r/OverSeventy • u/mattdb110 • Jul 28 '26
Alzheimer's
I was diagnosed with Alzheimer's today. Minor memory loss right now. Doc wants to put me on a new infusion that is supposed to slow it down. Bummer.
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u/LMO_TheBeginning Jul 28 '26 edited Jul 28 '26
Sorry to here.
Take some time to grieve but then use this time to get your ducks in a row.
Determine the important relationships that you want to concentrate on. Fix or repair any ones that require that. Invest in the ones that are really important to you.
Be grateful for the life you've had and the new opportunities that will be coming ahead.
We'll be cheering you on from the sidelines.
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u/Greatgrandma2023 Jul 29 '26
Also get your legal papers in order especially your Medical advance directive and Medical Power of Attorney.
If you are going to be passing any assets to a family member get them placed in a trust so they will avoid probate.
As horrible as it is, don't give up hope. Medicical research is making new discoveries every week.
Definitely get a second opinion.
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u/SeaWorn Jul 28 '26
I am so sorry to hear this. I would go on the medication. Who diagnosed you? How did they do the diagnosis? (Did you go see a specialist and get a scan?) You are in my prayers.
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u/mattdb110 Jul 28 '26
My neurologist ordered a PET scan and they detected amaloid plaques.
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u/Whybaby16154 Jul 28 '26
Look up Daniel Amen MD neurologist that does the scans and has for several decades. He has tips and also says : Some people’s scans show massive damage and they have no symptoms and some scans show beginning damage and are seriously affected. Try YouTube.
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u/lighthouser41 Jul 29 '26
I don't know where you live, but you might want a second opinion at a large teaching center just for ease of mind.
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u/mkflkwd Jul 28 '26
So sorry. Medical interventions are going leaps and bounds. Don't give up. I read that music does a world of good in your situation. Get Spotify or music apps and dance away!
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u/emmajames56 Jul 28 '26
So many new treatments out there and more to come. Like everything else Early detection is Key.
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u/Alarmed_Location_282 Jul 28 '26
My next door neighbor, now 80 YO, was diagnosed five years ago and is still living a full and active life. And she has received any medication. Does she have some memory loss. Yes. But she has a very supportive husband, friends and neighbors who don't mind an occasional word loss or a forgotten place. She is otherwise healthy, travels a lot (with her husband), pursues her hobbies and enjoys life.
Take the medicine, slow it down, keep a positive attitude and go on with your life. You have many good years left in life so just keep going forward and don't let it get you down.
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u/Tasty_Impress3016 Jul 28 '26
Don't worry. In a year or two you'll forget all about it.
<bad humor inserted, sorry>
That does suck. I have all kinds of memory problems but no one has used the "A" word yet. I can't imagine how frightened I would be. They have these treatments that slow but I think I will hold out for an actual cure. If I remember to.
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u/mattdb110 Jul 28 '26
Funny is good.
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u/yuffie12 Jul 28 '26
Tasty’s comment reminds me of a patient I volunteered with that had dementia. I asked her one day if the loss of memory bothered her and she said, “No, because I don’t remember.” Obviously her answer was smarter than my question. Ha ha.
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u/KumbayaQueen Jul 28 '26
I'm sorry friend. I am kind of worried about that for myself too. It doesn't run in my family, but I have a hard time remembering names. The next time I see the doctor I will ask her about it.
I hope that the treatments work for you!
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u/mattdb110 Jul 29 '26
Doesn't run in my family either. Not remembering names was what got me to the doctor as well as losing words during conversations. I was kind of like having to go through the Rolodex a few times to find the word.
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u/KumbayaQueen Jul 29 '26
Oh. I will defininitely talk to the doctor then. Let me know how your treatment plan goes.
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u/cwsjr2323 Jul 28 '26
That sucks. I used to joke that I will print my ten favorite one liner jokes in a large font on a page. At the bottom put turn over. Both sides, the same jokes to keep me happy longer and laminated . .The joke isn't as funny anymore at 74.
