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Newbie and questions
rorysa
Posted: Monday, May 12, 2014 10:44 AM
Joined: 5/12/2014
Posts: 4


Hi everyone. So Im facing the dreaded realization that Ive started Alzheimers. Im only 48 but I found out last year that I have a very high risk to get the disease due to genetic testing and found out I have the ApoE4 genes.I really tested for cholesterol reasons not memory issues and found out I have these genes. So 5 months later, I started experiencing symptoms like multitasking issues. I wrote this off to stress at work and an upcoming move across state.

Then 3 months ago I started noticing the brain foggy days and having a hard time concentrating and doing some stupid things here and there. My vision has also gotten worse. I had an MRI done which showed nothing. Some days are okay and others it feels really bad.

 

So I did a lot of online tests like MMSE and such which I realize are silly. I then got a hold of a more thorough cog test which took 30 minutes and showed that I have issues in the memory department. All other areas like executive function, working memory, reasoning, reaction time etc are all good. In many of those areas it put me above normal.

The memory thing is interesting as various tests like remember "x" amount of words and write it down I do okay at as I normally put some sort of story or association to remembering them, but this specific test flashed you 15 words and then afterwards shows you 30 words and asks you to identify which ones were shown and I dont do well at that. Its like I have a hard time even recognizing some of the middle words in the list and only manage about 10-11. 

But I also have a great deal of anxiety taking these types of tests and Im scheduled to go for the 6 hour ones next week but Im extremely anxious about it. Just in the ones at home, if for example the words start appearing and I start panicking about remembering them, that's it, I know Im not going to do well.

I think my executive functioning etc. is good because I practice on lumosity etc. so it wasnt foreign to me when I took the test.

For anyone whos taken these tests, do you have any advice as Im petrified?


Oh and I got my normal GP to refer me for this and Im scheduled to see a neurologist a week after.


alz+
Posted: Monday, May 12, 2014 12:40 PM
Joined: 9/12/2013
Posts: 3608


Welcome friend.

I was part of a research project for 10 years and took the cognitive tests (about 4 - 5 hours) and blood stuff and scans several times.

Alzheimer's runs in my family but I am only one of cousins to have it so far.

The tests are interesting. You are not going to fail at anything, and the person administering them are always friendly professional types.

On last test I struggled and was very anxious as the symptoms had become evident. There was a big drop from the previous test and with the diagnosis I was dropped from project.

Even anxious at the last test it was still interesting, some joking, a break whenever I wanted, and last test was on a tower room with a view.

I would imagine what you are nervous about is what the test results would mean if you did not ace them.

You will soon get responses from very knowledgeable people who you can count on for solid support in future. I am now down the road a bit, I was shocked when neurologist told me, yes, you have Alzheimer's. I got the diagnosis because of vision problems which led to the brain scans and so on.

It has been 8 months (?) since I got diagnosed and looking back can identify vague anxieties from things taking a bit longer to process. No way I could have defined it at the time it began.

I am looking at the disease with a different perspective than some, believe we do not lose ourselves but go more into the body mind and spirit consciousness.

48 is very young. There are other conditions that cause memory slippage so remember to breathe, relax, have some fun with the puzzles and colors and stuff. Could by nothing, could be fixable. Find a person to go with you, make some fun out of the day. And for the rest of your life make some fun out the day, breathe, relax. You are loved and safe. Always.


rorysa
Posted: Monday, May 12, 2014 1:22 PM
Joined: 5/12/2014
Posts: 4


Hi alz+. Yes, of course its the diagnosis and not the tests themselves.

 

Im just not sure how I can relax as Im sure the anxiety makes it all worse! But oh well. I guess in my surprise, Im amazed at how quickly these symptoms have come on and was always under the impression, Alz. was a more slower progression, but I guess everyone's different.


