One of you good people posted directions to go about applying for SSDI. I thought then that it may be useful. But now I can't locate the post. Could somebody please direct me to that post?

Thank You in advance, Tom,

Tom, somebody mentioned getting SSDI application help from an attorney. There are bunches of those, and some companies that help too, all under the same Federal rules re: the percentage they can take.

I'm a happy customer of Allsup, found at www.allsup.com

I can talk a good game, but my verbal skills are way stronger than any other piece of my functioning. My wife has her own health issues that absorb her, so using a third party was an easy decision for us.

Thanx Allen. I reviewed the site and will probably call them tomorrow. I would have completed their on line, free evaluation but have not reached the age of 65 yet. Thanx again!

What "LIGHT" would that BE, Tommy?

The one with all the dead people surrounding it and beckoning to you????

Well, you didn't check this out with ME, BUDDY, and if that's the "light" you mean, then you don't HAVE my permission.

Got your phone messages and I'm sorry I wasn't hone when you called, but I had to work tonight and last night I didn't get in until 3 am from celebrating my birthday and almost getting arrested, so I will catch up with you ASAP, okay?

Sorry about the job, Tom, but you're not the type to throw in the towel, so don't, okay?

Don't MAKE me come up there, Buddy!

Your Pal,

Bill

Tom, I would agree that you need to start applying for SSDI immediately. You can fill out the application onlion, or you can copy it there and work on filling it out. It will take a bit of time and work.

Most attorneys and SSDI companies will not help you until you've been turned down at least once. The other side of that is that almost everybody is turned down the first time.

Keep copies of all tests, notes, chart notes, forms, etc. in a motebook. You will probably have to refer to it over and over.

Get every bit of documantation you can. Ask you employer if they saw anything that seemed to hinder your work performance. Get it in writing.

Try to remember every single time you've had difficluties with your cognition. Write them down. Have others write down what they've seen (like your driving).

And remember, app0lying for SSDI is a game. They want you to give up as soon as possible. The game can be drawn out for quite a while--well past the time you think you want to punch someone--or everyone--at the SSA.

It is a game theydesperately want you to lose (slme SSDI agents are really helpful,m though). But don't give up. It's worth it in the end.

Here's a hint I learned: After your frist or, better yet, second time turned down, write your Senators. ONe of my Senators made a miracle happen with Medicare for me.

Either the SSDI company or the attorney will get either a fairly large percentage of the back pay or, lioke, $5400, or something like that. It will be taken out of the back pay SSDI will pay you after you win (remember, it's a game). They pay you back to the day you left your last job ("date of disability").

Be sure to get an attorney who spedcialized in SSDI. Also, I think the main 2 private companies are Allsup (whom I used) and Binder and Binder.

If you should get to the adjudicator (ALJ) step, be SURE you have an attorney with you. It is a real court.

Also, be sure you look online for the SSDI official list of covered disabilities. That will help you play your part of the game.

The following would apply more to others than to you:

Another thing I learned, after I needed it, is that sometimes states have less rigid ADA rules than the federal govt has. You can bet your employer will not imform you of that. I live in WA, and we have very good coverage for the everyday person. Instead of having 3 months to appeal an ADA decision, we have 3 years. And Your employer HAS to find a job you can do, too.

Finally, check to see if you have a long-term disability policy. My emplyer provided that as a benefit. It gave me income while I was fighting for SSDI.

COBRA, while expensive can be a real lifesaver!

When you get your first SSDI check, be SURE to either have the IRS fill out your tax for you for the year, or have a professional do it. Otherwise, you're going to have one heck of a tax bill.

Any other questions, be sure to ask me. I don't think I have any memory loss around my part of the game.

PS. I did win. I got my first check 29 weeks after leaving work. No problems since then.

Well, when you have to learn the Medicare maze you may run into a few problems, but if you learn about the system, and choose your companies online, youi should be OK.

Sometimes you qualify for both SSDI and the state-provided SSI. You might want to check on both.

Do you have enough to think about now?

Hello Tom,

So glad you have decided to go the SSDI route. I can tell you it was really difficult for me to do it. I felt like I was a failure. Like I was asking for some kind of charity. But everyone, including the attorney, reminded me this is a Federal Benefit, like a insurance policy if you will. A benefit to support you when your physical or mental health fails you and you are unable to work. YOU PAID FOR IT! Every check you recieved from an employer, a portion was paid to the "premium".

I keep hearing more people say they were approved on the first go round. I was, even though I was told to expect to be denied then to appeal. My personal suggestion is to simply tell your story, like Flowers2u said. Make your application personal. Tell how you are impacted on an every day basis. Give details. Don't just say I don't remember how to do things. Tell what you can't remember how to do. I.E I could not do a daily deposit sheet, Post insurance payments to patient accounts, get into my email, remember important conversations or phone calls made in the morning with clients when asked about them in the afternoon. Couldn't even remember the people sometimes. That is what they need to hear about. It makes it more personal to them I think. Makes us human and not just an application. I think there are so many slackers trying to get a free ride they get a little hardened sometimes. So be as specific as possible.