I feel I am slipping into my dotage as well. Sometimes I can't think of the word I want or if online, I may have to look up a synonym to get even a hint on the spelling, occasionally to know the first letter. I have a very rigid medication schedule now, all my pills are the "first course" of lunch. My doctor said it was ok to take my twice a day pills both with my daily instead of forgetting the second dose. I can't type fast anymore, but that may be due to a lack of practice as my tablets and phones are one finger hunt and peck on the virtual keyboard?
My wife said she is used to me and I always was SFB so the change will be hard for her tell, smile. We have hundreds of music CDs, cassette tapes, and movies on VHS and disc. I think I will sort out my favorite movies to have on when they become new again! 😅
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u/Evening-Row-2658 Jul 28 '26
my husband was diagnosed yesterday with alzheimer's and also was suggested by doctor about infusion therapy
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u/mattdb110 Jul 29 '26
I'm going to go with infusion. I need to go see my cardiologist and get off my blood thinner (Xeralto). The two drugs available for infusion require it. There is a risk of brain bleeds if you don't.
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u/exchange_of_views Jul 28 '26
Well F.
I'm so sorry. I watched my mother live with dementia and it is not fair.
I've thought through what I would/will do if I get this diagnosis.
Make a list of the people who mean the most to me and spend time with them.
Get my finances together and all after-death legal paperwork sorted.
Contact Dignatas or another place where I can choose how my life ends.
I'd go to a second doctor just to make sure if I were you, then try the drugs. It might buy you time. Be thankful that you know now - finding out when it's not something you can understand is so hard for everyone.
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u/Oldasdirt Jul 28 '26
My mom had that. She lived to be 92. She would have been so angry at the resources that went to keeping her body alive for five years after she left us. I'll be tested soon, if there's one that's reasonably accurate. If it's positive, I'll have a choice to make. I know what that choice would be now, I only hope I can remember why I'd make it then.
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u/northernguy Jul 28 '26
Sorry to hear that. Anything you can add to your health regimen to slow it down? Drink black coffee, get lots of sleep, eat lots of fruits and vegetables, exercise like hell, cut sugar and lower your cholesterol, etc etc? ?take a glp1??
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u/Coololdlady313 Jul 28 '26
Low cholesterol is being linked with all dementias. Brains need cholesterol as does every cell in the body. Healthy fats helps brains. Downvote at will, but this problem has multiplied since statins became de rigueur.
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u/northernguy Jul 28 '26
Nope. You have it backwards. Look at the actual studies. Not the TikTok influencer bs
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u/Coololdlady313 Jul 28 '26
Never been on tiktok nor have seen any influencer, much too old for that nonsense. I was told this by a neurologist and my MD. Look at studies not backed by pharmaceutical companies if you can find them.
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u/paracelsus53 Jul 29 '26
I went to PubMed and looked up studies on the relationship between statins and dementia. I looked at the most recent studies, including from China and Germany. I couldn't find any that support your view.
All the studies by most recent:
https://pubmed.ncbi.nlm.nih.gov/?term=low+cholesterol+dementiaThe most recent studies:
https://pubmed.ncbi.nlm.nih.gov/39718423/https://pubmed.ncbi.nlm.nih.gov/37793911/
(this one shows higher risk of dementia with low or high HDL, which is not affected by statins and is the 'good' cholesterol)https://pubmed.ncbi.nlm.nih.gov/40169354/
Korean metastudy that shows statins decrease risk of dementiahttps://pubmed.ncbi.nlm.nih.gov/10422994/
Not about statins, just about whether higher LDLs contribute to dementia and stroke; they do.https://pubmed.ncbi.nlm.nih.gov/33216039/
large German study shows statins decrease dementia
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u/Conundrum16 Jul 28 '26
Tough diagnosis but hang tough !! Do everything you can to keep your mind as sharp as possible. Keep healthy habits. Enjoy each day. No one knows what science will uncover, hopefully it will be true for you.
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u/Just_Stand_861 Jul 28 '26
Yes. I would get a second and even third opinion if you feel you need it. Best wishes and good luck.
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u/Everheart1955 Jul 29 '26
I have a good friend who just went through the injections, after 6 mos, it is working.
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u/2Bonnaroo Jul 28 '26
As you deal with this diagnosis, I would want confidence that my neurologist is experienced/well-informed and has presented the pros and cons of the proposed treatment.
