Hello, I would like to begin a thread to help people like myself that are in search of a support group. This board has attracted a tremendous group of people that are in touch with Alzheimer's. I hope to open this thread so others can publish open journals while accepting input from any others that with to make entries. Hopefully it will provide a system of support for each of us.

Hello, my may is Tom. I was dx'd with EOAD in June of 2008. I was 58 and my wife noticed many minor and curious changes in my personality. I was forgetting how to get to places I had been to recently. I was also becoming less patient, even a little "snappy" maybe. Now is a good time to explain how wonderful my wife (Gerry)is. She is my best friend and I love her. She is also a professional in Human Resources. Therefore I respect her opinions in that area.
At Gerry's suggestion I sought professional help in trying to understand the recent changes. After about 6 months of testing EOAD was the consensus of three doctors.

After my proffessional career of +30 years ended as a result of the Electronics industry relocating almost all manufacturing to Asia I began a new job as a nail gun repairman. This is a great job for me. It doesn't require any management responsibilities but it is mechanically challenging. The ownership is Christian oriented and fair. When I get into an analyical problem problem and get stumped I can ask questions and get put in the correct direction. Most of the time the work is repetitive enough so I can handle it. They are basically my support group and we are all pleased.
My Toolmaking and Mechanical Engineering background makes this a fit for me. I guess the grace of God makes it a fit for my employeer.

The end of another day in the salt mines! Today could have been an almost total loss if it hadn't been for my young manager. I could not focus and fixed about 1/3rd of the expected tooling in the morning. Steve asked me to reorganize some inventory bins when he noticed my dilemma. These people are so understanding, I truely hope that I am helping to be profitable!

Tonight my wife and I went to go to a Support Group for the firs time. Thought that it started at 6pm. Got there 15 minutes early to speak with the moderator and found that I was an hour early.

Tom, run a similiar path as you have had except I am not married and blessed to have a great lady friend that noticed my symptoms at about the same time as your wife did yours. I am 59 and was in the funeral business for many years. I also had several other medical conditions I am dealing with, none of them like this tho. I am fortunate in ways because I have been on disabilite with some of these other issues for approximately 7 years. Overall I am doing very well and have been on the Exelon Patch 9.5 since last December. I do notice little things that are happening from day to day I am not able to do as well on some days and ok another. I guess this is the way it goes. I am new as of today so this is my first response to any post. Just wanted to say hello and introduce myself and hope to catch up with you later

Dear Ttom and Phil &Flops,
Hello. My name is Lisa. I was dx last fall w/EOAD @ 53 years old. I take Namenda & and Exelon patch, also, Lexapro. I am no longer able to work as a Registered Nurse. I finally received my LTD & SSD. I am a member of the Early Stage Advisory Board/Group for the Alz. Assn. When I was diagnosed here(greater New Orleans area) last fall, the AD assn did not have an EOAD support group. At my request and with a lot of support, we had our 1st. EOAD support group last week. We will have 2 group meetings per month! I am very excited about these meetings. I feel I need to speak with people like myself. Find out how they are doing and coping.
I have posted info. on the "I have Alzheimer's" patient only thread.
Thanks Ttom for starting one here.

Keep in touch!

Peace and Hope,

I forgot to say that I am, also, a caregiver to my Mom who is 77 and suffers with AD!!

Peace and Hope,

Hi all- glad to have you visit this page. I will use this page to document my personal walk with AD and it is always a pleasure to have others input as well.
My wife finally went ot the Support Group at the correct time last night. It was great for both of us. She got to speak with other caregivers and I meet a couple people in positions similar to mine.

t.tom.miner@comcast.net

Seems like I've become more considerate of others with problems of any type. Not sure what accounts for that, maybe maturity, associative behavior, grand parenthood or co-dependancey. It could even be due to my new job. I don't needc to be responsible for the ($) bottom line anymore! I work with extenal customers (PEOPLE) who come to me in need of help. Whatever, I think it is positive. As a Manufaturing Engineer my percective was from a cut dry, anaylical view.

