This group is being established to provide moral support for persons effected by Early On-Set Alzheimer's related dementia. This thread will be the electronic means of conversation for support for those indivduals. The group belongs to the membership and is locally facilited by myself (Ttom) and Steve H. We physically meet monthly in the Harrisburg area but this will be our electronic contact resource. We are supported by the Alzheimer's Association of Greater PA but anybody can join in.

Tom,
Wow, this is great!

Good Luck with your support system.

Kudos to you, Steve and the Alz Assn of Greater PA!

Our kick-off meeting is scheduled for 6-11-09 at 7pm. I'm so excieted to be have this opportunity to give back! I should introduce myself....

Hello, my name is Tom and I have EROADe . That is Early On-Set Alzheimer’s Related Dementia with some literary license! This is a new acronym to the medical community but I think it fits. I’m just a regular person with short term memory problems & lost organizational skills. Please don’t treat me with kid gloves.

I live in Camp Hill, PA

Diagnosed at 58

60 years old in August

Married with a strong supporting community of family, friends and support groups.

I’m not a professional in this area, always refer to your Neurologist.

What I hope to accomplish here

- To support others that hat been effected by dementia early in life. Our new support group is called “Younger Journey”

- To spread the word that EOAD is not a death sentence. A cure is some bodies test tube right now. There are drugs that existing that can slow the progression so a cure might help us.

- To help others deal with the normal denial process.
- We should never allow somebody to tell us how to do some thing we are considered the expert in.
- Conversely, we need to accept what teams of medically educated people have determined to be the fact.

My vision

- A world where Dementia has been forgotten about!

My Journey

- Family history of depression

- TBI in June of 1982

- 30 days in a coma

- In Nov, 1982, was released using a walker and told I might never walk unassisted again.

- In Dec, 1982 I relocated to a rehab hospital on Florida

- Returned to work May of 1983 at my old job as an Engineer.

- Lost that Sr Engineering job in 2005 due to economic changes. I feel that my dementia started to show up in 1999 or a couple years earlier.

- Fired from 3 local jobs during the next year due to lack of ability to function (ability to concentrate).

My Testing History

- 2006 began evaluation at my wife’s request. We told the family doctor about getting lost in familiar surroundings, not being able to read more than a sentence without starting over, and confusion that I was experiencing.

- June of 2008 I was diagnosed with Alzheimer’s related dementia.

- After dx, immediately started on Aricept. 30 days later Namenda and a antidepressant was added.

- Seroquel (mood stabilizer) was added in March 2008.

- PET-CT scan completed on 5.19.09 with follow up EEG. That scan showed Frontotemporal dementia.
FTD, now I'm a flower delivery man! (As of June 19th the diagnosis was confirmed as EOAD not FTD)


Sharing

- Believe in your doctors and keep a positive attitude!

- Take the medications as prescribed

- Keep your mind and body active. Volunteer activities Gym, bicycle if your balance permits.

- There is a lot of live to live. Live life to the fullest..

- Welcome to my world of no re-runs and neoprene landing legs! Forgetfulness and meds can be dealt with.

- You are not alone! We have contact info.

- “Younger Journey” A Support Group that belongs to the members.

This message has been edited. Last edited by: Online Community Administrators,

Tom, I'm curious about your FTD diagnosis. I've seriously thought that part of having FTD is that it makes the patient a real major league jerk. That's why my neurologist has wondered aloud if I might have it, more than AD. You don't seem to be even a tiny bit jerky, so what's up with the diagnosis?

Tom

I live in VA, with my brother & sis n law. I am separated from my husband and going through a divorce. It's good to hear that you have successfully set up a support group in your home town. I am trying to do that very same thing, here, closer to home.

I'm not suppose to drive, but I do......but, only if I feel confident to do so. Otherwise, the family drives me around.

I'm curious to know how you went about setting up a support group in your area. I've written to the Alz Assoc in Chicago, IL but, I've not heard anything as of yet. I'm requesting that they mandate these meetings for those of us with EOAD! We need the fellowship and the support from each other!

I am now 50, was diagnosed with EOAD, 8/29/08. Thank the smart guy who came up with spellcheck for computers, I'd be in big trouble if it wasn't available.

I have noticed that I am repeating myself constantly. I think it's getting annoying to the family, but, I can't control it. I simply forget what I was saying.....

I too believe that we must have a positive attitude. But, at times, I admit it's difficult.
Soo, instead of crying "pity party", I try to dust off my britches and keep moving!

