A PATIENT JOURNEY: DIARY OF A MS PATIENT by JANICE DAVIS
18 years ago, I had my 2nd M.S. event and not only lost all function in my whole left leg, but my mind/brain wasn’t able to recognize that limb at all. 8 years later, even though I can feel my leg, I thought that my brain was recognizing my left leg, but it wasn’t!
After what seemed like hours of diagnostic testing, I was introduced to Dr. Antonucci for the first time. He performed a really thorough examination and we really uncovered a lot! We were able to identify that one reason my right leg is not as spastic and as painful as my left is that I actually have less feeling in my right leg! I know there is minimal feeling in both legs but didn’t realize the huge difference. The second reason is my brain has poor recognition my left leg or left arm also! Some other things they noted in my exam were my eyes can track a target well from left to right, but not right to left.
My left side vestibular (inner-ear) is over-amplified by my cerebellum in comparison to my right, so the signals sent to my brain from the environment makes me fall to the right which contributed to my poor balance. My M.R.I.’s showed lots of cerebellum damage and most of the findings listed above come from the cerebellum. I know my cerebellum is damaged and he confirmed it by my specific problems.
My autonomic nervous system is not working well, so that contributes to my poor bowel and bladder function, including bouts of constipation. I had poor respiratory excursion, so I was not getting enough oxygen when I would breathe. The doctors explained to me that the ribs should move like bucket handles when you breathe and because mine was not doing that properly, I was only filling the top 1/3 to 1/2 of my lungs with oxygen. Much more efficient breathing takes place in the lower lung field of people. I am currently practicing the same Diaphragmatic Breathing exercises which I used to teach my COPD clients! These poor mechanics are contributing to my neck and upper shoulder tightness/pain. We think that all of this was mostly caused by my multiple sclerosis. Here I am thinking that this problem was from our new mattress and new pillows. No!
This last two weeks I have lost much, if not all of the salty & sweet sensations while eating. Dr. Antonucci told me which nerve contributes to this, and thinks that he may have a way to get it back for me!
After my testing and exam, we performed one therapy session, today. They wanted to see how I would respond to the therapy and see if they had to modify anything before beginning tomorrow. The therapy took about an hour. They put electrodes/electricity on my left leg to stimulate it and mimic our walking and step sequence in step order (thigh, ankle, then lower leg) to teach my leg, brain, and new neural pathways how to walk better. My brain needs better recognition of the left side of my body and it doesn’t so my whole body’s muscles overcompensate when trying to walk and use my arms to balance. I think that my damaged cerebellum is telling my muscles to do this. All of this extra energy that I use to function every day with these bad neural pathways, is what is creating my fatigue.
One exercise they used is having a full-length mirror leaning on the inside of my left inner thigh and facing towards the inside of my right thigh and arm. As they exercised my right arm and right leg in opposite directions simultaneously, I had a flashing checkerboard iPad program constantly flickering just inside my lower right peripheral vision. I looked in the mirror the whole time that my right side was being exercised. My brain was picking up on the mirror image AND the iPad program at the same time. This technique stimulates the cerebellum and parietal lobes in the brain. The “mirror image “of my right leg being exercised in the mirror makes my brain think that BOTH legs are getting exercised, thus trying to get my brain to recognize my whole left side too by using mirror neurons.
Three full sessions tomorrow, but had only 1 today and I kid you not, I feel foolish in saying it, but my urine stream is considerably stronger and my gait and balance are noticeably better. This was even after an exhaustive day and 3 hours of sleep! I was so excited that I couldn’t sleep. Thanks for listening. Will update tomorrow. I really needed the Plasticity® Brain Center’s expertise!
I must take the time to mention here before I forget, just because you may have my exact symptoms DOES NOT mean that you can copy my plan and improve. It is very dangerous to try
that. You can mess your brain up really bad! I have the same symptoms/problems as my friend Martha who was treated here, but our programs are very different.
This morning, I noticed audible bowel sounds (tummy growling) and a much stronger urine stream. I think this means that they have found a pathway to stimulate my autonomic nervous system! I have a sense of peace now which is wonderful! My right leg is coming alive with sensations and an oddly pleasant throb. I can feel my toes, and found that I am kicking off my bed sheets with BOTH feet when getting out of bed! My left leg hurts 90% less than before and I have not needed to take Tylenol! I just happened to remember that in the last 5 years I have become moderately dyslexic with numbers. They have added this in my plan of care. I do have problems staying asleep and they are addressing this too.