It seems nice to let myself become interested in people.

Hey Tom...did you ever receive my email? I sent one after you gave corrected email...but have not heard from you...or if I have I didn't recognize it lol lol lol my email is elizabethspirit@att.net

I came to this site tonight to add something else that I thought was relevant to my journal. Saw the Dr J had left a note and replied to her on email but now I've forgotten what was so important. Aren't some of the issues of AD great?! After another 15 minutes or maybe even less I won't even care that I forgot. I still remember sleepless nights during my professional life mauling over possible options of different situations. Hope the Aricept and Namenda cant slow the progression to the point that I begin to worry all night again!

What a wonderful weekend! We left home Saturday morning and visited Walton's Mountain in Schuyler, VA. They were having an anniversary party and it was a special event. Loved all the "John Boy" stuff, the Blugrass music and the scenery. From there we went to a hotel in Roanke. The GPS in the truck was a huge help all the way. It even located any eating establishment we wanted. From there we went to the NASCAR race in Martinville where my driver (Jimmy Johnson) won! After the race we went drove back to our room in Roanoke and managed to have a fantistic evening. We drove home Sunday via the Blue Ridge parkway. I had never been on the section from Roanoke to Stauton. At one point we had a Bob Cat running down the road in front of the truck for about 100 feet. That was Soooo cool!
This was the first time that I took a vacation while riding the entire time. My family doesn't want to ride with me and that aint so cool! Im still a very safe driver. My wife is concerned because there are times that I dion't see what Im looking at. To this point that only happens when looking for small objects in a group of other stuff. Or, when I'm looking in an un-familiar spot. I have never bumped into something that was right in front of me. The ride was enjoyable and Jimmy did win!

Journalizing publicly feels right. I really hope that this document can help some one. If not, it has helped me to reflect back on recent events in an effort to remember. It will also become a resource record my travels with AD. I keep items to spark my memory. Things like a piece of rubber to recall the trip to Martinsville Speedway.

Ttom, cool idea. Have you considered starting your own blog? Y'know, get your own domain name, or one of the easy Google blog sites? Just a thought. I tried a while, didn't take off, but it's an idea.

My wife and I will attend a second Support Group in the area tonight. There are three groups within 5 miles of our home that meet at acceptable time frames. We are looking for the ONE that best fits our needs.
Allen- I have not tried another sourceto journal. This is easy for me and I have become familiar with the people that frequent here.

Bummer Dude! I was cooking burgers on the grill tonight. I went to them them after they had been covered for about 10 minutes. They weren't ready so I closed the lid. Let them go another 10 minutes but they still weren't ready. Upon further analysis I noticed that I had forgotten to light the grill!

We didn't make it to the support group meeting last night. My wife didn't want to watch the flick they were going to show and didn't want me to watch it either. I was told that they were going to air one that showed all stages of AD. Since we are not going there she didn't feel we should be putting our selves thru it. I told her that I would go anyway since I enjoy learning. When I got to the truck and thought about it, I got cold feet as well. As I thought about it I went to sleep. Woke up a few minutes later 'cause it was cold!

Been having trouble lately. Seems that I left the water running in the washroom last Friday afternoon. I know that my analytical skills were at a low as I just couldn't seem to repair tools quickly. Not even half a quick (slow) as I usually can. Got myself a tangled up in my underwear on the ride home from work Friday evening. Rode all over the country. Thank God for cell phones, I was talking with my wife on the cell until I could find my way again. What it was- I had to take a detour due to a police incident. The detour was on roads that I had traveled before but I got lost anyway.

My own journal is at www.wheretobud.blogpsot.com

I would appreciate any input either here or there.

Parental Advisory.

Thanks

Esilem,

I enjoyed your site and will most likely go back to it many times. Like most others on this site Im a practicing christian and love the Lord. I would respond to you on your site but I couldn't figure out how. I would like to keep this page focused on AD and not issues of faith. Please let me know how to be able to respond to you on your site.