It's nice to hear some positive reflections. I'm not too keen on getting on a bicycle, as it is, I'm having difficulties going "up" stairs! Strange I know, not sure why, but it is what it is.

M

quote:

Originally posted by Alan in Colorado:
Tom, I'm curious about your FTD diagnosis. I've seriously thought that part of having FTD is that it makes the patient a real major league jerk. That's why my neurologist has wondered aloud if I might have it, more than AD. You don't seem to be even a tiny bit jerky, so what's up with the diagnosis?

Alan,
We have conversed for alost a year no in our group of 5 volunteers. None of us feel you are at all "jerky"! You are viewed by us all as one of the most intelligent and careing people in our group. As you are aware, all cases of AD (and that includes FTD) are different. Three of the typicical symptoms of FTD are: personality changes, inappropriate social behavior and languge deficits. One of the drugs that you and I are taking is Seroquel. You take 12x as much as I do and I can't function untill 11am. Man, You are doing wonderfull!

quote:

Originally posted by Advocation/Mary:
Tom

I live in VA, with my brother & sis n law. It's good to hear that you have successfully set up a support group in your home town. I am trying to do that very same thing, here, closer to home.

I'm curious to know how you went about setting up a support group in your area. I've written to the Alz Assoc in Chicago, IL but, I've not heard anything as of yet.
I am now 50, was diagnosed with EOAD, 8/29/08.
M

Hello Mary, my name is Tom and I want to WELCOME you to this board that is designed for people like you and I! I’m sorry to hear about your problems.

In June of 2008 I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you.

You need to start by speaking with your local Alzheimer's Association.
I will attach a link to a site that will lead you to your local Alzheimer’s Association
Chapter. Those people will be able to assist you with local resources and thoughts to improve your life:

http://www.alz.org/apps/findus.asp

Please call the 24/7 Helpline at
1-800-272-3900 if you have any pressing issues!

Please come on back to visit us soon!

Serenity Prayer
God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

Good morning! We had our 1st meeting last evening. I managed to take a few notes but was mostly at awe with the opportunity that the Alzheimer's Association is providing. Here are my notes and obsevations:

- Two Caregiving indivduals attended. I will reserve their names until they join in on this site. One Caregiver has an 88 year old grandfather with dementia. The other Caregiver has a 50 year old sister with EOAD.

- Dr David Gill from the Hershey Medical Center attended.

- The meeting was opened by Tiffani Chambers of the Greater PA Alzheimer's Association. She had arranged for Dr. Gill to attend, sent out 350 flyers to introuce this meeting, provided snacks and facilited the meeting. Tiff introduced me.

- I introduced myself and ratlled on per the above posted dated June 10th. It was my intention to condense it as much as possible to allow Dr. Gill as much time as he needed. I introduced my partner, Steve Hopkins.

- Steve explained his situation. He has a family history of AD including his Grand father and father and is concerned about the AD manifasting itself on him. He also mentioned how we met and got involved in the Support Group project. Steve has opened a web page for this group at youngerjourney.com

FYI- Steve and I met about two months before I realized that I would need his professional help. Steve is a financial advisor. After being dianognosed with Early On-Set Alzheimer's related Dementia I went to get a durable power of attorney for my wife. The lawyer suggested that we obtain a trusted finacial advisor to aid my wife with the investment options after I'm not capable. Enter Steve, God is good! Steve turned it over to Tiff who in turn introduced Dr. Gill.

- Dr Gill made a shirt introductory of himself and explaination of EOAD. He elected to open for questions. After about 45 minutes of answering questions my mouth began to drop open. I could not believe how dedicated that man is! He had just came from working all day, has a youg family, must have wanted to be with them but continued to answer questions with compassion and a wealth of knowlege.

-Meeting came to a close after an hour and a half. Everybody stayed, talked with each other and enjoyed a snack. Dr. Gill offered to attend one of the Younger Journey support group meetings at my request.

- Our next meeting is scheduled for July 20th in the Giant Community Center on Trindle Rd. in Camp Hill, PA at 2 pm. That time and even the place might change due to the results of a questinaire that was handed out prior to this meeting. I talked with one of the Caregivers who mentioned she could not attend during the day. This group is owned by the membership and we will look for a better time. Keep intouch. Tiffani will re-send announcements. My phone number is (7817) 737-9682.

