New to group - Early Onset Alzheimer's

Artemis35

I'm new to this group, and am looking to connect with others that have a similar situation. I get the impression that most of the members are caring for someone in an advanced stage of the disease, and for that I am so sorry for what you are going through. 

Is there anyone that is dealing with a new diagnosis, and their partner is still functioning at a high level? We are doing everything we can to slow the progression, and have even reversed some of the symptoms. The diagnosis took forever, as I've been seeing symptoms for over 2 years, but thought they were related to other health/personal issues. Seeing a neurologist takes months to schedule, and then doing all of the tests just as long. Since June we've done IV infusion therapy with NAD+/glutathione, stem cell replacement therapy, Hyperbaric Oxygen tx, cleaned up his diet, increased exercise, and added/changed supplements. We're currently in the process of working through the protocol designed by Dr. Bredesen, so he can get in to see a certified MD in the area. I'm convinced that if we hadn't/weren't doing all of these things, that he'd be in long term care by now. The decline was shockingly quick, and in April of last year, I could barely have a conversation with him. As it stands, I'm thrilled to say that he is doing incredibly well, and leading a relatively normal life, given the circumstances. However, it has been a huge strain on me(us), and even though he is doing well, my day is filled with solving problems, fixing issues, and overall managing and monitoring his life. We are young for our age. He is only 62 and I'm a little younger, but we're active, and I still work full time. We aren't married, and have only been together since 2018. We were so incredibly happy, and both had successful careers. This has been devastating, and he has handled it with so much grace and humility. I'm just trying to get through my days. 

If anyone else can relate, I'd love to connect. I'm also happy to share the resources we've been using to manage his symptoms. 

Ed1937

Artemis, welcome to the forum. It's a good one, where you can get help and compassion, and share your experiences. You have certainly done a lot for your LO. Some of those things are controversial, and many believe are scams. I have no experience with them, but just passing on what I've read on this and other forums.

The two of you are certainly young, but you mentioned how quickly things deteriorated. Is it possible that he had an infection that cleared up, and the symptoms became better? There are several things that could cause rapid decline, and once cleared, could turn things around.

I just don't want to see you spending thousands of dollars that shouldn't be spent because results have not been clarified, or were tweaked to better appear to be working. I'm sure others will share their concerns.

Jgirl57

This forum will be helpful; I do agree with Ed and there are others 

here that have more experience than I do.

Does your partner have grown children and are they the

 DPOA document holders ? Others have said in the past 

to really enjoy your time together now as this can get bumpy 

down the road. Your positive attitude is great. There are 

definitely others here in the earlier stage as well. 

MaryG123

I’m sorry you have to deal with this Artimis35, but glad your LO is doing so well.  As mentioned, get out and spend time together doing what you love, as no one knows what tomorrow may bring.  Consider your finances and protect your assets from future possible mishandling.   Consulting with a CELA, and getting your powers of attorney and wills in order will give you peace of mind.  Consider choosing someone other than he to be your healthcare proxy and have your poa.  It’s early days for us too, and getting those items taken care while my DH is still lucid helped immensely.  I’ve found that paring down our lives to the basics and having a routine has helped reduce my DH anxiety.  He also needs a lot of sleep now, and manages best if well rested.  You’ll figure it out as you go, but be sure to take care of your own well being too.

sher55

Hi Artemis, 

I am very new to the forum - just joined this evening!  My husband was diagnosed with early stage, early onset AD last December, at 65 years old, 4 years after a serious head injury. At the time of his accident he was at the top of his career, very active, playing a lot of music etc. He has needed to decrease his work to 1 day a week, he remains social with close friends, has hobbies he's engaged in, continues to play in a band etc. but the decline in the past year is undeniable and heartbreaking. We are currently on vacation - he's able to drive safely, participate in any plans I make but is beginning to need assistance in everyday living. He is finding word retrieval increasingly difficult and he feels more and more absent. 

