Hi Everyone,

Cola died this morning at 4:30a. I really don’t know what happened.

2 nights ago he jumped off the bed and seemed to have pulled a muscle.  He would cry when he moved around but seemed to be better yesterday during the day. He didn’t get up much, but would get up and walk to go outside or to get food. I left him downstairs at 11p to go to bed last night and woke up at 1a when I heard him scratching.

I made it downstairs to find him lying down panting, unable to get up. My firend Lance came over & we got him to the emergency room at 2a, where he got this totally strange, ironic, diagnoses of brain tumor, neurological disease or seizure. We left him to run overnight tests.

The phone call came at 4:30a, Cola had gone into cardiac arrest, and did I want her to keep tyring…  He didn’t make it though… I am in total shock today.

He was a beautiful creature who kept me company and got me through the hard part of being paralyzed — the lonliness part. He was always here at home to watch movies with, eat dinner, etc, and he was incredibly sensitive and attuned to my needs. I will miss him dearly…. and words just cannot express what a wonderful animal he was.

Hi Guys -

For anyone that wants to know more about the biofeedback treatment, I thought I’d share the evalution/results doc I got today. It’s long winded, but it’s interesting that I went from single digit connections on both sides even, to double digit connections.  Below you’ll find all the excruciating detail:

The treatment plan in the upper extremities for this series of EMG Biofeedback treatments was to apply the EMG Biofeedback procedures to the finger extensors bilaterally for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to gain greater strength and function for finger extension.  In addition, the treatment plan included applying the EMG Biofeedback procedures to the finger flexors for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to gain greater strength and function for finger flexion. Further, the treatment plan included applying the EMG Biofeedback procedures to the thumb extensors and thenar for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have greater strength and function for thumb extension and thumb opposition on the right side, and to establish some thumb extension and thumb opposition on the left side. 

 

As far as the lower extremities are concerned, the treatment plan included applying the EMG Biofeedback procedures to the quadriceps bilaterally for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have better weight bearing on the legs. Further, the treatment plan included applying the EMG Biofeedback procedures to the quadriceps and hamstrings bilaterally for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have better functional weight bearing on both legs without hyperextension of the knees. In addition, the treatment plan included applying the EMG Biofeedback procedures to the hip abductors bilaterally for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have better functional weight shift and balance during ambulation. Further, the treatment plan included applying the EMG Biofeedback procedures to the left hip flexor for the purpose of gaining voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to develop more voluntary control over hip flexor pattern step.  In addition, the treatment plan included applying the EMG Biofeedback procedures to the hip abductors with the opposite hip flexors for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have better weight shift balance while taking a flexor pattern step with the opposite leg. Further, the treatment plan included applying the EMG Biofeedback procedures to the left anterior tibialis, peroneal, and gastronomies muscles for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have better dorsiflexion eversion during ambulation. In addition, the treatment plan included applying the EMG Biofeedback procedures to the left hamstrings for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have better functional knee flexion. Finally, the treatment plan included applying the EMG Biofeedback procedures to the upper and lower abdominals for the purpose of gaining greater voluntary motor neuron recruitment to these muscle groups which is medically necessary in order to have better functional trunk control. 

 

Overall, response to treatment was quite good; the finger extensors working with agonist and antagonist muscles initially measured 6 percent of normal on the right side and 7 percent of normal on the left side and were able to be increased to 9 percent of normal on the right side and 13 percent of normal on the left side; these gains resulted in a better functional finger extension.  Finger flexors working with agonist and antagonist muscles initially measured 4 percent of normal on the right side and 5 percent of normal on the left side and were able to be increased to 11 percent of normal on the right side and to 8 percent of normal on the left side; these gains resulted in a better functional finger flexion.  Thumb extensors working agonist and antagonist muscles on the right side and only working agonist muscle on the left side initially measured 9 percent of normal on the right side and 8 percent of normal on the left side and were able to be increased to 47 percent of normal on the right side and to 25 percent of normal on the left side; these gains resulted in a better functional thumb extension. The thenar working with agonist and antagonist muscles on the right side and only with agonist muscle on the left initially measured 8 percent on the right and 1 percent of normal on the left and were able to be increased to 10 percent of normal on the right side and to 2 percent of normal on the left side; these small gains will help to establish some thumb opposition function. 

 

As far as the lower extremities are concerned, the quadriceps initially measured 5 percent of normal bilaterally and were able to be increased to 23 percent of normal on the right side and 16 percent of normal on the left side; these gains resulted in a better stability and weight bearing on both legs. The work on the quadriceps and hamstrings initially measured 7 percent of normal bilaterally and were able to be increased to 20 percent of normal on the right side and to 16 percent of normal on the left side; this resulted in a better ability to stand and ambulate without hyperextension of the knees. The work on the hip abductors initially measured 4 percent of normal on the right side and 3 percent of normal on the left side and were able to be increased to 47 percent of normal on the right side and to 10 percent of normal on the left side; these gains resulted in a better functional weight shift and balance during ambulation. The work on the left hip flexor which initially measured 8 percent of normal was able to be increased to 17 percent of normal; these gains resulted in a better functional hip flexor pattern step during the gait.

