New to group - Early Onset Alzheimer's

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.

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.

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.

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.

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, 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.

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.

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.

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…

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