RSS Feed Print
Recently Dx. Early Onset Dementia
Lisa Ramey
Posted: Tuesday, June 24, 2014 10:32 AM
Joined: 6/20/2014
Posts: 160


Hello all,

I have been lurking for a few days now and decided to join. I have E.O.D. and I am 49.

I live in Metro Atlanta. I have been on Namenda for a month now, the titrated dose pack. I am up to 28 mg daily. It seems to be helping me. 

I am still somwhere in the Kubler Ross stages of grief, sorry I tend to speak nurse as I use to be one long ago. 

I look forward to becming an active member of the baord here.

Thanks,

Lisa


Kathy43
Posted: Tuesday, June 24, 2014 12:29 PM
Joined: 3/11/2014
Posts: 318


Welcome Lisa
Lisa Ramey
Posted: Tuesday, June 24, 2014 1:43 PM
Joined: 6/20/2014
Posts: 160


Thank you so much. I rreceived my copy of Still Alice today. So far I am engrossed!

Take care

Lisa Ramey


Paul Hornback
Posted: Tuesday, June 24, 2014 2:54 PM
Joined: 8/9/2013
Posts: 584


Welcome to the boards Lisa. You'll find lots of great advice here from folks living the EOAD. I've been living with it for over 4 years now. I take Namenda and the Excelon Patch. I'm sure you'll also hear about the Best Practices. They have been my life saver as I try adhere to them as much as possible.

 

I hope you can continue to stay connected and build a rapport with folks on the boards.

 

God Bless, Paul


Iris L.
Posted: Tuesday, June 24, 2014 5:41 PM
Joined: 12/15/2011
Posts: 18512


Welcome to our online support group, Lisa.  I'm sorry you have to be here, but I'm glad you found us.

Can you tell us how you came to be diagnosed as EOAD?  It's not easy to make a diagnosis of EOAD because there are so many diseases and conditions that mimic dementia. 

Can you tell us your work status?  You mention in your profile that you were a nurse.  I was a pediatrician before I became ill.  There are many doctor and nurse members here.

Please feel free to post your questions and concerns.  We are here to help and support!

Iris L.

Lisa Ramey
Posted: Tuesday, June 24, 2014 6:49 PM
Joined: 6/20/2014
Posts: 160


Hello Ms. Iris,

I am not sure where to begin. I had continued trouble walking and difficulty remembering new things. So a friend at school got me in to the Neuro she works for. 

Great practice. I was thinking Multiple Sclerosis and upon initial exam Neuro agreed, but added Fibromyalgia as an alternitive Dx. So off I go to Nerve conduction Cog. Testing and MRI Brain /without contrast..

Well Nerve conduction fine, MRI fine no atrophy, but cog test failed. Especially the Spatial Recognition Portion. I knew the Stroop Color Test as I had taken it before, 2 yrs ago in College. I failed it then really bad. Oh yes I am in undergraduate school.

So after being told I failed these test I was put on the titrated doses of Amenda, Given Lyrica to replace gabbapentin and sent to do blood tests.

The good old RPR, Sed Rate, C Reactive Protein, RF, B-12-Folate TSH Third Generation. All Clear/Neg.

So I go back Fri for followup on my Namenda I guess. The Dr. will not call this Alz. She told me the whole biopsy story......  just Dementia. 

She wanted me to check into the genetic component and sure enough its there.

So here I sit at 49 not knowing what has happened to me or will happen to me.

Take Care 

Lisa


Myriam
Posted: Tuesday, June 24, 2014 8:07 PM
Joined: 12/6/2011
Posts: 3326


Another welcome, Lisa! Am sorry for what brings you here, but you will find this board to be supportive, informative and understanding. We are all on a similar path. It is crucial that you follow best practices to stay at your best level. Best practices includes eating a Mediterranean diet, strenuous exercise, staying socially active, and taking medications as directed. If you do a search on this board for "Best Practices", you will find great info. 


 

Some of us also do aroma therapy. I find it has helped me greatly. I've remained in the early stage for the last 5 years in part because of aroma therapy, but in particularly because of best practices. There is a great deal of information on the beneficial effects of aroma therapy on the Clinical Trials board. 


