The D-Man is taking over the Blog...

Hola Amigos,

Well, it has been some time since the blog was updated. As of today (2/22/12), I am jogging four minutes on the treadmill at a 3.8 speed. I am gaining more balance and agility everyday. I have great days, good days and not-so-good days. The great and good outweigh the bad, by a landslide. Without getting too extremely descriptive with everyone, I would like to say that my bladder function is slowly gaining momentum. This was a very difficult thing to deal with, as with spinal cord injuries, bladder/bowel functions are the last thing you regain. Thanksgiving weekend, thing started to work again, and have continued to improve. So, a quick timeline: in September, I abandoned the wheelchair and began to utilize the walker. After a couple of weeks on the walker, I began to use a cane. I started back to work on 10/31/11, and had been using a cane at that point for a couple weeks. A little after Thanksgiving, I no longer needed the cane. The week after Christmas, I started to do light jogging. I began shooting baskets around the same time (an amazing feeling). Today, I jogged the four minutes at 3.8 on the treadmill. And tomorrow? We'll see...

I am truly blessed, and lucky. Some people aren't as fortunate as I...so everyday I try to count my lucky stars. Depression, is very prevalent in transvere myelitis cases...and I am currently experiencing it...BAD. Wondering why this happened and what my life will be like in the months and years to come is causing me anxiety. My neurologist also advised me that I may be suffering from post-traumatic stress. Joy.
However, I feel that I will overcome the crippling disease that is depression. It's tough...but I just have to believe. Just as I believed I would walk again. The mind...what a powerful tool. One love, y'all.
Bubber

Update on Dennis 8/25/2011

Last week we were finally discharged from the hospital and with that came the anxiety of leaving our hospital bubble.   We were discharged on August 18^th and spent the rest of the day running to every CVS and Walgreens in a 10 mile radius of our home.  We spent the next three days getting settled in at our friends’ home (Thank you Brandon, Kara and baby Marianna).  On Monday, Dennis started his outpatient therapy.  His inpatient physical therapist recommended that Dennis continue his recovery at the Brooks Rehabilitation Neuro Recovery Center (NRC).  We feel very comfortable at Brooks because they are very focused on the latest innovation in neuro-recovery.  While Dennis was staying at the Brooks Rehabilitation Hospital his rehabilitation was focused on compensatory skills to make him safe and functional in a home environment, without much emphasis on improving the body’s ability to move.   Brooks NRC focuses on neuroplasticity (the brain and spinal cord’s ability to change, adapt, and learn) which requires intense, task specific, repetitive activities to maximize movement and thinking skills. The highest potential for recovery is during the first 1-2 years after a spinal injury; however, most patients usually receive only 5-6 months of recovery activities due to insurance limitations.  Brooks has customized a program for Dennis to his specific needs.  Every Monday, Dennis will use the FES Bike.  Functional Electrical Stimulation (FES) applies small electrical pulses to paralyzed muscles to restore or improve their function and allows the muscles to work even if the patient has limited or no muscle control.  Every Wednesday, Dennis will use the Body Weight Supported Treadmill.  The treadmill partially unweights the body to improve the ability to ambulate.  The treadmill will help the spinal cord neurons which have a capacity for learning or "memory" that is independent from the brain and can be used to improve walking ability in people with paralysis.  Every Friday, Dennis will do aquatic therapy.  This will help Dennis until he can tolerate land-based exercises.  The warmth of the water helps relax muscles and improve circulation, and the buoyancy eliminates stress on the body. This will help Dennis work on increasing muscle strength, flexibility and range of motion.  For the rest of the time, Brooks NRC will charge us a monthly fee that will allow us to continue Dennis’s recovery between and after traditional therapy.  Dennis will be able to do circuit training exercises which are a combination of strength and balance exercises that lay the foundation for motor recovery.

Update on Dennis 8/10/2011

Dennis spent this past weekend walking on the parallel bars to get his body use to walking again, but on Monday Dennis’s physical therapist had him walking on a walker with minimum assistance.  He no longer has to use a leg brace or the sliding brace for the bottom of his foot.  He still needs to work on his hip placement and the hip flexor muscle needs more strength, but today he walked 30 feet twice on his walker with no assistance.  The doctors at Brook’s met today on Dennis’s progress and they are very impressed with his improvement since the plasma exchange therapy.  They set an estimated release date for Thursday, August 18^th.  Dennis and I are thrilled.  We are ready to be out of the hospital environment and ready to get back to a little bit of normalcy.  