Tom

Tom

In my opinion, what you have done is remarkable! I did contact the local Alz group here in VA., unfortunatly, it's a one man office, I was told times are "lean"

I am going to contact the "club house" where I live, to find out if a room is available for those afflicted can meet. Perhaps, I can get one of the gals at the Alz Org. in Richmond to attend, for questions and answers?

Wish me luck, I understand there are several individuals within my vicinity who are also carrying the "monster" within!

M

Alan, I also have FTD, which makes me a major league jerk but you can't tell it through my postings. But I guaratee you come visit me for a day or two and you will definitely know. I am at odds with my husband now because he is NEVER going to get how to treat me with dementia. I make a mistake and he questions me, simple stuff as that usually is enough spark to set me off. Then when I go off he yells at me and I told him I am tired of taking his yelling at me for doing something when I have an entirely good reason and then I asked him what was his? His is the anger at the disease, but he still yells at me so he will never get it.

Tracy

Ttom,

How do they know your symptoms are FTD and not from your prior TBI?

What did the PET-CT show that is specific to FTD?

Do the images show Picks bodies or scar tissue? Scar tissue could be from your TBI.

The prevalence of FTD in men could be tied to the greater opportunity for mTBI and PCS from sports.

I am just thinking out loud. I have a hard time thinking just in my head. The text helps me maintain continuity of thought.

As one with a long history of TBI and mTBI, the symptoms of FTD appear to have a strong overlap with TBI.

Over the last 40 years, I can see how my cognitive and memory abilities have deteriorated in steps, usually after a minor head or emotional trauma.

I have been on a serious stress avoidance focus for over 20 years. Stress appears to be a complicating factor.

The data about mTBI causing a four fold or worse increase in AD could be related to mTBI caused deterioration that overlaps AD deterioration.

Just wondering how these ideas might relate to your situation.

There was no positive determination of FTD. My
Neurologist told me that the PET scan showed abnormalities in my frontal and temporal lobes. From there I self diagnosed. One of the major reasons that my wife asked me to seek help in 2006 was a noticable change inj my personality. From my recent firings from jobs I can conclude that I can't follow directions very well. Also, I have recently had a difficult time reading. I only get half way through a sentence before needing to start over. I don't seem to be able to hold a thought in my head for more than a very short while. All of these injdicate
FTD or PPA which are closely related. TBI causes personality changes but remember, my TBI was in 1982. There were significant personality changes back then but I managed to iron them out with meds and theropy. Thirty years later the personality changes manifasted again but differently. Now I can't even keep a job paying 1/5th of what I used to earn! I conclude... FTD. Anybody else agree?



Typing seems to be my best way of communicating!

quote:

Originally posted by younghope1:
Alan, I also have FTD, which makes me a major league jerk but you can't tell it through my postings. But I guaratee you come visit me for a day or two and you will definitely know. I am at odds with my husband
Tracy

Tracy-
Bless our Caregivers! My wife and are spend a lot of time at odds also because of this disease. Luckily we make it but it is a major effort.

I'm convinced that we have it better than our spouses. I'm hurt when we are having the issue and for a few minutes after until my lack of shofrt term memory kicks in. But she is left with the normal cylce of hurt and seems to be abled to deal with it pretty well.

Sometimes I know when I'm espesially off the wall and I immediately ask her to be gentel with me for a while. That doesn't always work and sometimes it even starts an arguement. That is when I disappear into my "Man Cave" which is an area in the basement with a door at the entrance and has a sign on it with a picture of a lady in a circle with a line through her, "No WOMEN ALLOWED". There I emerse myself in a wood working project while listening to the radio until feeling better.

Hope your husband is as understanding as my wondderful wife and that you can find your "man cave"!

Ttom,

I am not convinced that you have AD or FTD. My TBI was in 1965. Big change in personality. I did quite well for most of the time since then except for occasional decompensations that manifest academically. Did mental math exercises to regain mental skills each time. Graduated high school with honors but had a major decomp in college so I did not finish.

Became self-employed in Silicon Valley/San Jose and was able to provide for my family in that expensive environment without my wife working.

I had two minor concussions, one in 1995 and one in 1999. Saw the doctor after the 1999 concussion and he was not concerned. My major symptom was whiplash. I had been slugged in the back of the head. My wife noticed a change in my personality. Everything went fine until 2001 when I had a very minor concussion. Everything changed, almost overnight. Had to stop driving. Almost no short term or immediate visual or auditory memory.