Lisa Ramey
Posted: Tuesday, June 24, 2014 9:55 PM
Joined: 6/20/2014
Posts: 160


Dear Myriam,

Thank you for the warm welcome. Honestly right now I am doing well to just take my meds. I have not even begun the fight yet. Frankly I am tired and overwhelmed.


tinkerbelly
Posted: Wednesday, June 25, 2014 12:31 PM
Joined: 3/19/2014
Posts: 3


Good Afternoon, I am trying to deal with dementia on a day by day basis.  Before this I was pursuing my PhD in higher education.  unfortunately I realized that I had problems.   I didn't realize that dementia could include people that are so young.  I have had a long commitment with healthcare as a nurse and then a teacher of LPNs and RNs.  I am very fortunate to have a patient husband that helps me to finish my sentences and thoughts.  Also, helps me to find my things that I have lost. 

 

sincerely mandy


Lisa Ramey
Posted: Wednesday, June 25, 2014 1:37 PM
Joined: 6/20/2014
Posts: 160


Dear Mandy,

Nice to meet you. I too have the greatest husband in the world. I was headed to Ph D.  but now who knows? Perhaps I will know more on my next visit to the Neuro.

Lisa


Iris L.
Posted: Wednesday, June 25, 2014 11:03 PM
Joined: 12/15/2011
Posts: 18512


Personally, I would not accept a diagnosis of dementia in a person under age 65 without a lot of confirmation.  Not that Younger Onset Alzheimer's Disease doesn't exist, but there are so many diseases and conditions that mimic dementia.  It's very important to have a thorough medical evaluation because so many conditions are treatable if caught in time.  Another member's LO has had undiagnosed normal pressure hydrocephalus for several years, which could be treated surgically.  Now the patient cannot be treated.

In my case, my diagnosis is cognitive impairment not otherwise specified.  This means the cognitive impairment is from another condition besides Alzheimer's disease or the other more frequent dementias.  In my case, systemic lupus and antipshospholipid syndrome.  I'm still learning about this condition.  Lane Simonian, another member, posted some information just the other day about it.

I am on the same medication for Alzheimer's disease, but I don't have Alzheimer's disease, as far as I know.

What difference does it make?  There may be some known risk factor that can be modified.  My condition involves the use of an anticoagulant, which I have been on for several years, off and on, depending upon whether or not I have easy bruising.

I discovered another condition that contributed to my poor cognitive functioning, which was sleep apnea.  After treatment with CPAP, some of my tests on neurocognitive testing improved.  Not all improved, some declined, so they could not attribute all of my cognitive impairment to sleep apnea. 

The diagnosis of Alzheimer's disease or other dementia is a rule out diagnosis, after other conditions have been searched for and ruled out.  This is because there is no definitive test for Alzheimer's disease.

One of the ways of confirming the diagnosis of Alzheimer's is to observe  the patient's progress over time.  There is a great deal of variability in patient progress.  The Alzheimer's Association has a saying, "If you've seen one Alzheimer's disease patient, you've seen one Alzheimer's disease patient."

Following Best Practices can modify the progression.   This is especially true the earlier treatment begins.  Early diagnosis is only now becoming prevalent.  We are the test generation.  We can modify the course of cognitive impairment and early dementia!  What hope we have! 

I have been stable for the past five years!  I was told five years ago that I had seven years to live, by someone who just didn't know.  There is hope for us.  You will only find hope on the pages of this message board.  People in the outside world, including many professionals are unaware of anything I have written about above.

Keep searching until you find answers for yourselves.  There is hope for you.  Your life won't be the same but it can be better than it is now.

Iris L.


Lisa Ramey
Posted: Thursday, June 26, 2014 9:53 AM
Joined: 6/20/2014
Posts: 160


Ms Iris;

I really appreciate your wisdom and advice. For me I feel my Dx. is spot on and again some things we just know by instinct. I am ok with it. I have been incontact with a social worker from the Atl. office who is answering my ramblings and concerns.

I could not agree more with your observation that we are the test generation.

Can I add that for me as a nurse it is very difficult not to address you as Dr. it seems disrespectful of me not to address you this way. Ah nursing..... some things are there forever. Keep that wisdom coming, I love learning.

Lisa Ramey


alz+
Posted: Friday, June 27, 2014 6:43 AM
Joined: 9/12/2013
Posts: 3608


LOVE nurses.

 

Lucky you have loving husband willing and able to support you through this.

 

I can say that exercise makes a huge difference in my mental functioning, particularly swimming. There is a pool open all winter, in summer I walk and bought a rowing machine which is both strengthening and sedating.

 

Even if you have a dementia, keeping your environment calming and comfortable, safe shelter will help too. Sometimes I am hit by a wave of ALZHEIMER'S? ARE YOU KIDDING ME? that knocks me over, I mean kaboom. Each new change sort of shakes me up and then I realize, well it was going to be one thing or another.

