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Kansas writer

Debra Guiou Stufflebean

Author's Blog

Sensory Overload

Since writing last, I've taken a road trip to Colorado on my own, and after successfully navigating that adventure, I received a shot of self-confidence. I feel like I'm running as fast as I can to keep a step ahead of Alzheimer's Disease. Everyone assumes that the FIRST thing you'll notice is forgetfulness, but in my self-analysis, the first difference I began noticing is anxiety. In fact, it has been going on for a few years and just keeps getting worse. Anxiety or panic attacks occur from over-stimulation of the senses. The nose doesn't actually smell; the nose is a stimulus intake area for the body but the BRAIN is what associates that stimulus as similar to something experienced before and files it away as a scent called "oranges." My friend, Marilyn, had a cochlear implant that bypasses the ears so that the brain can hear again. When the brain begins to malfunction, sorting stimuli can become overwhelming. The part of my trip that caused me the most anxiety was Denver. As I approached Denver from I-70, signs began directing TRAFFIC to the airport, bright orange cones were everywhere because of ROAD CONSTRUCTION, flashing lit signs were explaining DETOURS for connecting highways, road signs were revised with fluorescent tape, large box semi-trailer trucks were obstructing my view -- because of that, and an inability to get in the right lane, I missed my exit. I wasn't totally alone, I had taken my toy poodle, Doodle, with me and when I was finally able to take an exit ramp, I pulled into a gas station and sat there trembling and cuddling him like a child with a stuffed animal. Needless to say, I did not go home the same way, even if it did take a bit longer! I was doing fine on the trip until everything happened at once and it was more than I could sort out.

I've always loved to travel and have been to Europe a few times but a couple of years back, I was afraid to go alone. I wasn't afraid to be part of a tour group. I was afraid of the coming and going at airports. My daughter, Shelby, accompanied me and can attest to the role reversal, her the mother, me the child, in large airports. Part of me knew even then that something about me was different. And yet, just recently I've booked another flight for myself to Long Island, because I'll be damned if I'll let fear stop me from living this time to the fullest. 

Sensory overload and stress is leading the way to my demise at work. That's why people with Post Traumatic Stress Syndrome have issues and I was surprised to find only a few articles that included this area as a prelude to Alzheimer's. https://best-alzheimers-products.com/alzheimers-affects-perception.html ; https://www.mentalhelp.net/depression/sensory-defensiveness-or-sensory-overload/ ; https://www.webmd.com/alzheimers/news/20150114/depression-anxiety-can-precede-memory-loss-in-alzheimers-study-finds#1 . For that reason, I think it is important to document this experience.

A really key component to directing a nonprofit is keeping all of the balls in the air. I've begun relying heavily on group coordinators to keep all of our activity groups running. I've always been the type of leader to give a great deal of autonomy to people to do their jobs anyway, because I thrive on autonomy, but I routinely gave oversight, even if it was just being present periodically to observe. I simply could not get my work done and keep doing that. Likewise, just answering the phone and trying to keep my mind on task after the interruption wasn't working. Handling money became a nightmare. At any given time, people may be registering for classes, trips, making donations to a charity for whom we're raising money, making an extra donation to Shepherd's Center, or paying their annual dues. Some people mail these funds, some pay online, some hand me an envelope when they see me out and about, some walk payments into the church building, some stick cash in my face and expect me to remember what it is for. And, of course, it is always accompanied with questions like, "Did I already pay for that trip?" or "Have I paid my dues this year?" In isolation, none of this would be difficult, and I did it for years, but what no one seemed to realize was when you take it times the number of people I encounter (active membership of 400 and 200 semi-active), I was overwhelmed! We created a bookkeeping position to work with the Board Treasurer and created a counter group to process registrations and finally I felt like I could breathe again. And then there was the trips -- oh the trips -- planning, promoting, registering, accompanying. This past year, we sub-contracted if you will, sort of, to get help with this, but my anxiety level is still through the roof, especially as a trip nears. I've had SEVEN cancellations before a trip this coming week (and, for legitimate health reasons) but the more anxious I get, the more agitated I become, so I know I'm not showing my best self. Yesterday the Board tweaked again the transfer of trip responsibilities to further create a buffer. But when I lay in bed at night, I ask myself, isn't this problem YOURS? I tell myself that some of these decisions have been responsible leadership due to growth, even if it was precipitated by my anxiety, but my inability to let loose of the stress really is MY problem. For example, I can give people the name and number of someone else to call regarding cancelling their space on a trip, but I can't seem to stop myself from getting worked up over the number of cancellations, and the number of people in health crisis that led to the cancellations, before hyperventilating. And so, my friends, the time is growing near for me to be able to walk away while I can still hold my head high.

