Newbie(1)

Janutt

Hello,

I was diagnosed with EOA last October 2021. I had suffered a heart attack/SCAD(spontaneous coronary artery dissection) a couple weeks before that.  I then suffered from strokes and brain aneurysm. My former doctor disagreed with the diagnosis and suggested it was an autoimmune disease or functional disorder so she refused to start aricept saying that it would be bad for my heart. I finally started taking the medication that my cardiologist said would be fine. I have noticed that I don’t feel like my brain is “oozing” out if this makes sense to anyone. I can talk better. 

I was an active person until all this happened and I am now feeling more motivated to get back to doing more of my hobbies that I enjoyed doing 

It has been a hard year for me because of this doctor but I am grateful that I found another doctor who deals with Alzheimer’s. I have a strong family history with Alzheimer’s 

I am looking forward to talking with others and getting support 

Iris L.

Welcome, to our online support group, Janutt.  I hope you can find answers here.  Can you tell me by what criteria Alzheimer's Disease was diagnosed as opposed to vascular dementia?  You seem like you would have those factors.

I don't have a diagnosis of AD, but my neurologist offered me a trial of Exelon patch, which is in the same class as Aricept.   Within a few days I noticed improvement in my speech and in my memory, like you.  I began in 2009 and I have been on it ever since.  I am also on memantine, generic for Namenda.  I follow Best Practices. 

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I hope you have a good weekend, Janutt.

Iris

Janutt

Hi iris,

I had a couple csf done as well as the pet scan which came back with early onset Alzheimer’s. Thank you. I did Pt, cardiac rehab and speech therapy. I learned a lot from my grandchildren with speech as silly as it sounds. They have no judgment whatsoever. I have been told that I can’t be left alone anymore because of risk of wandering. This will be hard since I was a avid runner/walker and would go out on the trails close to me with my grandchildren and daughters. I now have to rely on someone who will be with me during those times. This can be very difficult for some. 

Michael Ellenbogen

Don’t feel trapped by this dises. They make trackers and buttons you could press if you get lost. This still allows you the freedom. Also insure you have a tag on you with all of the contact information and medical. It may seem scary but there a lot of good people out there that can help.

Janutt

Hi Michael,

I was just thinking of that about a medical Id but never thought of buttons/trackers or even heard of them. I use an Apple Watch as well. I understand that this is a disease and don’t want it like many of my other health issues to stop me. I look at this as a new title to my new “job/resume” finding humor helps. 

Thank you  

Michael Ellenbogen

The key to all of it is never panic when it happens because things will happen.

Iris L.

Hi Janutt.  Try to find a park with a circular walking path so you won't get lost.  

Iris

Janutt

Hello,

I am nervous about this happening to me but I will try to remember not to panic too much. I do use our local ymca down the street with their track with our grandkids and my DH. That was an issue the other day with him. Saying I was too far away from him.

Iris L.

No, you shouldn't be too far away. If that's what he thinks, you should go along with it. Otherwise there will be problems. Try to live your life within the guidelines of safety. If you get lost, it will be a big upset. Can you make a plan that will satisfy you both? Also, how old are the grandkids? Little?

Janutt

I spoke with my DD’s about it and they also suggested the same exact thing as you. So we have started to talk about it more before we plan our trip to the park/track. Yes, they are young. Infant and toddler ages.

Iris L.

This is great! It's good to talk things out. You still have capabilities, you have to make accommodations with your family. Good work!

Janutt

Thank you!! I have moments when I wake up early and want to just get up and go out for a walk but right now I know better. I did mention this to my family and they have started talking about safety precautions just in case.

Amy Joy

Hi Iris!

Hi Janutt!

Hope you are well!

How is the family?

Iris L.

Welcome back Amy Joy! I hope you are recuperating well from your surgery. How are you feeling?

Iris

Amy Joy

Hi Iris!

Nice to hear from you!

How are you?

Anything new?

I’m living with a family member who

is now my POA.

I take new and stinger medicines to help me think clearer and be calm.

I see doctor for follow up exam soon.

Have a great night and take care.

Iris L.

Good for you, Amy Joy!

Janutt

Hello Amy Joy,

I am doing well thank you. How are you doing? I am adjusting to this diagnosis as best as I can. Not mad about it. It is what it is. I did go to the hospital the other day to participate in a research study. I am only able to do a paper and pen study with blood work due to my current health conditions. I have declined according to my age but I’m not extremely bad so I will take this

Amy Joy

Thanks Iris!

Hi jannut!

How are you?

I’m sorry to hear about your diagnosis and your health conditions?

How are things going?

Does anyone else in your family suffer from these conditions?

I first started struggling with my memory a few years ago when my family wanted me to get help. My primary care doctor did some tests which showed I was showing signs of memory loss and mental decline. From having a family history of dementia I more than likely have the same progressive symptoms and mental decline reflected in the many tests I was made to take.

I hope you have a nice weekend.

Janutt

Hello Amy Joy,

the heart attack caused by SCAD is rare disease and more common in healthy women. Doctors before never believed me when I would have chest pains always said it was heart burn. During the whole ordeal I did find out that there is a family history of aneurysms and my grandfather passed away from this. My children all have been checked. 1 child has one but they’re watching it. She’s in her late twenties. She’s the baby of them all. Alzheimer’s is on my father’s side His Mother had it, his siblings and he as well. He did pass away last year before I told him all my health issues. He died from brain bleed and complications. This past weekend I had a few incidents not sure if this happened to you or not but I went to put the oven on walked away and smelled something burning opened the oven and found a pizza box burning and it happened again the day after. I had no idea that I completely forgot about it. My husband said I would have yelled at him if he ever did that. I was dumbfounded. Then he was cooking on the grill as I sat on the porch and the grill caught on fire. I just sat there watching it. He came running out to put the fire out. Cars were driving by beeping. This has never happened to me before. I’m not going to stress about it

I didn’t show any signs memory issues until a couple of weeks after my heart attack and then it just spiraled down hill. I have noticed my memory is crazy not remembering anything even names at times. I think they said I was in the mild stage not sure what it means. Just learning

hope you’re doing well. Enjoy

thanks 😊

Amy Joy

Hi janutt!

how are you?

Im sorry to hear about your heart attack.

Did you know of having heart failure before your heart attack?

How are you doing since your diagnosis?

Hope you’re doing well.

Janutt

Hi Amy Joy,

no I did not have any idea about heart failure. The doctors did all kinds of tests and said I was good, but except one doctor who saw something wrong on my ekg and they said don’t worry about it since I was athletic and ate healthy. So later I did have a heart attack caused by my arteries dissecting inside my heart.

im doing well thanks. I am having issues lately with having real low blood pressure so I will be seeing my cardiologist in a couple of months and my primary doctor next week.

have a wonderful day today

hope you’re doing well too.