Flowers,

There is an actual Senator and Congressman contact protocol and office that allows the Senator etc to contact Social Security. It is a bare minimum process that allows the Senator to appear to have tried to help the constituent. It just provides for a "second look" at the application. The Senator cannot influence the decision making process.

Maybe in your case, the second look was just what was needed.

The Compassionate Allowance process is being tweaked to help those in critical need get approved more quickly. It appears that they are only looking at the extremely critical and terminal diseases so far. We need to push for getting the list of conditions expanded, or at least expanding the effort to understand the neurological conditions at the DDS level. It appears the the DDS offices are ill informed about the limits neurological conditions have on ability to work. Just because we "appear" to be functional, they try to deny our application.

As has been the story of our lives, we are the "invisible wounded."

I don't understand why so many people have so much trouble getting Social Security disability. My husband and I both are disabled and was approved the first time. My husband has heart failure. I have EOAD, I was also sent to S.S. Doctor for hours of testing and did terrible. I tried as hard as I could. The wake up call is to sit and read the first and second oponions. I think is that really me, I want to be the person I used to be & then realize that is not going to happen.

Sharon

Flowers, Mark and Sharon

I was denied SSI benefits, but was told my claim would automatically go for disability. I have a neuropsyche test this week (Thurs), also, I'm suppose to receive the outcome(?)sorry not sure if this is the correct word to use) the same day. Once the neuropsychologist writes up the report (he has "assured" me it would be completed by that weekend), it would be forwarded to my physician(s) and to disability division? We'll see.

I have emailed my state senator(s) regarding the waiting period and how absurd it is when those afflicted (especially) with EOAD can not physically seek employment due to a medical disease that is not mental After writing/email twice, I received a phone call from J. Rockefeller's assistant in addition to a follow-up letter that if I have not heard anything regarding disability of me finalizing all necessary tests within a TWO WEEK PERIOD, to call his office (I was given a direct line with extension) and he would place the call to have it processed!

Now, that could be him pacifying me, but, I really don't think so. When I spoke with him on the phone, he too, didn't realize the waiting period could be soo long.

Personally, I think it's absurd that SS looks at both spouses income---if I had been trying for worker's comp, they/SS surely wouldn't have looked at both of our salaries to figure what monthly compensation should/would be! I guess one GOOD point, they/SS looks at my ex husbands income as well, not sure why but, if it hits him a little harder, all the better!

What do you think?

Mary,

I did learn one thing about social security disability. I applied and then they sent it to the state of Texas where I live & they sent me to their Dr. for more tests. The state then decided I was disabiled and I received my social security disability. I wonder if it's the person handing the cases, if that's the case that's wrong. I don't know if that's correct, just a thought. Either way this two year waiting for Medicare is terrible and shows they don't reconize how hard it is on someone with this disease. I also wonder if any of the people making these decision would like to be in our shoes?

Sharon

Sharon

Wow--I had to read what we were talking about, it's a wonder it can be understood. I'm not sure if I will also have to visit with a state physician or not? I do know that I carry all copies of medical tests reports with me. Blood works showing at normal range, geneology report states that I carry the APOE 3-4 alloe genes also, the MRI with/without imnaging stating that there is above normal shrinkage in the brain more so than that of normal aging, much like dementia/alzheimer's brain. Deep white matter(?), etc.

One area I had to combat with my insurance carrier: one department stated it was a mental disease while the other department stated it is a medical disease. According to my PCP and neurologist Alzheimer's/dementia is a medical disease! Now if I can get the neurologist to put that in writing....I guess I'll know more after the psyche test this week!

All Social Security Disability applications are processed by the individual's state Disability Determinations Service (DDS). This is a federally mandated process. The psychologists are usually of the "lowest bid" caliber. Mine said I have a serious neurological disability with little hope of recovery but the "invisible medical board" at DDS did not approve me. They claim that there are jobs in the national economy that I could perform. I finally have my SSDI hearing next week, over two years since the disapproval by DDS. It will be three years in May since I started the process. I am told that is the normal time if you are not approved in the first round.

Regarding the two year wait for MediCare. I have had to travel from Idaho to California for my routine medical care because I could not get health insurance in Idaho due to my pre-existing condition. It is costing me five to six thousand dollars a year for my health care until I get Medi-Care. I am fortunate I have family who still live in California so I can keep my California health plan. Here in Idaho, it would cost me more for a huge deductible with lousy coverage after that if I enrolled in the HIPAA high risk plan.