The work on the hip abductors with the opposite hip flexors initially measured 17 percent of normal on the right side and 7 percent of normal on the left side and were able to be increased to 22 percent of normal on the right side and to 13 percent of normal on the left side. This resulted in a better weight shift and balance on one leg with an opposite hip flexion pattern step while maintaining balance for safer ambulation. The work on the left anterior tibialis and peroneal muscles which initially measured 6 percent of voluntary motor neuron recruitment was able to be increased to 16 percent of normal; these gains resulted in a better functional dorsiflexion of the foot. The left hamstrings which initially measured 5 percent of normal were able to be increased to 7 percent of normal; this gain small resulted in establishing some knee flexion function. Finally, the work on the upper and lower abdominal initially measured 19 percent of normal on the right side and 11 percent of normal on the left side and were able to be increased to 22 percent of normal on the right side and 14 percent of normal on the left side; these gains resulted in better trunk control and balance.

 

In summary, it is apparent that Ms. DeG has an incomplete spinal cord injury at C4-C7 and has experienced some long term motor neuron recovery.  She has responded extremely well to this series of EMG Biofeedback treatments gaining substantial increases in voluntary motor neuron recruitment to muscles below the level of her spinal cord injury.  At this time an aggressive exercise and therapy program to strengthen the muscles groups that now have greater voluntary motor neuron control should result in greater strength and function.

After returning from biofeedback land I’ve been in search of new tools to assist in speeding my recovery. After identifying the FES cycle on the Christopher Reeve website as a potential aid in imrpoving the condition of my muscles, turns out there is a non profit gym in redondo beach that has it!!

The story is really kinda sad actually. 3 yrs ago, This former college football player was a fixture on the redondo beach volley ball scene was playing a game. He dove into the water for a quick cooldown after a match and dove head 1st into a sand bar breaking his neck at C5-6.  He was taken to the hospital. He & his new wife investigated their options and went to a spinal cord rehab facility on the east coast where he did locomotor training for 6 mos. Locomotor is a system in which you are put into a harness to retrain your legs to walk since they are too weak to bear your body weight.  He came back to LA & couldn’t find a place to continue his training so he opened this gym w/the help of the Crhistopher Reeve foundation.

I went there to check it out on Thursday. Small, but TONS of people there! (well, like 10 people in the middle of the week – seemed like a lot). I think the thing that made the biggest impression on me – in addition to the super helpful and enthusiastic staff who were all about getting me in and showing me around – was the skate rat guy on the FES bike. He had pulled up his wheelchair to the bike and he had the electrodes everywhere to stim his muscles. He was super skinny — all bones, and his catheter bag was off to the side. His tattooed, rastafarian friend was taking care of him. He had a shaved head and a scar like mine but his scar went all the way up his head. It wasn’t that red anymore either. And, it just made me wonder – is he a guy that was up on those huge crazy skateboard jumps and just came down wrong? Or is his story an even worse version of mine where some overconfident surgeon just thought he could do anything and it would be okay? Doesn’t really matter 0f course, as neither scenario gets him outta that chair unfortunately, but it just made me wonder about all the athletes who didn’t make it back — no one ever hears about those guys because everyone wants the movie ending. especially here in LA.

Oh, the good news on the football player is that he is getting into a walker now (3 yrs for him!). Apparantly he’s at the gym 4 days/wk. I’m sure I’ll meet him soon and get the full breakdown.

It also inspired me to call the spinal cord institue at johns hopkins, where Reeve’s rehab doctor heads up the program. I’m talking to them about going in for treatment – the have a 4 hr/day program. Wish I would’ve found it before! I mean really, why anyone would send me home from the hospital 6 weeks in from a spinal cord injury and unable to function on my own is unbeleivable! Anyway, they were sooooo informative. Turns out there is no set rate of return for spinal cord injuries at all and they have people who’ve been coming for 30 yrs! Not that I want to be that guy =), but still, its nice to know after my OT broke up with me (and sent me a disheartening letter!), it was really due to her own shortcomings as opposed to my ability to heal.

I start at the gym next week. I hope there are some other girls there! It was nothing but guys when I went in. So excited about that bike — my FES ankle thing is fantastic!! So, looking forward to some faster results.

Oh, I also met with a green foods expert/ cancer healer last week, but I’ll save that one for another post.

Onwards, upwards

-T.

So, good news all around. Comments from the PT – he thought I looked stronger, and pilates instructor thought I looked more fluid. I’m walking arond the house confidently w/o the cane, and slowly practicing around the block w/o it as well. Additionally, I’ve beefed up my home routine so that I’m not sitting for long periods and intermittenly doing strengthening exercises as well.