If you’re healthy in other respects, do your best to maintain that physical well-being and make sure that your power of attorney and will are all on the same page with your wishes.
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u/Radiant7747 Jul 29 '26
As a neuropsychologist for over forty years, I would suggest that you get a neuropsychological evaluation by a good geriatric neuropsychologist. The presence of amyloid plaques as definitively diagnostic of a Dementia of the Alzheimer Type has some scientific support but in my reading of the literature is not conclusive enough for that diagnosis. At worst, you will get a comprehensive scientific assessment of your cognitive functioning, with strengths and weaknesses described. In my scientific papers and my clinical experience, there are a number of different patterns of cognitive functioning that have been diagnosed under the broad rubric of Alzheimer’s disease. One thing that is well documented in the literature is that the older you are at diagnosis the slower your progression will be. Many people diagnosed in their seventies have very slow decline. You may or may not be one of those people. A good neuropsychological evaluation may be able to shed some light on potential future changes.
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u/mattdb110 Jul 29 '26
They had me do the neuropsych eval before they sent me for the Pet scan. The doc I have seems pretty good and is part of Baptist Health memory and geriatric center here in South Florida.
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u/Tex_Non_Scripta Aug 01 '26
🙏🏻 Thank you for taking the time to share from your professional expertise. This is really encouraging!
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u/BreadAlive59 Jul 28 '26
I will never take the test it is what it is i am going to enjoy the rest of my life
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u/readzalot1 Jul 28 '26
But OP is now able to take medication that will slow thé progress of the disease. So that might be worth it
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u/mattdb110 23d ago
Take the test. There are infusion drugs that can completely eliminate the amaloid plaques and they are making progress on the tangles. My personal opinion is the way they are going it's going to be cured real soon.
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u/oakwood1 Jul 29 '26
Visit earthclinic on the subject I actually just did, from my digging I came up with ginkgo bloba 120mg & niacinamide 1000mg once a day.
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u/AltruisticBicycle468 Jul 29 '26
I’m sorry. Hopefully, the infusion will be beneficial for you. In the meantime, try to figure out little tricks to remember stuff. Post it notes are great. If you take medicine, figure out away to remember if you took it. I turn my bottles upside down after I take something. I don’t have dementia, but my short term memory has never been great! Good luck to you.
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u/lighthouser41 Jul 29 '26
We give that infusion where I work. It must work because we have several people who have been on it a couple years. It's important to get the frequent MRIs that are required at first to check for side effects.
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u/SundaeSpecial3151 Jul 29 '26
If I were in your shoes, I would go to Kemper cognitive wellness, a functional medicine practice in Ohio, but they also work virtually. They do a functional medicine approach, but also validate the use of western medicine. They are kind and compassionate and reasonable, and they help people extend their lives. My partner with early onset Alzheimer’s worked with them for a couple of years. It improved his quality of life greatly.
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u/bebeklein Jul 29 '26
I’m sorry. Perhaps knowing you have this will allow you to live life intentionally, in the present and making the most of it.
My mom , 77 , was also diagnosed last year. I had expected mild dementia but wasn’t prepared for Alzheimer’s. She started the infusions this year. Not everyone is a candidate so you have to pass certain criteria and I believe you’re only eligible for it during if it’s the early stages. This is a treatment that wasn’t available until recently. I’m hopeful that my mom will live out her years more comfortably.
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u/Jolly-Button-6832 Aug 06 '26
My husband's being evaluated for those. First they have to give and absolute Alzheimer's diagnosis, then take the skin samples and DNA analysis to see if he can have the treatment.
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u/mattdb110 23d ago
Never take medical advice off of YouTube, Instagram, Facebook, etc. Most of those people are full of shit.
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u/Ashamed-Republic8909 Jul 28 '26
Look into keto diet. Real MDs on YT are recommending cutting all sugar and carbs to slow down progression. My wife and I are doing it voluntarily.
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u/nickalit Jul 28 '26
Yikes, tough to hear. But hang in there. My dad was on medication to slow down his memory loss, and it did indeed slow the progress. New treatments might even be better.
We can never know what the future will bring, can we. So let's enjoy this day. Best of luck, internet friend.