We need to be in contact with our Members of Congress to push for more Compassionate Allowances. They are being established to speed up the process for some of us.

There are some programs where you can get your application sped up if you are at risk of homelessness or other critical issues. I think the SSI application may be used to quickly determine those who need this speedier process.

The SSI mentioned by Mary is the first step in the SSDI process. It is an automatic application that acts as a safety net for those in dire financial needs. It has little to do with the SSDI disability approval process and more to do with financial need.

When you have your psych tests, actually they are called a Neuro-psychological Assessment, do not offer too much information to the psych. Mine used some of my information against me. I had been tested by a local doctor (MD)who the psych says is a crack. Mentioning his name and showing his report to the psych opened up a can of worms.

You will most likely have an abbreviated neuro-psych test. The full test costs too much. Put in a good effort because they have a way to read the tests and notice when you are faking. If you struggle when you try hard, then try harder and struggle more. Stress is a natural magnifier of neurological symptoms. If the test is early in the day, get up even earlier than normal. AD is most evident during the sunset (second half of the day)so make the time of your appointment six hour or more after waking up. Do not take a nap before hand. Mine was early so it went a bit better than it would have later in the day.

Hope it goes well for you on Thursday.

I get my big chance on March 20th.

Regarding looking at a spouse's and past spouse's income, there is a formula that allows for you to qualify for a bit more SSDI if your spouse has paid in more to Social Security than you have under some circumstances. It never decreases your benefit, it only increases it.

At least that is what the SS Regulations appear to say. But I am brain damaged so don't take it to the bank until the check comes.

I lost a great opportunity to say hello at the Pubic Policy Forum in Washington DC to a few of the folks here online. I was sad to hear Tracy's husband tell her story about Tracy being diagnosed in her thirties and now gone. The candle light vigil was for all of us who have and will suffer great loss and a sad reminder, no known survivors. The messages to Congress about disability issues and for more money for research were important. .
On Capitol Hill I was able to meet face to face with both Senators from my home state of Wisconsin. Senator Feingold was very receptive. Marie Shriver spoke to Senator Kohl’s group on aging and I learned more about the report being deliver to the Senate Panel.
I hope to meet more online folks at next year’s forum.

Man, they started me on Serequel and I can't hardly stay awake! Anyubody have the same touble? What do ya do to correct it? I have already called th Helpline and they asked me to call m,y doctor. I was hopeing to handle this problem without calling him.

Darryl-W, I don't understand. Did something happen to Tracy?

Iris L.

Iris, I was startled by his phrasing, too! Thankfully, Tracy is alive and well, looking forward to that camp she started.

Tom, Seroquel is less sedating with time. One idea for you, is to take it earlier in the day. Like, two hours before you normally do. See if the sedation decreases while you're asleep, y'know? Play with it, see what works best.

Dear Darryl,
The Tracy that he was speaking about at the candlelight vigil was not Tracy (Younghope1).

I hope that clarifies things.

Hope to meet you next year in D.C.!!

It took me a while to re-log in. Can't read my password right--6 times. And I've forgotten what I was agoing to say.

Oh. The govt pays for the Neuropsychological (NP) testing, but it's a shorter one (like 2-3 hours). The doc in our area is a good one, but I opted to go though a paychologist I know is very good. I used my health ins (COBRA) and paid the remainder.

She was VERY thorough (6 hours). She did an excellent job with her report. She strongly suggested I get SSDI.

Her evaluation did not help with SSDI, but it has become a good "baseline". I've had several NP tests in the meantime. The second said definitely disabled. The third was done in a hospital setting (seizure study). She found no problems except for one "anomaly". I have no disability. Her report had many misspellings, and grammatical and interpretation errors. I keep that report private.

If I had gone to the govt-paid-for doc, it probably would have not have been ignored by the SSA. But I would also have had a less-extensive test.

I hear the doc the govt pays here is very good but feels his hands are tied by the govt as far as what he can do.

Good luck to anyone facing this. It's a difficult situation.

Sue (Flowers2U)

Did your NeuriPsych fill out the SSDI form HA-1152-U3 Mental Work Related Activities?

It has the questions that SSDI wants answered.