Since his accident he has been taking supplements, varying them somewhat, watching his diet (off and on), exercises regularly. In the past 4 months he has gone through a series of HBOT treatments. I have contacted the stem cell institute in Panama and we are considering this option in the future. I am currently in touch with a clinic about embarking on the Breseden protocol. He will be starting IV infusions in January. I feel very much like we are on similar paths. I'm feeling urgent these days, about treatment. In the past he was in and out of "good times", enough so that we could almost keep our head in the sand a bit and think that what we were doing was enough. That has changed in the past couple months.

We're married, together for 36 years with 2 married children and a grandchild. We both had very successful careers and I remain working at 4 days weekly. I am needing to decrease this. My spouses needs are increasing and am I organizing/planning/implementing most everything and trying to remain patient and gracious in the face of so much uncertainty and grief. 

I am so encouraged to hear you say that all that you have done has made such a difference in the trajectory of your partners progression. It's inspiring. And I do understand that all of the choices we make for treatment are not proven but one thing is certain - the amyloid protein buildup is an end point not a cause of Alzheimers. I'm a physician. I have spent hundreds of hours on the pathophysiology, the science, the research etc. We're still in early stages of understanding this disease process. 

I understand your sorrow.

Iris L.

Welcome, new members.  I have a diagnosis of cognitive impairment not otherwise specified.  I have multiple possible etiologies for my cognitive snd memory changes, but I do not have Alzheimer's Disease.  Nevertheless, I have been on the memory meds for several years with good results in memory and speech.  I am familiar with Dr Bredesen's approach along with many other members.  It appears to me that he treats all possible causes empirically, and there may be some improvements.  There are many threads about his methods and other possible treatments in the Clinical Trials message board.  Keep in mind that there is no known substantive treatment.  My suggestion is to keep reading and researching as you are already doing.  Read about sleep apnea, a often overlooked cause of memory loss.  The lifestyle habits of brain-healthy food, exercise, socialization and brain stimulation are what we call Best Practices.  

Having said all of that, I am concerned that you both seem to think your LOs are "normal", yet require a lot of assistance in daily activities.  This is not normal.  The main factor of the dementias is that they are progressive.  Also that the course may not be steady, but may ebb and flow.  There are priorities after a diagnosis, one of which is to get legal and financial affairs in order.  The other priority is safety both in the home and in public.  IMO, anyone who needs assistance in daily activities probably should not be driving.  Driving requires quick thinking and quick reflexes.  There are many, many threads on driving for you both to search.  Driving is such a sensitive subject that I won't say more, but suggest to read a lot of driving threads.

Sher, head injury may present differently.   Does his MRI correlate with his deficits?  I am curious.

The members here know just about everything about caregiving and dementia.   Please keep reading and keep posting.

Iris L.

Jhelseth

Although I am not new to this forum this is my very first post/comment. I am also dealing with a spouse with early onset Alzheimer's. I saw symptoms for years but he absolutely refused to see a doctor. He said it was "typical aging" memory loss. He finally went into see a neurologist at my insistence and had testing last March. This past summer after all testing was done he was diagnosed with Alzheimer's. He just turned 65 but I have been dealing with his memory loss and cognitive decline since he was in his 50s. He is still in the early stages  but I can see progression. 

4 1/2 years ago we moved away from a suburban area and away from our kids and grandkids to build a house up north in the woods and by a lake. This was before we knew he had Alzheimer's. This was our dream, to build this home in the country. It was our retirement home. now he doesn't seem to be able to get anything done in the yard or house. Every time I suggest hiring someone to do things he gets extremely angry. I think it's denial that he can no longer do these things on his own. Physically he is able, cognitively he's not able to put all the pieces together to get things done. I am angry all the time. I am resentful. I am sad and lonely because we are away from all of our friends and family. Even if we were to move back to the cities, there was no one there that would really be able to help us much for various reasons.

I would love to be able to connect with others dealing with EOAD. 

Just an added note… I do a lot of voice texting because it's quicker. Please ignore any typos, grammar errors, or weird punctuation.  