Myriam
Posted: Monday, May 12, 2014 3:05 PM
Joined: 12/6/2011
Posts: 3326


Welcome to these Boards, rorysa!!  I'm sorry for what brings you here. The Presenile 1 gene runs in my family, which also causes early onset Alzheimer's. It was a real bummer when I started to have symptoms. You may have read on these boards about how best practices can help you. Best practices include: 

Eating a Mediterranean Diet 

Staying socially active 

Strenuous exercise 

Taking medications as directed 

 

Some of us also find that aroma therapy helps. If you read through the Clinical Trial board, you will find great information on aromas that help with symptoms of Alzheimer's and other dementia posted by Lane Simeone (Don't know if I spelled his name correctly). It's been 4 years since my diagnosis and believe that aroma therapy and best practices have kept me in the early stage. 

 

Looking forward to hearing more from you! 


Iris L.
Posted: Monday, May 12, 2014 3:08 PM
Joined: 12/15/2011
Posts: 17580


Good advice from alz+.

Anxiety will worsen your cognition and performance on the testing.

Look into stress relief techniques, whatever works for you.

How are you doing on your job and in managing your finances? 

Look into finding a trustworthy person to be your power of attorney for medical and for finances now. 

At your age it's probably not dementia.  What has your doctor told you?  Make sure you are thoroughly evaluated for all medical conditions that cause memory loss.  Check out all medications for cognitive side effects.  Check alcohol and recreational drug use.

Best wishes to you.

Iris L.


rorysa
Posted: Monday, May 12, 2014 3:38 PM
Joined: 5/12/2014
Posts: 4


Thanks Myriam and Iris!

 

Well I struggle more in my job and have found Im not as thorough and miss stuff more easily. I would never have believed I was starting dementia if I didnt know that my risk for Alz is close to 90% I believe, based on my lovely ApoE4 genes. Although not really implicated in EOA, they do say it occurs earlier in those who are homozygotes. 

Ive had a very stressful year, one learning about my genetics which Id have to say was probably the biggest stress event in my entire life for me and then work and moving combined, I do believe that this all was a trigger for me. Ironically I had started on a cholesterol blocker medication about the same time I noticed symptoms starting. However, it was not a statin and considered as the alternative for people who cant tolerate statins. Ive been off it now for about 6 weeks to see if it was the culprit but have not noticed any improvement.

Yeah, Ive always been a stress ball over my health. Well my GP of course didnt think anything and I pushed him for the testing. Ive yet to see the neuro. 


Iris L.
Posted: Monday, May 12, 2014 4:30 PM
Joined: 12/15/2011
Posts: 17580


Rorysa, I'm also positive for the APOe4 gene.  The risk of developing Alzheimer's disease is higher than for those without the gene, but it is NOT 90%!

The major risk of developing AD (Alzheimer's disease) is advanced age.  Not that younger people don't get it, but the risk is very low.

The diagnosis of AD is a rule-out diagnosis.  The doctors must rule out all other potential causes of the patient's memory loss.  Having a specific gene is not a cause of AD, it is only something that helps to confirm the diagnosis if other signs exist that point towards AD.

Have your doctor look into hormonal and nutritional deficiencies and disorders, and check your meds, as I said before.  But the biggest cause is anxiety/stress.  You might need professional help for this, I don't know.  By all means, go for your neurocognitive testing. 

There is a great book, The Alzheimer's Action Plan, by Doraiswamy and Gwyther.  It has the steps involved in evaluation to make a diagnosis.  You may be able to find it at your local library.  Check it out.

Cardiovascular changes can cause dementia, called vascular dementia.  It is imperative to control cardiovascular risk factors, including high cholesterol.  Look into non-drug measures to control your cholesterol.  Some people have familial hypercholesterolemia or other conditions and are unable to reduce cholesterol naturally.  Discuss this with your doctor.
 

 

It will help you to begin to simplify your life and limit multitasking.

Also, read alz+'s posts from this morning--they will give you a different perspective.

Iris L.

 

 


rorysa
Posted: Monday, May 12, 2014 4:46 PM
Joined: 5/12/2014
Posts: 4


Thanks Iris. 

Youre right about the later onset, but I also have 2 copies of the gene, not just one. 

Thanks for the advice, I will check the book out. 