It can be found on-line at:
http://www1.dshs.wa.gov/pdf/ms/ccs/RFQ0735-257G.pdf

SSDI does not accept a private doctors diagnosis of disability. They do respond to that doctors comments on their forms regarding Work Related Activities. These just list and grade symptoms. They leave the decision making to the SSDI people.

During my hearing last month, their psychologist expert went down the list on form http://www1.dshs.wa.gov/pdf/ms/ccs/RFQ0735-257G.pdf and graded my symptoms. There were enough Moderate and Marked classifications that the final determination was Disabled.

One thing that SSDI does not like is any possibility of doctor shopping. This is when a patient keeps looking until he finds a doctor who gives him the diagnosis he is looking for.

They consider any determination of disability by a private doctor as possible doctor shopping. The objective classification of symptoms is more acceptable. It leaves the SSDI people with the last word.

The less extensive test is not necessarily a bad thing. Many of the Neuro-psych tests are designed to determine causation. SSDI is only interested in condition, not causation. The SSDI psych knows how to test for the condition without doing causation tests.

My neuro-psych tests were five hours each. The SSDI test was only one hour. He diagnosed disabled but the State Disability Determination Service still denied me because they thought there were some jobs I could do. They did not consider that SSDI rules provide that workers over 50 years old are considered to not be retrainable. My attorney said this is a common occurrence. Maybe your private Neuro-psych needs to add a comment about your age and possibility of retraining or rehabilitation.

Dear Lisa 428,

Thanks for your clarification posted on 4.07.09. I apologize for the confusion regarding my failure to provide more than the first name mentioned by the grieving husband at the candle light vigil in Washington DC. The stories told by all the caregivers sharing their loss at the memorial were all very moving and a touching memorial to all our loved ones.

Peace, love, & hope
Darryl

HI guys. Im new at this. can someone tell me how to get srarted with ss or if I even can. I can no longer work but have been told my husband makes too much.

Laura, I'll bet you're asking about Social Security Disability Insurance, SSDI? With that, it doesn't matter what assets your family has, because it's an insurance benefit and isn't need-based.

I suggest you Google something like "SSDI application help" and learn what Allsup, Binder & Binder, and other companies have to say. I'm using Allsup, and no problems with their service so far.

Hello, Laura, Welcome to these message boards. I have lupus with a cognitive deficit. I've been on long term disability from my profession as a pediatrician for over 20 years because of sudden memory loss and other problems. I'm not on any memory drugs. I've also been diagnosed as having depression.

The crux of getting SSDI is the doctor's determination that your condition is terminal or expected to last at least 6 mos (or 12 months--I think the time might have been changed since my application 20 years ago). Has your doctor given you a diagnosis? You will need to submit your medical reports. Have you stopped working already? If you tell us about your story, you will get more detailed responses.

The people on this board are compassionate and helpful and encouraging. Don't be afraid; you're among friends.

Iris L.

ok here goes. I went to school for 2 years at Bel-Rea ( vet tech school) couldnt finish got a job, got fired cause i couldnt remember how to do the simplest test 5 min after they showed me. saw a nuero doc and 6 mos later was dx with early onst ( ages between 30 - 50 ) Alzheimers.tried to get soc sec was told my hubby makes too much. Have 2 yrs school loans to pay off.(hubby worked 2 jobs so I could go to school)
hope this is helpful tired and cant think well tonight will be on chat room tomorrow 7pm mountain time hope to see ya there will try to be every night Laura

Laura,

I have talked with you in other locations on this board. I went back to this virual support group that I opened a while ago and read your post about social security.

You have a good case for SSDI even though SSA is out of the question.

I just came home from an evaluation by the doctors at Johns Hopkins Memory and Alzheimer's clinc in Baltimore.

They confirmed what my doctors in Harrisburg had diagnosed and wanted to tell them that they had done a good job. Seems I have EOAD. There had been some dicussion in Harrisburg about abnormalities in my fronto and temporal lobes but FTD had never been diagnosed. There is problems in all three of those areas but also deep in my brain is an area of inactivity.

Tom, I'm glad you got the diagnosis, but so sad it's what it is. How do you feel right now? (Do you have something you could throw?) Do you have anyone you could talk with in person? All I can say is that I'm very sorry.

Iris, do you have any lab indicators of NPSLE? What are they? My doc thought I would, but I don't. I"m hoping today's PET scan will help put everything together.