I decompensate now from the slightest stress, bump, or bad nights sleep. I just spent about 10 minutes trying to help my wife with a jig saw puzzle. Had to stop, was getting a headache. My escape from a decomp is to lie down in a dark room and put on my reboot music. It is like I have to reboot a computer that has crashed. I would never go near power tools or sharp objects when I have decomped. Already cut off one finger and put a nail into my hand.

Any stress and my cognitive skills plummet. My wife has started a support group for wives (spouses actually)of dementia patients since the spousal relationship caregiver is much different than the child or parent caregiver relationship. We have both lost fathers to AD/Dementia. Mine two years ago and her's 6 years ago. She gets very frustrated with me and my behaviors and dysfunctions.

I have retained most of my prior skills (over-learned skills) but cannot effectively learn new skills. Have trouble reading. It can exhaust me.

Maybe our wives need to e-mail each other for support. Let me know what you think.

But, see how much we have in common? My doc says to expect full AD or EOAD but no diagnosis yet.

I follow a brain injury forum but most participants want to have a pity party about "When am I going to get better?" The EOAD forum has a more realistic acceptance of their symptoms and deterioration.

Tom, thanks for calling me, it was really nice talking to you. My e-mail is listed at the bottom of my post, please send me your phone number.

Tracy

quote:

Originally posted by younghope1:
Tom, thanks for calling me, it was really nice talking to you. My e-mail is listed at the bottom of my post, please send me your phone number.

Tracy

I sent you my phone number Tracy. Please don't allow this contact to cause maritial problems. I know first hand how hard it is to find a person to actully talk with that knows the problems and questions you are experiencing. My wife is stressed out as well but understands! She knows I love her and the rest of the family but it stll hurts when I speak with other people with AD and just happen to be female.

[QUOTE]Originally posted by Mark in Idaho:
Ttom,

I am not convinced that you have AD or FTD. My TBI was in 1965. Big change in personality. I did quite well for most of the time since then except for occasional decompensations that manifest academically.

Became self-employed in Silicon Valley/San Jose and was able to provide for my family in that expensive environment without my wife working.

I had two minor concussions, one in 1995 and one in 1999. Saw the doctor after the 1999 concussion and he was not concerned. My major symptom was whiplash. I had been slugged in the back of the head. My wife noticed a change in my personality. Everything went fine until 2001 when I had a very minor concussion. Everything changed, almost overnight. Had to stop driving. Almost no short term or immediate visual or auditory memory.

I decompensate now from the slightest stress, bump, or bad nights sleep.

My escape from a decomp is to lie down in a dark room and put on my reboot music. It is like I have to reboot a computer that has crashed.

Any stress and my cognitive skills plummet. My wife has started a support group for wives (spouses actually)of dementia patients since the spousal relationship caregiver is much different than the child or parent caregiver relationship. We have both lost fathers to AD/Dementia. Mine two years ago and her's 6 years ago. She gets very frustrated with me and my behaviors and dysfunctions.

I have retained most of my prior skills (over-learned skills) but cannot effectively learn new skills. Have trouble reading. It can exhaust me.

Maybe our wives need to e-mail each other for support. Let me know what you think.

But, see how much we have in common? My doc says to expect full AD or EOAD but no diagnosis yet.

QUOTE]

Mark,

I've been lucky enough to not have another concussion since my 1982 experience. Yes, it seems that we have a lot in common and my email is t.tom.miner@comcast.net A support group for our spouses seems to be more important than even one for us patients. We have needs but we can upset our loved ones pretty badly also!

Ttom,

I count an illness as one of my concussions. During college, I got the flu and spiked a very high fever. It was 104.7 after an hour of cold wet towels. I was convulsing. I had to start dropping classes before they became a bad mark on my transcripts. Other decomps were from minor bumps that even my doctor said could not possibly be concussions. I just know how my cognitive abilities changed after each.

I see my doc on Wed. after two weeks of OT and ST. Will be interesting to hear her prognosis.

quote:

Originally posted by Mark in Idaho:
Ttom,

I count an illness as one of my concussions. During college, I got the flu and spiked a very high fever. It was 104.7 after an hour of cold wet towels. I was convulsing.

I see my doc on Wed. after two weeks of OT and ST. Will be interesting to hear her prognosis.

Yep, 104.7 qualifies as a TBI! I'll be seeing a new doctor this Wed. also. This time I will be seeing one at Johns Hopkins. Hope they can give some answers. Good luck to you bud!