 

Iris is like the best doctor ever for FREE on these boards, although she does not post as a physician. You seem so strong and stable, your future posts will benefit many people. Wishing you the best.

 

Note: i was "diagnosed" with MS 25 years ago, then had it changed to Fibromyalgia 12 years ago. Since there were no real treatments I used massage, walking, dogs, long sleeps, good work and low commitments to do better over the years. I kind of suspect Lyme since it all started after a "spider bite" hole appeared on my back and at the time no one was interested in that and still aren't.

Doesn't hurt to keep an open mind that what you have may be treatable? Then there are those hours when I think I AM NORMAL AGAIN! only to have that fade away.

Love and courage


Lisa Ramey
Posted: Friday, June 27, 2014 8:26 AM
Joined: 6/20/2014
Posts: 160


Dear Alz+

Thank you for that sage advice. I could not agree more, Ms. Iris is a wealth of knowledge and wisdom. I spent the early morning reading her older/earlier post and got a lot out of them.

When you mentioned MS and Fibro. wow that is what I went to the Neuro for in the first place. The test indicated no MS but fibro and the dementia DX came out of left field. But it does explain so many things. Word retrieval and such

I have my first visit with the Neuro since being told "DEMENTIA" so I have a litany of questions for her this very afternoon. 

A pleasure to meet you I look forward to speaking with you again soon. I too along with others wish you all the best. I am so sorry you have had such a difficult time.

I spent part of my morning reading your post as well. You are amazing. You just keep on keeping on. What courage and strength. I stand in AWE of your inner fortitude. An example indeed for us. I also am impressed at the support you received here. I have noted a great group of individuals here. So many forums are just full of the Judgemental types and know it alls; here is so different and that is so refreshing.

I feel so blessed to be a part of this forum. My first one by the way.

Take Care,

Lisa Ramey 


Lisa428
Posted: Saturday, June 28, 2014 11:32 AM
Joined: 12/5/2011
Posts: 795


Welcome Lisa,

 

My name is Lisa also.  I was diagnosed with Younger-Onset Alzheimer's @53.

 

I did go through a litany of tests and doctors before I agreed with their diagnosis.  I was an RN too.  Please, make sure your doctor specializes in AD/dementia.  This is very important.

 

Welcome to OUR family.  You are NOT alone.  We are here.

 

Good Luck.  Please, keep posting.

 

Peace and Hope,

Lisa


Lisa428
Posted: Saturday, June 28, 2014 11:39 AM
Joined: 12/5/2011
Posts: 795


Dear Tinkerbelly/Mandy,

 

Welcome to the Alzconnected Message Boards.  I'm sorry for what brings you here but I am glad you've found us.

 

Please share more about yourself.

 

We do have a toll free 24/7 Helpline @800-272-3900.

 

I have EOAD/Younger-Onset AD. 

 

There are many good people on these boards that would love to help you.

 

Take Care.  Welcome to OUR family.  You are NOT alone.  We are here.

 

Peace and Hope,

Lisa


Lisa Ramey
Posted: Saturday, June 28, 2014 1:40 PM
Joined: 6/20/2014
Posts: 160


Lisa

Thank you so very much. I do indeed have a specialist. I trust her. As a nurse my homework is complete long bbefore my appointments✳

I appreciate your advice, I am of the notion that wisdom is a blessing thus I heed my blessings

Take care look forward to talking again soon. At some point I have some questions I would like to ask you. Just not ready got.

Lisa


Mimi S.
Posted: Saturday, June 28, 2014 2:19 PM
Joined: 11/29/2011
Posts: 7027


Lisa,

Another welcome.

You might want to get from your library a copy of: Doraiswamy and Gwyther's The Alzheimer's Action Plan. They are associated with Duke Univ. Reading it may explain why several people have asked about the completeness of your diagnostic process. There is also a bit in the book about other forms of dementia and first steps once diagnosed.
Another good book is by Lisa Snyder, director of the Shiley-Marcos Alzheimer's Disease Research Center, San Diego: Living Your Best with Early Stage Alzheimer's. She also publishes a free on-line magazine: Perspectives.
The brain scan was most likely to exclude Hydrocepahlus which someone else wrote about. It would be unusual for AD signs to show up while one is still in the earlier stages, although small strokes might.
I'm delighted you are in contact with your local chapter. Are there any support groups for you in the area? There certainly should be some for hubby. My state has several phone support groups for caregivers ad those with the disease. In my opinion, not as good as face-to-face, but good along with reading and responding here.
Take care

Lisa428
Posted: Friday, July 11, 2014 10:09 AM
Joined: 12/5/2011
Posts: 795


Dear Lisa,

 

Just wanted to say hi.  How are you doing?