Keep us informed on your steps and progress. I am sure it will encourage others in their journey with Alzheimer's. We all learn from the success and failures of others.

Good Luck!

Lynn

hello all. reading all your posts has taken me back... tom, i can empathize: aplying for ssdi is a big step. meant i had to accept that i was disabled either i liked it or not (and i didn't, not a bit!) have always been, had to be, very self-sufficient and provide for others. my first husband left me when my first daughter was 6 weeks old ... it was all up hill from there - but i made it! was breaking steinham's 'glass ceilings' before she invented the terminology, but didn't think a thing of it - that's just what i did. in fact, remember reading her 'glass ceiling' article in my private office on the top floor of our corporate hq & laughing - knowing she didn't have a clue.
the more i read postings here the more i understand about my dx. was diagnosised this fall thanks to a new primary care doc who sent me through an extensive battery of tests including psych & very thorough neurological (which drove me crazy), CT scans and probably some i've forgotten. my relocation from a very large house to a much smaller house closer to my oldest daughter (so i could see her & 4 grandsons more often) was part of my self-prescribed 'cure' ... i thought down-sizing would make life simplier & therfor take off pressure which i though was causing stress/confusion -- ha!) This was 1 1/2 years ago. it's been downhill very fast since then. right now i'm buried under a lot of 'stuff' in the new abode. i'd had it pretty well organized at one point, but in my (pre-diagnosed) confusion & atempt to kept what was 'important' in sight i kept putting one imoprtant thing in front of/on top of another. truly hadn't seen how stacked up things had become until i walked in after dx and 'things' started jumping out at me! also recognize now that i was undiagnosed about a year to year & 1/2 prior. now i can recognize behaviors that aren't truly my 'old' self ... but do fit my current dx.
know that not being able to work is a tough one to come to terms with. i think that each stage of this disease will be. i am grateful to have this community, those of you here who share your experience. thank you. and good luck, tom. just take it a little at a time - that's all i can handle right now and find if i just keep my focus on the present as much as possible it really does help.

Patreceb,

Thanx for you words of encouragement. Gloria tells it the way it is. A little embellishment never hurts too much either. She means well and is good at what she does. Very entertaining!

Life can be less entertaining. Yes, SSDI is almost like throwing in the towel. I have never been a quitter and I don't plan to start now. The AD, world wide economy and years since my birthday are all pulling me down though. I will apply and be successful in that battle. The winner of the was is yet to be determined however.

Your quote from St Francis of Assisi is applicable. I also like his Serenity Prayer.

Ttom,
Do hope you got some sleep last night … your postings showed up elsewhere in my wanderings at unique hours. I’ve been told we do need sleep.

St Francis of Assisi and his Serenity Prayer to which you referred have kept me relatively sane (and absolutely sober) for the past 19+ years. I like that prayer, too. The economy is one of those things we can’t do anything about – I purchased my current abode with a large down payment in order to keep my monthly payments low and thinking that in the ‘long term’ that would probably work out real well. ‘Average life expectancy’ for each of my (6) most immediate predecessors is exactly 89.5 (range is 75, my mother – who had alz; to 115, my father’s father who did not have alz). I grew up on a farm in Indiana – very large extended family. I’m very fortunate and was very blessed to have known all of my predecessors closely for the first 16 year of my life. To the point, ‘life’ is a bit different now than when we were younger and certainly different than when our parents/ their parents were growing up. I mentioned ‘til I was 16 – that’s when farming got tough for everybody. You had to go big or you wouldn’t make it. My Mom convinced my Dad to do it a different way & they moved us 5 kids to CA - big change for everybody. Everybody did ok – especially the younger kids. Our economy now is similar to what my grandparents went through to get to that point. We’re at ‘make it or it breaks’ right now. I’m feeling that very acutely. My ‘secure’ fixed low rate loan with half the value at time-of purchase paid in cash doesn’t look so brilliant in view of what the housing values look like in my neighborhood at this time compared to my life expectancy!

That may seem a long way around to make a point … the point, of course, I’m still (regardless of my years of practicing) having difficulty fully comprehending and therefore fully accepting this diagnosis … all its implications on my life both short term and long term. The reality that long term isn’t going to be nearly as long – nor as ‘full’ as I’d previously thought!

Tom, don't forget to list any of you physical disabilites on the SSDI application, too. ANYTHING that will help them decide. I have several kind of arthritis, and I listed the reasons they kept me from doing some things.

SSDI is there to help you when you need it. It was such a relief when I got it because I could quit obsessing over what I should've been able to do, and learn to live my new life. I moved into a senior/disabled apartment complex.(I pay a little over $100/month for rent.) If my life was going to change, then I was going to make life easier.

I had to give up ddriving, so I live where I can walk to most anything. I qualified to take the paratransit just about anywhere else.

Yes, it's a really different life, and not one I in the least expected (I thought I'd be working--and gardening-- until I was at least 70). All the changes felt like a death, in some ways.

