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Husband is 44 with ALZ
dlindsey24
Posted: Sunday, April 14, 2013 10:58 PM
Joined: 12/28/2012
Posts: 1


 

Hello My husband is forty four and has early on-set. He was diagnosed last October, but he has had it at least five years. I always told him I felt like he died when his dad did. Now we know the trauma probably triggered it. It took so long to get diagnosed because they wouldn't test because of his age. I actually researched his symptoms and it all kept pointing to ALZ but doc know better and wouldn't listen. After falling and cracking his collar bone due to frontal lobe Silent seizures which we didn't know about. They did a cat scan on him and when he came out he didn't know why or how he got there. Then the doc lined the test up and finally diagnosed him. We both feel alone a lot. Even the info for earl on-set isn't made for someone so young. This is hard stuff to deal with! Is there anyone else out there with early on-set?


Myriam
Posted: Monday, April 15, 2013 12:11 AM
Joined: 12/6/2011
Posts: 3326


Yes, there are a few of us who are and I hope they will chime in.  I first noticed symptoms when I was 62 and knew right away it was Alzheimer's because it's genetic in my family.  Until my diagnosis, everyone else in my family who had Alzheimer's began to show symptoms in their mid-40's, including my father and six of my aunts and uncles, and two of my three 3 oldest cousins. There are others in my family with Alzheimer's, too.  When I turned 60, I thought I was safe, but.... 

 

Please contact the Alzheimer's Association chapter nearest to you by checking out this site...  

 

http://www.alz.org/apps/findus.asp?SearchState=TX&SearchByState=Search&FormSent=1#SearchStart 

 

...or call 800-272-3900.  They can provide you with a great wealth of information, not only for your husband, but for you, too, as his caregiver. 

 

I'm sorry for what brings you here, but so glad you found us. 

 

 


Mimi S.
Posted: Monday, April 15, 2013 8:47 AM
Joined: 11/29/2011
Posts: 7027


HI D. LINDSEY,

LIFE IS NOT FAIR!

 AND YOU ARE ALSO CORRECT THAT THOSE AS YOUNG AS YOUR HUSBAND DO HAVE A DIFFICULT TIME GETTING DIAGNOSED. THE DOCTORS JUST DON'T WANT TO GO THERE.

I DO HOPE THAT THROUGH THIS SITE, YOU DO FIND SOME OTHER PEOPLE IN YOUR AGE BRACKET. USUALLY, THESE WOULD BE THOSE WHO HAVE A PARTICULAR FAMILIAL GENE.


ARE THERE OTHERS IN HIS FAMILY WHO WERE DIAGNOSED THAT EARLY?


WHAT TESTS WERE GIVEN FOR THE DIAGNOSIS?


mish
Posted: Monday, April 15, 2013 10:09 AM
Joined: 6/21/2012
Posts: 439


hi I am 44 and I was dx officially last may . I am sooo sorry for yourself and your husband. yes it does suck, big time. this board   has been a saving grace for me.  Iris and everyone kicks butt and has been there for me alot, you get tons of invaluable info. I dont know what to say. I agree  that contacting the local ass. is extremly helpful and getting involved with them would be great. if I can be of any help let me know.

namaste.

mish


Lisa428
Posted: Monday, April 15, 2013 11:44 AM
Joined: 12/5/2011
Posts: 795


Hi D Lindsey,

 

Welcome to the Alz connected message boards.  I'm sorry for what brings you here but I'm so glad you've found us.

 

I was diagnosed with Young-Onset AD at age 53.  Not as young as your husband but still a real shocker.  I, too, had a difficult time being diagnosed.  It is very frustrating!

 

Please read and learn as much as you can about this disease.  This will help you a lot with dealing with your hubby.  Please, speak freely to others so they can help you.

 

Is your hubby on meds?  How is he holding up?

 

How are YOU holding up? 

 

I agree with the others about you and hubby getting involved with your local AD Chapter.  Join their support groups.  Make contacts and friends.

 

If you need to you can always get help by calling our toll free 24/7 Help line @800-272-3900.

 

Again, welcome to OUR family.  You are NOT alone.  We are here.

