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I think I'm considered young to have dementia?
Posted: Wednesday, July 31, 2019 9:36 AM
Joined: 7/27/2019
Posts: 1

Hi everyone.

This is my first post. 

I have been diagnosed with dementia. 

I have deep white matter changes in my occipital lobe. 

My primary care Doctor diagnosed me and I will be going to my neurologist August 7th. I have the APOE 3 and APOE 4 gene for Alzheimer's. 

This has been a very difficult time for me. I'm 58 years old and the symptoms started at least 2 years ago. I am a type A personality and organization has always been a priority of mine.  Now I struggle with so much! I feel that I am progressing quickly and want to give away or sell all my things while I am still aware. I don't want my husband or children to have to deal with all my stuff. I'm a seamstress and quilter and have a massive amount of sewing and quilting things. However,  sewing is my peaceful place and I don't want to give that away.

I was diagnosed 6 days ago and I'm surprised,  but, not surprised.  I still want to make the diagnosis go away, but, I'm happy that all my symptoms have a name. I see a lot of assistance and support groups for caregivers, but, not much seems to be available for actual dementia patients. I need to be able to get my feelings out and I don't feel like I have a place to do that. I have a therapist, but, my feelings don't only come out once a week for an hour.  I need a place that I can vent more often. 

Thank for "listening".



Posted: Wednesday, July 31, 2019 11:49 AM
Joined: 9/12/2013
Posts: 3556

Lissa T -

welcome to an online group of friends dealing with dementia symptoms and Life, thank you for sharing how you were recently diagnosed and that you have both genes.

You will find friends here who will learn from what you discover about how you choose to walk this road and teach or suggest different ways they handle the symptoms and changes.

I am one who ended up trapped by "my stuff" so that part you wrote about your quilting and sewing really hit me. Yesterday the last boxes of stuff from my house arrived in my new place, much of the pottery and glass stuff was in pieces, a ton of paperwork I have decided not worth me sorting still (for now) and some sewing things. I had a lifetime interest in vintage clothing and fabrics and when I saw a piece of very old silk velvet in a box I was so glad to have it. Some days when my vision is better I can still thread a needle and love to repair tears and buttons and now may attempt to make 2 panel curtains out of this velvet, by hand. 

Regarding your own supplies you may find yourself still working even with dementia but if your work room was maybe 50% lighter that might feel good.

If you want would you write more about having the genes? Did a parent have dementia and you took care of them? 

What I have found is that care is different if one has a supportive mate, a secure place to live, and  imagine a way through this illness thru your environment which includes things that symbolize peace, happiness, patience, meaningful activities and rest.

Others will write who know more than me and yes almost all advice is for caregivers and this online group has the most New Views on how we would like our lives to be set up so our journey is easiest for all.

Please write more, your story is valuable to thousands when shared here.

love and courage

Posted: Wednesday, July 31, 2019 2:32 PM
Joined: 4/22/2017
Posts: 315

quick response re: APOEs

Quick and dirty: Everyone has 2 copies of the APOE gene. APOE2 is rare - it is related to a reduced risk of ALZ. APOE3 is common, i.e. the norm. APOE 4 carries a greater risk of developing Alzheimer's. The APOE4 is hereditary but it is not one of the God awful rare mutations that cause early onset Alzheimer's in certain families.

There are several of us on this board who know we carry at least one copy of the APOE4 gene. Same as Lissa, I carry one copy of the APOE3 and one copy of the APOE4.

Twenty four percent of European descent women carry the same. One 3 and one 4. Without considering other genes related to Alz (and there are many), 23andMe indicates that a woman of European Descent carrying one 3 and one 4 has a 12.5 out of 100 risk of developing the disease. Furthermore, the same woman who did not carry an APOE4 would have a 7 out of 100 risk. (Two copies of the APOE4 would certainly be more worrisome).

It is true that women who carry an APOE4 gene are more likely to develop Alz a little earlier than their peers.

Gotta run (My LO died a week ago and I have all kinds of stuff and emotions to deal with). Thanks for posting. I'm sure others will enlighten you as to what is needed to get a proper diagnosis.

