New to group - Early Onset Alzheimer's

wizmo

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

Maybe the most active posters are long time members. I remember in early days I felt I did not have much to contribute and was consumed with just coping with the unexpected new direction our lives took. DW was diagnosed in 2017 but had some signs as much as 2 years earlier, was very high functioning math teacher at private girls high school. Neurologist said educated and highly skilled people can persevere longer. We quickly searched for alternative treatments, as standard answer from neurologists was “make the most of the time you have left and prepare for a rough road ahead”. I found this forum early on and am so thankful for all the advice and shared experiences. It has been the single best resource from practical tips to emotional support. Bredesen protocol was a more frequent topic at the time, emerging as one showing promise and gave us some hope. We did everything - wide ranging blood tests for contributing factors, heavy metal detox, diet, supplements, brain games, electrical stimulation, occupational therapy. I do believe it may have slowed progression and was not a waste of time/money. We stuck with the program diligently for close to 3 years but were not getting more significant expected results (halting/reversal). They said the protocol fails for 50% of people and don’t know why. Early onset people and APOE4 genetics (DW is single E4) also have higher resistance to treatment. Six years later progression is accelerating and we’re at beginning of stage 6. We still do low carb and dairy free diet but have backed off most supplements. more recently Bredesen has faced some criticism for things like cherry picking data, publishing in paid journals that are not truly peer reviewed, and selling off his treatment program to more profit oriented business owners. http://alzheimer.ca/en/whats-happening/news/bredesen-protocol-offers-false-hope-reversing-alzheimers-disease. Everyone is different and you may be one of the lucky few who have greater success, won’t know unless you try.

Chloe mom

Hi

I think from what I have read DH and I are some of the younger ones in this group. He had neuro-psych testing in 2011 and the Veteran’s Affairs diagnosized MCI. I didn’t realize that it matched the MCI of stage 3 until 6 months ago. He was 30 in 2011. He has been on Donepazil since 2015. Fast forward to Aug of 2022 and his 3rd heart attack. We both noticed major changes in the last 1.5 years. The VA’s neuro-psych testing now shows problems with attention (if it doesn’t get into the brain; it can’t be made into a memory) and problems with processing speed. But neuro-psych testers won’t call it dementia or Alzheimer’s yet (again I think it is an age thing). So we have been in stage 4 for the 1.5 years with none of his medical team willing to commit. Because if THEY put it in his file, they can’t take it back. He is too young (52) for memory clinic help through the VA and geri-psych.

Due to horrible families, we have had all the legal paperwork done since 2013. So Artemis35, you are not alone.

storycrafter

You're definitely not alone. My dh remains in early stages of FTD, highly functioning for a long time. The neuropsychologist called/calls it, "high congnitive reserve." I've been here since I found the group in 2014 or so. Very supportive in earlier years when it felt so devastating. There used to be a wonderful live chat room, but the site has changed and no longer has that option. I struggle with depression and energy, keep myself busy and distracted in various ways, and am unable to post often. I wish everyone the support they need.

Dave_D_61

Thankful to find this subject, all of you, and this thread. I am the husband. My wife was diagnosed with Mild to Moderate Early Onset Alz originally in Nov 2022 (age 52), confirmed with second opinion Feb 2023 (age 53) and she just turned 54 and I am 62. We have been together close to 20 years, married for 3 years. She has no known genetic relatives (adopted as an infant), and she has no children. I had 2 children, one was lost at age 32 in 2019 unfortunately. My other child is a fantastic adult with her own family and 3 hours away. We have some good friends in our area. One family member of my wife is within an hour or so, and is disabled which makes for a difficult resource. Wife is in the LEADS Study. I am basically her sole caretaker which often takes a toll on me as well and I am prematurely retired as a result. Only signed up for ALZConnected this afternoon after attending day one of LEADS family conference this morning where there I learned of some discussion resources at ALZ Association from the speakers. Wife's bigger issues are speech, memory, spelling, disorientation somewhat. State of CA suspended her Drivers license early last year and I also have all transportation responsibility for dr appointments, study appointments, therapy appointments, etc. We acted pretty early to obtain POA, Advance Directive, Will, banking, etc. while her ability to make her own decisions remained very evident. This does take a heavy toll on my emotional state for sure. And though I have always maintained a "I can tough it out" attitude toward my own ability to cope, I now see that this is tougher than me. I have spent several months fighting health care "bean counters" that have NO IDEA what ALZ is, and have referred us multiple times to Neurologists that don't treat ALZ. Finally with a recent new well patient doctor visit (where the MD was "shocked" that a 54 year old was diagnosed with EO ALZ), we were able to get a health plan "referral" to my wife's ALZ neurologist to continue ALZ care and able to get it "approved" by insurance. I hope to learn more from all of you. And I hope to be able to help others that are trying to cope with this disease and also some of the issues I have learned to navigate. Let's keep the ideas, treatments, and experiences, and share the well being of our loved ones and ourself- Thank you. Dave

M1

Hi Dave and welcome, so glad you have found this group though sorry you need it. It has been a lifeline for me (and many others I'm sure) and can help you feel less isolated.

I'm a retired internist and it is sadly shocking how little the general medical community knows about dementia and about EO in particular. thanks to you for taking on the exhausting but necessary task of participating in the study: outside of research, medicine has little to offer except for adjunctive psychiatric treatment of associated anxiety, depression, and behaviors. I have learned more practical coping tips from members of this forum than i ever got from doctors involved with my partner (now 82, not EO).