Jhelseth

  I am in a similar situation. I saw symptoms in my husband when he was in his 50s, but he refused to see a neurologist. He finally had no choice because his cognitive decline and memory loss was beginning to affect his daily functioning. Also, I did put my foot down and threaten to leave him if he did not find out what was going on. He was finally diagnosed this past summer with early onset Alzheimer's disease. He just turned 65.

I would love to connect and have someone to talk with and share with. Please feel free to send me a message if you would like.

tgeno

Hi Artemis35. I am also new to this group. My DW was recently diagnosed with probably Alzheimers dementia. She is 70 and I'm 74. We are both retired. She is very high functioning. We noticed memory issues early this year and a couple of behavioral incidents that caused us to seek medical intervention. It did take months to get a neuropsychological evaluation with a referral from a neurologist. However, we did get it last November. We did establish that the couple of behavioral incidents were probably due to an acute drop in blood sodium which has since been addressed. However, the memory issues are clearly evident, the neurologist has her on Aricept. As I said in the beginning, she is high functioning, having been a senior executive for many years prior to her retirement. Fortunately she accepts the diagnosis and we are working together to do a major update to our wills and POAs and agree on how to handle day-to-day finances. I maintain our shared digital calendar. She lets me do all the driving. I have always done all the cooking, so that was an easy one.

I have been doing a lot of reading about this disease to prepare myself as much as possible for what may come next. It's very important that you take care of yourself, physically, mentally and emotionally. The onset of this disease sent me into a deep depression, but I've been fortunate to have access to professional psychological help and it has been extremely helpful.

The other resource I have is that my mother died of AD, and my father, sister and I cared for her until the end which was about 7 years from the diagnosis. My father has since died, but I feel his spirit encouraging me, and my sister is a hospice nurse and a great source of information and encouragement for me as well.

Let's stay in touch in this forum. We are not walking this path alone.

CStrope

Artemis35 and Sher55 I'm interested in the MOCA or MMSE score your spouses received at time of diagnosis.  My DH was diagnosed at 66, but should have been diagnosed much earlier.  His MMSE was a 17!  I am 8 years younger, so I continue to work full time, from home (thanks to the amazing company I work for).

I'm wondering if some of the treatments programs you're working with have parameters for how far along the patients are, hence my question about their MOCA/MMSE scores.

I would love to connect with others who find themselves now taking care of EOAD spouses.

RPMize

Can I ask, what is MMSE and MOCA scores are?

Pat6177

Rpmize, MMSE and MOCA are 2 different tests that give a rough estimation of cognitive ability. They can be administered by your primary care dr as opposed to the more intensive and thorough testing performed by a neuropsychologist. You can do an internet search for MMSE or MOCA and get the questions and give the test yourself if you are so inclined. Another test often done in the PCP’s office is the clock drawing test which tests a person’s executive function. 

Welcome to the forum! It’s a good place to get support and to ask questions. Almost everything I know about dementia, I’ve learned here.

Artemis35, I believe that there are a lot of caregivers of highly functioning POD’s that just don’t post very often. So don’t hesitate to post with your issues with your DH in the early stage. My guess is that (as you have seen here) there are folks that will respond.

Thel

Hello. Guess this is the "Newbies Group" I've been reading a lot of posts but have not commented or shared till now. My DH was diagnosed Oct 2021 with slow memory loss being the first reason to make appt with a neurologist and with that got a diagnosis of ES and EO of ALZ.  Since that time, DH has become extremely angry. I don't get why he is so angry at me though, as I am his only means of a caregiver, at this point in time. I have had to take over nearly everything that is required to keep finances in order to making sure the trash gets put out for pick up on the correct day. which I'm ok with doing all of that. What I can't take is my DH calling me names {not repeatable names} at the drop of a hat. I need to tell myself, more times than I can count, that it's the disease not my DH. This is tearing me up inside. How do I deal with his constant name calling? Of course, he remembers nothing of what he said 30 minutes after he has said those offal words. I am the one left to remember. such a heartbreaking disease for all that it involves. My DH was a State Trooper for 36 years and now it takes him 10 minutes to tie his shoes in the morning. {Cring while I type this}.  I loved him dearly, but now I am his caregiver, his maid, and someone he screams at daily.  