SSDI and SSI are here to help us when we can't help ourselves fully anymore.

You can apply for SSI and get help there while still applying for SSDI, I believe. You might be able to get food stamps, too.

One thinkg about SSDI is that your income is not terribly affected by the volatile fiancial crisis!

Please keep trying, Tom. The sooner the better.

Sorry that I have not been very active on this board lately. Since getting laid off I've been attempting to complete the SSDI application. Seven days later and with the help of my loving wife I'm getting close. Maybe this weekend will finish it off.

Tom,
Hang in there! I know it is a very difficult process but I believe you will be successful. SSD is NOT giving up. It is starting fresh. Listen kiddo, I don't want to hear anything from you about giving up. I know we all feel that way sometimes but YOU have too much left!

Hugs!!

Lisa,
I live in lower Terrebonne & I take care of my mom who is 59 (diagnosed at 55). She is about stage 6 dementia. Dr. claims it's more frontal lobe than temperal. What programs are available to help? My Dad works 14 & 7. I care for her for the 14. Thanks for any help.
Lynette

Hi There Tom,

Glad to hear from both you and Bill. I had been wondering where our conversationalists (is that a word) were. Don't worry about taking your time on the application. It takes a while and there is plenty of that. Remember you have to wait the 6 months with no pay before you would receive benefits anyway. What you are dealing with timewise now is "how long will it take them to review and make a determination". I took a little over 2 weeks. It was very difficult for me mentally to complete the form. Like several of us have said, Put everything down, even if you don't think it is important. Co-illnesses especially. Let you feelings out. Be sure and describe how this impacts you. The fact you have lost jobs. This shows you have problems with the complexities and duties of holding a job. Describe those difficulties. Remember, you have to make a picture of you and your life. Keep us posted.

By the way, did you check in to any long term disability insurance that might help keep you afloat for a while through the employer?

Good Luck,

Lynn

Dear Lynbella,
Hello and welcome to the AD message boards. I'm so sorry to hear about your Mom. You have found a great place to vent feelings, gather information, and get a lot of great support.
To answer your question, I'm not sure what is available in your area. Please call the Alz Assn helpline @ 800-272-3900. They can assist you and transfer you to your local AD assn.
Good Luck.
Please, let me know how you and your family are doing.

How are you doing, Tom?

I'm okay. Thanx for asking, just been very busy.

Tom,
I've been kinda worried about you. Are you really ok? I know you are busy but we haven't heard much from you lately. No pressure of course, but let us know how you really are!

Thanx for your concerns Here is a little update. As far as the AD goes:
- I ran out of coconut oil a couple months ago or so. We purchased coconut oil pills and I took them faithfully. My leg cramps returned (side effect of Aricept I think so we went out and got more coconut oil paste. My cramps have begun to let up. I won't try it without the stuff again!
As far as being busy goes:
- My effectiveness in the multi-taking area has been almost wiped out. Therefore EVERYTHING takes a lot more time! Right now I've got a lot on my plate. Sounds odd for an unemployed dude to say but it seems that-a-way to me. Just completed returning some company property and filing for UC benefits. Worked like a dog wife my wifely to complete the SSDI forms and have submitted them. I have been talking a lot with JohannaC lately for AD reasons. She is a good nurse and a great supporter!
Because I'm still in denial about the AD I have decided to study a matter of interest to me but something that I have remedial knowledge in. That be a financial planner. I'm not certin how that is working out. There are many large, fine print books to read, understand and commit to memory. I managed to get through most of the first chapter. It has taken me most of this week and my retention has not been tested yet. My wife keeps asking me, "Are you sure that you want to become responsible for others investments?". Well, my answer to that is two fold.
#1- It scares me to think I might lead a person down a wrong choice with his life savings. But then I think that the investment is their choice in the end. If I do a poor job I won;t last long!
#2- I just want to use this period of my life to learn something new. If I can't get through it successfully, that will be an indicator. If I get through the learning process okay then we revert to #1!

Tom,
Good to hear from you. Glad to hear that some things seem to be going well. You might want to try getting those books on tape/CD from the library. You can read along while listening. It may help you remember.
Hang in there, Tom.

Keep us posted!

I couldn't even find my books this morning! After several hours of looking around where I might have left them but forgot, I found 'em. They were in plain sight right here next to the 'puter. Man, I hate when that happens!

I have alot of support plus I do online bowling in tournaments at Pogo,the game site.

Tom, I have some success by using a flashlight to look for lost things, even in the daylight. It seems to help narrow my focus.

It also helps find shiny things, like eyeglasses.

Thanx for the suggestion Followers! If I can think of it, I will try it next time.

Hi Sue,
That sounds like a great idea about using a flashlight to look for things. I am ALWAYS searching for something. Thanks for sharing that great tip!

I've been working for almost a month now to get my SSDI documentation ready. It has been a pile of hard work but my wife has been there for me all the way. Looks like it might be ready to submit in a week or so!

