Jan, I'm so sorry about your mother and your sister. It's certainly understandable that you wonder if you're next.

What will make you feel better, getting tested or just letting it go?

If you decide to get tested, you need to know that things like MRI and PET don't always show anything until the disease is well established & your symptoms rather obvious. Instead, neuropsychological testing is suggested.

Many insurance companies don't reimburse much for neuropsych testing. It could cost you $1,000 to $3,000, depending on the tests and how long you're tested. The least that would accomplish is to give you a baseline, to compare to later.

There is no right or wrong here. There's just what will help you along the way.

Questions?

Dear Lynn,

Thanks so much for sharing your meditation and stuff. Unfortunately, right now I'm still too angry to focus on anything. I'm feeling rather doomed at the moment. I can hardly wait until my appointment with this shrink on the 26th! Feels like time is moving is slow motion!

I'm glad you've found something that works for you.

Please, take care of yourself.

Thank you for sharing and caring.

Hey Jan,

Welcome to the AD Message Boards. I am sorry to hear about your sister and Mom but I am glad you've found us.

Have you contacted your local AD Assn yet? That might help. Please, go to the bottom of this page and click on "Chapters" and follow the directions.

Or, you may want to contact the 24/7 AD Helpline @ 800-272-3900??

You are NOT alone. We are here. Please let us know how we can help!

quote:

Unfortunately, right now I'm still too angry to focus on anything. I'm feeling rather doomed at the moment. I can hardly wait until my appointment with this shrink on the 26th!

Lisa, is it practical to call the doctor that prescribed the Seroquel, and ask for an increase? I know some doctors will work with us, others can't be bothered.

Dear Jan, Welcome to these message boards. I have been coming for half a year and I have learned quite a lot, and gotten much support. I have learned that one of the first signs of cognitive impairment is difficulty with paying bills and handling financial affairs. I know this to be true in my own case. So this is something you can pay attention to for yourself.

There is much information on the main website about dementia. Can you introduce your sister to this board? We would love to meet her.

Iris L.

Alan,

I have increased my Seroquel myself. I am currently taking 75mg regular Seroquel and 50mg Seroquel XR @ bedtime.

What do you think??

Help!

Lisa, I was thinking about the prescribing physician because he/she could, conceivably, write a prescription for a higher dose. Unless you have samples that you can mix around.

As for your dosing, did you say it backwards? The XR doesn't make me sleepy, but the regular does. So I do 400mg XR in the morning, and 400mg regular qhs.

How are you sleeping? Does the Seroquel XR help you go to sleep and/or stay asleep?

Bearing in mind how uncomfortable you are at your current dose, many doctors would go on up to 100mg b.i.d., perhaps? Give it a week or two, double again if necessary? I'm just trying to think what the doctors I admire most would do. I'm not hearing that you're anywhere near a therapeutic dose.

Lisa, I know you're a nurse. I've known lots of nurses, including how you all handle personal illness. I also know that if you were at work caring for a patient with your identical symptoms, you'd . . . go ahead, think about it . . . you'd ask the patient to sit still, while you found the doctor. You wouldn't let that patient leave, not until the doctor upped the meds.

You're not helpless, Lisa. I know it can feel that way, but it isn't true. You can take care of your self, you can advocate for yourself with your doctor, you can still do what you need to do.

Ok Alan,

I'm going to try to get one of my doctors to double my doses. If not, I'll do it myself. ( Ah, samples, that's a great idea). Did you say the Seroquel XR does NOT make you sleepy?? If that is true, I will change my dosing to XR in the AM and regular in the pm.

Please, let me know if I understood you correctly.

Hi My name is Jordan. I was diagnosed with EOAD 3 weeks ago . It came after extensive neuropsychological testing and the results of the PET CT scan showed hypometabolism within the bilateral parietal and temporal lobes compared with the frontal lobes can be seen alzheimers type dementia. I started taking namenda so far no improvement. my memory is not awful at this point.
I am glad to join this group!

quote:

Originally posted by JordanL:
Hi My name is Jordan. I am glad to join this group!

Hello Jordan and welcome! Soory to hear about your diagnosis but I'm glad you found us. I've read your post in other areas and am somewhat familiar. Sory but my instant recall is short circuted. Are you driving or working yet?