 

Glad you are following good advice.

 

Please, keep posting to let us know how you are doing.

 

Peace and Hope,

Lisa


JackG
Posted: Tuesday, July 15, 2014 10:16 AM
Joined: 5/23/2014
Posts: 30


One more suggestion to add to the good advice on this thread.  My personal physician was able to get my wife a substantial discount on a Amyloid PET scan.  We felt it was important to do the scan to confirm her diagnosis since she was age 54 and in excellent physical condition.  The scan runs $3k and is not yet covered by insurance.  He got us a voucher that made it a much more reasonable cost.

The scan did test positive and confirm the EOAD diagnosis so we now spend our time on constructively dealing with the disease rather than questioning it.  I do not regret taking the test.

Ask around... your neurologist, nurse and doctor friends or anyone connected to a MRI center.  The device and testing firms want to make this a main stream test and you may find the discount is there for the asking.

 


chucky22
Posted: Thursday, July 17, 2014 5:30 PM
Joined: 7/17/2014
Posts: 6


I have been reading some of the posts here and I receive the news today that I have Early-On Set Alzheimer's. I am 61, not the kind of retirement you think you will have. I knew things were wrong but when you hear the words "You Have Alzheimer's" you and your families life changes. I am so lucky I have a loving partner, she is my rock. I will be asking for information on legal, clinical trials and any info I can get. I am looking to interacting with all of you.

 

Chuck


Lisa428
Posted: Thursday, July 17, 2014 5:55 PM
Joined: 12/5/2011
Posts: 795


Hi Chucky22,

 

Welcome to the Alzconnected Message Boards.  I'm sorry that you have been diagnosed with EOAD but I am glad you've found us.

 

I am so glad you have a wonderful.  She will help you a lot.  She may want to go to the Caregiver's Site and post there.  Or the spousal forum??

 

Getting the diagnosis of EOAD was quite shocking to me.  I knew something was wrong but I never imagined Alzheimer's @53.

 

We do have a toll free 24/7 Help line to assist you.  I encourage you and your wife to read and research AD.  The more you know, the better you both can be prepared.

 

I am sorry for your diagnosis.  I am happy you're here.  Lots of wonderful people on these boards.  Lots of really good information.

 

Please, take care of yourself.  Follow Best Practices like taking meds on time, eating well, exercise your brain and your body, & continue to be social.

 

Please, keep in touch.  Welcome to OUR family.  You are not ALONE.  WE'RE HERE.

 

Peace and Hope,

Lisa


Myriam
Posted: Thursday, July 17, 2014 9:20 PM
Joined: 12/6/2011
Posts: 3326


Welcome! So great you can join us, but sad for the reason that brings you here. I was diagnosed at the age of 62. I'm now 67 and have remained in the early stage I believe because of Best Practices. If you do a search of these boards you will find lots of information on Best Practices.  

 

Here's a summary: 

 

Diet: Eat a Mediterranean Diet. 

 

Exercise: It doesn't have to be strenuous, for example, walking at least a half hour each day. 

 

Social Activity: Stay involved with family, friends and your community. Visit and post on these boards, too. 

 

Mental Activity: There are lots of on-line brain game sites. Here are some links:  

http://www.memory-improvement-tips.com/free-brain-games.html  

http://www.lumosity.com/ 

http://www.aarp.org/health/brain-health/brain_games.html 

 

Taking Medications as Directed 

 

 


Iris L.
Posted: Thursday, July 17, 2014 10:57 PM
Joined: 12/15/2011
Posts: 18512


Welcome to our online support group, Chucky.  This is the best place in the entire internet for people like us.  There is a lot to learn about caring for ourselves and staying in the early stages.  There is HOPE!

 Keep reading and posting.  We are here for you!
 

 

Iris L. 


tinkerbelly
Posted: Wednesday, July 23, 2014 7:14 PM
Joined: 3/19/2014
Posts: 3


Lisa I can sympathize with you experiencing ups and downs with life in general.  I am 54 years old I think.....I try to keep busy  but funds are not readily there....Trying to  pay for tests....for a definite diagnosis.....I have been a nurse for many years and know what I am against...I have known that something has been wrong but at that time I did not know what it was.  I am sure now. 