Tom, I found getting information together for SSDI, which was helped by Allsup guys, to be very, very upsetting. Looking at all my problems in one wad was too much for me.

Are you handling it alright?

I am a first timer to this forum and group so please be patient if I step on toes.

The SSDI process can be very humbling. It also can be very illuminating. As you try to categorize your symptoms, you make them real. This can help with the denial aspects of dementia.
When my wife finally started helping me with my SSDI and other issues, she began to understand the nature of my problems. Be advised that any SSDI application that is not approved at first application usually takes about three years or more to complete.
SSDI has recently started to adopt "Compassionate Allowances" for certain conditions. See http://www.socialsecurity.gov/compassionateallowances/ So far, only "Frontotemporal Dementia (FTD), Picks Disease -Type A - Adult" has been listed. We need to put pressure on SSDI to establish standards to AlzD and Vascular Dementia for "Compassionate Allowances" approval. The Compassionate Allowances program is so that untreatable conditions get approved with the least amount of delay and distress to the applicant.

One of the first issues to address when applying for SSDI is "Does your condition limit your driving?" Many in this group are still driving at great risk to others. I gave up driving 8 years ago at age 46. The last thing I need rattling around in my dysfunctional brain is the damage I did to others by continuing to drive. After a few close calls and my wife following me in her car as I drove on a long trip, I confessed and ended my driving.

Remember (ha ha) the man in Santa Monica who drove through a crowd of people at a farmers market. He killed a bunch of them. He has to live with this memory. Lack of driving mobility is a serious limitation but the alternative is much worse.

Four months after I quit driving I had a neuropsych assessment. The PhD said in his report that I should not be driving which he acknowledged that I had already stopped doing. A NeuroPsychiatrist did a Qeeg six months later and said the same. I still have my license here in Idaho but only drive in limited situations such as the back country roads at my mountain cabin. At least there I have very little risk of injuring others.
There are some clinics that can test reactions and visual perception to help with a "stop driving" determination. My driving symptoms were:
A tendency to drive slower that other traffic.
Difficulties doing multitasking, i.e. watching for traffic, shifting gears, and starting up again. I froze when trying to merge into traffic from a stop.
Tracking all of the traffic and pedestrians at an uncontrolled intersection. Again, I froze trying to remember all of the conditions.
Remembering where I am going or where I have been, i.e. missing a turn, confusion with road signs.
Finding yourself in a dangerous position. I realized that I was headed for the sidewalk or on the sidewalk.
Others do not want to ride with you.
Forgetting to put the car in park or the emergency brake on, head lights left on, etc.
Being easily distracted by the radio or others talking. When riding shotgun and looking at a map, sometimes I have to ask my wife to pull over, stop and turn off the radio so I can concentrate to read the map.

Although I have not been diagnosed with AlzD, my neuro told my wife to plan for me to develop AD. We both lost our fathers to dementia. Her father died of Alzheimer's at 76, my father died of Central Apnea caused Vascular Dementia that started when he was about fifty and lasted until his passing at 79. He retired early at 58 when he could no longer do the reports at work.
He was aware of his driving problems but refused to stop driving until about 75 yo when his car broke down and he could not figure out how to get it repaired. When he wanted to drive somewhere, we just told him that his car was still not running so he would let someone else drive. When he was still driving to go snow skiing, he was aware enough to not use the heater in the winter and instead dress warmly in case he ran off the road and was stranded without help. Because of his slow long term onset, he had developed many work-arounds and accommodations.

Mark in Idaho

I suffer from

Dear Mark in Idaho,
Hello and welcome to the AD message boards. I'm sorry for what brings you here but I am glad you found us.
Thanks so much for sharing some of your insights and experiences. That's how we all learn.
Have you contacted your local AD assn yet? Please, do so. They can assist you in many ways especially with support groups.
You have found a great place to gather info, share feelings and experiences, and get a lot of support. This is a wonderful group of people.
Again, welcome to the forum.

Mark, thanks for posting, it's always helpful to read how someone else is doing. E.g., I tried to imagine having the problems you already have, and your neurologist saying that Alzheimer's is coming, too . . . Whoa! Too much.

The driving thing is a big one. I think my wife is more worried than I am, in that she needs me to be mobile so she can work. Like you, I've eliminated most driving. I mostly do the occasional morning trip to go have coffee with a friend. After we're finished visiting, I often sit in my car, waiting for the visit vibe to settle down, and I can focus on driving again.

I could certainly manage driving to my cabin in beautiful Idaho! I am sick with envy, Mark!

If you would, I'd like to hear about your concussion(s). I had a couple in my youth, one bad fall and a couple of times when gentlemen roughly pointed out I was no good in fights, and a mild concussion a year ago slipping on ice and falling head first.