Ive had a lot of blood work done that checks out okay too. 

 

I think I do need to also see someone for my stress in life and one step Ive taken is starting some meditation.


Iris L.
Posted: Monday, May 12, 2014 5:27 PM
Joined: 12/15/2011
Posts: 17580


alz+'s earlier posts:
http://www.alzconnected.org/discussion.aspx?tid=2147506096&g=posts&t=2147506108  

  

http://www.alzconnected.org/discussion.aspx?tid=2147506096&g=posts&t=2147503631   

 

Please review Myriam's post above--she has a strong genetic component--more good advice there.  

Iris L.
 

  


llee08032
Posted: Sunday, May 25, 2014 8:12 AM
Joined: 5/20/2014
Posts: 4408


Looking for online memory tests any suggestions?
Iris L.
Posted: Sunday, May 25, 2014 2:26 PM
Joined: 12/15/2011
Posts: 17580


I answered more in your other post, Ilee.  Don't rely on whatever online tests you might find.  You have been with your neurologist for 9 months.  Your neurologist can refer you to a certified neuropsychologist who can administer a 6 hour set of testing to determine your cognitiv status.

 

Iris L.


llee08032
Posted: Monday, May 26, 2014 6:39 AM
Joined: 5/20/2014
Posts: 4408


OMG 6 hours! Grueling! I am not the most compliant patient and still have not had the sleep study despite neuro persisting I have it done.Thanks, Iris
Iris L.
Posted: Monday, May 26, 2014 11:47 AM
Joined: 12/15/2011
Posts: 17580


Sleep apnea can be a cause of cognitive impairment due to limited oxygen getting to the brain.  It must be checked in a sleep lab.

The 6 hour test can be broken up.  My testing was actually spread over three days. 
 

 

Iris L. 


EB Thomas
Posted: Tuesday, May 27, 2014 9:45 PM
Joined: 5/27/2014
Posts: 3


I'm in my late 40's and recently got up the courage to discuss difficulties that have been increasing with my doctor. Many memory struggles, too many post-its to count, trouble multi-tasking, difficulty following multiple steps, struggle with directions and even a couple of episodes of feeling lost briefly when driving in familiar places to name a few. I also had my first poor work evaluation of my career and toil over the process of paying bills at home.

 

 Dad had AD and Mom is in advanced stage of AD. Due to these symptoms and family history, Doc started me on B12, B6 and Folic Acid and referred me for Neuropsych exam. Following testing, the neuropsychologist said I'm not on the level of AD but "there may be some mild cognitive impairment". I seemed to do fine with some tasks but had trouble with others. They suggested an MRI be done. Then mentioned I scored low on "effort" as my demeanor changed during testing and they didn't know why that was. Also recommended a couple sessions of counseling with another psychologist.

 

I am a bit confused and frustrated by the discussion of "effort" as I actually felt like I was trying very hard to complete the tasks and became scared when I was struggling.

 

Does anyone have any insight? Not sure what it all means and where to go from here.

 

 

 

 


Myriam
Posted: Tuesday, May 27, 2014 10:48 PM
Joined: 12/6/2011
Posts: 3326


Iris, may have more insight, but seems to me that not all doctors are alike. Just like not all lawyers are alike. Is your doctor a neurologist who specializes in diagnosing Alzheimer's and other dementia? Would you go to a tax attorney to defend you if you've committed a crime of violence? 


 

EB, I don't know in which state you live, but in another post, I listed highly regarded diagnostic clinics in the country. 