 

Please take care of yourself.

 

Peace and Hope,

Lisa


ilovemygrey
Posted: Monday, April 15, 2013 4:01 PM
Joined: 1/30/2013
Posts: 66


hi,, welcome to our group.. hope it helps U and your hubby! I know it will.. how did he get diagnosed so young? I am 60 , my grandmother had Alz.. when she was old.. and then she died at  95. I have Mild Cognitive Impairment.. but, I think I have early onset Alz.. I am waiting for my Dr to tell me that is what I do have... What tests did your hubby have to get diagnosed?? thanks, Lisa Culp
nomemo
Posted: Monday, April 15, 2013 7:47 PM
Joined: 3/21/2012
Posts: 439


i was diagnosed in 2007 at age 52 with dementia nos; then diagnosed in 2009 at age 54 with frontotemporal dementia.  this was because in the 2 year span between diagnosis, my neurologist knew that i had dementia, but wasn't sure what kind.  so had many tests, lumbar punctures, neuropsychological tests, SPECT scans, MRI's, CT scans....these all helped to make the definitive diagnosis of frontotemporal dementia (behavioral variant).  like most, i exhibited symptoms long before i sought out medical expertise. 

 

i live alone, with no caregiver, although i do have a small group of friends who help take me to appts., shopping, etc.  i now have a personal care aide come in one time a week, but that may need to be increased in the future.  a move to one floor living may be in the future, also, mainly for safety reasons.  i have fallen several times, and have received injuries.  from a patient's perspective, it can be very grueling at times....i have increased tiredness.....dr. says it's because of the illness but also because i'm fighting so hard that i'm emotionally tired.  but he added, "DON'T GIVE UP!"  that's not an option for me.....i'm doing what i can to stay out of a nursing home.  that includes my medical team of PCP, neurologist, neuropsychologist, neuropsychiatrist, cognitive therapist and personal therapist.

 

that being said, i also find tremendous support from this group.  even if i don't type on here often, i glean so much i.e. resources, information, support, encouragement, a laugh when i need it, someone to shed a tear with me, or someone to lift me up and support me.  i know that you'll find the same, too.

 

blessings to you.

 

 

 



Lesley Jean
Posted: Wednesday, April 17, 2013 1:47 PM
Joined: 2/13/2013
Posts: 2965


Yes, it is frustrating and so sad to get the diagnosis. Jerry was probably in his mid to late 40's when he first started showing symptoms. The navy doctor's misdiagnosed him. He was also having atypical seizures. He was diagnosed about 6 years ago with Hippocampus Sclerosis Syndrome, seizures and dementia.  This past Nov. he was then diagnosed with Early on-set AD. Even though we knew it would eventually come to that, we really had hoped it would take about 10 years or so.

It is so hard. We had so many plans that I don't think will ever develop-our trip to Alaska and taking our grandkids on a Disney cruise. I try to remember all my blessing and the wonderful life we have had together. I continue to tell myself that the Lord needs me learn from this experience, but I can't help but wonder why he couldn't have had us learn another way.

This site has been wonderful to me. It has kept me sane and going. It will help you and just remember, we are all in the same boat.


lpn12659
Posted: Wednesday, April 17, 2013 7:26 PM
Joined: 5/26/2012
Posts: 31


Hi, I'm 53yrs. old now. I lost my job a little over 2yrs ago because of memory and comprehension problems. I started having problems in my 40's but the Dr was calling it stress, post traumatic stress syndrome and then said I possibly picked up a virus while I was in Peru and it was attacking my brain. I never went back to that Dr.. After loosing my job I had several blood tests, MRI, CT Scan and finally a Pet Scan which showed that the dye  wasn't going to certain areas of the brain so I was diagnosed with young onset alzheimers. I also took several memory tests and can't pass them. I take aricept and namenda and have been helping out the alzheimers association which helps cause it keeps me busy so I don't get so depressed.
ilovemygrey
Posted: Friday, April 19, 2013 8:39 PM
Joined: 1/30/2013
Posts: 66


hi to all in Alz connected..i am happy to be here.. I just found out today that I still have MCI. mild Cognitive Impairment.. but, I also have a new med too.. I am stopping Exelon patches.. they made me worse accord to my dr , my h and my daughter.. so, now I will take Namenda for 4 weeks, then go back to see my Dr again.. I hope this helps my situation. they say I have MCI.. but, also the meds say it is for Dementia and for MCI.. does anyone know about that? thanks so much.. Lisa Culp
susannahlawson
Posted: Friday, May 3, 2013 3:03 PM
Joined: 5/3/2013
Posts: 2