Mark/Alan

Interesting topic, head injuries. At the age of 19, I was involved in two rear-end car wrecks (I was passengers both times). I was going home from the Dr's office after the second wreck (wearing a neck brace). I couldn't hold my head up! After mths with this inability, I found a new Dr. who put me in neck and pelvic traction. I laid like this for 8-wks in a hospital, each day increasing weights for both areas and P/T therapy 2-x daily. My neck was turned opposite of normal. Dr said technically should have broke. My skull was pushed 7-degrees off the center of my spine. No, I never had surgery, but instead, used vitamins and exercise to sustain treatments that I had in hospital. To date, I have two herniated discs at L4-5. There are bone spurs, in addition, the nucleus is completely gone.

I would have never concluded the possibility of an injury to bring on EOAD?

Am I having another blonde moment or Alz?

Hello Mark in Idaho, my name is Tom and I also want to WELCOME you to this board that is designed for people like you and I! I’m sorry to hear about your problems. I'm trying to get through the SSDI red tape myself. Finally gave up and called the local office. They set up an appointment for me to come in so they could help me.

In June of 2008 I was diagnosed with Alzheimer’s related dementia. The doctors have indicated that a TBI I recieved in 1982 might have been the starting point for my dementia a;so. 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. We were all new once so don't let that bother you.

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!


It seems to me that you are addressing the correct forum.

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.

First, a history of head/brain injury greatly increases the likelihoods of AD. I think the reason is many brain injuries result in a condition called "diffuse axional injury." That is an injury to the many axons that are the communication links between the neurons. This injury can be very minor such as a stretching of the axons, but it can globally effect how the brain functions. DAI can be an intermittent problem brought on stresses to the brain such as mental overload, hypoxia or anoxia from altitude or apnea, etc. It is often a catch all term when there is not other identifiable brain injury.
There is often an injury to the corpus collosum, the grand central station of the brain that provides the communication path between the lobes.
Focal injuries can be from penetrating injuries or from an intense impact to a specific part of the brain. Focal injuries often include "contra-coup" injuries. That is an injury to the opposite side of the brain from the impact as the brain is banged back and forth.
A serious problem with concussions is called "Second Impact" or "Multiple Impact" Syndrome. After each concussion, the next concussion is more damaging from less impact force. I can now get a concussion shaking my head NO.
In my case, I have had about 13 notable concussions. Most were not bad but were enough for me to notice symptoms. Mild concussions to me are followed by a moment of confusion, a metallic taste in my mouth as if I was chewing aluminum foil, and sometimes even nausea.
My first bad concussion was when I was 10. I fell from a bike and hit my forehead so hard that I was knocked out for more than 30 minutes. When I came to, I spoke very slowly for a few days. I spent over two days in the hospital as they observed my speech problems. My mother says that after that injury, my personality changed drastically to the point that I was not a sweet little boy anymore. A year before I had suffered a minor concussion falling down the stairs and hitting my head on a hardwood floor landing.
Since the bad concussion, I have suffered many minor concussions from roller coaster rides, bumping into overhead obstacles, wrestling, and soccer. After a soccer concussion heading the ball, I started having seizures. My academic performance plummeted. Many tests and no positive results. A couple years on meds and I recovered mostly. I have since had many relapses (decompensations) that required mental exercises to regain processing skills and speed.
In 1996, I hit my head hard on an overhead beam and have problems for over a year.
I was assaulted with a blow to the back of my head in June 1999 that changed my personality again. I mostly recovered from both then in January 2001, I stepped of a curb and landed with my knee locked. I thought I was walking down a sidewalk ramp. The impact injured my pelvis, back, left shoulder, neck and head. I started having problems driving. My visual short term and immediate memory was permanently damaged. It is now in the bottom 10% of the population, yet my IQ is in the top 1 to 2 % of the population. Doctors say I have a serious problem with auditory and visual processing due to a "gating" problem in the corpus collosum. My brain tries to process all visual and auditory stimuli rather than gating some to block it from being processed. My processing speed/power is reduced to 25%. My digit span (things I can think about at the same time, multitasking) is usually 2 to 3 where it used to be minimum 5 to 8 and sometimes 12 range. My visual and auditory immediate and short term memory is shot. When I tried to drive, I could not keep track of where cars were. Crossing an uncontrolled intersection was a problem. "Saw the car coming from the left, looked right, saw the car coming, forgot what I saw to the left." I am easily distracted from the task at hand, a serious problem with driving or trying to follow a conversation. I need to use head-phones to watch TV, otherwise, I lose the audio in the background sounds.
I have tried my mind exercise that worked in the past but to no avail. My neuro says I have used up the reserve capacity my brain has for recovery.
The computer is my savior for getting my thoughts together because I can read what I just thought. Plus the multi-sensory of think, touch the keyboard and see the screen helps.
Often I have to close my eyes to listen or process what I just heard. My spacial awareness of my surrounding is shot. I now lose personal items that I had never lost in the previous 46 years.
My brain easily gets stuck looping on a meaningless thought such as spelling a word, repeating a license plate number, repeating the lyrics of a song, etc. This can go on for hours or even days. It is exhausting. I take Paxil to reduce this symptom. I need Neurontin so I do not have seizures when I sleep. My body will jerk and become rigid. I will clench my jaw.