 

Here is a list of leading diagnostic centers: 

 

In Michigan: 

University of Michigan Neuroscience: 

http://www.uofmhealth.org/medical-services/dementia-and-alzheimers 

 

Henry Ford Neuroscience Institute:  

http://www.henryford.com/body.cfm?id=48876 

 

Spectrum Health Memory Clinic 

http://www.shmg.org/memory-disorders-clinic 


Here is an additional compendium of suggested research centers that conduct assessments and diagnosis:   


>> ALABAMA  

University of Alabama at Birmingham 

Alzheimer’s Disease Research Center
University of Alabama at Birmingham
Sparks Research Center
1720 7th Avenue South, Ste. 650K
Birmingham, AL 35233-7340
Website
205-934-3847
 

 

>> ARIZONA 

Sun Health Research Institute/Arizona Consortium 

Arizona Alzheimer’s Disease Center
Banner Alzheimer’s Institute
901 E. Willeta Street
Phoenix, AZ 85006
Website
602-239-6525
 

 

>> ARKANSAS 

University of Arkansas for Medical Sciences 

Alzheimer’s Disease Center
Donald W. Reynolds Department of Geriatrics
University of Arkansas for Medical Sciences
4301 W. Markham, Slot 811
Little Rock, AR 72205-7199
Website
501-603-1294
 

 

>> CALIFORNIA 

University of California, Irvine 

Alzheimer’s Disease Research Center
University of California, Irvine
Gillespie Neuroscience Research Facility, Rm. 1113
Irvine, CA 92697-4540
Website
949-824-5847
 

 

University of California, Los Angeles 

Alzheimer’s Disease Center
10911 Weyburn Avenue, Ste. 200
Los Angeles, CA 90095-1769
Website
310-794-6039
 

 

University of Southern California 

Alzheimer’s Disease Research Center
University of Southern California
Health Consultation Center
1510 San Pablo Street, HCC643
Los Angeles, CA 90033
Website
323-442-7600
 

 

Stanford University 

Stanford/VA Alzheimer’s Disease Center
Department of Psychiatry
3801 Miranda Avenue (151Y)
Palo Alto, CA 94304
Website
650-852-3287
 

 

University of California, Davis 

Alzheimer’s Disease Center
Department of Neurology
University of California, Davis
4860 Y Street, Suite 3900
Sacramento, CA 95817
Website
916-734-5496
 

 

University of California, San Diego 

Alzheimer’s Disease Research Center
Department of Neurosciences
UCSD School of Medicine
9500 Gilman Drive (094
La Jolla, CA 92093-0948
Website
858-622-5800
 

 

University of California, San Francisco 

Alzheimer’s Disease Research Center
University of California, San Francisco, Box 1207
350 Parnassus Avenue, Suite 905
San Francisco, CA 94143-1207
Website
415-476-6880
 

 

>> FLORIDA 

Florida Alzheimer’s Disease Research Center/Byrd Alzheimer’s Institute 

Florida Alzheimer’s Disease Research Center
Byrd Alzheimer’s Institute
4001 East Fletcher Avenue
Tampa, FL 33613
Website
866-700-7773 (toll free)
 

 

>> GEORGIA 

Emory University 

Alzheimer’s Disease Center
Wesley Woods Health Center, 3rd Floor
1841 Clifton Road
Atlanta, GA 30329
Website
404-728-6950
 

 

>> ILLINOIS 

Northwestern University 

Cognitive Neurology and Alzheimer’s Disease Center
Feinberg School of Medicine
Northwestern University
675 N St. Claire, Galter 20-100
Chicago, IL 60611
Website
312-908-9339
 

 

Rush-Presbyterian-St. Lukes Medical Center 

Alzheimer’s Disease Center
Rush University Medical Center
Armour Academic Center
600 South Paulina Street, Suite 1028
Chicago, IL 60612
Website
312-942-3333
 

 

>> INDIANA 

Indiana University 

Indiana Alzheimer Disease Center
Department of Pathology and Lab Medicine
Indiana University School of Medicine
635 Barnhill Drive, MS-A-138
Indianapolis, IN 46202-5120
Website
317-274-1590
 

 

>> KENTUCKY 

University of Kentucky 

University of Kentucky Alzheimer’s Disease Center
Sanders-Brown Center on Aging, Rm. 101
800 South Limestone St.
Lexington, KY 40536-0230
Website
859-323-6040
 

 