Read a lot of threads, and it will help, i guarantee it. Lots of compassionate and experienced people here. So sorry you are facing this.

Dave_D_61

https://alzconnected.org/discussion/comment/195383#Comment_195383

Thank you M1. Your comments about general medical community are absolutely right, as are insurance companies. We have a lot of work to do.

forthelove

https://alzconnected.org/discussion/comment/194390#Comment_194390

How often did you do the NAD and glutathione? Do you know the dosage. I’m hoping this will help my lo. We’re doing oxygen therapy too.

Iris L.

where the MD was "shocked" that a 54 year old was diagnosed with EO

The first patient of the modern age to be diagnosed with Alzheimer's Disease was Auguste Deter, age 51.

Iris

jfkoc

Please new people, go online and google diagnosis of Alzheimer's and make certain the currently accepted protocol was used for diagnosis.

Many of the treatments discussed above are controversial for the treatment of Alzheimer's at this time.

milsmc

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

Hi, this is my first posting as well. I have a very similar situation. I'm not sure I understand all of the abbreviation on here. I appreciate the experiences everyone is sharing and would love to know more about the treatments you've done. At the moment my most pressing question has to do with finances. Does anyone have any advice how to deal with the loss of half your household income? My husband is turning 59 this week and I'm only 55. He will most likely have to retire very soon and I will not be able to juggle my demanding job and him. So I will have to take a reduce position, and again earning less. We are too young for social security and not enough in our 401ks. The fear in the back of my mind is that we will become homeless at some point because we can't afford our bills. Any learnings would be appreciated.

M1

Milsmc, you should contact a certified elder law attorney right away (look at nelf.org) and rather than retire, your husband should apply immediately for short and then long-term disability. He should qualify, which will make him eligible for social security right away (SSDI) and then Medicare. You don't want him to get fired for cause, which could disqualify him from retirement benefits.

trottingalong

https://alzconnected.org/discussion/comment/196350#Comment_196350

Definitely file for long term disability ASAP. It’s a lifesaver. You can go to any social security office and they will assist you. I believe it’s fast tracked when someone has a diagnosis of early onset dementia. Even if he is terminated, you can still file.

Petra2024

I’ve just found this site and joined tonight. It’s such a help to hear everyone’s comments. My husband has congestive heart failure and it’s not yet clear what the source of his memory issues is (maybe dementia and heart issues combined). We see a neurologist in a month. He’s 81 and I’m 69. It’s heartbreaking to see him getting frailer and exhausting to keep adjusting to his symptoms— but so far I’m managing. Hearing your stories makes me feel less alone — but I am sorry things are so hard for everyone here.

Jaygold

Hi Petra,
I'm sorry to hear of your situation and wish you and your husband all the happiness that can be found.
I'm 66 and my 70 yr old wife is in early to moderate stage Alzheimers diagnosed 8 months ago.
I'd be happy to chat here to share and exchange thoughts, experiences, feelings, etc. if interested.

Petra2024

https://alzconnected.org/discussion/comment/196421#Comment_196421

Thanks Jaygold, I'm glad we all have this place to connect, I wish you the same -- as much happiness and peacefulness as is possible. I'll be interested to hear your thoughts as we go forward on this difficult path... this site is such a gift.

trottingalong

https://alzconnected.org/discussion/comment/196387#Comment_196387

I’m in a similar position to you. I’m 67, my husband 80. He has COPD along with the Alzheimer’s. He functions daily, but his short term memory problems as well as confusion are more noticeable. After his recent stay in the hospital, I’m exhausted.

Petra2024

Ah trottingalong, thanks for your reply— exhausted is the word! COPD and Alzheimer’s — I’m sorry you have to deal with both —i find it so confusing to try and sort out which condition is causing which problems…

chelbells

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

Hello Artemis35,

I'm glad and sad you are here, it's as if you and I have the same story. My name is Chele and my husband was recently diagnosed with early onset. We are currently waiting on one last test result, which we will find out in early March. I am 57 and my husband will turn 60 tomorrow. He's been showing signs for a couple of years and we talk openly about it. Both our moms dies from ALZ so we know all too well how the disease progresses, which terrifies me. I have alot of emotions but do my best to stay in the moment. I have a post it note on my monitor that says "I will meet myself where I am right now". After the diagnosis I cried and was so heartbroken and sad. It's like when we heard it from the Dr, it made it real. I had to remind myself not to go down the road of the unknown!! He retired early (August 2023) because it was affecting his work and he was stressed. He keeps busy with projects around the house, he is very handy and can complete complicated tasks, but they take him longer because he has to retrace where he was. He is a sweet, kind man and I was devastated when we got the diagnosis. We've been married 33 years and have 2 grown children and 5 grand kids who live relatively close. We have positive attitudes and have close friends and family who support him/us!!. His short term memory is his biggest impairment which causes him stress sometimes and he cries. It just breaks me, you know! He recently started using navigation in his car driving in familiar areas, and I'm glad he uses that. I help remind him of our plans, commitments. Writing it down everyday helps! I hope you and I can connect and be there for each other.

Sending hugs and compassion your way.

Take good care, Chele

kgorlick

https://alzconnected.org/discussion/comment/160535#Comment_160535

I sure relate to your feelings. I go from patient and understand and kind to impatient, annoyed and angry. I really try hard to keep my emotions in check as I know this is not my DH fault. It must be awful to be him dealing with his confusion. It breaks my heart every single day. Feel free to reach out any time!!! k