RSS Feed Print
Beginning the journey of AD
Internal Administrator
Posted: Tuesday, January 17, 2012 5:39 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: Barbara Ann

5 years ago I had neuropsych testing done at Emory in Atlanta, and, simply put, the report said "can't rule out alzeheimer's at this time".
I was 59. My mother was diagnosed with AD when she was 59.
I didn't follow up with a neurologist because I didn't want to face the horrible truth. I had gone through the whole awful decline with my mom.
In the past year or two I've become increasingly angry at just about everything. Now I'm deeply depressed and cry all the time (never been this way before). Every day I say that I'm going to be different - happy again, not angry at everything. But each day its no different. My sons are tired of it. The worst part is that they think this is "who I am". I know, we all thought my mother was a cranky selfish person before she got lost and couldn't find her way home one day.
I finally decided to "face the music" and get help. I found a compassionate neurologist who specializes in AD. He looked at my 2003 neuropsych results and did the usual 7 minute test. He put me on aricept and lexapro. He was positive and gave me short term hope. I should have faced this disease 5 years ago. Maybe I wouldn't have alienated my family.
I retired several months ago and enjoy different things now. I used to hate cleaning house and had a housekeeper. I was always "on the go". Now I look forward to cleaning and organizing my house, taking care of my pets and , most of all, working in my garden - My life is uncomplicated. I leave the house when I have to. I don't want to be around people because I don't interact well anymore. I spend hours on the computer.
The only issue so far has been leaving things on the stove. So, when I cook, I stay in the kitchen.
If anyone would like to email me I'd love to hear about your journey.
thanks for reading this. I'm so happy to have found this forum.

Barbara
thoman@bellsouth.net
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

Hi Joanne,
thanks so much for your care and concern.
I was a caretaker for my mom's eoad and it was heartbreaking to see a vibrant lady in her 50's turn into a vegetable. It took all the life from my dad who packed a lunch and sat with her all day every day in the nursing home even though she didn't have a clue who he was.
Unfortunately, this is hereditary in my family.
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Lisa 428

Barbara Ann,
Please read my reply to you on the "I have Alz" site!

Peace and Hope,
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Joanne C. Mueller

Barbara Ann: I am sorry for all that you are experiencing now and have gone through to get to this point.

Your testing is "very limited" -- there are lots of other tests that must be done before a doctor should diagnose "EOAD/Alzheimers." Even after PET Scan and all the blood work, we identified several things that have helped my husband, Bud and myself: see my appeal to Dr. Marilyn Albert at: http://freepage.twoday.net/stories/3038870/

If you have any electric appliances or telephone equipment close to especially "head of your bed," you will want to move the items at least across the room. There are varying opinions as to potential "safe distances" for electric meters, gas meters, clocks, monitors, transformer boxes and also, you may have something that is close to wall in adjoining room. Many adverse symptoms are being caused by improper wiring, currents on water pipes that run under and over beds and grounding problems.

A post regarding moving any such items - also, cell phones should not be close to beds -- many persons are actually sleeping on top of them -- particularly as any positive changes occur after "practicing prudent avoidance," will go a long way toward helping others.

Unfortunately not enough persons are working to inform re avoidance of close electric field exposures before persons develop memory problems.

Best wishes to you and take care - Joanne
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

Hi Missdroth,
sorry to hear about what you are going through. It helps to hear from others going through the same thing.
I had 4 hr neuropsych testing done in 2003. My insurance paid for most of it as well. Most of what I remember is that I couldn't figure out how to salute and had trouble drawing a clock. Knew it didn't look right but couldn't figure out what was wrong. I think I put the "1" at the top where the "12" is supposed to be. Repeated testing in 2004. I'm having a third set soon.
Has the Razadyne helped? any sideffects. I'm on Lexapro and Aricept which gives me nausea. I am so much better though that I'm determined to get through the nausea.
Please keep in touch.
Barbara
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: missdroth

I was told to undergo extensive memory-loss testing to establish a base-line score for future comparison. I was one-on-one with a doctor for 4 hours. I was given a consultation with a neurologist, a phyciatrist, and a conselor, along with a copy of the 10-page report for any future need. I was started on Razadyne and the test will be repeated in about a year. My insurance paid for all but about $200.
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