I know this story has no happy ending. I just hope I can last long enough for both of us.

Belldream

We too are young, DH is 64 with EO. I'm 61 and still working FT. Except for all those therapies you mention which we have no experience, the rest sounds alot like us maybe up to 1 year ago. DH has really declined a lot in the past year, and especially in the last 3 months. He woke up one morning unable to walk and had altered mental status. Turns out he had RSV. He started walking again about a month ago and was just released back to home on Christmas day. He's walking is not great, his shuffle is worse than ever and he walks with his head slightly turned down. He also has Parkinson's.  I have to do all the cooking, be sure he's able to eat or help as needed, constant chase him to put his depends back on or be sure he hasn't peed all over the bathroom floor. Thankfully for now he is going into the bathroom. He resistd hygiene and I do what's absolutely necessary to keep him safe and healthy. I turn off the circuit breaker to the stove and oven and unplug the toaster each night. I struggle with getting enough sleep. I feel I can't do this forever, sleep is vital when you can't nap during the day, and also need to focus on work. He no longer can have a conversation with me. I'm lucky if I ask him a simple question and he can answer intelligible. I treasure every lucid moment,  they are getting fewer and farther between. I say all this because I was where you are a short while ago. I felt in control still and could manage his meds and doctor appts and the bills and still work, and still have a real life with my husband. We've been together 17 years now, and he is the love of my life. It's both our second marriage but he has been getting confused with me and his ex and his past life with her, so 17 years still isn't enough in that memory bank I guess. Now I'managing so much more and I really now have 2 FT jobs. This is my experience and our journey. Yours will likely be different. But just be prepared and enjoy every single second you have every day. What I personally found is that sometimes you can't see the forest from the trees, and that everything can change in the blink of an eye.

JJAz

Belldream,

Since your husband has Parkinson's in addition to dementia, have you reviewed the criteria for Lewy Body Dementia?  Its onset is typically 10 years earlier than AD.  You can find more about the diagnostic criteris on the Lewy Body Dementia website

https://www.lbda.org/wp-content/uploads/2017/09/2017_professional_brief_-_dlb_diagnostic_criteria_0.pdf

Also, you may be interested in an online forum for the spouses of Lewy Body Dementia and Parkinson's Dementia.  It is a moderated forum with membership criteria, but very active.

https://groups.io/g/LBDCaringSpouses

Belldream

Thank you so much! I just submitted my request for membership

feelsad

Hi Artemis35. My wife is 57 and has been diagnosed with EOAD in 2021, but I believe it's rather should've been 2017. This was the year when some friends would come to me and express their concern about my wife's fogetfullness. I made me to take her for a tour of every single doctor available including nuorologist. Nothing except "maybe a stress due to her special needs son who she needs to take care of". At that time we both worked fulltime. Make it short, her coming through one layoff, several unsuccessful employment engagement, we eventually had another neuro appt, a good cognitive test that resulted in the EOAD diagnosis. The speciaist who conducted the test was shocked of her very low score and was convinced that it was genetic. The DR prescribed her usuals for AD: memantin, donepezil, anti-depresants... she's been taking them for year and a half now. She's now on disability, not driving, not cooking (it's all me...), has difficulties with finding a right word... Why was it so fast? Sometimes I think that medications make it worse but afraid to take her off of them, too much risk... The DR though lost all interest in her and suggests appts twice a year... I'm 65 this year, our youngest daughter is a senior in high school and I'd still need to work a number of years to pay for the college and make some saving. How will I be able to make through this time, only G-d knows.How to help my wife? Sometimes I think that only G-d knows.  One thing is know - it does not make any sense to attack amyloids as they are the effect, not the cause. And NOBODY knows the cause of AD... And it's been frist diagnosed 100 years ago.

Thanks G-d for this forum, at least we have a place to share.

feelsad

Hi sher55, can you please explain what Breseden protocol is and how it can possibly help EOAD patient? Thank you.