I think the SSA determination of hospice care is the one that's governed by the "6 months of life" rule. At least that's what I seem to remember. (But who trusts my memory anymore? I don't. )

Mark, no doctor's diagnosis will go anywhere with the SSA. All that will help is the description of symptoms and opinion. A neuropsychological exam only provides descriptions and opinions. It cannot tell what caused them or give a diagnosis.

The SSA does not care if you have a NP exam with their doc or someone else. "Their" doc is usually a local psychologist who is contracted with the SSA to do some evals.

I decided to go private because it would be a more thorough evaluation. My insurance and I paid for it (through the nose). This eval is still being used by my neuro and psychiatrist for helping to determine my present care.

The SSA also does not care about "doctor-shopping". How would they even know it was happening? I got opinions from all my docs, and I only turned in the ones I felt supported my case. That's pretty typical and acceptable. The more evaluations and opinions, the better.

Just because a person is over 50 does not mean they are unretrainable. The SSA figures, all things equal, that the person 50 or above will have a harder time being retrained than a younger person, hence has a better chance of getting SSDI.

I got my SSDI determination several years back (I don't remember how many...). As typical, I was denied upon application and denied upon appeal. I was awarded SSDI by the administrative law judge. Allsup did a good job in writing my case up, so I didn't even have to attend.

And finally, I had a PET scan today. I've had MRI, CT, and SPECT scans before. Nothing showed in any of them.

My exam by the neurologist/psychiatrist showed some real deficits. We're hoping to get a clue from the PET.

Here's a topic for conversation: the PET scan uses antimatter. (positrons--the opposites of electrons). I not only saw it on the History Channel, but I looked it up on the internet. I wondered what it would feel like, but it didn't feel any different . Besides, I slept through the pre-scan and the scan itself.

Here's a link: http://en.wikipedia.org/wiki/Positron or just google "positron".

Dear Ttom,
I'm happy/sad about your news!

How are you?


I think maybe you wanted to post this on your new support site?? Huh?

Sue,

I was told about the doctor shopping by two sources. The claims person at SSA/DDS and a SSDI attorney. The primary issue they have is diagnosis from a shopped doc. The term shopped doc differentiates from a health plan doc. My health plan would not do the testing. The doctor I paid for testing and diagnostics was not part of my health plan so they consider him a shopped doc. They will consider data from the applicant's doctor if he is part of the applicant's normal health care program.

The concept is simple. If the applicant's health plan does not concur with the need for the assessment, the data or the diagnosis, then neither does the SSA.

I had a neuro-psych assessment that was considered out of date. I had a later neurological assessment including QEEG/VEP/AEP. Since I paid for the neurological assessment/QEEG etc and it was not done within my health plan, they discounted it. They considered it doctor shopping.

At my ALJ hearing, I had three reports. the first (old) neuro-psych assessment from 2002, a mini-assessment by the SSA doc in 2006, and a recent Neuro-psych assessment done by my health plan in 2007. Since they all had similar reports, the psychologist hired by SSA for the hearing concurred with them and suggested approval.

The issue about a person being over fifty being considered not retrainable is written into the SSDI codes. The DDS people tend to ignore it as do most appeals reviewers, especially for an unrepresented applicant.

The fact that you did not even have to attend your hearing sounds par for the course. It appears that the unrepresented applicant is almost always denied (unless he is in a wheelchair eating from a tube). The system appears to be built around the SSDI attorneys' need to earn their fees.

Regarding PET. Positron Emission Tomography, sometimes specified as FDG-PET (Fluoro Dioxy Glucose Positron Emission Tomography is very similar to SPECT (Single Photon Emmission Computed Tomography). The equipment and radio-nuclides used may be a bit different but the overall principle is the same.

FDG is a radio-activated glucose isotope that releases minute radioactive emissions (gama ray photons) when it is metabolized. The system tracks where the radiation is coming from and the amount of radiation. This indicated the amount of glucose being metabolized which is directly related to the level of brain activity. Other contrast compounds may be used to identify cancer tumors, etc. SPECT just uses a broader spectrum of radionuclide that releases a broader range of photons.

I has a FDG-SPECT. Scared the tech half to death when I passed out when she injected the isotope. She had a difficult time arousing me and was about to call a code when I finally came to.

There is a new imaging technique that hold promise for early detection of AD plaques. Check it out at:

http://www.news-medical.net/ne...s-in-Alzheimers.aspx

Mark, Maybe part of the difference in our experiences is that it sounds like you belonged to a health group, and I didn't. I could see any doc I wanted without restraints. So that wasn't an issue with the SSA.