Hi,
I dont drive or work.. I try and stay active.. Swimming Meditation Walking Trying to read as much as i can

I can't swim too well because my right side is weak but I used to and love the water. Can't read too sucessuflly either. It takes me about 5 times longer than normal to read as I need to start over frequently. Walking is fun! My wife likes it when I do the house work. I can almost fall asleep between typing sentences. I like to fish!

Hi, Jordan, it's nice to have you back. I noticed a spark about a week after starting Namenda because I was reading more and doing more around the house. I learned from reading the posts that it takes a few weeks to get the full effect from Namenda. The purpose of the memory drugs is to slow the progression of the disease, so you might not see much change at first. Let us know how you respond after a few more weeks.

Iris L.

Thanks Iris.
What does everyone do to have fun, instead of thinking of this stinkin disease all day. I would love to hear any suggestions...

quote:

Did you say the Seroquel XR does NOT make you sleepy?? If that is true, I will change my dosing to XR in the AM and regular in the pm.

Lisa, the XR does not repeat not cause sleepiness with me. The regular formula usually makes me sleepy in about an hour and a half.

Jordan, what do I do for fun? I like going to the gym with my wife, 3 times a week. I like reading, though my worsening memory is having an impact, e.g. novels aren't easy. Trying to get in a bicycle habit.

Hi Jordan,

Do you have an EOAD support group near you? I attended mine today and I really enjoyed it.

I am in the process of buying another bicycle and helmet.

I do enjoy doing Peer Volunteer work and posting on these message boards too.

Thanks, Alan, got it. I think I'll change my meds around. I'll take XR in the am and reular in the pm and see how that works. Thanks.

As I have belonged to a Union since 1980 I have to disagree.
I realize thing's have changed but I'm still fighting for change.
Marcia

Marcia- Are you a patient or caregiver and what are you disagreeing with?

I was able to fool around and add a Guest Book to our http://youngerjourney.com online EOAD support group. Anybody can join in.

Dear Tom, I like your online younger journey support group for Harrisburg. It's a great idea. Did you ever get a newspaper article about yourself? I don't remember if you did.

Iris L.

Thanx for reviewing the http://youngerjourney.com page Iris. No newspaper articals but I will be visiting a Pennslyvania Congressman this week. Plan to address the needs of his constituanents concerning Alzheimer's.

Hey Tom, good for you for seeing a Congressman! Tell him you've got cynical, jaded friends who believe he won't do squat to change things until he gets a big campaign contribution from you. Tell him to prove me wrong.

Alan,

Tought that I should use the fact that I live in the state capital to do some good. I have the same cyincal feelings but I realize that somebody needs to try to get the information in front of him. My tactic will be to inform him that about 1,000,000 PA residents are effected by Alzheimer's. That might grab his ear! Please visit myt web page http://youngerjourny.com and read the planned talking points' Lease some of your own ideas by visting the Guest Book in the lower left hand corner'.
Thanx,

Well Tom, you've sure got your ducks in a row, that's an awesome amount of information you've prepared.

My only concern is that our political system is a marriage of a representative form of government, that swims in a sea of Capitalism. The politician who raises the most money usually wins. And it takes a lot of money.

Beyond buying politicians, the family with tons of money has an easier road with an Alzheimer's family member. They don't struggle with Medicaid beds at a substandard nursing home. They can hire the best people to provide in-home services. They can see an expert on the Today Show, and arrange to have their loved one seen by that guy, or whoever is the nation's best. They don't worry about a Donut Hole. And if their loved ones need to go to a nursing home, there are some first class ones out there that cost many thousands a month more than the ones with Medicaid beds.

Those rich families are the ones that politicians have to be really good to, because they pay for his campaigning. It's just math, simple economics.

Sorry I'm off on another rant. It's that kind of day.

I with you, Alan!

quote:

:
Thanx for reviewing the http://youngerjourney.com page [b]

Hi Alan, I fully understand,appreciate and agree with your view points on politicans and money. It's all disheartening!If I ever get to actually met with the Congressman I will relay your message and ask him to please prove us all wrong.

quote:

If I ever get to actually met with the Congressman I will relay your message and ask him to please prove us all wrong.

That would make my day, week, month, heck the rest of my life!!

Alan, our Memory Walk will occur this Saturday.Here, in the state capitol there might be some hidden political ears. I have been invited to speak at the opening and will invoke your challenge if I have your permission. The local media is expected to be there as well so the message will be heard around PA!