Dizziness

In 2015, I awoke and crawled out of bed, because my husband was having a fit over spilling something on the floor. I assured him it wasn't that big of a deal and immediately bent down to start cleaning it up. Then "no big deal" turned into a "really big deal" when I lost my balance and fell to the floor. As I attempted to stand, the entire bedroom began spinning out of control. With his help, I navigated back into bed. I was so nauseated, I threw-up. I turned over and laid face down into my pillow, willing the dizziness to stop! Anyone who has had vertigo knows how horrible it feels to have your equilibrium malfunction! I couldn't raise my head, let alone sit up or walk! I didn't know it was vertigo. In fact, it was a relatively short, but violent episode. I stayed in bed an hour until everything subsided. I can't recall if I fell back to sleep for a while but when I did get up, I felt like my old self. I got dressed and went to work.

Later in the afternoon, I had an appointment at a salon for my daughter to cut my hair. I was telling her about my crazy morning while she was giving me a shampoo. She put a towel around my hair and raised my head from the basin, I blacked out and wound up on the floor. When I came to, the shop was spinning, I threw up, my teeth chattered, saliva ran from the side of my mouth, and I didn't want anyone to touch me. At that point an ambulance arrived. I couldn't stand to be moved. Being put on the gurney, or feeling the ambulance race down the street, all I could do was heave and beg for it to stop. Emergency staff did an MRI, thinking I was having a stroke. This time it took longer for me to come out of it and I was sent home with the diagnosis of severe vertigo. Oddly enough, almost four years later there had never been another episode.

March 2019, I had laser surgery twice on each eye. Without a doubt, right up there with childbirth as one of the most painful things I've ever had done. More on that later. Each time I was confined to bed afterwards for a few hours and each time, I felt swoony, dizzy, upon awakening, but nothing more came of it. A couple of months later, I had the cataracts removed from my eyes. After the first eye was operated on and I was asked to sit up on the edge of the gurney, I was very dizzy. Too dizzy to walk, they laid me back down for about 15 minutes. After the second eye was operated on for cataracts, the medical staff took great care, delaying laying me down until just right before surgery, wheeling the cart very slowly to and from the operating room, having me lay on my side for a while before sitting up. The precautions worked and things went fine.

Over subsequent weeks, however, I've been having dizziness in the reverse of what one expects. If I lay down on the couch to watch some television, my surroundings will swoon for a few seconds. When I lay down in bed, the same swooning sensation is present. Last night I got up to use the restroom, went back to bed and when my head touched the pillow, the bedroom began spinning. I held my eyes shut tightly and prayed for it to stop. After a few minutes I must have fallen back to sleep. The eye surgeons are certain that the procedures, themselves, could not have had a bearing. Afterall, they say, Vertigo is caused by the rocks in the inner ear. Then why? Why has this all started again? If it wasn't the eye surgeries, then what else is going on with my head? Was it really Vertigo in the first place? Why don't I Google to see if there is any correlation between Alzheimer's and Vertigo.