Hi Misdroth,
Wow, thats exactly what I do - work for hours in my yard! Helps so much - feel so much better. I also photograph wildlife in my yard. Just put up a bluebird house and within a couple of days had a pair check it out for a few days then left, but I got some wonderful bluebird photos. Noone cares about them except for my 3 year old grandbaby. She loves to get my photos (thats why I do it). I used to be very busy with a hectic schedule. Then it became extremely stressful as I kept forgetting things and getting confused.
About the neuropshch testing. I did rather poorly on the 2003 test but didn't get any worse in 2004. It's gotten worse for me in the past couple of years so theres no telling about the next test. Last evening I was in the self-checkout line at the grocery store. go there every couple of days. there's 3 check out stations. two were occupied and one was clearly open, but I didn't recognize it as being available. A guy walked up, brisked past me and went to the open station. Thats when I noticed it, and it was right in front of me! That kind of thing gets me distraught - it makes no sense why I don't recognize simple things.
Its so good to be able to talk about this with others who understand. I couldn't tell anyone "normal". I kind of know what the future brings because My mom had AD. thats depressing but I try and not think about it. I have been unstable and cried at everything (not like me at all) until the aricept/lexapro started to kick in. What a difference. I have been on Lexapro for the past year or more and it didn't help much. My doctor kept telling me to go to a neurologist. Finally did and he added the aricept and what a difference! I had my previous neuropsych testing done at Emory in Atlanta. I was so upset at the results that I wouldn't go back. I felt there was was nothing that could be done so I stuck my head in the sand. that was stupid because there's medication now that wasn't available for my mom.
anyway, sorry for the long message. Just good to be able to communicate. I have a hard time with conversations but can get my thought together quite well in writing.
PLEASE keep in touch.
Barbara
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: missdroth

I have been taking Razadyne for about two months with only about two weeks on the recommended dose of 24 mg. I stayed on 16 for several weeks longer because of nausea. I find that I can function if I stay away from processed food like canned soup and frozen dinners, and drink lots of water. My biggger issue is extreme tiredness, usually for three hours over late morning and early afternoon.

I had trouble on the test with memorizing addresses and phone numbers and things like map skills. I am glad for the chance to repeat the test next year as it is hard to know if I am doing better. I retired and spend hours outside each day doing yard work. That alone should help me to function better. I am very anxious about the future.
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: missdroth

To Barbara and others who are themselves patients and able to communicate. How old are you and what was your age when diagnosed? I am 58. I was a middle school Language Arts teacher. I have applications in for fall at a craft store and a book store. That will be my test to see if I can work at something less complex than teaching. I maintain two acres of lawn and wooded lot. Right now I am moving the wood out of the shop of my late husband. That has been a challenge. Oh, I'd like to know if anyone else has the hours of extreme fatigue, followed by feeling good.
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: jbell

thank you so much barbara ann and jo ann for the replies. i truly feel awkward at login control of the way i communicate. i had dreams of becoming a writer upon retirement! hey gertrude stein was 62 also when she started to write. but i sit down to bring out what is in my head and it just goes ka-plooey. i searched for over a month for this word: compose. i cannot sit down to compose. but i have decided to try and find a way. bear with me, eh? joanne...first time i've heard of melatonin on the a-train (my little nickname for "this"). you can bet i'll look into it. we also have a well respected school of chinese medicine here in denver. i'll be seeing them in august. there is a dr. weill out there in the alternate medicine community who talks about electo-mag fields. we are making some changes in the house this weekend. thanks. barbara ann: i shall try and write you an email soon. for some reason my email thing isn't allowing me to write replies..it just sits there with a blank page impervious to typing. but after i speak with people pc let's try. i really need a buddy right now. for instance today i had a really bad "episode". i was trying to help a customer with some "new age" music. he is post stroke and having great difficulty sleeping. i am a buddhist and have practiced meditation for about 15 years now. i use this music every day and i just could not commuicate to this man the ideas/artists i thought could be a help to him. i could feel the heat in my face as i stood there tongue tied. i finally confessed to him "look, i'm in the early part of alz. let's go to the section and see what i can recognize. we both stood there with tears in our eyes for a moment. i did find him some stuff to check out. i am getting so uncomfortable being in the public. my partner is so supportive--we have been throughh a hellofalot together. (not to mention the true love of my life: bryce, our dog of dogs. we both say of each other that we both 'come in a close second' with each other when it comes to bryce). i lost my train of thought...that's how i came up with 'a-train' (plus i love duke ellington). i'm either on MY train or the a-train. ok it's not pulitzer material but it's mine! (humor is VERY important to me, especially now). as we get to "talking" i do have a lot to say about buddhist practice and what i am going through. (please understand that i study and honor all spiritual paths. i am NOT proselytizing when i speak of this...just sharing experience). i just hope i can find a way to share it coherently before i fade into the mist. how strange this feeling is of finishing a sentence and not having the foggiest idea of the context i was "in". well another time. thank you both so much for sharing back with me. you truly have made my day. peace and light. john
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