Artemis35

Hi Ed, Thank you for your response. He had sepsis in April 2021, which we think might have been partially responsible for accelerating the disease. At the time, we were told that his cognitive decline would resolve once the sepsis cleared, and it did somewhat, however, not entirely. Shortly afterwards, the decline continued, and fast forward April 2022, I couldn't have a coherent conversation with him.

Artemis35

Hi Sher55, Thank you for sharing your story. It really does sound like you and I are on similar paths. You mentioned grief, and I'm just realizing that I've been grieving, on a daily basis, for quite a while now. It's exhausting. I grieve for the incredibly astute, and intelligent person that he was, and the relationship that we had. I grieve for both of us, for his children, and his family. We aren't married, and our relationship has changed from romantic to caregiver, of which I'm not naturally inclined. 

I've spoken with others that have gone to the clinic in Panama, with excellent results. We chose a clinic just north of Chicago for stem cell replacement. Dr. Rachel specializes in patient's with neurological disorders. They were wonderful, and the procedure was surprisingly simple. Up until the appointment in August, I felt like we were on a mission to protect as many of the remaining brain cells as possible from further progression of plaque build-up, until we could get to Chicago. We did that with IV infusions of NAD+ and glutathione every 2-3 days. I can absolutely relate to your sense of urgency. All of this was incredibly expensive, but worth it for the results that we have seen. Everyone is different, and LO is in great shape physically, always having taken care of himself, and keeping a clean diet. I know this is controversial, but I don't really care because what matters are the results. The clinic recommended 40 follow up treatments of hyperbaric oxygen in a hard chamber. In September, I moved LO down to Florida, and we were lucky enough to find the Clinic in Delray Beach. They were wonderful, and I saw a visible improvement, particularly treatments 20 through 40. Again, this is our unique experience. It may not work the same for everyone. LO is able to drive, and function much as a normal person would, however, not able to return to work. The more research you do, the more you'll find that supports these alternative treatments. As his neurologist told us, just because a treatment doesn't have FDA approval, doesn't mean it's not effective. FDA approval is expensive, and the pharmaceutical companies aren't going to invest in research to support something they can't patent and make billions in return. I encourage you to keep striving for alternatives, as we are, because,, from what I can tell, conventional medicine offers nothing otherwise. From what I can see, we have nothing to lose by working outside the box.

Sheller

Hi there,

Oddly refreshing to hear of a similar story of the one I am living with my boyfriend. I invited you to connect. I am a newbie to this forum as well. 

Jgirl57

A,   I think it is important that you are comfortable with

steps you have taken. That goes a long way for both of you.

it looks like you indeed found others with similar situations

that you can bounce ideas, thoughts and progress/decline stories.

Support for you is vital.

feelsad

Nobody responds in this forum...What the point to even post anything.

MaryG123

I’m sorry you didn’t get the response you needed feelsad.  Please try starting your own post thread, by using the green Add Topic button at the top of the page.  Sometimes comments and questions get lost in someone else’s discussion.  Sometimes folks just don’t have the time or energy to respond.

ARgirl

Artemis35,

My husband was diagnosed with early onset disease at age 59.  He is now 70. I would be glad to give insight into our journey.  I know every patient is different, but progression of disease is definite. Periods of sanity, then we drop off another cliff of further cognitive decline. I am so sorry your family is on this train of dementia.  Reach out!  

Ruby P

https://alzconnected.org/discussion/63552/new-to-group-early-onset-alzheimers

I am somewhat in the same stage as you seems to be. My husband does not yet have an official diagnosis, but I believe he is in the early stages of ALZ. Our first neurologist appt is at the end of this month. I want to do all I can to slow the progression as I know what this could look like in a relatively short period of time. I'm very interested in all you have done so far, espcially the HBOT. What that recommended by your neurologist? And the IV therapies, as well?

I'm not new to ALZ/Dementia having cared for my uncle and still caring for my mom, but they were both in their 80's when we began to see a decline. My husband is 68, as was his mother when she was first diagnosed. She died at 86.

I would be very interested in your resources. It sounds like your research and perseverance have paid off.

Thanks!