Dizziness could be an early sign of Dementia by Dr. Ananya Mandal July 25, 18 journal of Neurology

A new study has found that people who feel dizzy when they stand up from lying down or sitting positions, are more at risk of developing dementia or stroke. Hypotension occurs when the blood pools in the lower extremities and the brain is temporarily deprived of oxygenated blood causing light headedness. This study explored the connection of hypotension with brain disorders like stroke and dementia. Dizziness itself was not an indicator of a disease, but findings were statistically significant in that almost 10% of the 11,709 study participants went on to have dementia and 7% went on to have strokes. Repeated episodes of orthostatic hypotension has been linked to impaired blood flow in the brain.

 I'm warry about starting the Aricept as it says on the prescription that dizziness can be a side-effect. Even if I become dizzy, I may be unable to determine whether it is drug related or caused by the changes in the past few months which may or may not be a symptom (or cause) of changes in my brain.

What is MCI?

No, I’m not talking about the airport in KC. I’m talking about a diagnosis I received earlier this year - Mild Cognitive Impairment. This is the new politically correct term for a person who may be in early stages of Alzheimer’s Disease. I’ve been very forthcoming with members of my family, my church, and my “peeps” (whom I love dearly) at Shepherd’s Center but now it is time to just lay myself bare to everybody. It takes way too much energy to pretend, according to who knows and who doesn’t. I am determined to hit this head-on and not hide behind the taboo people have of keeping a mental illness hidden. The mind is an organ like any other part of the body and we share about cancer and heart disease, so why not Alzheimer’s?
I had been wondering how to go about this, and then yesterday the answer came. The August 21, 2019 Alzheimer’s Prevention Bulletin arrived in my email inbox. The leading article was entitled, “More Studies seek People with Mild Cognitive Impairment.” Indeed, an Alzheimer’s clinical trial was behind early diagnosis. Two years ago researchers from the KU Med Center Alzheimer’s Research facility came from Kansas City to give a program at Shepherd’s Center. At the time I posted on facebook that I did the DNA swab to see if I was a gene match. After a year went by, I forgot all about it. Then in March, I received an email asking if I would like to know the results and be interested in being in a clinical trial. I wasn’t surprised to have the APOE4 gene given that my father had early onset Alzheimer’s. An MRI further confirmed significant spaces in the basal ganglia and brain atrophy, and a PET scan confirmed elevated Amyloid Plaque. After being bled dry from 24 vials of blood being taken, and three EKG’s, I was ready to now start the medication that they hoped would either slow or stabilize what was happening to my brain, (or worst case scenario, be a placebo). After the first week of taking my pill, nationally at Penn State the trial was cancelled. All we were told was that since the study had began a couple of years ago, too many participants had actually gotten worse. So, I was either rescued or screwed.
According to the bulletin, MCI is the period of time between normal memory and thinking, and dementia. It includes impairment in thinking skills that goes beyond normal age-related changes but does not meet the criteria for dementia. With age we expect to see some changes in learning, memory and speed of thinking. However, with MCI the changes are more pronounced. People with MCI can experience some changes in everyday life but MCI doesn’t interfere with their ability to complete daily tasks such as shopping, household chores and managing money.
MCI can be defined by different subtypes depending on how it impacts your thinking skills. A person can have symptoms in one or more areas of cognition. These include:
  • Memory – new learning, recall and retrieval of information
  • Attention – concentration and focus
  • Language – ability to come up with words, name items, understand others
  • Visuospatial function – understanding spatial relationships
  • Executive function – problem solving, reasoning, controlling behavior
People who have problems with memory have what is called amnestic MCI. Twice as many people have amnestic MCI versus non-amnestic MCI where memory is not impaired. Amnestic MCI is more often a precursor to Alzheimer’s disease. I feel that I am still high functioning in language, visuospatial and executive behavior, even though word choice is starting to be a factor. Over the past year I have struggled with retaining short-term memory, especially if I am interrupted. In doing my job, I prefer that people leave me voice messages or send me emails because I can go back and revisit them, whereas, if someone tells me something on the phone, it may be a few days later before I recall that someone talked to me . . . and dang, what was it they wanted! I’ve also noticed that focus is an issue. I can be reading something that will remind me of something else, and then I just space out for a while, off in my own little world.
My greatest fear is not being able to write. I think so long as I have Google and can type, I can weather what comes down the road; I understand that things could stay basically the same for months, even years. But I also understand that things could change very quickly. For that reason, I’ve decided to blog about this experience. Who knows, it may help someone. My doctor is starting me on Aricept, and I am enrolling in a different clinical trial -- no drugs -- just annual MRI and PET to see how the images change. In 2015 I had an MRI because an ambulance ride to the hospital had some convinced I was having a stroke. As it turned out the diagnosis was severe vertigo. That MRI will become my baseline. If you’ve read this far, I want to thank you. It helps knowing I have friends out there!

