So, I told you guys I wouldn’t keep you hanging for long in between posts aaaaand clearly I failed to keep that promise. Sorry😔
I wanted to wait until I received the results from my trial study, so I could write about that. It took longer than I intended, but I got them!
For some who are reading my blog for the first time, go back to my previous post, ‘Smorgasbord’, to learn about the research trial I am enrolled in. Better yet, start from the beginning!
I went back to Tampa July 24th for my one year follow-up of taking ALCAR. It’s a jam packed day of being poked, pushed, touched, boobie flashing, all eyes on you type of experience. It consists of an echocardiogram, EKG (electrocardiogram) and neurological testing.
To refresh your memory, the primary focus of this trial is the heart. To see if ALCAR is keeping the heart strong; that’s where the echocardiogram comes into play.
The echocardiogram (echo), shows the size, structure, and movement of various parts of your heart. These parts include the heart valves, the septum (the wall separating the right and left heart chambers), and the walls of the heart chambers. Doppler ultrasound shows the movement of blood through your heart.
The EKG takes like 3 minutes that checks for problems with the electrical activity of the heart.
And for the secondary focus–The Nervous System–is conducted by neurological testing…the longest and most precise part, which tests: mental status, cranial nerves, motor system, sensory system, the deep tendon reflexes, coordination and the cerebellum, and gait.
-Mental status: state of consciousness (awareness and responsiveness to the environment and the senses); appearance and general behavior; mood; content of thought; and intellectual resources (orientation with reference to time, place, and person; comprehension; ability to pay attention; insight; memory; judgment; abstract reasoning power; speech and language function; and intellectual capacity), e.g. repeating sentences, solving a simple mathematical equation, copying a drawing presented to me, and reciting three objects that the examiner mentioned earlier. Besides my occasional ‘blonde moments’ it’s safe to say I passed the mental status.
-Cranial nerves: The cranial nerves are a set of 12 nerves that relay messages between the brain and the head and neck and control motor and sensory functions, including vision, smell, and movement of the tongue and vocal cords. Some functions that were tested: eyelid strength; holding the eyes shut without the examiner able to pry them open. Tongue movement; moving the tongue inside with in both cheeks, eye movement strength, and strength of facial musculature.
-Motor system: The motor system includes the brain and spinal cord motor pathways, and all the motor nerves and muscles throughout the body. I must say I rock the strength test every time 😀😀😀
A fine motor test that I also have to complete is the Nine Hole Peg test. Nine pegs lie in a shallow container and on the start of the stop watch, I use one hand to pick up one peg at a time and place it in the hole on the plastic block next to the container. After all nine are in, I have to pull each one out individually back into the plastic block. I do this timed, two times then switch hands and repeat. It examines finger dexterity and it is definitely one of my least favorite tests.
-Sensory system: Sensation depends on impulses that occur as a result of stimulation of receptors located in the skin, muscles, tendons, and so on, and are sent along nerve fibers to the central nervous system (brain and spinal cord). The sensory exam is used to determine areas of abnormal sensation, the quality and type of sensation impairment, and the degree and extent of tissue involvement. A sensory exam involves evaluating different types of sensation, including pain, temperature, pressure and position. They used a sewing needle and pricked different parts of my body to detect the sensation of pain (nothing of which, is very painful–just gentle pricks). The examiner would have me close my eyes and brush a feather-like brush on my arms, legs, feet, etc. to see if the sensation was similar throughout the body. To test position, I again, closed my eyes and had to determine in which direction the examiner was moving my toe–I could have sworn I passed that with flying colors; but turns out I got every movement wrong. Clearly, my body awareness in space is off!
-Deep tendon reflexes: to sum this up in terms that everyone is familiar with is that little rubber hammer the doctor uses to test the reflexes on your knees and elbows…well, I have absolutely no reflexes. Not even a tiny flinch–which is common in most FA’ers.
-Coordination and the cerebellum: The cerebellum is the part of the brain that controls voluntary movement and motor coordination, including posture. For testing, I moved my finger from my nose to the examiner’s finger, going back and fourth from nose to finger, touching the tip of each. Also, I tapped my fingers together in a [semi] coordinated fashion and tapped my hands, back and fourth, as fast and smoothly as I could on my lap. To check coordination in the lower limbs, I rubbed one heel up and down smoothly (but not really so smoothly) over the other shin.
-Gait: Most take walking for granted. They don’t even need to think about it; just hop right up and start walking, running, dancing, skipping….as simple as it may seem, walking is a very intricate physiological process. How we walk—our gait—is influenced by a number of bodily mechanisms and nervous system reflexes. The body must be held erect; the limbs, head, and trunk must be held in the right position; the person must be oriented to the position of all body parts; parts of motor control involved with moving must be integrated; and so on. Because walking depends on so many different parts of the nervous system, it becomes difficult if not impossible for FA’ers to keep a good stride. Since my walking is obviously done only with a walker and short distance, they did more of a standing balance test: Standing without holding anything for a minute, standing with my eyes closed (usually lasts only 3 seconds), standing on one foot without holding on for a minute, standing with heel to toe touching without holding for a minute (yea, right! More like ten seconds).
Now, that http://www.nhlbi.nih.gov & http://www.healthcommunities.com and I just gave you a crash course in science of all the things you learned in high school, but like most of us, probably forgot… I can reveal my latest updates. I know what you’re probably thinking: “Finally! That babble of neurological testing was putting me to sleep!” I feel ya. It’s boring.
Ok, verdict is… There is no significant change, overall. The echocardiogram looks good. My heart never showed any problems from the beginning, so it is still as healthy. Two ways you can look at this: 1) my heart just has not been affected by FA (yet), or 2) the supplement, ALCAR, is keeping my heart as healthy as it’s been from the get go. Either way, it’s good to hear she’s beating strong!
The neurological testing, in their eyes, shows no significant changes because nothing has DRASTICALLY changed. Some things got stronger from six months ago, but some things also declined. Working out has continuously made my strength improve, but my coordination/balance, speech, and fatigue declined. Not by a lot, at all. It was only off by a few seconds from my last visit, which is why they can only label it as ‘no significant changes.’
I am content with my results. A tad frustrasted; but overall, content. I would love to hear, for once, that there has been significant improvement, but it’s also nice to hear I’m not going down hill at full speed! Gotta be thankful for that!
The University of South Florida does not cover travel and lodging expenses, so you can imagine how much traveling to Tampa can be over a course of two years…not cheap! A group of my friends put together a fundraiser to benefit mine (and my mom’s) travel costs for the remaining year of this study. It was amazing! They were able to pull this whole thing off in about two weeks!! With some help from family and other friends, and people whom I never even met donated gift certificates, silent auction baskets, sporting event tickets, a 50/50 and much more! My event planners also put together a Yeti cooler with tons of booze for a raffle. The amount they raised exceeded my expectation–it was such a success! I am still in awe by everyone’s kindness and generosity in their participation in my fundraiser. Whether it being a basket made, coordinating the event, bidding on the auctions, purchasing tickets or just donating money-it’s YOU who has helped me continue to be in this study.