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Younger-Onset AD or Other Dementia
Newbie and questions
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.
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.
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.
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
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!
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.
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.
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.
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.
alz+'s earlier posts:http://www.alzconnected.org/discussion.aspx?tid=2147506096&g=posts&t=2147506108
Please review Myriam's post above--she has a strong genetic component--more good advice there. Iris L.
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.
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.
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.
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:
University of Michigan Neuroscience:
Henry Ford Neuroscience Institute:
Spectrum Health Memory Clinic
Here is an additional compendium of suggested research centers that conduct assessments and diagnosis:
University of Alabama at Birmingham
Alzheimer’s Disease Research CenterUniversity of Alabama at BirminghamSparks Research Center1720 7th Avenue South, Ste. 650KBirmingham, AL 35233-7340Website205-934-3847
Sun Health Research Institute/Arizona Consortium
Arizona Alzheimer’s Disease CenterBanner Alzheimer’s Institute901 E. Willeta StreetPhoenix, AZ 85006Website602-239-6525
University of Arkansas for Medical Sciences
Alzheimer’s Disease CenterDonald W. Reynolds Department of GeriatricsUniversity of Arkansas for Medical Sciences4301 W. Markham, Slot 811Little Rock, AR 72205-7199Website501-603-1294
University of California, Irvine
Alzheimer’s Disease Research CenterUniversity of California, IrvineGillespie Neuroscience Research Facility, Rm. 1113Irvine, CA 92697-4540Website949-824-5847
University of California, Los Angeles
Alzheimer’s Disease Center10911 Weyburn Avenue, Ste. 200Los Angeles, CA 90095-1769Website310-794-6039
University of Southern California
Alzheimer’s Disease Research CenterUniversity of Southern CaliforniaHealth Consultation Center1510 San Pablo Street, HCC643Los Angeles, CA 90033Website323-442-7600
Stanford/VA Alzheimer’s Disease CenterDepartment of Psychiatry3801 Miranda Avenue (151Y)Palo Alto, CA 94304Website650-852-3287
University of California, Davis
Alzheimer’s Disease CenterDepartment of NeurologyUniversity of California, Davis4860 Y Street, Suite 3900Sacramento, CA 95817Website916-734-5496
University of California, San Diego
Alzheimer’s Disease Research CenterDepartment of NeurosciencesUCSD School of Medicine9500 Gilman Drive (094La Jolla, CA 92093-0948Website858-622-5800
University of California, San Francisco
Alzheimer’s Disease Research CenterUniversity of California, San Francisco, Box 1207350 Parnassus Avenue, Suite 905San Francisco, CA 94143-1207Website415-476-6880
Florida Alzheimer’s Disease Research Center/Byrd Alzheimer’s Institute
Florida Alzheimer’s Disease Research CenterByrd Alzheimer’s Institute4001 East Fletcher AvenueTampa, FL 33613Website866-700-7773 (toll free)
Alzheimer’s Disease CenterWesley Woods Health Center, 3rd Floor1841 Clifton RoadAtlanta, GA 30329Website404-728-6950
Cognitive Neurology and Alzheimer’s Disease CenterFeinberg School of MedicineNorthwestern University675 N St. Claire, Galter 20-100Chicago, IL 60611Website312-908-9339
Rush-Presbyterian-St. Lukes Medical Center
Alzheimer’s Disease CenterRush University Medical CenterArmour Academic Center600 South Paulina Street, Suite 1028Chicago, IL 60612Website312-942-3333
Indiana Alzheimer Disease CenterDepartment of Pathology and Lab MedicineIndiana University School of Medicine635 Barnhill Drive, MS-A-138Indianapolis, IN 46202-5120Website317-274-1590
University of Kentucky
University of Kentucky Alzheimer’s Disease CenterSanders-Brown Center on Aging, Rm. 101800 South Limestone St.Lexington, KY 40536-0230Website859-323-6040
The Johns Hopkins Medical Institutions
Alzheimer’s Disease Research CenterDivision of NeuropathologyThe Johns Hopkins University Medical Institutions558 Ross Research Building720 Rutland AvenueBaltimore, MD 21205-2196Website410-502-5164
Boston University Medical CenterAlzheimer’s Disease Clinical & Research Program72 East Concord Street, B-7800Boston, MA 02118Website888-458-2823 (toll free)
Harvard Medical School/Massachusetts General Hospital
Alzheimer’s Disease Research CenterMassachusetts General Hospital114 16th Street, Room 2009Charlestown, MA 02129Website617-726-3987
University of Michigan
Alzheimer’s Disease Research CenterDepartment of Neurology300 North Ingalls, Room 3D15Ann Arbor, MI 48109-0489Website734-764-6831
Alzheimer’s Disease Research Center4111 Highway 52 NorthRochester, MN 55901Website507-284-1324
Alzheimer’s Disease Research CenterWashington University School of MedicineDepartment of Neurology4488 Forest Park Avenue, Suite 130St. Louis, MO 63108-2293Website314-286-2881
>> NEW YORK
Columbia University Alzheimer’s Disease Center630 West 168th Street, P&S 15-402New York, NY 10032Website212-305-1818
Mount Sinai School of Medicine/Bronx VA Medical Center
Alzheimer’s Disease Research CenterDepartment of PsychiatryMount Sinai School of MedicineOne Gustave Levy Place, Box 1230New York, NY 10029-6574Website212-241-8329
New York University
NYU Langone Medical CenterCenter of Excellence on Brain Aging145 E 32nd St, 5th FloorNew York, NY 10016Website212-263-8088
>> NORTH CAROLINA
Joseph and Kathleen Bryan Alzheimer’s Disease Research Center2200 West Main StreetSuite A-200Durham, NC 27705Website866-444-2372 (toll free)
Case Western Reserve University
University Memory and Aging CenterUniversity Hospitals of ClevelandCase Western Reserve University12200 Fairhill RoadCleveland, OH 44120-1013Website800-252-5048
Oregon Health and Science University
Layton Aging and Alzheimer’s Disease CenterCenter for Health and Healing3303 SW Bond AvenuePortland, Oregon 97239Website503-494-7772
University of Pennsylvania
Alzheimer’s Disease CenterDepartment of Pathology and Laboratory MedicineUniversity of Pennsylvania School of MedicineHUP, Maloney 3rd Floor36th and Spruce StreetsPhiladelphia, PA 19104-4283Website215-662-7810
University of Pittsburgh
Alzheimer’s Disease Research CenterUniversity of PittsburghUPMC Montefiore, 4th floor, suite 421200 Lothrop StreetPittsburgh, PA 15213-2582Website412-692-2700
University of Texas, Southwestern Medical Center
Alzheimer’s Disease Research CenterDepartment of NeurologyUniversity of Texas SW Medical Center5323 Harry Hines BoulevardDallas, TX 75390-9036Website214-645-8800
University of Washington
Alzheimer’s Disease CenterVA Puget Sound Health Care SystemMental Health Services, S-116 6 East1660 South Columbian WaySeattle, WA 98108Website800-317-5382