If I read, it can cause me to need a nap. I cannot read fiction or writing with highly descriptive phrases. I cannot track all of the details. Depending on the writing style, sometimes I get exhausted.overwhelmed at 200 words. Most times I can read 400 words before having trouble. If it is well written with a mechanical style that allows all of the part to fit together, I can read 800 words or even far more. I know this because I started pasting articles into MSWord and using word-count to count the words if I was having as hard time reading. The patterns became evident very quickly.

If I need to prepare documents for my Social Security or Work Comp case, I need to use multiple monitors and paste between screens as I look from one screen to the next. If I am trying to work with multiple pages of information, I must first three hole punch them and put them in a binder so they are in a fixed order. I get overwhelmed if the pages are spread across a table or desk. I cannot fill out a form full of blank spaces. My mind gets lost with all of the blank spaces so I have my wife help me.

I have spent the last eight years developing work-arounds and accommodations. The neuro-psychs that have assessed me have all said that my work arounds are the best that can be done.
A great work-around on the computer is using Firefox for online and Thunderbird for e-mail. As I type into this box, Firefox underlines my bad spelling.
I often get my hands mixed up and reverse their functions. I have a problem with the right hand knowing what the left hand is doing. I have cut of a pinky finger because of this problem. I constantly work with my hands to keep some function. I have a crawler tractor at my cabin that is good therapy at two hand functions. I can be doing great and then all of a sudden, my hands forgot how the controls work. I stop and reorient by clearing my mind and visually go through the correct motions. I had to do this with my feet before I stopped driving. I would forget what each foot was supposed to do, clutch, brake, gas.

The cabin is my place of solitude. The ambient sounds are all natural except for the occasional truck driving by. It is like I become a different person.
I wanted to bring my father to my cabin before he passed but could never arrange to get him up here from Sacramento. I think the solitude would have made for some very good times. He grew up in the mountains of New Hampshire and the environment would have caused those old memories to come flooding out.

I have lots or work-arounds and accommodations to share with anybody who is interested. Just post up and I will try to respond. Internet is sketchy at the cabin because it depends on if my neighbor has her wireless router turned on. We will be heading up later today or tomorrow morning once my wife gets her errands done.
My father was good at work-arounds to.

Something I have learned watching my father and my wife's father, People with AD need to develop work-arounds and accommodations before they need them. By the time they truly need them, they often cannot learn or remember them. Their caregivers often can see where they are failing and help to teach the work-around. Work-arounds have to become "over-learned skills." The brain will retain "over-learned" skills much better than "recently" learned skills. It pays greatly to think ahead. My Dad learned to use cheat sheets with peoples names on them. He was very reliant on a clock, it helped to keep his day ordered. His schedule rarely changed and this gave him a sense of security. Routines made his last years much better. He was doing his exercise routine at the gym up until three months before he passed. This was a great asset to both him and his caregivers. Routines filled his day.

Mark in Idaho

Mark, what a history! Do you now wear some kind of head gear for protection?

What have you found works best for you, in terms of getting things done? Do you use to-do lists, or some other way to keep yourself doing things you want/need to do?

Welcome, Mark, from a Washintonian, and a person who used to live in Spokane and Moscow (and near Sacramento).

I'm so sorry to hear what happened and is happening to you.

I remember what it was slike to know it was time to quit driving. It felt like a death happ0ened when I finally gave my car to my daughter. I was fortunate to find an apartment within walking distance of most everything I need--that's when I'm not walking into a tree, thinking it's a sidewalk.

I also remember the time I was trying to get SSDI. It was a game I was always losing, a life-and-death game. Allsup won it for me. Senators help, too.

I find that routines and lack of confusing stimuli make my days go much better, also. Often that means staying in my apartment where I can control my environment. It's my place of solitude.

Recently I walked around a new store for a couple hours, lost, then couldn't find the check-outs when I needed to pay. I don't go to new stores any more than I absolutely have to.

Work-arounds and accomodations have been important to me from the beginning--probably before I could understand why. I think you're right when you say that the earlier you learn things, the longer they stay.

I would be interested in any you would be willing to share.

My latest two are using a flashlight to look for something. I folcuses my attention.

The other is to leave a light on when I need to remember which room I need to return to. And turning a timer on whenever I turn on the range, even if I plan to stand there (cause I usually end up distracted, and doing something else).

I would abe interested in ideas any of you have for making life with memtory problems easier. If you don't forget what they are... hehe

It been some time since my last vist to the message board or EOAD support group and first thing I notice is the "Peer Volunteer" designation,is it new?

My battle with Social Security Disability, battled for 4 years to obtain benefits. Hearings, appeals, administrative law judge all part for the effort. Most Folkes I know with EOAD have had a simmular tale.

