fibromuscular dysplasia support, education & advocacy
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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My Silent Fear—The Big "D" by MonkeyMugs

Beginning in her mid 50’s, at the same age I am now, my mother started suffering TIA’s. Like me, she also had atherosclerotic plaque in both carotids for which she had stents in her late 50’s. Fortunately, she never suffered a full blown stroke.

Despite the stents, her TIA’s continued and she seemed to become more and more confused as she aged into her 60’s. It was difficult to watch my extremely beautiful and fiercely independent mother become somewhat “dingy”. Being less knowledgeable than I am now, and thinking 60 was OLD, I wrote it off as aging. I realize now it is very possible that my mother also had FMD.

She complained of all the things I now complain of …. the TIA’s; the spinal issues; the strange neurological sensations; headaches; numbness and tingling; disorientation at times; ringing and whooshing in the ears; and forgetfulness. I thought, as some of my doctors have told me, that these things were “all in her head” …

Well, yes … I suppose that these symptoms ARE all in our heads, especially for those of us with carotid or vertebral FMD.

The years rolled by, and in her late 60’s, my mother grew progressively worse. She started suffering frequently from TIA’s and the resulting “flight of ideas” and fumbling for simple, common words. She was eventually demoted from an executive secretarial position to answering the phones or filing … because she could no longer function well in her position.

My mother … the fighter … the lady who survived the Great Depression; the lady who lived out her dreams to be more than her circumstances that arose from growing up in poverty in rural Mississippi … to become educated and to live around and travel the globe as she often dreamed as a child. My mother … now in her late 60’s … diagnosed with …. severe Dementia … yes, that’s with a capital “D”.

Our genetic pattern is so identical. This is very apparent as evidenced by our paralleling health issues. We even look a great deal alike, even though my frame is much larger. When I attend family reunions, the older folk gaze long and hard at me and I see a glimmer of light in their eyes that quickly turns from joy to sadness. I know they see my mother. I see her myself when I look in the mirror … and it frightens the hell out of me.

The four years following her diagnosis of dementia at age 68 were absolutely heart wrenching as I watched her shuffle her feet and walk mindlessly about, unable to utter words. For these years, I literally crawled inside her skin, trying to imagine what she was going through, so that I could communicate on her behalf to her doctors and caregivers. Eventually, I was forced to place her in an Alzheimer’s and Dementia Unit (A&D Unit). Thankfully, it was a wonderful facility: the staff was nothing short of angel beings. However, all decisions rested on me for her health and well being during this time, as the balance of her family had predeceased her and my brothers were utterly selfish and useless.

Although most of those years were silent, there were brief moments of clarity for which I was thankful, even though the message was not what I wanted to hear. These were times when she had something very important to say and which came from deep within that place of strong will that still remained. Yes, she found a way to speak the words, even though she could no longer utter a single word. The first message was the statement: “I feel as if I am going crazy.” Later in time, when she started refusing food, I attempted to entice her by saying, “Oh, you like this … here, eat this”, and exasperated, pleaded, “Mother, what DO you want?” She looked at me clearly, with determined eyes of stone, and answered, “I want to die.” I told her that I understood and I would see that her wish was respected. She died six months later the day before Christmas Eve, 2006, at the age of 73.

When I gaze in the mirror, her ghost haunts me. I know without a doubt she had FMD in the same upper part of the carotids as I do as well as the same location of atherosclerotic plaque – a double whammy for our brains. Conscious of this, I do what I can in the form of lifestyle and healthy choices.

Will my mother’s fate be my own? I do not know. For my loved ones’ sake, I pray not. Many days, I quarantine the thought of this and absolutely forbid myself to go down that trail of “what if’s”. But yes, indeed, it is always there, tucked not so neatly beneath the surface: my silent fear that I dare not share with my family or friends - at least not for now.