>> MARYLAND 

The Johns Hopkins Medical Institutions 

Alzheimer’s Disease Research Center
Division of Neuropathology
The Johns Hopkins University Medical Institutions
558 Ross Research Building
720 Rutland Avenue
Baltimore, MD 21205-2196
Website
410-502-5164
 

 

>> MASSACHUSETTS 

Boston University 

Boston University Medical Center
Alzheimer’s Disease Clinical & Research Program
72 East Concord Street, B-7800
Boston, MA 02118
Website
888-458-2823 (toll free)
 

 

Harvard Medical School/Massachusetts General Hospital 

Alzheimer’s Disease Research Center
Massachusetts General Hospital
114 16th Street, Room 2009
Charlestown, MA 02129
Website
617-726-3987
 

 

>> MICHIGAN 

University of Michigan 

Alzheimer’s Disease Research Center
Department of Neurology
300 North Ingalls, Room 3D15
Ann Arbor, MI 48109-0489
Website
734-764-6831
 

 

>> MINNESOTA 

Mayo Clinic 

Alzheimer’s Disease Research Center
4111 Highway 52 North
Rochester, MN 55901
Website
507-284-1324
 

 

>> MISSOURI 

Washington University 

Alzheimer’s Disease Research Center
Washington University School of Medicine
Department of Neurology
4488 Forest Park Avenue, Suite 130
St. Louis, MO 63108-2293
Website
314-286-2881
 

 

>> NEW YORK 

Columbia University 

Columbia University Alzheimer’s Disease Center
630 West 168th Street, P&S 15-402
New York, NY 10032
Website
212-305-1818
 

 

Mount Sinai School of Medicine/Bronx VA Medical Center 

Alzheimer’s Disease Research Center
Department of Psychiatry
Mount Sinai School of Medicine
One Gustave Levy Place, Box 1230
New York, NY 10029-6574
Website
212-241-8329
 

 

New York University 

NYU Langone Medical Center
Center of Excellence on Brain Aging
145 E 32nd St, 5th Floor
New York, NY 10016
Website
212-263-8088
 

 

>> NORTH CAROLINA 

Duke University 

Joseph and Kathleen Bryan Alzheimer’s Disease Research Center
2200 West Main Street
Suite A-200
Durham, NC 27705
Website
866-444-2372 (toll free)
 

 

>> OHIO 

Case Western Reserve University 

University Memory and Aging Center
University Hospitals of Cleveland
Case Western Reserve University
12200 Fairhill Road
Cleveland, OH 44120-1013
Website
800-252-5048
 

 

>> OREGON 

Oregon Health and Science University 

Layton Aging and Alzheimer’s Disease Center
Center for Health and Healing
3303 SW Bond Avenue
Portland, Oregon 97239
Website
503-494-7772
 

 

>> PENNSYLVANIA 

University of Pennsylvania 

Alzheimer’s Disease Center
Department of Pathology and Laboratory Medicine
University of Pennsylvania School of Medicine
HUP, Maloney 3rd Floor
36th and Spruce Streets
Philadelphia, PA 19104-4283
Website
215-662-7810
 

 

University of Pittsburgh 

Alzheimer’s Disease Research Center
University of Pittsburgh
UPMC Montefiore, 4th floor, suite 421
200 Lothrop Street
Pittsburgh, PA 15213-2582
Website
412-692-2700
 

 

>> TEXAS 

University of Texas, Southwestern Medical Center 

Alzheimer’s Disease Research Center
Department of Neurology
University of Texas SW Medical Center
5323 Harry Hines Boulevard
Dallas, TX 75390-9036
Website
214-645-8800
 

 

>> WASHINGTON 

University of Washington 

Alzheimer’s Disease Center
VA Puget Sound Health Care System
Mental Health Services, S-116 6 East
1660 South Columbian Way
Seattle, WA 98108
Website
800-317-5382
 

 
 

EB Thomas
Posted: Thursday, May 29, 2014 7:54 PM
Joined: 5/27/2014
Posts: 3


I have not been to a neurologist yet. It was my general practitioner that sent me for the neuropsych testing. I definitely have a lot of unanswered questions and research to do I guess.