The things I am just learning about head injury, I can still remember as a teenager when a friend of a friend was learning Judo and threw me, I landed on my head on the concret sidewalk, I guess I was out cold, that what they told me any way. There was also a later tossle with my brother I barely remember and I was told later I was out am out cold after banging my head, after recovering in the hospital my family was told 'no' lasting harm. , Now I wonder.

Any one planing attend the forum in Washington?

Memory work-arounds for the Telephone

One of my most commonly used work-arounds is on the telephone. I have a miserable time with call directors. If I cannot bypass it by pushing 0 then I use this technique. I put my finger over the 1. If the first option is not right, I move my finger to the 2. If 2 is not right I move my finger to the 3. If the next option is not better than the one where my finger is, then I do not move my finger. Where ever my finger is after all of the options are offered, I push that number. It works well for me except when the individual options have too many parts, such as If you want this, that, the other or something else push 2. The variety included in the selection can be overwhelming.

If I get an answer from somebody who speaks with a strong accent, often in India or the Philippines, I ask to be transfered to someone who speaks American English. Sometimes I get a rude response. If I explain that I have an auditory processing disability, they usually are more helpful. I find that when there is a strong accent or poor connection, I use all of my attention and brain power just trying to understand the words. I have no mental energy left to understand the sentence. I noticed this one day standing in line at the pharmacy. A little old lady was trying to get drug instructions from a Filipino pharmacist. The pharmacist kept talking louder and louder when instead she needed to talk with better English pronunciation. The poor old lady never did understand the pharmacist.

I have considered getting rid of our land line phone, but I could not use my finger over the number technique on a cell phone. My desk phone allows me to input the number and see it in the display before I hit dial. It saves me from a lot of wrong numbers. Telephone head sets also are very helpful. I do not have to let each hand compete for control. I often get my motor controls reversed. As they say, my right hand does not know what my left hand is doing. At least I cannot cut off a finger using the telephone.
I do not use lists. I either lose them or forget to follow through and use them. A white board on the refrigerator is my only list. I purposely leave uncompleted projects out in plain view. Otherwise I would forget. I have a comic from Family Circus on the frig. The captions says " If I put everything away, I'd forget where it is."

Work-arounds for the computer

When I have to prepare for a Work Comp or Social Security hearing and have to organize my thoughts, I use two monitors on the same computer. This is usually easy with a laptop. Just plug a second monitor into the video connection. If you have a desktop, you will need a video card that has two monitor connections or install a second video card. Windows supports multiple monitors by setting monitor options in the display properties window.
I can have a Word document open on one monitor and be researching the internet on the other. I can then copy and paste from one monitor to the other.
I often start by just writing or pasting every idea into the Word doc. The I cut and paste to put the ideas into a useful order at the top of the document. Sometimes I have two documents open, one on each screen. After a few passes at editing with this cut and paste process, I can usually get my ideas and other information in a understandable format. Then I have my wife proof-read it.
It is amazing how much Social Security , Work Comp and other disability info you can get right of the internet without having to transcribe it. Transcription is a definite problem for people with dementia. I wont even try it anymore.

Work-around for keeping track of medical records and other paperwork.

I keep a supply of three ring binders handy. When I have a document to keep, I three hole punch it and stick it in the appropriate binder. When it is in a binder, you can access one page at a time. There is no risk of losing a page or miss-filing a page. If I need to have a set to take to a hearing or such, I always take a copy. I create a master set that never leaves my home office. I made six complete sets of my medical records when I started my disability claim. At first I thought I was making too many sets, but six sets has worked out well. I can take a complete binder to a new doctor and even leave it with him.
A company called BinderTek.com makes excellent binders for top punched records, even legal size papers. Their prices are fair and their binders are strongly made.
It is a great sense of security and accomplishment when I can get my records and papers organized so I can reliably find information.

Regarding head gear for protection.

I do not wear any head gear except when I am snow skiing. Even then, it is only to protect me from others running into me. I do have a good bike helmet for the day that I finally get out and go mountain biking. I do not ride a bike in traffic. In my current condition, a helmet is of little use. My brain is too sensitive to even minor impacts. As I have said, I can get a concussion just shaking my head NO. I cringe when a spot comes on TV promoting a mixed martial arts or ultimate fighting program. Just seeing somebody getting hit in the head is a traumatic event for me. It causes me to have flash-backs.

Well.... I finially had to give up on filing on-line for SSDI. Made mistake after mistake, corrected them one at a time and continued to martch on until the program up chucked on me. Made an appointment to go to the SSA office in town to get their help. I only waited for about 3 weeks for the appointment they gave me for yesterday. My wife and I were there for about an hour and it was completed. Granted, the information they needed was in my folder but I just could not oganized it correctly for them.

I'll get back when I know more.

Tom, I'm glad you got the paperwork done. It will help if you contact your Senator if you are turned down the first time. Things speed up a lot. YOu also have a better chance of winning the SSDI.

Another owrk-around: I keep a magnetized paper list on the back of my steel front door. When I need groceries, I push the list in front of where my eyes will be as I exit the door. I also do this when I have to remember my doc appt times ,and pickup and return times for the paratransit. Then I put the list in a certain pocket in my backpack.

