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Newbie here

Hello everyone

I have recently been diagnosed with Vascular Dementia, I am 55 a bit young for this disease I’ve been told. 

For the last few years myself, family, friends, physical therapists have all thought I had MS. Finally got to UCSF and was totally expecting and prepared for the MS diagnoses but instead was told VD.  I am currently waiting for a call from UCSF memory and aging, my Dr is hoping to get me into some clinical studies I think. 

My diagnosis appointment went way too quickly and I was not able to ask many questions so here I am, looking for answers and suggestions

I am just totally blown away and pretty scared with this diagnosis. Is there anybody on here that also has vascular dementia? 

Thank you for taking the time to read my story. 

Comments

  • Iris L.
    Iris L. Member Posts: 4,417
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    Welcome, Sunshine.  I hope you will find some answers here.  It can be challenging to make a diagnosis of any of the dementias, because there is much overlap with other disease pathologies.  Multiple sclerosis can cause a cognitive impairment.  Were you diagnosed with neurocognitive testing?


    I have had a diagnosis of cognitive impairment not otherwise specified for many years.  There may be some vascular involvement.  I also have a  diagnosis of systemic lupus, also sleep apnea. 


    If you have cardiovascular disease, do all you can to treat it.  Watch your blood pressure.  Check any medications you take now for memory and cognitive side effects.


    Have you had to stop working? You may be eligible for SS Disability benefits.


    Please write back with more questions.  Read alz.org, there is good information there.


    Iris

  • TommyT
    TommyT Member Posts: 24
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    Hello Sunshine! My name is Tom. I was diagnosed with EOAD at age 58. We have that in command, an early diagnoses. I'm 72 now.

    My secret is to accept the dx, get medicated with Alzheimer's drugs, keep your mind active and relax. I moved into a Senior Living facility where everything is done for me if I want. After my dx I was Immediately put on Aricept. There are many other drugs in that category. Later I was started on Namenda also.

    Good luck and I hope that we can talk later.

    Tom

  • Iris L.
    Iris L. Member Posts: 4,417
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    TommyT wrote:

     I moved into a Senior Living facility where everything is done for me if I want. 

    This is the type of peer advice that I appreciate.  I need to look for a situation where things are done for me.  Thanks, Tom! 


    Iris 

  • babyface68
    babyface68 Member Posts: 16
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    Yes l have this disease. I am 55 was diagnosed at 53. Its all my fault. I caused my own early death. My family will never forgive me for this.

  • babyface68
    babyface68 Member Posts: 16
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    Would love to chat with you and exchange numbers.

  • Iris L.
    Iris L. Member Posts: 4,417
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    Hello babyface, Sunshine posted over two years ago (2021). I'm sorry you have been diagnosed with vascular dementia. I fell into a deep depression years ago, but I got out of that depression. Sunshine is not posting but perhaps others can communicate with you on the boards.

    Iris

  • babyface68
    babyface68 Member Posts: 16
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    Did you have a stroke and didn't no it. I caused my own death

  • babyface68
    babyface68 Member Posts: 16
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    I want to die. It's all my fault that i got this awful disease. I caused it had a stroke and didn't no it.

  • Iris L.
    Iris L. Member Posts: 4,417
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    edited November 2023

    Babyface, many people have stokes and don't have dementia. No one can predict who will develop dementia, except for those who have genetic dementia (5%). It's like cancer, some people get it and some people don't. Have you been diagnosed by a neurologist? Is your stroke recent? Are you getting any rehabilitation?

    Do you have plans for Thanksgiving Day?

    Iris

  • Mimi50
    Mimi50 Member Posts: 139
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    edited January 4

    My husband was diagnosed A year ago with vascular dementia. He had stroke in 2020. I would never under any circumstances want him. To blame himself for his stroke. You are not responsible for your stroke either. Your family should be supportive and help you. My husband and I still enjoy each other. He is at the early stages now. I go with him to his doctors appointments this way. He doesn't have to try and remember if there are any changes. In his condition. If your family can start to do that for you too. That would help you a lot. While you still feel pretty good like my husband. You want to name someone that you trust. As your Power Of Attorney so they can handle your finances. When you are not able to do that anymore. Also Medical Power Of Attorney so they can make decisions. For your care when you can't do that either. He has doctors appointment next week. So getting those two things taken care of. The other thing is having driving assessment. So the doctor can let us know if he can continue to drive. You are sick and need help. Blaming yourself for something that is not your fault. Adds stress you want to avoid stress because it can make your symptoms worse. Sending hugs and good thoughts.

  • Janutt
    Janutt Member Posts: 131
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    Baby face,

    im sorry that you’re blaming yourself because of the stroke. I had a rare heart attack that I couldn’t prevent and then it exasperated me to have EOA, a brain aneurysm family genetics and to have 2 strokes that I had no idea I had them until I was admitted a few months later because of heart issues. My pcp wanted to cover her… cya she said and refused to put me on a statin medication. So don’t blame yourself for the stroke. You will get through this because you have a supportive family and you’re stronger than you think

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more