My husband was diagnosed at age 42, he is now 44 and he is declining  fast.  The only way we found out was he was over-prescribed blood pressure medication and passed out.  The mir he had at the ER  found significant brain shrinkage.  I always thought his mental issues was form the pain meds he was on.  Guess it was a blessing in disguise.

Have you found any agencies that provide help for people under the age of 65 with Alz?

 


Myriam
Posted: Friday, May 3, 2013 10:49 PM
Joined: 12/6/2011
Posts: 3326


Hi, Susannah. I'm so sorry for what you and your husband are facing.  Please call the 800# and ask to speak with a care consultant.  They will be able to help you (800-272-3900).  In my family, symptoms begin to show in the mid-40's, but it is said that Alzheimer's begins 10 to 15 years before symptoms begin to show. 

 

Here's the nearest Alzheimer's Association chapter nearest to you.  They may have a support group for you and/or an Early Onset Early Stage support group for your husband.

 

http://www.alz.org/flgulfcoast/ 

 

 


LoriMichaud
Posted: Sunday, September 15, 2013 12:59 PM
Joined: 9/15/2013
Posts: 6


Hi...I'm 43 and "rediagnosed" with dementia, likely of the alzheimer's type.  I didn't want to believe it the first time (3 years ago).  It was immediately following a surgery with anesthesia.  Alzheimer's is also in my family.  There is a possibility the anesthetics played a role.  I'm told to not stress for the "why" but to just do the best I can to maintain quality of life.  I will have to make major changes at work (again).  I am a school principal that is becoming very unreliable. 

Stay strong...all the changes I made the first time were very beneficial.  I have also significantly modified my diet which is a huge help in the energy department.  Happy to share anytime.


Iris L.
Posted: Sunday, September 15, 2013 1:40 PM
Joined: 12/15/2011
Posts: 18513


Welcome, Lori. Can you tell us what you mean by being "rediagnosed" with dementia, likely of the Alzheimer's type?  Have you gotten a second opinion at an Alzheimer's Disease Research Center?  The reason I ask is because there are many conditions that closely mimic AD. 

Were you offered any medications, such as Aricept or Exelon patch?

Personally, I got a second and a third opinion at an ADRC before I accepted my diagnosis of cognitive impairment nos.

Iris L.

LoriMichaud
Posted: Sunday, September 15, 2013 6:16 PM
Joined: 9/15/2013
Posts: 6


Hello Iris and thanks for the welcome.

"Rediagnosed" meaning I sort of dug my head in the sand the first time and because I followed strict orders from a neuropsychologist and naturopath and doctors, I was able to maintain good quality of living.  I then managed to convince myself nothing was wrong!  I fell in the rat race and not long after the symptoms were back with a vengeance.  I have been retested again for all other causes of dementia and we are led back to the same place.  It runs in my family.  It also started following a knee surgery and the doctors feel the anesthetics may have played a role in kickstarting things for me.

Other than the dementia, I am the picture of perfect health.  Everything in my body works except my brain.  