John -
Wow - your story sounds like mine. So sorry for your difficulties esp with no insurance and being a caregiver.
How were your baseline studies 4 years ago? Its interesting how when we diagnose ourselves people say "if you had AD you'd be the last to know". I went thru the whole bloody thing with my mother and know the signs and progress from start to finish. In the beginning, I saw the same confusion and fuzziness, and it sounds like you have the same problems.
I had to retire because I was forgetting everything, couldn't find anything, taking messages and immediately forgetting the request.
I've always paid for my own health insurance because I was self-employed. A lot of folks around here check groceries at Publix to get their insurance. They love it because it gets them out with other people and its stress free. Some grocery stores offer health ins and some don't.
Please get on aricept or something - I didn't and regret it. Maybe the public health insurance thats available to you would cover the medication.
Since my neuro studies in 2003 I've know I have a problem but didn't want to face it so didn't go to a neuro. My insurance was a part of why I didn't get help. Please don't do that!
I have been reaching out for others like me on this message board - so lets keep in touch. below is my email. There's got to be lots of people like us out there that we can have as support.
thoman@bellsouth.net
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

Hi Misdroth,
I'm sorry to hear that your husband passed away and you are so young to have these problems! 2 acres of land is a lot to care for by yourself!
I was 59 when I started to have problems. I'm 64 now and still functioning - I think.
Hope we'll hear from others.
Bless you for being a middle school teacher. My doctor said some of his patients have had moderate cognitive problems for years and have not progressed to full blown AD. All we can do is hope.
Barbara
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: jbell

barbara ann. my name is john. i am 61 years old and i live in denver with my partner of 23 years. he is a diabetic with amputations below knee/both legs. his health is in decline but he is in characteristically good spirits. i have 'something going on' that i believe is alzheimer's. don't dismiss me. i was a psychologist for 20 + years and i watched my mother go through this. i had some baseline pyschodiagnostic done about 4 years ago and am about to repeat things to measure what has happened. i have never used a chat room and feel quite out of place. thing is i am scared enough to do this because i lost my insurance at work and cut to half time doing special orders only (i work at a record store in denver)(cause i wanted to! been in music biz that-a-way for 19 years). perhaps you can "tell" by the fuzziness of this letter. what you can't see are the typing and grammar errors. i have few resoucres. we have a public health insurance system here in denver that is good at some things and frighteningly bad at others. what scares me is that i have been a care giver for most of the 23 years i have been with my partner. i am so worried that i will soon be unable to help him. i sit here and spin my wheels. i plan to retire early (june 09) but am worried i can make it that far. i am REALLY uncomfortable among the fully functioning right now. i either miss or lose track of what people are saying. ct scan next week. i hope the neuorology people will give me some clues. i called disability once and was put off. the lady said since i can retire early next year it would make no difference to apply since that takes a long time and once a retire 'diability' would "move over" to my retirement income anyway. and soc sec is all i shall have. i heard a story on the news (well tv anyway) about korea where in the worst of times, the old ones take a jug of drinking water with them to the steep bank of the river, starve themselves to death and let their bodies roll into the river. i am not by any means suicidal but that story definitly strike a chord with me at the moment. i think i'm speaking too much. but i've got to touch base witha person. obviously i don't know the ropes! gads, i used to express myself so much better than this...jbell
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: MaryCanada

I'm 63, diagnosed two years ago. I took early retirement when I turned 60, because I wasn't able to do my secretarial job any longer due to the confusion in my head.

I was started immediately on aricept, and two months later on namenda. The combination of these two drugs are fantastic.....and life is good again!

When first diagnosed, we researched for days and hours, finding out all we could about EOAD. I even applied to be in a neuroimaging research program for AD at Toronto. However, after going through all the testing for that, they decided I probably had the language presentation of frontotemporal dementia. I'm in a neuroimaging research project now for FTD.