Dear Mark,
I had a fever of 103 for 3 days with no respiratory or flu symptoms or rash in 1986. All my cognitive problems started after that. Coincidence or causation? Who knows?

Iris L.

Iris,

I would not be surprised if there is a link.

I read recently that researchers have discovered that immune responses that go haywire can sometimes break through the blood brain barrier. The researchers think this may be a causation for Autism, M.S. and other neurological conditions.

Maybe someday there will be an understanding of these blood brain barrier failures that can be used to help people..

Hi,
My name is Lisa. I'm 55 years old dx @ 53 with EOAD. I am, also, a caregiver to my Mom, 78, with AD.
Tom, I just wanted to get on this wonderful younger journey Support group board an say "HI" to everyone.

Tom, thanks for all your hard work.

I hope more people will join us on this board so we can support each other on this journey!

After a four hour evaluation at Johns Hopkins they confirmed my hometown Neurologist diagnosis of EOAD. They used all of my old scans but did their own personal evaluations.

Prior to this second opinion I was not comfortable telling others that I had AD. The majority of my days are spent in a normal frame of mind. I fel like a liar when I told people that I had AD even though I know that there are many days that are not good at all. I wanted to push it all off as "Old Timers".

Now that I have four doctors in the Harrisburg area plus the Johns Hopkins Mem,ory & Alzheimer's Center telling me that You have it. I'll yield. Take my meds and smile . After a 30 year career it might be time to accept some time to reflect anyway!

I am 56 and I am debating on whether or not to be tested.
I just read "Still Alice" and am beginning to be a convert to the idea that early medication can keep you in early symptom stages longer, even though the disease still progresses.
My question is: when to test? From what I've read, if you can still pass the mini mental tests you are just monitored every 6 mo or so until you get bad enough to be diagnosed and won't be given the meds anyway until then. Is the potential delay of more serious symptoms worth the anxiety that family, friends and I, (as a result of their changed views), will feel?
My mother showed symptoms as early as age 66 and is still living at 82, but we only recognized it that soon because my grandmother was diagnosed at 82 and we were watching for symptoms. (My grandmother went downhill rapidly and died withing 3 yrs.) I'm thinking that both may have had it earlier and just hidden it well, and I'm sure I could "hide" for a number of years yet (except for the increasing complexity of computers and pins :>
My mind still works well but at times I feel like it works at the speed of molasses and I substitute incorrect words too often if I'm not actually concentrating on each word. Am I likely to be early onset or do some symptoms such as mine just start this early for all Alzheimers? I posted this in the "I have Alzheimers" thread but think this is where I should have posted to reach people my age who may be able to help me sort it out. Sorry for the duplication.

quote:

Originally posted by AllieR:
I am 56 and I am debating on whether or not to be tested....

beginning to be a convert to the idea that early medication can keep you in early symptom stages longer, even though the disease still progresses...


My question is: when to test?....


My mind still works well but at times I feel like it works at the speed of molasses and I substitute incorrect words too often if I'm not actually concentrating on each word.

Hello AllieR, my name is Tom and I want to WELCOME you to this board that is designed for people like you and I! I’m sorry to hear about your problems. Early On-Set can be terrible if not caught early. It is never too eraly to start testing if you or your loved ones feel there is a significant change.

My story,
I’m not a professional in this area. I’m a person with AD that serves as a volunteer on the message board. In June of 2008 (age 58) I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you. At this stage in the AD game it is possible to begin on the meds, like I have and possibly never notice a funtionally problem I was in complete denial until my GP in Harrisburg asked me to go for a second opinion by a Neurologist at Johns Hopkins. That doctor quickly confirmed what my hometown GP, Neurologist, Phycologist and Phyciatist had already diagnosed. That is when I allowed myself to yeild!

Allie, the drugs can slow the progression down so a cure might be found before and serious problems arise. My wife pushed me to seek professional help when she noticed changes in my personality. Thank God for her! I have read stories of people about like me that have faded into the heavens already because they didn't take the time to get tested.

I will attach a link to a site that will lead you to your local Alzheimer’s Association
Chapter. Those people will be able to assist you with local resources and thoughts to improve your life:

http://www.alz.org/apps/findus.asp

Please call the 24/7 Helpline at
1-800-272-3900 if you have any pressing issues!

