is just too unstable and I don't want to cause anyone any trouble or hard feelings so I think it's better if I just not come here anymore.
I do want to thank everyone for all of their advice and caring and support. You are all amazing people.

Mimi S.
Posted: Wednesday, July 4, 2012 10:05 AM
Joined: 11/29/2011
Posts: 7035


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.


Lane Simonian
Posted: Wednesday, July 4, 2012 10:25 AM
Joined: 12/12/2011
Posts: 4632


We will miss you Sylie.  Don't ever feel you have to apologize for anything you say about yourself or how you feel.  Most of us do that on this board.  For a number of us, it is what helps us function better either dealing with the disease for our loved ones or dealing with it ourselves.  The best of wishes to you.  Come back whenever you want to.
Lane Simonian
Posted: Wednesday, July 4, 2012 11:01 AM
Joined: 12/12/2011
Posts: 4632


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. 

 

 

 

 


mish
Posted: Wednesday, July 4, 2012 11:10 AM
Joined: 6/21/2012
Posts: 439


I know i have been   away for a bit but  all I can say is "Huh:",  did i miss something?
Lane Simonian
Posted: Wednesday, July 4, 2012 11:33 AM
Joined: 12/12/2011
Posts: 4632


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.   


Nie
Posted: Wednesday, July 4, 2012 12:19 PM
Joined: 5/30/2012
Posts: 66


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

 


Randy55
Posted: Wednesday, July 4, 2012 8:28 PM
Joined: 6/21/2012
Posts: 40


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???!!!!


Sylie
Posted: Wednesday, July 4, 2012 11:32 PM
Joined: 7/2/2012
Posts: 153


MARGARITA'S AT RANDY'S!!!!  *gets out little paper umbrellas and starts "bunny hop" music *     Who's going with me?
Conundrum
Posted: Wednesday, July 4, 2012 11:48 PM
Joined: 6/29/2012
Posts: 292


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

 


Sylie
Posted: Wednesday, July 4, 2012 11:50 PM
Joined: 7/2/2012
Posts: 153


Thank you  I appreciate that,  and send the brightest days to you.
Sylie
Posted: Wednesday, July 4, 2012 11:52 PM
Joined: 7/2/2012
Posts: 153


I hope everyone can see my new avatar,  I think it's absolutely hilarious!!  very fitting for me right now hahaha