This time I will listen to the doctors and follow my plans for the long haul.
legoguy161
Posted: Monday, January 13, 2014 2:57 PM
Joined: 12/26/2012
Posts: 20


Hello dlindsey, I'm sorry to hear about your husband. But to answer your question, no your not the only one to know someone that young with ALZ.  My mother was 37 years old when she was diagnosed.  If you have trouble finding information, just know that for the most part there is NO difference between the general symptoms of Late onset and Early onset.  Just an age difference.  I do know however that it affects a 40 year old man emotionally much differently then an 80 year old man.  If you have any kids, make sure and this is very important MAKE SURE that they get to spend as much time with him as possible.  While my mom was sick when i was growing up, I used to visit the nursing home to see her.  It really helped with dealing with the emotional trauma that it had on my family.  They say online that your kids (if you have any) will always get the disease if they carry the gene. (50 percent chance of getting the gene).  Thats BS!!!  The research of EFOAD and how genetics play a role is still in its infancy.  My Mothers siblings are well into their late 50s and 60s without any signs of the disease AND THEY ALL TESTED POSITIVE FOR THE GENE!?!.  Im 19 and i dont worry about it.  No one gets out of this world alive.  Anywho, I wish you the best of luck and i hope this helped.
Myriam
Posted: Monday, January 13, 2014 6:08 PM
Joined: 12/6/2011
Posts: 3326


legoguy161, there are several genes that can cause AD and you are right that for some genes, there is no guarantee that a person with these genes will get AD. However, there are other genes, which if carried cause AD.  Here is an excerpt of an article (for full article, please click on link below): 

 

Deterministic genes directly cause a disease, guaranteeing that anyone who inherits them will develop the disorder. Scientists have discovered variations that directly cause Alzheimer’s disease in the genes coding three proteins: amyloid precursor protein (APP), presenilin-1 (PS-1) and presenilin-2 (PS-2).

When Alzheimer’s disease is caused by these deterministic variations, it is called “autosomal dominant Alzheimer’s disease (ADAD)” or “familial Alzheimer’s disease,” and many family members in multiple generations are affected. Symptoms nearly always develop before age 60, and may appear as early as a person's 30s or 40s. Deterministic Alzheimer's variations have been found in only a few hundred extended families worldwide. True familial Alzheimer’s accounts for less than 5 percent of cases.
 

 

http://www.alz.org/alzheimers_disease_causes_risk_factors.asp 


legoguy161
Posted: Monday, January 13, 2014 7:09 PM
Joined: 12/26/2012
Posts: 20


Thanks Miriam,  Sometimes I wonder,  If these genes are so rare, then how did we, out of everyone in the world (4 billion people) end up so unlucky?  Not trying to sound like a downer or anything but something needs to be done about this disease.  Mechanically it sounds so simple.  Beta secratese just cuts the protein in the wrong place.  But in reality they have created inhibitors that failed in lage trials because they struggle crossing the blood brain barrier
Signsuz
Posted: Monday, January 13, 2014 10:57 PM
Joined: 7/21/2012
Posts: 7


I started noticing symptoms around 45 years old.  Physician said:  stress, exhaustion, sleep apnea.  After addressing all of that, symptoms persisted.  Finally sent to a neurologist.  MOCA tests regularly.  MRI.  PET scan.  Extensive psychological memory exams.
eaglemom
Posted: Thursday, January 16, 2014 5:11 PM
Joined: 3/7/2012
Posts: 2774


I'm so glad that you've found the website.  Welcome.  My DH was diagnosed at 54 - early onset also.  We are two years into this adventure.  I'll share our story at a later date - I know you are too overwhelmed now to process anything.

 

You need to both take a big ol TX deep breath - I truly think it took us over a year to finally wrap ourselves around the diagnoses.  And at times I still question it......then DH does something that does totally confirm the diagnoses.

 

Have you contacted the local ALZ Chapter?  If not you need to do so.  Our North Central TX Chapter is fantastic.  I can't say enough good things about them.  Think through your questions and come back for support, answers and encouragement.