Hey Ttom

Thanks for visiting the blog and your comments. At the end of each section is a place that you can click for comments (on MY end, anyway) click on that and see if it opens up a window for you. if not, let me know, and I'll fix it. I'm new to blogging so bear with me!

Thanks

Esilem,

It is not there.

Esilem, how do you pronounce your name? Is it Indian?

It is written backwards, Alan. It's the name of the one who left me because of this. I will always love her.

Bill

Melise. Pretty name. Her loss.

"Pretty Name"?

Yes, Alan, and very pretty in real life as well.

But, looking at it reastically, if you were that pretty and sweet and had a future life with someone who did NOT have AD, wouldn't you go for it?

Let's face it after all, aren't we asking a LOT of our partners to put up with this shit?

I feel like making a sign on which is written: "I have Alzheimer's! Don't Pay Attentiom To Anything I Say Or Do!"

I'm so tired. I'm so tired.

This post took me 45 minutes to write. Not because of its length, but because of its content. I wish I could write something more positive, but I miss her, and I have to get whatever strength I can somewhere.

Sorry! I KNOW I need to get my ass in gear, and I will, but right now I don't know whether to shit or wind my watch, so I am turning to y'all.

Bill

My wife and I had unfortunate disagreement the day before yesterday... I think. I don't even recall exactly what it was all about but Im aware that it happened. Most of the issue was probably my fault but I don't even know enough talk about it.

we are going thru some financial problems and i can't help but think it is my fault cause i can't work any more. i have been the main support of our family for most of our married life. especially the past 20 years. now i can't do it and we are having problems. we saw a lawyer about it and that should help but there is so much paperwork i feel as if i am drowning. i will have to ask our daughters for help this weekend to do them all. for that and for the social security and help with the paper work for the meds I am on. found a place to get them free for 90 days at a time. called needymeds.com. So i will try that for when i can't get samples. I am not sleeping well tonight too much in my mind. all jumbled together. listening to cds and trying to wind down. it is so hard to concentrate for any length of time.
enough. later
margi

Concentration seems to be a major problem for most of us with AD. I have always been extremely focused, almost to a fault. Since I can't focus for an extended period anymore I find myself going round and round and not getting to an acceptable resolution. That cirle eats up a lot of my time. After I recognize that I'm having a problem it helps to back off. Do something else and come back to the problem if I can remember to. The break seems to refresh me. That is my new method of multi-tasking. It might quit working some day but for now I have several projects going along with little "ticklers" to remind me to come back and what the problem is.

I will attach a web address fro an artical written by AARP. The subject is new and promising drugs for AD.

http://bulletin.aarp.org/yourhealth/diseases/articles/alzheimer_s_special2.html

I will try to copy and paste the AARP news about the Chicago conference here.


Today we conclude our special report on the international Alzheimer's conference in Chicago with news of two drugs that offer new hope.

From two "landmark" medicines that target Alzheimer's in a totally new way to an antihistamine drug that improves thinking and memory in patients with the disease, researchers reported some encouraging results at the international conference on Alzheimer’s, which ended yesterday.

During the four-day conference, scientists unveiled the latest Alzheimer's research, including two promising new therapies that for the first time successfully target "tau," the tangles of protein that form inside the brain cells of people with Alzheimer's. Although the cause of Alzheimer's is still unknown, many researchers have been at work on drugs that target beta-amyloid, a protein that forms sticky plaque on the outside of the brain cells. While both tau tangles and amyloid plaque are hallmarks of Alzheimer's, researchers have repeatedly shown that when plaque is reduced in the brains of mice with Alzheimer's, the mice can solve problems and run mazes that once confounded them. It’s taken longer, one expert says, to come up with drugs that affect the tangles and less is known about their role in the disease.

While researchers still believe that amyloid is an underlying cause of Alzheimer's, "I think having the first two antitangle medicines is a real landmark," says Sam Gandy, M.D., chair of the national Medical and Scientific Advisory Council of the Alzheimer's Association. The association organized the conference in Chicago.