Who's Lying?

I'm trying to work through in my mind how I feel about the up-roar over Brett Kavanaugh. I have no reason to think that  Christine Blasey Ford is lying as I cannot imagine any woman putting herself in the line of fire where she now even receives death threats. I also think about how many people have done something as teenagers that they sorely regretted. I'm sure SHE regrets whatever brought her to that bedroom. Do I think that attempting to rape someone is "boys will be boys" conduct - ABSOLUTELY NOT, but does alcohol impair judgment - ABSOLUTELY! It isn't the facts of the incident that I keep going over in my mind. It's the timing and who I believe to be lying. I am so sick of political football where the end justifies the means. Knowledge of this teenage assault was known back in July but Democrats sat on the information so that they could orchestrate outcomes to serve their own purposes. Just because that's the way the game is played, doesn't make it right! I don't think it was fair to either of the people involved. Had Kavanaugh humbled himself, admitted to the wrong-doing, publicly apologized to the victim, I would have respected this man as someone who regretted what he had done and has lived a life without any further incidents to be divulged. I do not think it would have cost him his confirmation. Apparently most Americans could care less about sexual behavior, look who was elected as President. Kavanaugh had to know that every day of his life was going to be scrutinized under a microscope. I think because Blasey did not press charges at the time, he believed that she would not have the courage to come forward. He was wrong. In my opinion, he did not pass the test. He took the low road, attempting to deny what happened. There's a reason testimony is taken under oath. Unfortunately, too many think they are above the law and it doesn't apply to them. 

Plucky old Gal

I'm blind as a bat without my glasses, but like a bat I have sonar capability. I'm walking my dogs when it became apparent that a mosquito got trapped behind my glasses. I removed them, put four dog leashes in one hand and proceed to beat myself in the face with the other hand. Geez the mosquitos are bad this year! I sprayed my arms and legs so I guess I only have myself to blame for the facial attack. I'm pretty sure that I killed the bugger but the match was a draw since I now have a big mosquito bite under one eye. My eyesight has progressively gotten worse the older that I get. I grumble about it every day because after I scan my chin area in the mirror for unwanted chin whiskers, I have to remove my glasses to pluck the unwanted hairs under the eyebrow. I don't know how many X-magnification that my vanity mirror is but it's the maximum. I just wonder, at what point do most women just give up on plucking their faces? And then mascara goes out the window too. I called one of my daughters so excited the other day because an online ad for fake eyelashes popped on my laptop screen - $50 a pair BUT they were magnetic! No mascara or glue necessary, just position an eyelash strip on top of your own eyelash and underneath your lash and click! The two fakes would stay in place sandwiched around your regular lashes. She said, "Mom, I'm pretty sure you can get those for $10 at Walmart, but let me know how they work out." Well I couldn't SEE to put them on, let alone position them correctly and there is no way that you can wear your bifocals and do that! I thought about using tweezers because I'm a pretty good plucker, but that didn't work either. Even if the tweezer holds the top one, you have to see to position the other lash directly under it or they'll click and then you've got something that looks like a caterpillar crawling towards your nose. I give up! My hats off to you ladies who have the eyesight to continue to wear eye make-up but I fear my time doing so is running short. I'm leaving instructions, however, for my daughter/granddaughter whichever finds time to visit me in the nursing home, to rub my chin and pluck any unwanted whiskers. I am grateful that the same French genes that make me so hairy are the same ones that keep my hair dark so at least I'm not a slave to getting my hair colored!