I had long-term disability insurance paying me. Since they don't have to pay the portion of my monthly payment that would be covered by SSDI, they wanted me to get it asap. So they called in Allsup at no cost to me. Allsup walked me through the entire process.

I did have the option of having a good local doc give me a 1-hr SSA NP exam. He is a good doc, but I opted for a neuropsychologist who had extraordinary credentials. She was highly recommended. She spent about 6 hours working with me. Her report was comprehensive and well-written, so I felt I got a good deal.

I have, and was claiming, problems from my lupus, too. So I needed documentation from a broad band of specialists.

Did you see the Wiki article I posted? It's rather interesting, I think! The reactions and gamma ray emmissions are due to the interactions of the anti-matter and matter. I never in my entire life would have guessed that.

Anyway, I'm going to go have a good night's sleep. I had to go 2 days without the Ritalin I need to take to stay awake during the day. They needed me to be off it for the PET, which is probably why I slept through the whole pre-scan and scan. I even slept through most of the ride home.

Good night, All!

Oh, Mark, I read your article from the internet. Thank you. I saw something about the same thing on another site today, too. Positively exciting!

Not sure how I'll feel about this 2nd opinion after the dust settles! It is what it is and there is nothing anybody can do about it. Being a technical dude, I guess that I'm happy to know what we are dealing with. But is me that we are talking about here and I'm not happy to hear that it is AD. The PET scan is what put the difficult dianosis to bed!

Tom, I saw one of my docs yesterday. He kept talking about somebody else I think, kept talking about a guy with Alzheimer's. This guy has frontal and temporal lobe damage. Has to take a lot more Seroquel, because his irritability and stuff keep bubbling up. Sure would hate to be that guy. Oh, wait . . . he meant me.

I didn't think to ask why call it "Alzheimer's" and not Fronto-Temporal Dementia. Maybe next time. I know that the specific label is fairly meaningless, but I'm still curious. I remember that my MRI showed frontal lobe stuff, I guess I just didn't want to think too much about it.

Tom, you say you're not sure how you'll feel once the dust settles. I thought about that, and decided that our dust never settles completely, because we keep getting a little worse.

Alan, I think you've hit the nail on the head--the dust never settles.

Tom, I've been thinking of you since I read your post. Knowing is a double-edged sword, isn't it?

I am soooo sorry... big hugs to you.

Hi Alan! When my Neurologist started talking about fronto and temporal lobe damage he was thinking out loud I think. At that time I was afftraid that he might be thinking "Picks" so I only asked about that. This is the same Neurologist that had originally diagnosed me as having EOAD. He should feel good now that Johns Hopkins has confirmed his original dx of EOAD.

The way I read iot the largest difference to us patients about the different terms is this.

-FTD is an Alzheimer's related dementia.

- AD is an Alzheimer's related dementia.

Now you know what I know.

Tom, I so get it when you say you only were thinking about Picks, and didn't ask about the other, and just let him ramble. I do that, too.

Just yesterday, the doc was calling me AD, but he was describing FTD symptoms. Wife & I both just stared and took it in, didn't think of asking questions till we were back in the car.

Why does Pick's scare you?

Laura,

Just read you post from April 18.

You probably were not denied SSDI, you were denied SSI. It is income for impoverished people who can't work. It is an automatic application that SSA starts before they do your SSDI application. It is designed to help those who can't afford to wait the time it takes to get SSDI.

Go back to SSA and get a Social Security Disability Income application started. You should be able to get approved. It does not matter how much money your husband makes.

It only matters how much money YOU make. If you make less than $920 per month, you are considered to be below the Substantial Gainful Activity threshold.

If your student loans are only in your name, I would not worry. Once you get SSDI, they cannot garnish the SSDI checks.

Keep you credit separate from your husband's as much as possible. It will protect him from your creditors.

Good luck to you Laura.

Let us know how things are going.

quote:

Why does Pick's scare you?

Alan,

I sent you an email this morning. Picks is easily determined. I'm sure that you would have been informed immediately if you have it. That is one of those things you have either got or don't have, black and white! Not a complicated dianosis like trying to put a finger on the type of Alzeimer's related dementia you have. I think that Pick's can even be recognised via a blood test or at least a spinal tap. Full diagnosis requires modern testing (MRI, CT, EEG etc).

