Husband newly diagnosed (55yo) - treatment?

gailtothev

First post! We're waiting for an appt with a neurologist to pursue next steps (blood, MRI showed no issues, mental tests showed decline). I wanted to ask here how long it took for your loved one to start any sort of treatment. So far we've gotten the "see you in 6 months" talk, but no talk of starting any treatment, other than lifestyle stuff which we already do (he's super healthy!). If anyone can please provide your experience on your timeline of events, I would really like to see it so I can kind of prepare myself. I'd like to go to the appt and push for something but I'm not sure if I'm being realistic or not.

Carl46

Welcome, Gail. My wife started on Memantine and Donepezil as soon as she was diagnosed. This was prescribed by her pcp, an internist.

Quilting brings calm

Have they tested for B12 deficiency or Thyroid issues? Those can mimic mild cognitive decline and are treatable. If everything but dementia is ruled out… there’s really no treatment. There are some clinical trials and some new infusion type meds that might slow it down but come with serious side affects. Enough that many people don’t go that route. Otherwise there are things like donepizel that can slow down symptoms. The path is still a one way path. Keep in mind however that no one can predict how long your spouse’s path will be or how quick the decline.
If he has dementia, he has early onset ( under age 65). Don’t get that confused with early stage ( which means a person is at the mild stage of dementia).
There’s lots of support here and good information. Right now, get your name on all the accounts, get him to sign financial legal and medical Power of Attorney so you can take over bills, accounts, etc. simplify his life so that he’s less stressed out. people will suggest that you do any traveling soon while he’s still able to enjoy it.

charley0419

I took wife to Nurologist in 2022 as noticed forgetting and repeating a lot. They give you tests like ask you three things like names and dates. Talks about something else then goes back to ask you the 3 things. They make them draw a clock and put it at 11.45 stuff like that , day of week month count backwards my wife failed all. I got her into a trail study for a couple of months but didn’t like idea that you don’t know if she’s taking meds or placbo felt I’d rather have Nurologist put her on sone kind of meds. Plus she hated them asking her questions she couldn’t answer. She’s on 2 different meds now and holding her own. No more driving it’s about 2 yrs. Hasn’t cooked either gets confused. Hygiene perfect. But has anosognosia Look it up. Was diagnosed with mild Dementia, that’s like being a little pregnant haha. But have to say it really started about 8 yrs ago our major move after 39 yrs in same house made it kick in. Also on Gaberpentine for many yrs. But compared to others she’s not bad but know it will come. Keep the faith. Let me know how it goes. She’s 78

gailtothev

https://alzconnected.org/discussion/comment/243109#Comment_243109

Thank you very much. All his bloodwork was good. Really good in fact. But it has been about a year since that bloodwork, so time to go get it done again. Thanks for the frank response, yes, I'm mostly looking to slow down symptoms and relieve some stress. Thanks again!

gailtothev

https://alzconnected.org/discussion/comment/243113#Comment_243113

Thank you. My hub passed the test marginally. Got the harder questions correct, funnily enough. Even the doc was like "WTH?" We believe it was triggered by a stressful change at work. He has never been the same since then. A 30+ year career foiled like that. A shame. Thanks for sharing your story with me! I hope we're early enough to start meds and make a difference.

Appletree4

https://alzconnected.org/discussion/73037/husband-newly-diagnosed-55yo-treatment

hi,

My DH was diagnosed in 22, we did test

Puncture test to spine to confirm.

He is sweet sometimes and angry the next day.

Short term is short. Still working.

It’s like living two people at once

Lgb35

we started almost 6 years ago! They started with blood tests which are not typical blood tests. They looked for autoimmune, encephalopathy, and others. Not things you would need to repeat. They did look at the normal stuff also like B12 and thyroid. He had MRI which showed atrophy in the temporal lobes. Neuropsychological evaluations which are 3-4 hours long. Speech evaluation. Spinal tap. After all that we knew it was a neurodegenerative disease but didn’t know which one. They did start him on donepezil 4 years ago. Fast forward to now. We had an Amyloid PET scan a couple weeks ago which confirmed Alzheimer’s. DH is 61. Today we are going to the neurologist to talk about medication. The side effects are a concern on the infusion drugs but DH has been very clear he is not afraid to die and will take the risks.

I am curious what test made them diagnose your DH?

harshedbuzz

@gailtothev

What specific blood tests were done? This matters, especially given his age. B-12, Thyroid, Thiamine, and Lyme Disease come to mind. In the case of my parents, dad had a Thiamine deficiency related to alcohol use disorder and mom had Lyme Disease. Dad improved temporarily but he was unable to maintain sobriety and also had Alzheimer's. Mom was treated and returned to her baseline in a couple of months.

Was he diagnosed with Alzheimer's confirmed by a special PET scan or spinal tap? Or was he given a more general MCI or dementia diagnosis?

If he hasn't done the PET scan, you want this. If he does have Alzheimer's than he is a good candidate for one of the new infusion medications.

If you aren't already at a teaching hospital memory center, that might be a good next step.

HB

gailtothev

https://alzconnected.org/discussion/comment/243177#Comment_243177

Thank you for sharing. In office tests were used to diagnose my DH. It is more of a general MCI and early signs of dementia diagnosis. The blood tests were just the standard for all bloodwork, nothing deeper than that. MRI was clear. Failed the hours long tests at the neuro that they give you (read you a story and then ask questions type of things). It has been about a year since then and his PCP just kind of confirmed he's performing like a 70yo on those tests.

gailtothev

https://alzconnected.org/discussion/comment/243182#Comment_243182

Just the standard blood tests, about a year ago. But the continued mental tests show decline. Diagnosis was general MCI (no cause determined) and early dementia. Thanks, I will look for a memory center.

gailtothev

https://alzconnected.org/discussion/comment/243176#Comment_243176

So sorry. We're not there yet, but trying to preserve where can. Please take care!

gailtothev

https://alzconnected.org/discussion/comment/243177#Comment_243177

Did the donepezil have any positive impact?

mbald

My DH was diagnosed with EO in January at 57. He had his first infusion treatment (donemab) in April and his second one will be Monday, 5/19. I had to push, call and email to get thru the approval process. He has double e4 gene so high risk of an adverse reaction but so far so good. He already was eating well because I’m a health nut and I’ve pushed him to work out more. The compromise is he’s walking our dog twice a day for 30-45 minutes per walk. I’ve been reading a lot about the benefit of plan based diet, but it doesn’t work for everyone. Keep pushing and reminding the doctors he’s only 55.

gailtothev

https://alzconnected.org/discussion/comment/243253#Comment_243253

Thank you! We have an appt on Monday and I for sure want to talk about the infusion treatments. I appreciate your advice!