Honestly, I was trying to hook up a new VCR/DVD a few days ago. It was an exchange, so I should have had an idea how to do it.

It took me an hour, circling important connections, etc, on the diagram. I would look at the diagram and forget what I was supposed to hook up before I even looked at the wire. I did this probably 8-9 times before I got it done properly--in an hour! I felt SO stupid.

Fortunately, setting up the device was easier because, for some unknown reason, I remembered a little more of it.

I have been someone who could look at a wiring diagram, make some sense of it, and do it easily. Grrrr.

Tomorrow I have a vein procedure on one leg. I think I've got it all figured out as to what to take and do beforehand. I put my meds by the front door.

The cat played with one of them. It took me about 1/2 hour to find the bottle. Why didn't I think about the cat and his perceived toys beforehand?

The nurse called to ask if I had everything ready. If I had my stockings ready. Hmmm. What stockings? They weren't mentioned in the leaflet, I don't think. But do you think I could remember to ask her which stockings she meant? NO.

I've got several meals ready to just hear up in the microwave. I hope I recognize them in the refrigerator. Otherwise, it'll be string cheese and tea.

Isn't life interesting?

PS: I also have a difficult time figuring out the dosage of my loose meds, like the Valium and Tylenol I'm to take befroe arriving at the doc's. Do I take 2 pills sometime beforehand, or is it one pill an hour before? (My pharmacy sets up all my medisets for me for free. I don't know where I'd be without them.)

Tom, I tried to do the paperwork on line for my ss but got totally confused. so i made an appointment and went down to the office and got it done in about 2 hours. the main thing is when they send you paperwork back it is very time sensitive. you have 10 days to get it in or you will automatically be turned down. I sent mine in but then they said they didn't get it so I called the place in utah to tell them I have copies of what I sent and could overnight it but the lady said she had gotten them the friday before. so now I am just waiting. good luck.

Sue I also have a time with keeping track of things. I have shingles now and am on different meds than what I was. I have a master list. My brain book with EVERYTHING written down. so I make note of the changes and referr to the list several times a cay. I am still able to set up my own meds so I do that once a week so I don't get confused each day. the changes i write in my brain book and cross it off each time i do it. that book goes with me everywhere. it is big. notebook size so there is plenty of room to write. i have had this same type of system for years from when i was able to work. good luck with your tests.
Margi

Tom,
Glad to hear you got the paperwork done.

Good Luck!

Hey Lisa 428

In a resent email from Shelley Bluethmann re: your group, ESAG 2008, Principles for a Dignified Diagnosis – One of the big projects this year’s ESAG, good work.

I will attend Early Stage Summit in DC, hope to meet you there sometime. I attened last year's forum in Washington DC and I am looking forward to this years events, it is a great time to meet others diganoised with EOAD and like kind dementias

Have you seen the New DVD -- Understanding Alzheimer’s DVD, which was edited and just released this month.

Regarding the SSDI application.

Three hole punch everything in your application so you can put it in a binder so you do not lose any pages. It is amazing how many times I need to look through my records. If they are lose, I get confused and often get them mixed up. If I keep them in a binder, they are safe.

The brain book sounds like my medical records book. I do not make notes in it but it has all of my information. I have stacks of records in binders. My wife is my note taker. She goes everywhere with me. I can not get my brain programmed to remember to write things down. I used to have a photographic memory so I never developed any note taking habits. She bought me a voice recorder so i can dictate notes to my self but I forget to use it.

Calling your Senator only works to speed things up a bit. They have no other input into the process. Social Security is in the Executive Branch as part of the President's Cabinet under the Secretary of Health and Human Services. That makes it Constitutionally inappropriate for a Senator to try to influence the process.

I think somebody washed my mind because I can't do a thing with it.

Mark, you're saying you've been brainwashed?

Ha! That's a good one! I read that, and thought that sometimes my brainwashing is a slow drip, and other times it's a full flushing.

Mark, I don't know if it's constitutional or not, but emailing one of my senators has caused some miracles to happen. I think sometimes even a govt organization hearing that a person of importance is looking at them is enough to get some changes made.

One of my Senators helps, the other ignores. The first replies to my requests for help with funding for lupus REACH, etc. The other never does.

It's worth a try.

Marji, thanks for the suggestion and I may try it. My biggest problem would be remembering to pick up or write in the book. How do you remember to do these?

Right now I have a list on the back of my front door with n otes. It also has my transportation schedules, locations of frequent visits. I put a couple phone lists on the wall above the pyhone: one for docs (long list) and one for friends (not as long - hehe).

I have notebooks by the phone for messages, and by the computer for all the notes I take.

I get copies of all my med records and keep them filed. AND my favorite recipes are taped to the insides of my kitchen cabinets.

Other than that, I tend to get lost.

I did recently notice that when I'm in my own apt for a while, I'm a lot more lucid. Let me out in the real world and I'm much different.