New diagnosis

jessie.0516

I'm 72 years old. I was diagnosed with Alzheimer's in September 2025. My neurologist said I will be at this stage 2 1/2 to 3 years. Then I will progress to next stage. I'm not eligible for infusion because of brain bleed and APOE 4 type. I live alone. This is very scary. I don't know how long I should plan to be able to live alone.

GEH

Hi Jessie,

For three years I was told that because I had brain bleeds and also APOE 4 that I could not possible start infusions. Well, my Doctor's at Barrows Neurological, took images of my brain bleeds and compared them to images three years prior. They determined the brain bleed was old and stable. Additionally, they presented to me the risks and benefits of the Leqembi infusions with my "pre-existing" conditions. Laid out the percentages of risks and benefits and I was able to make an informed decision to choose the infusions. I have only had one infusion, but it went well. Slight nausea when I got home and nothing since. They have MRIs scheduled after every two infusions to check for negative things I cannot feel. The Leqembi infusions actually remove the damaging plaques that damage the brain due to Alzheimers disease. Even if you start and have to stop the infusions it could possibly had already helped remove some plaque already there. I would highly recommend seeking a second opinion or go to your trusted neurologist with your wants and needs and maybe requesting some very specific risks vs benefits. You are worth it. Wishing you only the best of luck.

jessie.0516

Hi Ella -

Thank you so much for responding. I know this disease seems to be everywhere, but I still very alone. I am definitely going to contact my neurologist and if needed get a second opinion. I'm happy for you that you can get the infusions. I was really shocked when I found out I was APOE4 …. before all this happened, I had never even heard of it. My mother did have Alzheimer's.

GEH

Jessie, you are not alone. We are all here for you. Just reach out. Try to take it one minute, one step, one day at a time. It seems to help to make it all a bit less overwhelming. And remember to breathe. Hang in there.

Dorse

I am always reading that diet, exercise, and staying involved is a very good way to slow mild alzheimers. I was diagnosed 4 months ago with Alzheimer's. I wish someone could tell me how to get motivated when I feel like crap, like my head belongs to someone else that I'm not very familiar with??????

Watson1

jessie0516 welcome to the crew im 3 years on the alzy road,71 in age, on doneprozol because of hemochromatosis.test ing shows stable , with the alzy fluctuations . the new drugs aim is the same slowing the progression. the end result is no different its a gamble with time and an individuals make up. take what is available . get a support network this will be essential over time. get to know others on the journey.keep track of your self but don't worry much. adapt and understand there will be changes you will have time to make needed changes to the path. stop driving alzy is to unpredictable to chance a split second judgment error. yes its new, you will understand in time, its a damn hard pill but there is much to do besides……….

Dorse

https://alzconnected.org/discussion/74563/new-diagnosis

https://alzconnected.org/discussion/74563/new-diagnosis

https://alzconnected.org/discussion/74563/new-diagnosis

I was diagnosed with Alzheimer's 4 months ago. I have been told that there is no way to predict how fast (or slow) the progression will be. ??

Dorse

persevere

https://alzconnected.org/discussion/74563/new-diagnosis

Jessie, so sorry to hear about your situation. If you’re truly ‘alone’ - no family, etc. then you need to bring some help in at least once or twice a week to help keep an eye on you and your meds, etc. if you can afford to. And start talking with your doctors and Alzheimer’s association about future planning. I really hope you are not truly alone and have someone close who can help you navigate to get a plan together. There will come a time when you cannot be alone at all.

jessie.0516

https://alzconnected.org/discussion/comment/258153#Comment_258153

I do have family close by, but I do live alone. Thank you for your reply.

jessie.0516

https://alzconnected.org/discussion/comment/258099#Comment_258099

https://alzconnected.org/discussion/comment/258150#Comment_258150

I try and stay away from sugar and carbs. It's hard. I have a dog and we walk a couple times a day. That keeps me motivated. Sounds like we were diagnosed about the same time. I just thought there is no way I have this …. what a shock!

jessie.0516

Thank you for your encouragement. I have not been able to tolerate any of the medication. Does not agree with GI ! I have a virtual call with neurologist tomorrow, but they have said there are not alot of options with medication.

LBC83

On the APOE4 type, recall that you inherit one APOE gene from your biological mom and one from your biological dad. So there are three possible combinations of APOE4 genes: either you have zero APOE4 genes, or you inherited one from either your Mom or your Dad (so you have a single APOE4 gene), or you inherited one APOE4 gene from your Mom and one APOE4 gene from your Dad (so you have two APOE4 genes). The fancy terminolgy for APOE4 is homozygote for somebody who inherits two APOE4 genes (one from each parent), a heterozygote inherits only a single APOE4 gene from one parent.

The risks associated with infusions of anti-amyloid medications (i.e. Kisunla & Leqembi) are comparatively low for those without any APOE4 genes, somewhat higher for heterozygotes (with a single APOE4 gene), and a lot higher for those with two APOE4 genes (homozygotes). As an example, I am an APOE4 heterozygote.

This doesn't meant that people with two APOE4 genes are necessarily excluded from anti-amyloid medications. Rather, these people need to be aware of their higher risks, and clinics treating these patients presumably will be extra cautious in reviewing MRI results and diligently watching for any signs of ARIA.

GEH

https://alzconnected.org/discussion/comment/258912#Comment_258912

https://alzconnected.org/discussion/comment/258912#Comment_258912

Thank you so much for your always informative and insightful comments. I almost always learn new things when I read your posts. Really appreciate your contributions to our little group. 😊

AnnaPryb

Hi Jesse - so sorry to hear about what you are going through, I can't imagine what that feels like. I have lots of questions and would like to be able to offer some support.

My mom passed away on November 2nd. She was in Stage 5 and I have been her POA/Caretaker for the past 2.5 years. What she ended up dying from was a very rapid form of lung cancer (she had lung cancer in 2017, but was clear for 5 years). I had made the decision with her doctor about 2 years ago that my moms wish would be palliative care - my mom didn't remember she had cancer and did want to ever go through chemo again, so I followed her wishes.

My very first concerns for you is if

A) you have a POA in place and

B) do you have a will

C) Does someone in your family know your wishes?

I have lots of other questions and suggestions, if you see this and respond, maybe we can exchange email? I'm literally sitting in my childhood bedroom right now going through boxes of my moms paperwork/notes - she wrote all her end of life wishes multiple places and it's given me comfort.

Hope to hear back - Anna

PS I'm a 38 year old daughter and my mom was 78