The Alzheimer’s library
http://alzheimers.boomja.com/C...rst-Steps-61311.html

I hope this information helps you to resolve your issues. Best of luck to you. Please come on back to visit us soon!

Serenity Prayer
God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

AllieR,

I am a bit confused by your post.
maybe it has to do with the formatting.

Many of us on this forum do much better with an abundant over use of double carriage returns. This creates a double space between lines.

From what I can understand, I would suggest getting tested. You appear to think that you would pass a Mini-Mental State Exam. Let the tester be the one to answer that question.

Seek a doctor who has experience with AD and other dementias.

Start a journal and list your struggles and other episodes. Have those around you contribute from time to time.

Some doctors will try a med to see if it causes a change. Sort of a reverse diagnosis.

I am confused by
< Is the potential delay of more serious symptoms worth the anxiety that family, friends and I, (as a result of their changed views), will feel? >

What do you mean?

Are you suggesting that a AD diagnosis will cause anxiety? It appears you already have anxiety about a potential diagnosis of AD. A diagnosis might ease you mind from the wondering/worry of " What is wrong?"

When you have knowledge, you have an opportunity to act on that information. Otherwise, you are living in confusion and anxiety.

Having someone confirm my symptoms was a relief. It helped me realize that I am not making this up (hypochondriac)or imagining it (delusions). Whether that confirmation of symptoms results in a diagnosis of AD is not as important.

Treatment is for the symptoms, not the diagnosis.

Tom and Mark,
Thanks for your responses and for the formmating tip. I will check out more on the Alzheimers site Tom listed.

I guess I should be clearer on what I still have questions about though.

1. Do my warning signs indicate early onset or do all types of alzheimers show some early indications?

2. Can some members of a family be early onset and others start at a later age?

3. Can I have a genetic test for Apo- E without a diagnosis first? (I know it isn't a definitive diagnosis if negative but a positive would push me to do the full neuro testing)

The gist of the matter is that I'm afraid I would get the "lets monitor you for a while" plan and have my family, who are going though some tough times now, worried about this on top of everything else.

Basically, is there a way to fast tract the diagnostic process and keep it confidential at least until I have a diagnosis?

I really appreciate your feedback- I still cry too much to try to talk on the Alzheimer's phone lines so it's great to be able to use this message board.

If you think there is a different section I should be posting to for these types of questions, please let me know.

Thanks for your help and responses

Allie, I'll give you my views, if you promise to keep getting other opinions?

1. Most types of dementia look similar in the beginning. It's often the case that the only way to know exactly which dementia we have is, to wait for it to get worse, at which point it's more diagnostically clear. Your warning signs have only one clear message, which is to get yourself checked out.

2. Yes.

3. You can get a genetic screening anytime. Your genes are usually the same, cradle to grave.

A possible first step for you is to see your primary care physician, explain your fears, and ask for appropriate bloodwork to be done. With the blood tests, most of the common, treatable causes of your problems can be discovered or ruled out. Generally speaking, the best way to detect early dementia is through an experienced professional giving you the appropriate neuropsychological tests. It's common that diagnostic imaging can't detect the early stage of our diseases. The brain scans are really to rule out any other things, like tumors or pressure problems.

Allie, you're not responsible for the timing. However, I do believe you are responsible for being a compassionate caretaker of your own health. You have some problems that are worth a closer look.

And remember, any treatment we have is only able to slow down your progression. When would you rather have your stage prolonged, now - or later, after you potentially would have more symptoms?

More questions?

Hi everyone.Just wanted to say for Father's Day I gave Harvey (my hubby) two books with pictures where you have to find the differences between two picturws. The pictures are colorful and only two pictures on a page. Really large and all different scenes. He loves them. He circles the differences and then I try also. Really uses the brain. He reads everything but can lose interest. So far this has worked great. I got them at Borders . Hope this gives everyone an idea. Sheryl

Allie,

Hello and Welcome to the AD Message Boards Early Journey Online Support Group.

FYI: I am 55 diagnosed @ 53 with EOAD. My Mom, 78, has AD not EOAD. So, to answer your question, yes, people in the same families can have different forms/types of AD/dementias.

Advice, well, if it was me, I wouldn't wait. The sooner you find out what is going on, the sooner you can start treatment regardless of what the problem is. The sooner your treat symptoms the better the results.

Good Luck. Please, come back and let us know how you are doing.