Send me you email addy and I will send you my speech.

Tom, can you post your speech for all of us to read, please?

Iris L.

Do gettum Tom!!

This is what I have prepared. It is a culmination of several attempts at similiar events over the past two years. I have been given a 3 to 5 minute slot.

Hello, Thank You for coming out today
This Memory Walk is an important event in the efforts for ending Alzheimer’s Disease! We all need to contribute all we can and this is a great way to start!

My name is Tom and I have Early On-Set Alzheimer’s Disease.

EOAD is when a person is found to have Alzheimer’s prior to age 65. 10% of AD patients have Early On-set.
I put and R in it and call it EROADe instead.

That is a new acronym to the medical community but I think it fits as things continue to fall off.

There are positive notes:
1) Welcome to my world of no re-runs!

2) I am now able to hide my own Easter Eggs!

I apologize but I need these notes to remind me and to keep me focused.

I’m just a regular person with short term memory problems. Intelligent as ever but there are changes in memory, spatial and organizational skills.

I have faith that my current meds will slow the disease so that a cure can be found long!

The cure is a test tube right now, just needs funding to test it!

My wife, Gerry and I live in Camp Hill. Yep, that’s right Tom and Gerry!

I was considered a professional but not in this area, always refer to your Neurologist for info on Alzheimer’s.

I was diagnosed at 58 after 2.5 years of evaluation. I’m 60 now. Married with a strong supporting community of family, friends and support groups.

The AD has progressed but medications have been adjusted to allow me to function fairly well.

Denial is natural but needs to be softened-
- 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.
- I’m deeply in denial but live life per my experts advice.


I have a Vision
- A world where Dementia has been forgotten about!


A Little about my Journey
- Family history of depression and high Cholesterol.

- TBI in 1982 due to a stroke and auto accident

- 30 days in a coma

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

- Lost my Sr Engineering job at Tyco in 2005 due to economic changes. Maybe? My product lines were moved to Asia in time but not all at once. I’m not bitter, it is just they way things are in the world today. I feel that my symptoms started to show up in 1999 or a couple years earlier. So I was given some slack. If they were part of the reason I lost that position- so be it, a fully balanced professional is required for that position.

- Fired from 3 local jobs during the next year due to lack of ability to concentrate and function as required. I even got lost in a stock room of one of those employers. I documented all this information as part of my professional training but it serves as my “Instant Recall” now.



My Testing History

- Began evaluation early in 2006 at my wife’s request after getting lost locally and fired. Told our 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.

- Had several CAT scans, MRI’s, Spinal Tap, Psychological Evaluation and Neurological testing.

- Diagnosed with Alzheimer’s related dementia, June‘08.

- After dx, Dr Shah immediately started me on AD drugs

- Another AD drug and a mood stabilizer was added later

- PET-CT scan completed

- A 2nd opinion was completed at Johns Hopkins, yep, I’ve got it! They asked me to congratulate my Medical team.

I’ll do that on a completely personal note as the Alzheimer’s Association does not give preference to any individuals or medications. My medical team consists of:


My Neurologist is Dr Shah. Stand up if you’re here!
Others that couldn’t attend are:
My MD is Dr. Patrick Ratnasamy
My Psychologist is Judith Strickler
My Physiatrist is Dr Milke


I’d like to share some Insights that might help
- Believe in your doctors and have a positive attitude!
- Keep your mind and body active. Use volunteer activities and a gym
- There is a lot of life to live. Live life to the fullest.
- You are not alone! There are 5.3 million of us and growing every 70 seconds.
- Problems to watch for are:
- Frustration
You can’t cure the disease or make yourself understood and sometimes you miss speak. Personally, I “Sundown”. Anything can happen before my meds kick in mornings or evenings! Our Caregivers are effected also! Thanx Gerry!
• Isolation
No one seems to understand what you’re going through. Caregivers are our only hope
• Sense of loss
It’s hard to accept changes in your abilities. Especially when you want to be in denial. What a conundrum! Find a new sense of worth in a hobby or volunteering.

Please visit my website at youngerjourney.com This is a EOAD Support Group that belongs to the members. Leave a note on the Guestbook and join in if you like. That is Y O U N G E R Journey- all one word .com. Thank You to my friend and partner Steve Hopkins for helping with this web page!