Adjusting to Change

I'm mad as hell and I'm not taking it any more - except that I'm not really mad - I'm sad, and the reality is that I have no choice but to accept the human condition of aging. What's the alternative? Death? Perhaps it is the lack of control that I find myself butting up against. I am married to a man who is running out of steam. His health is compromised and restricts a variety of things, from yardwork to travel. I know this wasn't in his plans for the future either. My adult children have their own problems that if it were within my power, I would love to fix for them. My grandchildren seem to have forgotten us and forgotten that for years we devoted our spare time watching the precious darlings in their various activities. Even my dogs are plotting against me, shedding on every square inch of my home so that I am a slave to housework. Believe me I know that I need a healthy dose of GRATITUDE to fix my ATTITUDE. My pastor had suggested that we keep a gratitude journal this year, but it fell by the wayside as one more thing on my "to-do-list." Maybe that was just an excuse, because as a writer, nothing makes me feel better than unloading my feelings. Then it occurred to me that maybe people need to decompress first in order to clear a path to gratitude. And so I decided to start this blog. I'd love to hear from others about how they handle this time of adjustment, so long as we make a deal that we'll end our posts with one thing we're thankful for. Today it is my home. I love my house and my yard and it brings me much satisfaction when it is clean and kept up. 

Is Most of America in the Middle?

I read a newspaper article today about the rising Democratic Socialist party. It's the bookend of the Republican Tea Party. At times like this, the last thing we need is even more polarization. For several years I have found myself more in the middle than what either party platform was promoting. I think many Americans are there with me. The problem is that voting for the independent is often a vote for the status quo because any challenger needs to have those dissatisfied cast their vote for them. Would America be better served with a 3-party system? Would it be possible for us to get there by pushing back in favor of the middle ground where negotiations run this country instead of polarity? I think at the very least, we need an independent Supreme Court but have my doubts as to whether even that is doable. In my opinion the courts let us down when they allowed big money, instead of capping contributions, to buy elections. Make our candidates raise money the old fashioned way, one voter at a time.

Giving Birth

I can't get over the similarities between writing a book and birthing a baby. Months go into the preparation of a story during which time it grows. Recently I did an expanded and revised second edition of my book, "A French Huguenot Legacy." It took many late hours, not to mention many LONG hours sitting in a chair typing on my laptop. Hours would go by before I'd realize that I hadn't taken a break which can result in lower back pain and walking kind of funny. I even experienced tendons snapping in the groin area, similar to when the baby would ride low in the hip region. I guess these are called "flexors" and boy are they painful, usually occurring while getting up after hours in the same seated position. Of course, I'd turn to my husband for sympathy and whine about how a massage would sure feel nice.

What precious sleep I did get is often interrupted by waking moments when you lay awake trying to come up with a name. You dream about what it's going to look like when the package finally arrives, and wonder whether others will understand if you can't hide the pride you feel. When it's time, you're so ready to get it over with, only to be told that it's going to take a little longer, you'll need to push a little harder, and the due date is only an estimate. When it comes, it won't be perfect. They never are; they're the product of fallible humans. So if it takes so much time and energy, why go though it? The answer is revealed in the title of my last book. You want to leave a legacy. Not everyone will have a best-seller (or son/daughter who will become President) but at least you've left a part of yourself behind, a baby that will tell others something about you; a baby that will share wisdom that only you feel you can convey, a baby that will inspire others to use their gifts.

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