Dear Twinie, I love those "can you spot the difference" picture puzzles. I do at least one a night, and I'm usually faster than the alloted time. Can your husband use the computer? We would love to hear from him.

Iris L.

Twinie & Iris, are you talking about the "Where's Waldo" style? I used to take a couple of seconds to find Waldo, but now I give up in frustration. It's some neurological problem, I'm told.

I do a puzzle called Numbrix. Marilyn Vos Savant came up with the idea as an alternative to Sudoku.

I cannot do Sudoku because I cannot do the mental calculations. 10 years ago, I would have become bored doing Sudoku. My metal math skills were highly developed.

Losing my mental math abilities was one of my first noticeable symptoms.I do well with the Numbrix puzzles.

You can find them at
http://www.parade.com/askmaril...umbrix-20090617.html

Alan & Lisa,
I guess at this point I will at least go in for base testing so they have a comparison point for any decline. As you say, better to catch it as early as possible and plateau in that stage as long as it can be done.
Thanks again.

AllieR,

Good for you! It's a wise decision. Please, make sure they do the neuropsychological testing. That's usually the key.

Good Luck.

Please, keep us posted!!

[QUOTE]Originally posted by AllieR:

I guess at this point I will at least go in for base testing ...

As you say, better to catch it as early as possible and plateau in that stage as long as it can be done.
QUOTE]

Hey! You go girl! Get the testing done (it took me about 2 years) and stop the progression ASAP!

Hi Allie,

Please let us know how your doctor's appointment went.

I find myself browsing through some of the comments, And I have to say how courageous this group is. I am age 53, and I already have a history of seeing lots of doctors. I was diagnosed with Lupus in 1990. For those of you who are not familiar with Lupus, it is an auto immune disease, where your own antibodies attack themselves. Years ago, doctors said that it was all in my head. Now you may ask, what does this have to do with Alzheimer's, my point is if I go to the doctor and tell him I think I may have Alz, he will tell me it is all in my head, again. Only this time he will be right?! Just a little humor, I guess. I don't know where to begin. It all started when my husband became angry when I couldn't remember something that happened a while back. He said, QUOTE]"you are too young to be forgetful, what's wrong with you?" So here I am. I find myself in social situations where I can't think of anything to say, but then I get home, and can think of plenty to say! I welcome any and all comments.

Dear Not an Angel,
Welcome to these message boards. I've been suffering from memory loss since 1987 along with lupus, diagnosed in 1993. Memory loss and cognitive dysfunction are indeed major symptoms of systemic lupus. The memory loss may be associated with elevated levels of antiphospholipid antibodies. Ask your rheumatologist to check you.

There are a few people on this site with major memory problems and lupus. It is best to consult a neurologist and get a full evaluation, consisting of MRI, blood tests, and neurocognitive testing. Then you will know.

Please read through these message boards and the main website so you can learn more about memory loss. Keep yourself as healthy as possible and control your blood pressure. Let us know more about your progress.

Iris L.

Dear No an Angel,

Welcome. You are not alone. I'm sorry for what brings you here but I'm very glad you've found us.

If you go to the doctor and he/she says it's all in your head say yes, I know that's why I'm here. My brain isn't functioning right! If he/she doesn't take you seriously, find a new doctor. As Iris said, you need to see a neurologist who specializes in AD/Dementias!

Please, come back and let us know how you are doing.

P.S. I'm no angel either! lol.

not an angel,

[/QUOTE]It all started when my husband became angry when I couldn't remember something that happened a while back. He said, QUOTE]"you are too young to be forgetful, what's wrong with you?" So here I am. I find myself in social situations where I can't think of anything to say, but then I get home, and can think of plenty to say! I welcome any and all comments.[/QUOTE]

Your husband need to understand that memory problems do not discriminate based on age.

Regarding the social situations, I have the same problems. I can do fine with just one or two. When it become a group with multiple voices talking at the same time, I get overloaded and retreat.

When everything settles down , like when we get home, my brain kicks back into gear and I have things to say. I think it is just a situation where the brain gets overwhelmed by the excessive (for us) stimulation.

Sometimes, I will put in my foam ear plugs. They can help me focus on just one conversation sometimes.

You might ask your husband what you were wearing the other day. Guys have selective memory. They only remember the things that are of importance to them. My wife will have to almost retell the event before I can recall it. My worst problem is remembering chronological order. I might remember something happened, but have no idea whether it was this week or last year.

Dear Not an Angel.