My Hope and Challenge

Express concern to your local politicians to fund breakthroughs in Alzheimer's disease research while providing more help to caregivers and increasing public education about prevention

Ask your members of Congress to co-sponsor the Alzheimer’s Breakthrough Act of 2009.
S.1492 and H.R.3286
To amend the Public Health Service Act

Ask to prove us wrong when we think “they won't do squat to change things until they get a big campaign contribution from us”.

This is a great speech for EOAD, Tom. What is EROAD? Please let us know the feedback you get from the audience.

Iris L.

quote:

Originally posted by Iris L.:
What is EROAD?

Thanx for asking! I will try to make it clear that I mean erode or to ware away.

Tom, great, great story!! You will rule the room!!

Wow Tom you are amazing!

Wow TTom!

You will do us proud. Hopefully, your local congressman/woman will be responsive. Have them write a letter regarding the "need" to act NOW!

My local congresswoman did just that for me, Shelley Moore-Capito. Senator of WV.

Let them see and hear your physical difficulties for there's no shame in it! Besides, Michael J Fox does!

Good luck to you, we, expect a report of the staging ASAP!

M

Guess what people.... I let us all down. I had marked the Memory Walk down as being today but when we turned on the news this morning they were reporting on the sucessfull walk yesterday.
We went down to the island anyway at the right time just to find that I was 24 hours late. Bummer dude! Bet they won't invite me next year.

quote:

Originally posted by Ttom:
Guess what people.... I let us all down. I had marked the Memory Walk down as being today but when we turned on the news this morning they were reporting on the sucessfull walk yesterday.

Oh Tom,

I thought I was the only one that could happen to. You may have read in one of my previous posts that I had a similar event. I was asked to speak at a candlelight ceremony for the Alz Assoc last November. I was a day late.

Remember, the pain of this will pass, You may be down, but ya ain't out my brother!

Lynn

Oh, well, c'est la vie! (That's life!)

Iris L.

quote:

Guess what people.... I let us all down.

The heck you did!! Tom, you did your best. As we're learning, having dementia means that sometimes our best won't be enough. And Tom my friend, we have to find a way to live with that.

I haven't figured it out yet, but I'm trying. C'mon Tom, try with me.

TTom

I most likely will do the same thing. Forget the date. My daughters will remind me---because it's on Halloween!

Please, let me ask you all something. Do all or any of you believe it is necessary to have second opinions for diagnosis? I'm back in WV with my daughters and will continue to go to my "original" primary physician.

Also, is it really necessary to even see a Neurologist? I'm tired of doctors. I want to get on with the life I have left.

I want to remain active with the Alzheimer's Association, here in WV and love on my grand kids!

What do "we" at our age, do to find housing that will take us EOAD'ers? Everything I have checked into, states that I must be 62+, witih or without a disability! I'm at a loss....

M

Mary, great question about second opinions. In my case, I was referred to additional doctors by my primary care doctor, where I guess you could say I got 2nd and 3rd opinions. But, the additional doctors were for treating me, not for a second opinion per se.

Regarding is it necessary, this is just my opinion, but yes I think it is necessary. There are so many treatable things that can look like dementia, by all means we need to see if that's going on.

Also, some forms of dementia respond to different medications.

That being said, there are some straightforward cases of dementia, where the diagnosis is perfectly clear. No need to have another doc look at the obvious, I suppose.

The age question, I've experienced the same frustration. I'm 54, likewise too young to get admitted to old folks' housing complexes. I'm not ready for that yet, but I thought checking ahead of time would be useful.

Can't help but wonder how many of us it'll take, before the available services catches up to our needs.

quote:

Originally posted by Advocation/Mary:
TTom

Please, let me ask you all something. Do all or any of you believe it is necessary to have second opinions for diagnosis?

Also, is it really necessary to even see a Neurologist?

What do "we" at our age, do to find housing that will take us EOAD'ers? Everything I have checked into, states that I must be 62+, witih or without a disability! I'm at a loss....
M

Mary,
My MD sent me for a 2nd opinion just to make sure that he was treating me correctly. The MD thought it was important so I have to agree. It seemed stupid to me but I understand!

The Neurologist I go to employees EEG testing which is not available at my MD's. If you are able to get EEG's at your MD then there is no good reason (in my mind) to go to a Nuerologist.

Housing is an issue that Im not brushed up on. I might start with the following link.

http://www.hud.gov/groups/disabilities.cfm