THEY WANT TO IMPROVE YOUR QUALITY OF LIFE. THEY ARE ON YOUR SIDE.
Today I performed what I call “the clap -o-meter” (it’s called Interactive Metronome). I forgot to mention this exercise to you yesterday too. While looking at an image on a computer screen an item blinks to a metronome, while you listen through the headphones you are wearing, and clap your hands with the beat. This is a great whole-brain exercise, but they told me the research shows that it targets mainly my cerebellum, frontal lobe, and brainstem. Although this sounds hard, it is not that bad.
I actually was a candidate for MARC, which stands for the Multiple Axis Rotational Chair. It’s currently the only one in the world! I did 2 triple somersaults forward with a slight tilt to the right. This rotational machine that helps to exercise my inner ears, and correct my balance problems. I am actually liking it even though I never liked carnival rides!
All the therapy is fun and challenging. The staff is so knowledgeable, caring, nice, compassionate, motivational and truly interested in me as a person. They want to improve your quality of life. They are on your side. I still have the gains that I had yesterday and it feels so good to think clearer, walk straighter, have better balance, and be able to even feel tense my stomach muscles. I had no feeling before. It is an exciting time with unbelievable results in such a short time! My mind, arms, legs, and whole body are working much more in tune with one another. It feels as if before M.S.!! Day 3 tomorrow is reassessment day. I can’t wait to see my results as I improved today quite a bit. Talk to you tomorrow. Thanks for listening.
I am excited because I will retest today. I feel as if my body is back online again!
I got to re-test today in this morning. Dr. Antonucci doesn’t know yet, but I have improved on the C.A.P.S. (a balance machine that is connected to a super sensitive scale/ computer that can even pick up your heartbeat). I improved on the solid surface, but not so much on the foam surface, yet. I guess it would be greedy to expect both in just 1 full day of treatment. I’m just happy that I’m improving.
Dr. A examined me just like he did on Monday. He told me that if I wasn’t improving that he would have to discharge me. I’m wasn’t worried about that, because I knew that I was improving. But his honesty is very comforting. In his exam, he decides if we need to add to the current plan, change the plan altogether, or leave it exactly as it is.
Today he added a couple things. He told Dr. Kalambaheti that he wanted me to gargle water for 8 seconds prior to performing my balancing exercises, which stimulates cranial nerve 9 & 10. Cranial nerve 10 (Vagus nerve) innervates the gut (stomach and intestines). This helps the motility or motion in my stomach to improve my chronic constipation.
He looked at my balance testing and told me that we had shifted my weight too much forward onto my toes, so now on M.A.R.C. (Multi Axis Rotational Chair) will somersault me backward with simultaneous rotation to the right. The double-backward flips are very tolerable.
A bead string exercise was added to my program to teach both eyes to work together. This is also fun to do. With the clapping game (Interactive Metronome) they made it more challenging by adding something called a Stroop Test, where I have to alternate between reading a word and saying the color of the ink that the word is written in. It’s challenging but still fun! The Stroop test activates the frontal lobe, which is where our thinking takes place. The cerebellum and frontal lobe in the brain are connected so they share information. The cerebellum is where we process our balance.
Today was a very rewarding day! Although some clients may look like they are doing some of the same exercises, their own prescriptions are totally individualized. Dr. Kalambaheti told me it’s like baking (she loves baking). You can combine the same ingredients differently, or in different amounts, and have a completely different outcome. That is why I tell you how dangerous it will be for you to copy what I write about!!
This place is awesome, and I will bring back brochures for those interested. The staff is so accommodating and ask daily how we all are; if we have any questions or needs like how is it in our motels; are we being treated well; how did our evening go etc. They really care and work well together and meet all our needs. See you tomorrow.
THE TRICK IS TO ENTER THE PLASTICITY BRAIN CENTERS EARLY IN THE DISEASE PROCESS.