We also went back to Mayo today for a follow up appointment.  The appointment went really well and Dr. Shuster said that there was no enhancement with the lesion on his spine.  We also learn that there are multiple lesions, but there is only one that has been causing Dennis’s nerve damage.  The size of Dennis’ spinal cord is good and there was no shrinkage.  He will go back next month for a spinal tap and some blood work.  They are looking to see if there are any inflammatory cells and bad antibodies growing in his blood and spinal fluid.  Good antibodies are proteins made by the body as a response to injury or an invader, such as a virus. They protect us by clearing the virus from body.  If the NMO test comes back negative that is good news and only a 20% chance of reoccurrence.  The doctor said in neurologist language a 20% chance is slim to none.  But if the test comes back positive then there is a bigger chance Dennis could get TM again.  In order to reduce the chances of getting TM again, Dennis will have to be on medicine long-term.  The long term effects of having the bad antibodies in his blood is that there could be damage done to obviously the spine, eyes and sometimes the brain.  

The doctor did talk to us about some really cool studies that a doctor by the name of Moses Rodriquez is working on at the Mayo clinic in Rochester, MN.  He recently discovered a special antibody, rHIgM22 that is a naturally-occurring antibody in mice, which help repair myelin.  When this antibody attaches to a oligodentrocyte, a cell that is responsible for producing myelin, it signals the cell and tells it to remyelinate.  When mice were given one single dose of IgM22, 70 percent of their lesions were completely repaired and yes humans have the antibody too.  Since, the doctor has been able to isolate this antibody, the antibody 22 is moving forward with more clinical trials, but has not been approved to be tested on humans.  It has been successful in mice and baboons.  Even though this may not help Dennis now it could help if his NMO test comes back positive.  I also wanted to mention another study about electronic stimulation used in paralyzed individuals.  Electronic stimulation has been powerful in Dennis’s recovery, however, this study is used for individuals who are completely paralyzed, but thought it was really cool to share.  Check out this site when you have a chance, Dr. Shuster showed us this video today during Dennis’s follow up appointment (http://www.youtube.com/watch?v=q0VJkVx92nU).   

Thank you again for all your prayers!

Update on Dennis 8/7/2011

We are now back at Brooks Rehabilitation in room #4318.  On Thursday, Dennis was evaluated by his physical therapist and he also confirmed that Dennis is stronger after the plasma exchange therapy.  His daily therapy now consists of walking with assistance on the parallel bars.  He normally takes four trips down the parallel bars and practices sitting and standing from his wheelchair without the help of his arms.  He is still having trouble with his left hip flexor, the muscle that pulls the knee upward.  For now Dennis’s quads are doing all the work and once we get the hip flexor working properly his steps will look less like Frankenstein.   Dennis is working hard and putting in extra hours after his therapy to concentrate on the hip flexor muscle.  I’ve wondered since Dennis’s prognosis how you learn to walk again, and this weekend I learned there are so many movements we do without even thinking about them.  Before Dennis takes each step he must make sure to 1) keep your upper body straight, 2) shift your weight to the opposite leg, 3)  don’t hyper-extend your knee, 4) keep your hips forward, 5) kick your leg outward.  His right leg takes decent steps and we have seen some improvements with the steps on his left leg from Friday to Saturday so I am certain by the end of this week he will be able to take normal size steps with his left leg and start concentrating on walking with minimum assistance.

Tuesday we go back to Mayo for another four to five hour MRI at 5:15pm.  Wednesday we follow up with the neurologist at 1:30pm to see if the lesion has gotten smaller and if there is any more inflammation on his spinal cord.  Dennis was scheduled for another spinal tap, but he got lucky and the neurologist wants to see the MRI first.  Wednesday afternoon Dennis’s doctors at Brooks are meeting to set another estimated discharge date.  Dennis and I are very anxious to see if the date will be moved up with the strength gain or pushed back since we spent six days at Mayo.  We are on our way to the next phase of recovery and we keep being reminded that "Life is about how you respond to not only the challenges you're dealt but the challenges you seek...If you have no goals, no mountains to climb, your soul dies".  ~Liz Fordred

Upate on Dennis 8/2/2011

Dennis finished his fifth plasma exchange treatment today and will be transferred back to Brooks Rehabilitation to finish up his physical therapy.  The Mayo Clinic has been wonderful and we are sad to leave.  The nurses and patient care techs have been fantastic and the doctors amazing as well.  The care we have received here has restored my faith in the healthcare field and it is sad that all hospitals do not give this level of care to all of its patients.  

This is the first time since Dennis was admitted to the hospital that we have had the same doctor evaluate him to see if he has made any improvements.  The doctor on a scale of one to five gives Dennis’s right leg a 5+ and says it is at maximum strength and his left leg is at 3+.  The doctor also said that we could see results up to 10 days after his last plasma exchange therapy.  We didn’t get any exact answers, but we knew we wouldn’t since spinal cord injuries cannot be predicted. The doctor did confirm today that the plasma exchange therapy did work.  He stressed that this isn’t all about the procedure, but about the procedure helping Dennis get to the next step in his recovery.  The doctors are starting Dennis on another low dose of steroids.  The steroids are used to reduce the activity of the immune system to prevent the immune system from attacking the myelin of the spinal cord. Next week Dennis will go back to Mayo for another MRI and spinal tap (Dennis is SUPER excited).   The doctor wants to see if the inflammation and lesion have diminished.  