I’ve also been looking for new people to up-level my treatment, in search of a gait training expert and a neurological hand expert (OT). So I’m in ’search process’ as I do that and talking to different folks to figure out who is best. Scary that I’m now practically an expert!

I spent a bunch of time recently on Cristopher Reeve’s website, with the most interesting factoid as follows: Reeve got a sginificant % of his recovery 5 years AFTER the accident. He worked with a rehab dr who emphasied functional electrical stimulation (FES) and hooked him up to a bike to retrain Reeve’s brain. Reeve was a fully paralyzed individual on a ventilator who 5 years later gained 20% of his motor abilities back through active rehab including aquatherapy and FES. I’m looking for one of those FES bikes in LA now so I can try it out. My ankle stimulator (which I wear every day now), has doubled my ankle strength in 6 weeks. And my ankle was previously the weakest muscle in walking.

The doctor who worked with Reeve is now at a spinal cord rehab institute in DC affliated with johns hopkins so that is my next stone to turn over. I really need some help with my hands — I’ve got the checklist from Brucker Biofeedback on what to do but w/o the feedback part I can’t tell if its working!

Spending all spare time either walking, streching, electrically stimulating muscles or doing exercise dvds. Sleeping 10-12 hrs/day. Fell again last week and really hit my tailbone hard. blech.

xo

T

I got the “official” results from my biofeedback therapists today: they are impressed with my brainpower!

I guess the tumor was so big & gnarly b/c my brain just kept figuring out ways around it, whereas most people would have shown immediate symptoms. It seems to be translating over to my current, impaired state.

The “brainwave” results are as follows:

for my right hip, which i only had a 3% connection, it increased to 47% – i guess that shows how a ‘normal’ connection gets made when a strong connection is already there.  that was the only thing out of whack on the right leg.

on the left leg, i started with about 6% on everything (hip extsors, flexors, quadracepts & ankle dorsiflexion) and doubled or tripled the connection to 12-18% on everything except my hamstring. My hamstring is incredibly weak & does not get used very much, so that went from 5 to 8%.

My hands are the huge success story, apparently. I didnt think so but it turns out that most spinal cord injuries get small increments back at a time, like 1-2%. In almost every measurement I was able to double the brain signal. The exception was my left thumb, but it went from >1% to 2%. The complete lack of muscle there contibuted significantly to the problem. I have not really seen a huge amount of hand improvement on the capabilites side, as I have with walking. However, I did figure out that the stimulation I was doing to my hands burned them out and over fatigued all the muscles to the point they stopped working.

Actually, that is the big lesson here: everyone I’ve been working with is just a plain PT & I need a gait training specialist to work 5 muscles individually, not together (as I did with every single therapist I’ve worked with!!). So all that walking I’ve been doing — not helpful!! Harmful, in fact, to a certain extent.

So, plan is to do the new exercises, build up to another level of strength, and come back. Good thing, as I’m totally exhausted to the point of being 3 yrs old and sleeping 11-12 hrs/day.

xo

T

Well, the good news as of yesterday is that everything, even my poor left thumb, has a signal!

Everyone at the biofeedback center was worried b/c the muscle is soooo atrophied and dangling that it was cut, but there is a signal. I guess the bad news on that is that the signal is only registering around 1%, maybe a little less. I’m so happy that I never went to a lame doctor to test the signal as it would not have registered on standard machines and they would have told me it was dead! I ordered new, small size stim pads today so I can put them directly on the muscle and start building it up. 

On my right thumb the issue is that my stronger muscles have taken over the thumb muscle’s job and now I have to figure out how to un-learn what I learned so that muscle can start to build. Mind game!!

Walking is coming along. I’m still not sure if I can throw away the cane in 2 days, but it feels close. All the muscles are working, but I guess I’ve been so compensating the wrong way that all of them are still really weak. Most imporatntly, my hip flexors are 6% and hip abductors are 10% (ie everything that stabilizes you when you walk needs to be around 30%). They are giving me exercises to take home and during the sessions we work to increase them. So far, I’ve been able to get them up about 10% more but that’s with a very experienced person giving me resistance training.

Overall, I’m impressed with their knowledge as they don’t say stupid crap to me like “we don’t know”  — they actually DO know and have concrete exercises for retraining things to work. On my end and to my credit they are extremely impressed that I have the function I have after what that egotistical surgeon did to me. Apparently most C-level injuries go home disappointed. I’m not going home disappointed but I am in a hurry. I’ve gotten immediate functional results with walking but my hands are going to be a challenge.

They told me that they only allow spinal cord injuries to come back every 8 mos (the longest of all injuries they treat), so I guess my goal is to cut that in half or more.

onwards, upwards

T