"Our evidence," he says, "is that tangles form earlier than plaque. So it could be that a cocktail of antitangle and anti-amyloid drugs will be the most effective therapy."

Here then are highlights of some of the most promising drug studies reported at the conference:

Rember: Researchers in Great Britain found that a drug that directly targets tangles in the brain cells of Alzheimer's patients was able to slow the progress of the disease by as much as 80 percent. In phase II tests with 320 people over a 50-week period, the drug Rember was more than two and a half times as effective in treating the symptoms of Alzheimer’s as Aricept, one of the few medications available for the disease.

The new drug helps dissolve the tangles. "Our results show it may be possible to arrest the progress of Alzheimer's disease by targeting these tangles," says Claude Wischik, M.D., of the University of Aberdeen, Scotland, who did pioneering research with tau and is now working on Rember trials. "This is an unprecedented finding."

He says the drug also may slow the brain's deterioration. Rember will be tested in larger clinical trials that should get underway in 2009.

AL-108: This drug, which reduces the tangles in the brains of mice, was found to improve some kinds of short-term memory when tested in a 12-week study of 144 patients with mild cognitive damage (MCI)—a precursor to Alzheimer's. Men and women with MCI have memory problems but do not exhibit the confusion, attention problems or difficulty with language that characterize Alzheimer's. The nasal spray drug's positive results add to the growing interest in tau as a key actor in the Alzheimer's drama. Donald Schmechel, M.D., a researcher at the Duke University Medical Center, Durham, N.C., says the findings suggest tangles "may be as important—or perhaps more important—than plaques." Further studies are planned.



Relationships Do Matter in Fending Off Alzheimer’s


New Tests for Early Detection


Excerise May Slow the Ravages of Alzheimer’s


Drug Offers a Ray of Hope for Alzheimer’s Patients
Dimebon: Already hailed as a breakthrough drug earlier this month, when the results of a year-long study were reported in the Lancet medical journal, this antihistamine continued to impress researchers when the study was extended for another six months. The drug improves thinking and behavior in people with mild to moderate Alzheimer's and sustains those improvements for at least 18 months, researchers say. The few drugs available today to treat Alzheimer's only tend to stabilize impaired memory, so Dimebon is considered a real advance. Patients are now being screened for large phase III studies, which should be completed next year. If those are successful, experts predict this will be the first new treatment for Alzheimer's, and it could be on the market as early as the end of 2010. Dimebon appears to work by improving mitochondria, the powerhouse of the cell that creates the energy it needs to carry out all its functions. "Impaired mitochondria may play a significant role in the loss of brain cell function in Alzheimer's," says Jeffrey L. Cummings, M.D., a researcher on the study who is director of the Mary S. Easton Alzheimer's Disease Research Center at the University of California at Los Angeles.

PBT2: The drug prevents amyloid from interacting with copper and zinc, which have been shown to play a role in the process that "clumps" amyloid protein into sticky plaque. Not only was the drug well tolerated, but patients showed improvement in two tests of verbal and reasoning abilities. Those same abilities deteriorated in the group given a placebo. The next step is another small trial to determine the most effective dose of the drug, then larger clinical trials to test its effectiveness, says Cummings, who worked on this study. “The results indicate PBT2 is having an impact on the underlying biology of Alzheimer’s, which is very exciting," Cummings says. “I am very hopeful but cautious.”

To find out about enrolling in a clinical trial go to www.clinicaltrials.gov.

Hey

I'm Bill and I am so glad I found y'all. I am EOAD Stage II, and am trying to hang in there.

Thanks

Bill

Bill,

I copied and pasted your introduction on the page I had opened for you. Hope you can get some support there. How are you doing buddy? Like you, I'm in the very early stage. Early enough that it is had for me to not be in denial. But, far enough in to it so it is noticable. I understand your concern about where this might lead. The best that we can hope for is to have our current meds prolong the AD until a cure is found. All of the technical data indicates that should happen within the next 5 years. Until then I plan to set back and take it easy. Life is good!