 

eagle


AJS123
Posted: Friday, February 21, 2014 8:01 PM
Joined: 11/14/2013
Posts: 1


My husband is 49 and was diagnosed with early onset Alzheimer's a few months ago.  I have a 19 year old and a 16 year old and it is very sad to know what we are going to be facing over the next several years.  My husband is in an early stage and is beginning to show a decline.  He can not keep appts, constantly loses things, loses his words and has comprehensive problems, particularly when trying to reason with him.  It has been very difficult on me and my kids as the emotions flip back and forth from complete frustration to feeling sad for him.  He doesn't seem to understand his diagnosis and gets very frustrated easily which causes a lot of tension at home.  On top of all that, he is out of work and is now unemployable adding financial stress.  I would love to find a support group, however when I have spoken to the ALZ hotline, most of the support groups are made up of elderly people which I think would make it more depressing to witness as my husband and children are so young.
Steve P
Posted: Friday, February 21, 2014 8:40 PM
Joined: 2/21/2014
Posts: 1


I understand your frustration.  My wife,  now 57,  was diagnosed three years ago with Posterior Cortical Atrophy (a derivative of AD) and not a well understood or recognized disease.  She progressed thru simple reading issues to writing/reading inabilities, unable to ascend/descend steps, unable to dress or undress, and is now fully dependent on others for every aspect of her life.  She can no longer even sit by herself or find her way to her couch and cannot feed herself. Her disease has picked up the more commonly understood symptoms of AD like memory and reasoning and awareness.   It has been brutal watching her progression and knowing that there is no treatment other than Aricept which is really not even indicated for PCA.  It is also frustrating going for physician visits because they are more like a death watch than a healing visit.  AD patients seem to be more of a lab study than a group of people with any potential for cure or treatment.  Every time we go to Vanderbilt for a 6 month checkup, the discussion by the staff produces more anxiety on the part of my wife than any benefit we can see.  Just my thoughts for now.  Good luck.
Iris L.
Posted: Saturday, February 22, 2014 1:42 AM
Joined: 12/15/2011
Posts: 18513


Welcome, Steve P.  If the visits to Vanderbilt are upsetting to your wife, why go?  Is she in a clinical trial?

The main treatment for advanced dementia is comfort care.  If your wife is at this point, then hospice may be of assistance to her. Hospice does not require a six month terminal diagnosis for dementia patients as it does for other patients, but is indicated for failure to thrive or lack of ADL skills and no longer receiving treatment for the disease.  There are many threads on hospice on the main Caregiver board and on the Spouse/Partner board. 

Some areas will have doctors that make home visits.  Or you may find a primary care physician that will provide her immediate medical needs.

Personally, I am in the process of decreasing the number of doctors I see.  I have seen over twenty-five doctors in the past seven years I have been dealing with cognitive impairment.  I had to have duplicated because none knew enough all at once.

Frankly, I have learned more about what to do by reading the boards.  The doctors just prescribe my medications.  They have been unable to give advice or suggestions in any other areas.  I am royally upset at this, but what can I do?  They are CLUELESS!

Go to doctors when you need a test or a prescription.  Otherwise, their function is limited in the area of dementia treatment.  Unless you find a gem, like mine, which is rare.

Consider alternative therapy, such as aromatherapy.  There are many threads on many boards about aromatherapy.

Iris L.

stormie1958
Posted: Thursday, March 20, 2014 10:16 AM
Joined: 3/20/2014
Posts: 12


Here we are on the board. I am a new caretaker for my wonderful husband who has dementia, early onset of Alzheimer. The doctor diagnosed him in January 2014. The doctor has done a lot of test on my husband. The doctor just ran a DOT/MRI on him yesterday. He had a MRI about two years ago, when he started having symptoms of memory loss. We have a appointment for next week to see what the test will reveal. My husband has started seeing things and hearing things. It is scary because I was not ready for this. I tried to reassure him things were okay. I would appreciate any info that you have to help me and my husband. Thanks so much.
quits
Posted: Thursday, March 20, 2014 10:37 AM
Joined: 12/30/2012
Posts: 3520


Welcome Stormie...

I am also a wife of an Early Onset Alzheimer's husband. I posted on this board the first time, too.  I found help here but more on the Spouse and Partner Caregiver board.  Come on over!



Myriam
Posted: Thursday, March 20, 2014 1:08 PM
Joined: 12/6/2011
Posts: 3326


Stormie, I hope you will read the posts from those of us whom are diagnosed. Perhaps it might give you a perspective of what your husband may be going through. If you are comfortable enough with it, it would be wonderful if your husband can join us on these boards. He would be more than welcomed and it would be one way for him to have contact with others on the same journey.