FTD eventually has the same outcome as EOAD, but for now I have no memory problems, which is a major plus....just executive functioning problems.

I've learned over the two years.....SLOW is good. Then I don't make so many errors in my cooking and other chores I'm doing.

I spend most of my days on the computer. I used to sit in the chatroom at http://www.alzinfo.org/alztalk/flashchat.php about 12 hours a day, chatting with folks from around the world. But I seem to have burned myself out there....and now spend my days getting brain exercise playing games at pogo.com. Research is showing we can make new routes through the mess in our brains with brain exercise, and I really think this is working for me. My MMSE has gone up instead of down over the two years!

Like the rest of you, I really struggle when trying to speak to others....so I started an online journal two years ago, so I could share my journey with family and friends. You are welcome to have a read there. www.simplesite.com/mothermary

I've also been on the cinnamon capsule regimen since reading here about it dissolving plaques and tangles. I'm sure the "magic cure" is too far off for most of us, and I'm willing to try anything available to me now.

Good luck to you all
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: MaryCanada

Hi Barbarba Ann....so good to hear from you. Wow, you sound identical to me with the confusion starting six years ago. Like you the aricept and namenda have helped me tremendously with the aphasia...and I'm so thankful for that. The only times I have problems now is when I've had too much input....like shopping or visiting with kids and grandkids.....have to take a break after an hour for sure. AT that point the confusion in my brain is too great to even understand what people are saying to me.

I got the Nintendo DS and Brain Age Games I and II for Christmas this last year....and worked them daily. I loved the sudoku, and then the Virus game on II. I actually got my brain age down to 18 on Game I, but on game II I was stuck at 28....and climbing some days up to 40. lol

Now I'm mainly doing the pogo.com games..... scrabble, canasta, keno and slots are my favorites. If you're ever in there, put DementedLady in your Friends list, then you can find me.

The cinnamon capsules....according to research done in the Phillipines, are dissolving plaques and tangles. I take 2 500mg capsules morning and night. Cinnamon capsules are sold to help balance elevated blood sugar. I figure if a side effect is dissolving plaques and tangles, I want that!
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: jbell

this is jbell again and this is for missdroth. i'm still a little unsure of how this chat business operates. first off i am sorry for your loss. i don't wish to even imagine the feelings of facing what we're facing without one's best-est buddy by one's side. may we as a community do you some justice in that regard. fatigue you say? thank you for saying that. i have these bouts of fatigue most often after about 4 hours at work where i feel like i am going to lay down whether i plan to or not. sometimes i leave work. thankfully my bosses are fully supportive of what i am going through. but yes indeed. i am ready to call them "spells". if i am at home i can give into them more easily and just have a lie-down. but then i "lose time", like alien abduction lost time! (i wish! well why not...it's an adventure). i "come to" and it's anywhere from 30 mintues to 4 hours later. i am way curious to know more about this. thanks for mentioning it. jbell
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

Hi Mary,
so good to hear from another one of "us". I've been told that I probably have a frontotemporal type of dementia too. My mother was the same and I heard Pick's disease bantered around. It was the confusion that started first - slowly over many years. I think back to 10 years or more ago when I began having trouble collating on the copier. Things turn into a hodge-podge mess. Always scatter brained. The aphasia started slowly several years ago. Conversations have been difficult in the past couple of years. things were getting fuzzy in my brain for several years too, but now my memory is going.
Aricept has helped tremendously for my language skills!!! It has helped to a lesser extent for the memory. If I don't stay in the kitchen while I boil water for my ice tea I just don't remember it. I have a timer built into the cooktop that automatically turns off the heat and beeps. I still forget about it until I hear the beeper. But for now I'm elated with the improvement in language skills.
thanks for all the good info. Lisa recommended the games Brain Age and Brain Age 2. You have to buy the Nintendo device and each game at Walmart is $19.95 (higher at other stores), but its worth it. thanks for pogo.com
What is the cinnamon capsule regimen?
Lets keep in touch. there's got to be lots of people like us out there.
I'm going to your website.
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: MaryCanada

Barbara Ann.....in Canada the cinnamon capsules are sold at Health Food Stores, and are extremely expensive. I have a friend in the States who buys them at Walmart for $4.95/bottle (500mg), and mails me 6 bottles at a time.