Mandy

 

 


Paul Hornback
Posted: Thursday, July 24, 2014 8:57 AM
Joined: 8/9/2013
Posts: 584


Chuck, welcome to our on-line support group for folks with Younger Onset AD. I was diagnosed at 55 and have been living with the disease for 5 years now. I too follow the Best Practices and it has made a world of difference in my functioning day to day. Still have "not so good" days every week but am able to deal with them pretty well.

I so glad you posted about your situation. Hang in there and remember there is still lots of good times remaining. Make the most of your good days and enjoy them.

God Bless, Paul


chucky22
Posted: Thursday, July 24, 2014 1:05 PM
Joined: 7/17/2014
Posts: 6


Thanks for the kind words. I am very blessed I have a loving family around me and am determined to enjoy the life I have. I have just started the New Nqmenda RX and have had no side effects along with Exelon Patch. Working hard to get through the brick wall that fell on me when the doctor told me that I have AD. Not there yet but I will get there. It is really helps hearing from all of you and your fight.

 

Thanks to All

Chuck


Iris L.
Posted: Thursday, July 24, 2014 3:19 PM
Joined: 12/15/2011
Posts: 18512


Chucky, at one time I fell into a deep depression when I was told I could have Alzheimer's disease.  What helped me was making a decision that if that were true, I wouldn't go down without a FIGHT.  This is what I'm doing with Best Practices and participating on this message board.   

 

Paul is right, there are good days ahead.  I think it is very important to be in contact with people like ourselves, because we are encouraging.  The outside world only knows negativity about dementia and they can be very pessimistic and discouraging.  They do not know those of us who are on this board!  We are positive and encouraging.  We support each other!

It is important to learn how to make accomodations in order to function better and to live a better life.  It is important to anticipate problems and make plans for them or necessary adjustments.  It is important to learn new communication with family members and the outside world.  It is important to plan for the future. 
 

 

These are the ways we are treating dementia.  There is much we can do to help ourselves. 

 

So Chucky, I hope you reach out for support when you are feeling low.  You are not alone.  We understand what you are going through.

Iris L.
 


chucky22
Posted: Friday, July 25, 2014 12:17 PM
Joined: 7/17/2014
Posts: 6


Thanks for the words of wisdom. I will fight the disease with every fiber of my being. I am doing the Best Practices and will never stop doing everything I can do.

We are reading everything we can find concerning this.

 

Chuck


flyingEagle1
Posted: Tuesday, August 19, 2014 10:33 PM
Joined: 7/8/2014
Posts: 15


HI I TOOK A MRI AND WAS TOLD I HAVE THE BRAIN OF A 75 YEAR OLD AND I'M ONLY 58. I HAVE BEEN SEEING SIGNS OF DEMENTIA FOR OVER FIVE YEARS. WHAT ELSE DO I NEED TO DO AS IN SEEING ANOTHER DOCTOR? I  AM EATING VEGGIES, FRUITS, EXERCISE. FISH. HAVE GOOD DAYS AND BAD. PRAYING FOR HEALING.

Iris L.
Posted: Wednesday, August 20, 2014 3:18 AM
Joined: 12/15/2011
Posts: 18512


Welcome to our online support group, flying Eagle.  Can you tell us how you came to get the MRI?  What has the doctor who ordered the MRI told you?  Have you had any blood tests done?  Have you had any neurocognitive testing done?  All of these are important in making a diagnosis.  There are many mimics of dementia that need to be ruled out before a diagnosis can be made.

In the meantime, continue to live a healthy lifestyle.  Also, check all medications you are on for memory side effects, including non prescription drugs.  Medications and interactions between medications are a big cause of memory loss in your age group.  You can check on the www.rxlist.com and www.drugs.com/drug_interactions.php websites.

 

Have you been tested for sleep apnea?  Also a cause of cognitive impairment.  If there is a history of depression, this needs to be treated aggressively. 

 

If, after the results of a thorough evaluation, the diagnosis is Alzheimer's disease, there is hope.  There are medications that can help improve your memory and make it easier for you to function.   

 

You did not say if you are still working.  If so,  you might think about requesting a medical leave of absence pending results of testing.  Then you will have time to make decisions about your future. 

 

Please come back and let us know more about yourself.  Feel free to begin your own thread by clicking on "Add Topic" on the main Younger Onset page. 

 

Iris L. 

 

 


Myriam
Posted: Thursday, August 21, 2014 1:08 PM
Joined: 12/6/2011
Posts: 3326


Hi, flying Eagle! It sounds like you may be following best practices. That's great. We're here to help each other and to provide feedback. Do you do any exercising, like walking around your neighborhood? Looking forward to hearing more from you.