Iris L.
Posted: Wednesday, July 31, 2019 10:07 PM
Joined: 12/15/2011
Posts: 16421

Welcome to our online support group, Lissa.  I hope you will have a thorough medical and neurological evaluation to search for dementia MIMICS.  The diagnosis of the dementias is a "rule-out" diagnosis, after all other possible causes have been ruled out.  Also, check your medications for memory loss as a side effect.

I have changes in the white matter of my brain also.  My neurologist referred to these as "leucoairiosis."  You can google that.  I also am positive for APOe 4.

Researchers have discovered that certain lifestyle habits may improve functioning and prolong the early stages.  We call these Best Practices.  They include:


--take appropriate medications as prescribed

--eat the Mediterranean Diet with many antioxidant fruits and vegetables; eat fish and nuts for omega-3 fats; limit alcohol but a bit of red wine may be okay.

--exercise to tolerance

--continue to stimulate your mind with new learning;

--continue to socialize.  

Also, avoid stress, get restful sleep and consider alternate and/or complementary therapeutics such as aromatherapy, if desired.

Lissa, please keep reading and keep posting.

Iris L.

Posted: Thursday, August 1, 2019 3:23 PM
Joined: 1/24/2019
Posts: 196


Welcome to the group.  I am so sorry about hearing of your diagnosis.  You may want to edit your profile and add your story so others can get to know you better of your situation.  Your story touched me especially when you said you are a sewer and quilter.  My husband was diagnosed in March of 2017 with dementia.  I had made personal quilts for each of our 4 children over the last few years, and I knew that I wanted to make one for my husband to cuddle up with in his special chair in the winter.  He was so glad I made one for him.  If you still have the desire to quilt, perhaps you can do it in a low scale manner and try to use up the material.  Your loved ones will especially love it that you had desire to make items for them.  You may have already done this already since you seem very organized.  My stash is overwhelming as well, and I know full well I need to find projects to use it.  Please feel free to message me whenever you want to vent or want to share the projects you have made.  You will be in my prayers as you go through this.

Posted: Thursday, August 1, 2019 3:51 PM
Joined: 1/28/2013
Posts: 2646

Lissa, you have come to the right place.  I don't have very much to add, except to say don't be in a rush to stop doing things that you enjoy just because you think it will make things easier on your family.  One of the earlier symptoms of my mother's dementia was to get rid of things and change living arrangements to " make things easier" for me.  Unfortunately, her judgement was off enough to give away things that I really would have wanted, while keeping what was junk to me, and moving to a place that ultimately made me have to clear out her senior living apartment on a deadline to avoid paying extra rent.

I say, just go on living your life and enjoying it for as long as you can.  Everything will take care of itself.  You don't have to act like you will die tomorrow, because no one knows how long you will remain functioning.

Posted: Thursday, August 1, 2019 5:19 PM
Joined: 2/22/2017
Posts: 78

I am so sorry for your diagnosis. You are in a great place here, and you'll get lots of answers as your questions arise.

My DH, bvFTD, also started showing symptoms that warranted doctor visits in his late 50's.  He shared that he'd felt something was wrong for a couple of years before that. We are very close so I was surprised that I didn't pick up on anything and he kept his difficulties to himself.  He was able to continue working for 3 years, then it became unsafe. His license was revoked shortly thereafter. He's home now, retired, and we live each day, every day in the best ways we can. Every day we try to do something fun. We continue to live. Are there limitations, yes. Is life different, yes.

Please, please give yourself grace and continue to live each day. Find joy even in the midst of your diagnosis. I know how hard this is and your diagnosis is fresh.  Keep your sewing stuff because sewing is your happy place. Your family still needs you.

Posted: Thursday, August 1, 2019 6:11 PM
Joined: 12/4/2011
Posts: 18369

Please read everything you can about the protocol for diagnosis and be certain that all is done in the process. There are many things that mimic AD as well as illnesses that have dementia symptoms.

This is one read...other online.