Gig Harbor

Hi Everyone,

I have been a member since 2016 and my husband passed away in November of this year. His initial progression was slow but steady and it accelerated in the spring of this year. Ultimately he passed away from a heart attack. At that time he could not walk or talk and did not recognize me. He spent his days in a wheelchair. I declined transport to the ER because he was not a candidate for a heart cath and stents so he was kept comfortable until he died.

The things I had to learn over time are these:

1. Get all paperwork in order. Your spouse can no longer be your POA. Make sure wills are up to date.
2. If your spouse is having problems at work see an attorney and look at having him go on disability. Do not let him keep working if he is not able to. You don’t want him to get fired.
3. Make sure you have passwords to all accounts and try to gain control of all finances. Don’t let your spouse answer the phone. Telemarketers start out by saying “Can you hear me” because they want the person to say “yes” and they can use this to say you agreed to something that you did not.
4. if your spouse can’t manage dressing, simple tasks and other things he once did his brain can no longer handle driving. The last thing you want is him getting in an accident and injuring someone. If you wouldn’t let him drive alone with a young grandchild in the car that is another warning sign. They also begin to get lost in familiar places.

The problem with this disease is that the changes are often subtle and they sneak up on you. The person with the disease is often very good at covering up for what they don’t know. They smile and nod and are happy to let others carry on the conversations and it works for awhile because everyone loves a good listener.

Expect to be blindsided. My husband did the same walk 7 days a week for 10 years. One day a nice man brought him home and said he had seemed confused about where home was. The next day he did fine. The third day he got lost again and that was the last day he ever walked alone. Just when you have things figured out something happens. One day he stopped wanting to take showers and it was a battle going forward. One day he forgot that you only need one item of each clothing. He came out with 5 pair of socks on, three pair of jeans as well as underwear on the outside to finish the look. He was really never able to dress himself again.

My heart goes out to all of you wonderful caregivers. You are on an extremely difficult journey that will test your strength and your patience. You must remember that you did nothing to cause it and never feel guilty for being healthy and OK while your LO is not. It is just the way life goes. It is OK to ask for help and be specific because people want to help but don’t always know what you need. There may come a time when you can no longer care for your LO at home and that is not a failing on your part. You do the best you can and then you have to accept help from others. You will get through this and marvel what a strong person you are - stronger than you ever thought possible. Good luck.

avieDa921)

https://alzconnected.org/discussion/comment/160609#Comment_160609

My DH 6 years ALZ has been on Seroquel for one week now & I can already tell he is better with delusions, anxiety, & anger!

LizCamp

https://alzconnected.org/discussion/63552/new-to-group-early-onset-alzheimers

This sounds so much like our situation. My husband is almost 66 and is in early stages. I am working part-time and he is trying to keep active with a part-time job, exercise, and interaction with others. My husband also has a positive attitude, which makes me so grateful. I could not do this if he was not positive. I am trying to focus on my mental health and reactions to him right now. It took some time to find a neurologist and so grateful to God for getting us into the neurologist and testing with neuropsychologist. My hubby is on medication, but I am not sure that it is working since I see signs daily. I am thinking that maybe the signs were already there, but I did not recognize them. Who knows. I suggest that you find a therapist that could assist you in addressing any barriers. I realize that I focus inward and analyze myself so much and am trying to learn to give myself some grace, recognize the stress, and find ways to calm myself. We are hoping to find some clinical trials as well to not only possibly help him but to help others.

LizCamp

https://alzconnected.org/discussion/comment/194207#Comment_194207

Thank you for this information. It hits the spot. We are already addressing the needs for a POA and a backup one if I am not able to do it. We have discussed the possibilities with family and I have a person I can talk to when I need to vent. Remembering to recognize my love for my husband and enjoying what I can when I am with him is crucial. Also, I recognize the element of surprise in this journey. Just when I think I have a solution, something else happens. I am learning to accept the journey.

Stan2

https://alzconnected.org/discussion/comment/162258#Comment_162258

I think maybe you would get more response if you started a new thread rather than posting on one that someone else started. I am new here also and it can be a bit confusing but we all are learning.