Hey Tom

Thanks for adding the introduction for me.

The weekend was quiet and uneventful. I am in my "comfort zone" (work) as I write, so all is well. I think it has to do with the responsibilities associated with my job and the "caregiver mentality" I get into when I come to work that makes it a "good time" for me.

I didn't realize that finding a support group within my part of Georgia was going to be so tough, but outside of the Georgia chapter of THIS place (which I need to explore more fully) there is only the Senior Center in my county.

No new entries in my blog, but I thank you for posting the information about the new drug. I guess the way to beat an enemy is to get to know them, and I am gaining a wealth of information from this site and all of you, thanks!

Thanks also to all of you for keeping me in your thoughts.

Bill

As I get tired my ability to analyze is is diminished. Need to take a break. Night all!

I too have had a hard time getting to a 'live' caregiver support group even though it is less then 1 mile away from me. Working in Manhattan, the commute and being with my sweet wife is all I have time for. My time management skills are going to have to improve.

Did you guys see this article:

http://www.tampabay.com/news/aging/article879333.ece

Would love to hear your thoughts. I started a new post about this article to see if anyone here has heard about this.

Thanx Guy!

We will be looking to buy some coconut oil. My wife read the article and noticed that I would need to limit my sugar intake. There goes my quality of live!

Seriously, armed with Aricept, Namenda and Coconut Oil there are increased odds of surviving until a cure is found.

My wife and I went to the Health Food store this morning after our workout at the gym. Found two brands of Coconut Oil and bought a 16 oz jar of each. Both are extra virgin and both are organic. Each was about $12.50. We will get about 32 servings from each container. That is 39 cents per day and that is WORTH it!

Tom, did you notice that you need to start off with a little coconut oil and build up gradually? Otherwise, you're likely to get diarrhea.

JAB,

Thanx for bringing that to my attention. Whew! I'll start off with a half Tbs on my oatmeal in the moring for at least a week and move up to maybe a full Tsp. No more. Thanx again, you have saved me some embarrassment!

You people have got to be the best support group, anywhere!

Been taking coconut oil in my oatmeal for two mornings now with no bad side effects. I kept the serving to half a teaspoon and will remain there for the rest of this week.
Even before taking any coconut oil I have felt like some of the fog has lifted. Last (almost entire) month I was not doing so well. There was a lot of confusion, tierdness and the occational anger spell.

I ordered 2 16 oz containers from Swansonvitamins. I think they have the best prices of any I have seen. Can't wait to try it - especially eating out. I ALREADY bring in my own Balsamic Vinegar for my salads.

(I'm a bit eccentric that way, and it was a source of some embarrassment for the ex-SO.)

B

Went back into the toilet today! Only finished about 1/3 of the work I usually accomplish. Worked hard all day, just couldn't think straight or even have enough dexterity to pick my nose.

Tomorrow will be the next day of my life. Thank You God!

Man, did I sleep late light. About 14 hours interrupted by an occasional pee party and getting out of bed for coffee but falling asleep in my chair.

Started a blog tonight...

http://lifeandtimesoftt.blogspot.com/

Not sure why but it might be helpful.

I was ready to loose it last night so I went to bed. Just felt like I was alone in the world. That is sooo untrue! I have a very supportive wife and family. Where that feeling came is "from nowhere" and it is completely foriegn to me. Slept with a pile of bad dreams and leg cramps that would not quit. My right calf still hurt!

Seems like I have no coordination and little anaylitical skills today.

Tom T,

Getting enough potassium, Buddy?

Just checkin'

WB

Whisperin',

Thanx for checkin in and for your thought. I think that I'm getting enough potassium. I eat at least a bannana a day plus take a good multi vitamin. I think that is the Aricept giving me the leg cramps and weid dreams.

Last night I didn't have the intense leg cramps as the other night. Had weid dreams however. My right cavle still hurts from the night before!