Two of the three types (ANS & CNS) of Lupes cause problems with confusion and concentration. About half of the patients report memory problems. These symptoms are closely related to Alzheimer's but not the same. My investigation indicates that there are two tests might help analyze this situation. They are an EEG and spinal tap. Please talk with your Nuerologist. I'm not a doctor and can't guess what could be done but those tests might show root to the problems you describe.

My story,
I’m not a professional in this area. I’m a person with AD that serves as a volunteer on the message board. In June of 2008 (age 58) I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you. Some one is always hear to listen to you.


Best of luck to you. Please come on back to visit us soon!

Serenity Prayer
God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

quote:

Originally posted by not an angel:
I find myself browsing through some of the comments, And I have to say how courageous this group is. I am age 53...

I was diagnosed with Lupus in 1990...

Now you may ask, what does this have to do with Alzheimer's...

I welcome any and all comments.

ttt

quote:

Originally posted by Ttom:
Dear Not an Angel.

Two of the three types (ANS & CNS) of Lupes cause problems with confusion and concentration. About half of the patients report memory problems. These symptoms are closely related to Alzheimer's but not the same. My investigation indicates that there are two tests might help analyze this situation. They are an EEG and spinal tap. Please talk with your Nuerologist. I'm not a doctor and can't guess what could be done but those tests might show root to the problems you describe.

My story,
I’m not a professional in this area. I’m a person with AD that serves as a volunteer on the message board. In June of 2008 (age 58) I was diagnosed with Alzheimer’s related dementia. I began visiting this message board in August 2008 and the people have become important to me. I’m sure that you will find a number of supporters here for you. Some one is always hear to listen to you.


Best of luck to you. Please come on back to visit us soon!

Serenity Prayer
God grant me the serenity to accept the things I cannot change;
courage to change the things I can; and wisdom to know the difference.

quote:

Originally posted by not an angel:
I find myself browsing through some of the comments, And I have to say how courageous this group is. I am age 53...

I was diagnosed with Lupus in 1990...

Now you may ask, what does this have to do with Alzheimer's...

I welcome any and all comments.

Hi, TTom;
Thank you so much for your comments regarding my email. I have heard this before, and it has always been at the back of my mind. Now, with your push, I plan to see my Rheumatolist first.
I know she will be supportive. I am not sure what ANS is?
Thank you again for you reply. It was a pleasant surprise.
Not an angel

Quote by FDR

There is nothing to fear but fear itself. Franklin D Roosevelt.

This is an interesting quote. Unfortunately, it is given significance but in hindsight was meaningless.

FDR gave this quote during his inaugural address in 1933. He was claiming that the Great Depression that had start a few years earlier, was being continued by the fear in the minds of the American people.

His many 'recovery' programs did little to help with recovery and more to extend the depression. Although the recovery programs might have lessened the some of the American peoples fear, the depression continued until the US entered into W.W.II in 1941.

I believe it would have been better if he had said something like, "The only thing we have to fear is our own inaction and dependency on government."

This is true of the AD community. The government will never catch up with the needs of the AD community. Only our own actions and refusal to depend on government will help.


But I digress onto a soap box.

"The government will never catch up with the needs of the AD community. Only our own actions and refusal to depend on government will help."

Dear Mark,
Regarding a refusal to depend on government, can you tell me your thinking on how the needs of the dementia patients and families will be met? Do you think our needs can be met by the private sector solely without the government? Or do you think there will need to be some combination of private/government collaboration?

Iris L.

Hey,

We need ALL the help we can get!!

quote:

There is nothing to fear but fear itself. Franklin D Roosevelt.

not an angel, I think it's a great tag-line! Although I must confess, there are moments of fear when I think about my next few years.

I am not saying the government cannot help the AD community. I am saying that it is a bad bet to expect and depend on the government to come through to meet our needs.

Yes, we need all the help we can get.

I am concerned with the kind of 'help' government will provide. Even though the government spends 'our' tax moneys, when they do they put 'their' conditions on it.

If you think the federal government will fix General Motors, then go ahead and depend on the Fed to fill the needs of the AD community.

I could see the government creating a home care and hospice system that is union based. Think of what a unionized home care or hospice worker will say when she/he gets fed up with the struggles of caring for end stage AD patients.

Hospice workers are some of the most valuable caregivers there are. When they start answering to a union, all bets are off.

So, no, I do not have a magic answer for our future. I just will not put my bet on government to make things better.