The therapists at Mayo have gotten him on a walker the past two days and he was able to take 10 steps with assistance.  Dennis says he feels stronger after the plasma exchange therapy and that the steps with his right leg are back to normal.  The left leg is still more like a shuffle.  His legs, knees, and ankles are sore from standing and taking steps which means his legs are getting use to standing and stepping. 

 I feel certain he will be on a walker with no assistance by the time we leave Brooks which we are fairly certain will still be August 16^th.  Keep praying and we love you all!!!!!!

One more thing!

Dennis is in room #526 and you can call him at 904-956-0526.  The plasma exchange therapy only last about an hour so he will have lots of idle time.
The Mayo Clinic
c/o Dennis Frasier Room #526
4500 San Pablo Road
Jacksonville, FL 32224

Update on Dennis 7/29/2011!

This week Dennis’s therapist have been concentrating on strength training.  He is working on strengthening his core and his quads, but still having problems with his blood pressure dropping when he is standing for long periods of time.  His BP before standing is 121/59 and his BP five minutes in standing frame is 88/60 and his BP seated for five minutes is 101/62.  

On Thursday, Dennis was fitted for his wheelchair.  The process was very overwhelming.   There are several options for the different bells and whistles that a wheelchair offers.  Dennis chose a bright red wheelchair (IU colors) and thankfully one that I can easily put in the back of the car.  We should have approval in 45 days and will get the wheelchair in three months.  Yes, I wrote that correctly.  Three months!  All I have to say is insurance companies.  Dennis also went on his first outing outside the hospital grounds.  The poor guy has been in the hospital for 46 days.  Brooks took a group of four people from different floors to Panera to ease the anxiety of going out in public once discharged from rehabilitation.  Dennis set a few goals on the way to the restaurant 1)navigate the ramp, 2) steer & navigate through the door with his wheelchair, 3) navigate the bathroom, and 4) order, get his drink, and navigate through the tables which he did successfully the first time.  I was leery about the door, but Dennis just breezed right up to the door, opened it, and steered his wheelchair right through the door.  I don’t think there is anything he can’t do on his first try.  ;-)

Today was the Mayo appointment and it was very informative.  The neurologist was very impressed with Dennis’s mobility and strength in his legs.  He still needs to work on trunk control and obviously strength in his left leg.  We looked at the MRI’s that were done at St. Luke's Hospital and I was under the impression that Dennis’s lesion on his spine was horizontally across the spinal cord in the middle of his back.  It actually is vertical and spans from the middle of his back all the way up to the base of his neck.  The neurologist was very intrigued that Dennis’s was not paralyzed in his chest region due to the length of the lesion and how inflamed his spinal cord was.  We were shocked when the neurologist was pointing out the difference in the lower and upper spinal cord.  His upper spinal cord was triple the size of the lower spinal cord due to the inflammation caused by the transverse myelitis.  The neurologist did suggest we go ahead with the plasma exchange and we were admitted to the Mayo hospital at 12:30pm today.  The neurologist said that there is a 40% chance that the plasma exchange will work, and that we should see improvements in three days if the therapy was going to work.  Dennis is scheduled for five treatments done once a day.  He has already had his first session of the plasma exchange therapy around 4:00pm and has been really tired since.

A lot of people have been asking me exactly what plasma exchange is.  It is a procedure that separates and removes plasma from the blood in order to remove a disease substance circulating in the plasma.  The red blood cells, white blood cells and platelets are returned to the patient, along with a prescribed replacement fluid.  The plasma exchange is necessary because some diseases create substances which circulate throughout the body in the plasma portion of the blood.  In certain diseases these substances are called “autoantibodies,” which attack healthy cells or tissue.  These autoantibodies are created by a mix-up in the body’s immune system.  Other diseases cause an overproduction of protein which results in slowing down the blood flow (in the same way that thick liquids move more slowly than thin ones).    Only in a few diseases is it possible to remove the specific substance causing the disease.  However, it is possible to remove the plasma which contains the substance.  The plasma is replaced with donated fresh frozen plasma.  

Plasma exchange is accomplished with a medical device called a blood cell separator (looks a lot like a dialysis machine).  It uses a centrifuge to separate plasma from cellular blood components.  Blood is drawn from the patient through a catheter in the neck.  Some issues which may arise is sleepiness, dizziness, sour taste in the mouth, tingling around the lips, or sharp pains, like pins being stuck in the fingers or toes.

Only 300,000 plasma exchange procedures are performed worldwide each year.  Another one million procedures, which are similar to plasma exchange, are performed each year on volunteer donors to collect plasma and platelets.  There are approximately 6.9 billion people living on earth so these facts kind of put things in perspective on how rare this procedure is.

Yes, I already feel the jokes coming on.  No, I am not going back to school to be a nurse.  My knees buckled today while watching Dennis get this procedure and I had to go sit down.  The catheter in his neck is making my queasy so I have to sit on the opposite side of the bed.  Nursing school is definitely out of the question for me.