I tell my brain to shut up, it doesn't matter what it's called, but . . . I guess it's an emotional thing, wanting to know exactly what to call it. But then, this Wednesday hearing it called "Alzheimer's" doesn't sit well with me, so I'm off wondering what else it could be.

I think I saw a label that fit, Alzheimer's Disease, Frontal Variant.

Back in my hospital days, I sometimes disagreed with a patient diagnosis. A wise psychiatrist asked me, would changing the diagnosis change the treatment? If not, then I should quit worrying about the label and get down to treating the symptoms.

Alan,

They don't makes shrinks like that anymore!

Hey Everybody

TTom, I'm sorry, but, like everyone else who posts I am glad that you did find out your "true" label! At least your mind will be "somewhat" eased.

On my MRI w/without imagining, showed "no activity" at the center cortex of my brain. I know what you mean. To me, it's strange "knowing" that a part of me is dead and is continuing to die but, I'm still functional (?)!!!

Today isn't a good day for me. I'm going through several emotions that I'm not sure quite how to address. I at times feel that I'm still a person with ideas, feelings and some areas of enjoyment, however, of late I've been very depressed, you see, my husband has yet to call me. I separated from him after finding out that he had been lying to me, telling my family and friends that I was going to die within a year, hiding monetary valued certificates, etc. This is why I kept forgetting to take me pm meds! He would leave me at home alone for 12-15 hours a day, by myself. No car (not allowed to drive) and no phone calls. I am so very sad. I know deep within myself, that my marriage was a farce to him!

On the other hand, I'm trying extremely hard to give my bro and sis n law their space. I don't really believe that they know what they're in for! I have been trying to get my brother to take me to the Alz Org in Fredricksburg this past week but, there always seems to be something of more importance. Maybe, it's because he's not sure, or doesn't want to address this, this disease? I've spoke with my sis n law, a few times about this, she said that my brother just can't believe that I'm dying. She said, it's very difficult for him to accept this, "monster." I know once he goes to the Alz Org, he will have several thoughts and questions answered. But, again, it's a matter of getting him to do this.

I'm sorry, I keep rambling, just lonely!
M

Dear Mary,
I'm so sorry you are feeling sad and lonely. I'm, also, sorry about what happened with your husband. It's NOT your fault he is a jerk! I know it hurts but you've got to try to gain some strength and realize it's HIS loss. You are still a wonderful, vivacious, beautiful woman. You have a lot still to offer this world. I know you must grieve a little but then please try to let it go.

My EX (of 8 years was a jerk too). He hurt me a lot especially when I was very vulnerable. He used and verbally abused me. He hit below the belt! (not literally). It was not cool!! Not cool at all!!
I have to deal with this too. I had to realize that I made a poor choice in choosing HIM to be my partner. But, we all have made some poor choices in our lives and it's time to move on!!
The Hell with him! You've got a new life to live! And Mary, WE need you with OUR cause!! We need your energy and strength!

Mary, your children need you too!

There is life after diagnosis. Different yes but it can still be a good one!

Thinking of you.

Hang in there! Please, make sure your bro or sil take you to the AD Assn THIS week! You need the support!!!

quote:

Originally posted by Advocation/Mary:
Hey Everybody

TTom, I'm sorry, but, like everyone else who posts I am glad that you did find out your "true" label! At least your mind will be "somewhat" eased.

On my MRI w/without imagining, showed "no activity" at the center cortex of my brain. I know what you mean. To me, it's strange "knowing" that a part of me is dead and is continuing to die but, I'm still functional (?)!!!

I'm sorry, I keep rambling, just lonely!
M

Thanx for your support Mary! I hope that you can get to the Alzheimer's facility soon. Your brother might find it extremely beneficial to him and you. We all need support and I know it is there for both of you.

Ttom and Mary, My heart aches for each of you.

Sometimes it seems that the whole world is conspiring against me. You, too?

Mary, I went through a divorce about 10 years ago. Unlike yours, mine was over before the rest of this started. It was a good thing. Unfortunately, you're going through everything all at once, and I'm so sorry.

Ttom, my "Name the Demon" day is Monday. Maybe I can understand your situation better that evening.

I hope the two of you can find some peace, even if it's only for a short time.

Thanks All

Your support is very important to me, especially at this time. I have to get my strength back up to deal, to deal with life in general.

I hope all you guys out there that are fathers and grandfathers---have a great and memorable father's day!