I've also developed problems with my anger over the past year. Strange....cause I've always been such a laid back person....but now, sheesh....I've even learned some four letter words! he he Poor Jim....he knows just to leave me be....and I'll get over it!

I'm in a neuroimaging study for FTD in Toronto...and go every six months for the 4 hour cognitive testing! Like you....I know the test almost backwards now, and ace it! lol Only took me 2.5 hours to do it in April. My MRI and SPECT scan and CAT scans, which I've had done twice now, only show abnormal shrinkage to frontal lobes.

You know research is showing the aricept and namenda together in early stages is working better. I wonder if you might ask your neuro about adding namenda? You'll find a link to the research study in my Journal.
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

Wait - we go to Canada to get our drugs cheaper. I'm headed to WalMart now - no time to lose, maybe it'll save a couple extra brain cells from tangling.
The recent meuro test I did had similiar things to Brain Age ie draw lines starting at A-1. I was done before she had a chance to write down her notes. When I first did that game on Brain Age I had to do it a couple of times to get the directions straight. Thats embarassing to even admit.
The idea of taking both aricept and namenda sounds great to me. Hope doctor will go for it. Thanks for that piece of info. I'll followup on your website. What study are you in? Do you have an mri every 6 mos? Do they see increasing shrinkage in subsequent mri's
Has your anger gotten better with the drugs?
All the info that we can share with each other will help us all.
thanks again
Barbara
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: missdroth

Thanks for the input regarding exhaustion, also a reminder to find those computer games again. I used some of the typing games to get my keyboarding up to speed and to keep my fingers loose. For those of you who are regulars, the wood and tools are out of my husband's shop and the carpenter started today. I feel like I'm on vacation after all the sorting and hauling.

In addition to Razadyne for memory loss, I also take Seroquel, Neurontin,Lamictal, and Ambien CR. I know that sounds excessive, but it has worked for me for 20 years, just adding the Razadyne this spring. Does anyone else have a doctor-prescribed complex like this? I'm told there are no long-term effects, I guess proven by my ability to maintain a career. Makes me uneasy, but I've had the same psychiatrist/neurologist for the long haul.
Anonymous
Posted: Tuesday, January 17, 2012 5:39 PM
Originally posted by: Barbara Ann

Hi Mary,
Where do you get the cinnamon capsules??
I hear others say they get too much input and have to take a break. I don't think I have that problem or just don't know that I do. My 5 year old grandson is "all boy" and I get tired. But my 3 year old granddaughter is great 24/7. she is wild too but not in the same way. I want to fight this thing to see as much of them growing up as possible.
I can't do the sudoku at all. Haven't done anything with the virus game. I like Brain Age 2 much better then the 1st one because I have trouble getting it to recognize my writing on the word memory game (where you memorize as many words as you can in 3 minutes). Its too frustrating to write the same word over and over. I especially have trouble with "k"s.
I've been doing brain age 2 for 8 mos or so and can do pretty well with it. I'm determined to improve "clock spin" and just never get much better at it. It's my own little test to see when the aricept starts helping.
My first neuro testing in 2003 I had a problem drawing a clock and spacial problems. At first the doctor administering the test said that I didn't have Ad for sure because my memory was so good. But when she scored the tests she said "she couldn't rule out AD" because of these other problems. If I remember, she said I had left parietal lobe problems and ruled out stroke (from my mri) and ruled out anxiety. That left some sort of dementia. But when I repeated the tests a year later I did a little better. I think it was because I was familiar with the tests since my memory wasn't a big problem at the time. I have had a problem following directions. So during the first testing I had problems with that aspect. The second time I knew the directions and did better.
I got sidetracked and didn't get online to your website - will do later tonite.
do you have problems with "clock spin". I can't get past automobile speed. What part of your neuro testing did you do ok with and which part did you have problems. This worries me because I've read that Picks Disease is more hereditary and worse in some ways then AD. Lets hope they find a cure for our kids and grandkids!!!
Have you had trouble with anger. I have had an anger problem for the past year or more. It keeps getting worse. The aricept and lexapro made it go away very quickly. We have a gentle friend who developed an anger problem in the early stages of the disease and they say he has a fronto temporal lobe dementia. My mother had anger and they eventually they had to give her some heavy duty medication to stop it. Unfortunately they didn't have aricept or the likes back then.
thanks for the reply, so good to hear your story. Tell us more. The more information we can get the more it helps all of us. Looking forward to reading your journal.
Barbara