Last night I noticed BOTH my legs had a pleasant pulse sensation in the areas that Dr. K has been stimulating. It is wonderful to have my legs in sync and talking to each other through my brain. Today I also noticed that I am walking with my heels down first, then following through with my toes touching down then stepping through to complete the stride process. I know it sounds insignificant, but like Dr. Antonucci says, you can’t appreciate something like that until you can’t do it. This is how I walked pre-M.S.! It feels like it used to feel!! I no longer shuffle my feet to walk and trip with my drop foot!! While walking up the stairs to the M.A.R.C., I noticed that I was alternating my feet. It seems like for as long as I can remember, I have only been able to climb up or down the stairs by only leading with my right foot per step then lifting my left foot to the same step, etc. It’s probably been 15 years. This “new” normal stair climbing is such a pleasant and rewarding surprise. My goal is to discard my walker and use my cane again which both Dr. Antonucci and Dr. Kalambaheti think that my goal will be met!!! 12 years ago, I was using a cane and it will be wonderful to ditch the walker finally.
For a while, I have been complaining to my friends and family of stiff sore neck & right anterior chest to shoulder pain? Well, Dr. Antonucci is so sharp that with my intake exam he picked up right away without me telling him, that I needed a rib adjustment more specifically my right clavicle! He did the adjustment on Monday, and I am pain-free!! I had been abusing Tylenol, as the pain had been so bad that it altered my life. I am no longer taking Tylenol and my liver and kidneys will sure thank me.
If I could turn back time, I really think that the trick would have been to enter the Plasticity Brain Centers EARLY in the disease process. They can do wonders for you and decrease your disability. The problem for me is that they weren’t available back then, but they still have helped me beyond my wildest hopes and dreams.
My program on the M.A.R.C. machine (Multi Axis Rotational Chair) was stepped up to two sets of quadruple backward flips!!! I love this machine. It is my treat! I am passing all of my Stroop tests which show improvement in my frontal lobe (higher thinking and reasoning center). My eyes are seeing correctly now and work together. Oh yes… and my left eye no longer sees a duller color than my right eye! I forgot to tell you about that on Monday. My balance is better and I am thinking clearer and finding my focus to be much, much better. I even have noted much more energy! This program is definitely a win for me!! I would even go to the extent to say that this program is a God-send and my wish is for you all to take advantage of their new technology, skills, medical field expertise that they excel in, and to improve your own quality of life.
Tomorrow is retesting in all therapy stations, diagnostic testing, another thorough physical exam with the renowned Dr. Antonucci. Afterward, my home program will be given and explained to me. The home program is supposed to take about 15 minutes, and I’ll do it about 3 times a day. Thanks for listening.
I completed the program and my balance and stability score while standing on a solid platform at discharge from entry showed improvement by 43.5%!!! Dr. Kalambaheti told me that research shows that a 4% or greater change is significant, but I did 10 times that!!! On a padded cushion platform, I couldn’t stand and balance. I kept falling. Today, on the cushion I was able to! My symptoms and pain went from a score of 86 down to 25 (lower scores are better). That’s a 70% improvement! There is a cognitive connect the dot test that I couldn’t pass even with 3 tries upon entry but I completed it at discharge! The speed in which I process information has improved by almost 10% and even my visual acuity improved by 30%! Dr. Antonucci said that I may need new eyeglasses!
I have been given a home program to do for 15 min, 3 times a day. I can’t tell you how pleased that I am with these results and it will be a pleasure to donate 45 min. of each day to continue all that I have gained in these short 5 days! I do know that if I don’t practice my home exercise then I will not progress as much as possible. In my final treatment session at the end of the day, Dr. K turned up the MARC. I performed 3 sets of quadruple backward flips!! No nausea or vomiting. They say that they have never had a patient that has vomited because they program the chair to do exactly what the brain needs to feel better. The reason that people get sick on rides is that their brain is over-stimulated. So how do they know if you are over-stimulated? The doctors monitor your pulse, oxygen saturation & eye pupillary response time to see if your body has had too much stimulus or not when making a change on any of the machines to keep us all safe and progressing efficiently.
The 3-month post-care program consists of 6 emails and 3 phone calls with the doctors. They encourage us to call them if we have any questions at all and to keep them updated on how we are doing. They support us for our continued success, care about our quality of life and about us.
I would like to thank Dr. Antonucci and Dr. Kalambaheti for all their expertise in this cutting-edge science that they delivered to me. I would also like to recognize Jaime and Holly, and of course Katie for all their time and care. Thank you!