Thank you again for solitude and praise
M

After Spending Sat. with a really bad stomach ache from worring, and Sunday thinking I was having a heart attack, from worrying, I got ready to get on the paratransit to go to the neuro's for my brain diagnosis this morning. Just as the bus was heading to my apt, the doc's office called to cancel. The PET results weren't in yet.

Last week when I made the appt, I asked if they were in yet. The scheduler had said yes.

This time they're going to call me when the results are actually in. Then it will take me 2 days to get my paratransit ride set up.

I'm interested in seeing if anybody calls me this afternoon to ask how it went. I don't think anyone will.

My kids, especially my daughter, who's a first year medical resident, say I think myself into illness. Yet they won't let me babysit my younger grandchildren--even for a couple hours.

I guess I was looking for validation for myself and my relatives and friends.

I went out yesterday to a movie and a meal. (I had reservations on the paratransit.) We don't have a theater in my tiny town. I don't feel like walking just for walking's sake.

I just want to cry.

Flowers2U, I'm sorry your feeling so sad. I am too right now.

I just lost a dear friend and neighbor this morning to cancer, that was so helpful to me with my mom.

I appreciate these forums because we can feel, say and ask for help on anything we need to.

Don't give up on your family, speak up and tell them what you need to. Sometimes when they don't react or say the things we need or want, I, at least have a tendency to back off and the communication can just stop. So we just have to keep speaking up to try and help them get the true picture and hopefully they will and react appropriately.

We are all believers here in what each one is saying and experiencing.

I would love for all of us to live in the same commune, so we could be there to help each other physically and emotionally with total understanding.

Go ahead and cry, it is necessary sometimes for relief. I do, but then I go into, what I call my numb and quiet place, with no feelings, so I can get on with what I need to, with no bad thoughts or emotions.

Best wishes to everyone here.

Becky, I'm sorry for the loss of your friend. You have a lot to deal with right now.

My kids have proved that, while we can get along, they don't want to have anything to do with any illness I might have. They're busy building their lives and families right now. Parents need to be pushed away for a time while they do this. The more I want to talk about health issues, the harder they push back.

So I'm on my own.

Dear Sue and Becky,

I'm sorry you are both so sad. Of course, you have good reasons to be sad.

Sue, please try again with your family. Tell them what YOU need.

Becky, I'm so sorry for the loss of your friend. It's very sad.

Just wanted to let you both know that I am thinking of you both.

Please, hang in there!

Thank you for your reply, Lisa.

I've tried opening conversations and making my needs known, but my kids are denying that they need to do anything.

It doesn't help that my doctor daughter has told the other two that there's nothing really wrong with me.

Grrr.

Sue,

Just remember, your daughter the first year resident is not even to the practice stage of her career. Residency is still a steep learning curve. Then she will have years of "practice" before she starts to really have a strong working knowledge. I am not knocking your daughter. She is no different that most doctors, especially those with wet ink on their diplomas.

Even neuros can be slow to diagnose.

You might ask one of your other two children to accompany you to the neurologist.

Thank you all for your encouragement. I appreciate it.

There's one thing I know: medical residents, especially 1st year ones, "know EVERYTHING" (in their own opinion). It's almost funny listening to my son-in-law, who is also a resident.

It's sort of like when a person gets older, they realize how little they really know.

But, without residents, where would our hospitals be? (Hint: don't UNNECESSARILY go into a hospital for surgery from July-Aug. Chances are you may get a brand new resident. An attending physician will be there, though.)

None of my kids can go with me. It just won't happen.

I am taking a tape recorder with me, though.

Man, I would really enjoy talking with another EOAD victim face to face. I've been trying to start a support group in the area for EOAD for about 6 months with no luck. I'll need to go to a support group at an assisted living facility to meet up I geuss.
Has anybody else ran into this problem? If so, how did you get around it?

Whoopy! I will meet with my first EOAD person this week. I'm so excieted! There are others out there like me!! Typing to you people is great but it just isn't sinking in with me. I need to see and talk with another EOAD victim.

I know, I'm thick headed!

Tom,

Congrats on finding someone like you to talk with face to face. I know these interactions are important. I attend EOAD support groups 2 x a month and they are vital to me.

Good Luck, Tom and enjoy.

Please, let us know how it goes.

Good for you Tom! Let us know how it goes. Invite your new friend to our boards.

Iris L.