Dec 9 to Dec 30

Hmmmmm…for some reason I’m finding it hard to start writing. I have always been a bit of a procrastinator but it has really shown up recently. I need an organizer like Sensei Linda to give me a kick in the butt. I didn’t keep a log for the last 3 weeks so I’ve been looking at a blank page which could be part of the problem. I had great intentions of sending out Christmas cards and thank you’s to all of the people that have been so kind and helpful over the past year. But you know what happens to good intentions and it was December 23^rd before I got going and by then it was way too late. If this helps a belated Merry Christmas to every one and a Happy New Year, here’s wishing 2013 is a great year for you and yours.

Rehab has been going well. As I have mentioned, Laura my Physio at Parkwood is very creative and figured out that I am a touch competitive. She designed a triathlon for me. The bike is of course on the bike for half an hour. Also, as mentioned when I pedal everything tightens up, I get Laura points if I can relax my neck and think about keeping my arms loose. No matter how hard I think, I can’t relax my trunk.  The run portion of the tri is 10 sit to stands. Each stand must be up tall with bum in, gluts tight, shoulders back head up and chin in. Once up straight, a weight shift for left to right leg lifting my foot to put weight on the other leg. Get Laura points for checking my posture and adjusting accordingly. I can use a performance enhancer, which is a dirty word nowadays but in this case I’m allowed to use a mirror to check my posture with no penalty. The swim portion is lying in bed, and while doing bridging (knees bent, feet flat on the bed, raise butt as high off the bed as possible), move arms in a backstroke motion or out to the side. This is to get the brain to try and differentiate the moving of the arms while the legs are engaged.

I can move my arms quite easily while in a bridge position, but what is very difficult is when lying flat on my back and lifting my left leg off the bed. It tightens up my left arm and hand. I mean so tight you can’t straighten out the arm or open my fingers and the ol’ brain doesn’t get the message to let it relax. Or I just haven’t found the correct route to tell it what to do. The right arm is OK when I lift the right leg. 

I now have a written work out from Laura and the leg workout takes over an hour to do. Jody in OT gave me some homework to do over the holidays since I don’t see her ‘til Jan 12^th. Do sit to partial stands. Sitting on edge of the bed, lean forward with nose over toes to get the butt off the bed then up almost to a stand, hold and sit down slowly. Do sets of 10. I can do them but my back tightens up...go figure. I cheat a bit as I need to pull on a chair to get started…gotta get those quads stronger.

Interesting in the pool on Thursday, I was standing but my left leg seemed to flop around as if it doesn’t have any weight on it. Yonna told me to tighten up the quad and she checked it out. Seems the lower portion of the quad is tight but the upper portion is flaccid. Don’t know what to do to get the upper part working. This explains at least partially why the leg flops.

I’ve been getting in the pool at Parkwood, once a week and in the Tillsonburg pool at least once a week. Getting better at standing in the pool and my left side and left leg seem to be getting stronger. With the assist of the buoyancy in the pool I can now stand on the left leg and lift the right one off the bottom and hold it up. Must really get my balance first and stand very upright on the left leg and consciously think about keeping the muscles tight in my leg but also in my hips and tummy. The brain doesn’t know it should be doing it all automatically. Normally the brain would be turning muscles on and off as needed for balance. Since I don’t seem to have the sensors to turn the muscles on and off, I turn them all on. Therefore, can’t stand long as the muscles tier quickly. Don’t knows if the muscles are weak because they have atrophied or if there isn’t enough nerve impulse getting there to keep them turned on.

Going to miss Yonna and the Tillsonburg pool for a couple of weeks. She is taking her husband Steve to Hawaii for his retirement gift and they won’t be back until Jan 14^th . When they get back, Steve will be coming into the pool with us on Thursday’s. With all the programs Jody and Laura have given me, I should be able to fill my time for a couple of weeks.

The tight back is causing some problems as mentioned many times and I can’t make it relax…hmmm…is more meds the answer? Pedaling the bike, standing, or doing anything with my legs, the ol’ back and trunk tighten up. Well now it’s at the point of interfering with other stuff. For example, I had a couple good bike rides and then just before Christmas on Dec 23^rd I got an intestinal bug and a bout of diarrhea that made me miss the family Christmas Eve get together at my brother-in-laws. For most people, a tummy bug only causes some intestinal 'symptoms' and generally feeling crappy. Spinal cord injured people get all the normal symptoms but also get muscle tone/muscle tightness and mine happens to be in my trunk and I also get  spasms in my arms and legs as well. In fact, they are such a bother, I’m taking extra pain pills to put up with it…hydromorphone and Tylenol together….grrrrr. At the time of writing the intestinal bug is back. I had to get Darcy up at 3:30 to get me in the commode and to the John. Even wore Depends to coffee with the guys this morning (Sunday, Dec. 30) just in case.

Christmas was great with Meghan and Andrew. We had fun opening presents and had a nice turkey dinner at about 3:30 on Christmas day. The gifts arrived on time from Kelly in Australia and I got to talk to her on her Christmas day. The tummy bug left long enough to allow me to enjoy Christmas dinner. Meghan brought Ashlu, a Border Collie who is big but very friendly even to Myah our Shih Tzu, but Myah was very happy to see the Collie leave. 

  

Had a massage on Thursday, Dec 27^th and I usually get into prone and get my back done which feels real good, but got into prone and the lower back went into spasm. Had to get onto my back right away. Even when I sit at the computer now the back is a ‘pain’. Don’t usually complain about the pain but it is interfering with other stuff now. The only thing that seems to relieve it is sitting in bed with the head of the bed up at a 30 degree angle. I also found that if I sleep flat on my back I have big problems in the morning. Most of that is from lying in one position without moving for 10 to 12 hours. 

Just being in bed is getting to be a problem. The PSW’s come in the morning to give me a shower, I can do most of it but need help to get all the parts and drying off. They then get me dressed and they do all of that before I go back into the washroom and shave and brush my teeth. Then it’s breakfast time and medication time…17 freakin’ pills so I need to take them with food. Some workers come a 6:45 which is great some come at 8 or 8:30 which is not so good as I don’t get my meds ‘til around 9:30. It also means that I am in bed for 12 hours which is way too long. We are trying to get it worked out that the PSW’S come in at 7 or earlier, it’s hard to change scheduling once it is in place. There are a couple of reasons why I need the meds early as possible. The anti-spasmodics wear off at night so I need them earlier in the morning to keep the blood levels up, and if no meds ‘til 9:30 that’s only 2.5 hours ‘til lunch time pills. Too short of a gap.

Had some good outings over the past 3 weeks. Went to the Martial Arts Canada Christmas Banquet. It was great seeing all the kids and OMG how the kids have grown. Nice to see them get excited about winning trophies. Then a house party on the weekend and saw a lot of good friends. On the 21^st went to Brantford for the old rugby guys Christmas get together at the Polish Hall. Good to see that gang again doing the ‘I remember when!’. I know my claustrophobia is gone after riding in the Polish Hall elevator. It was just wide enough for the chair and just long enough for the chair and Darcy to stand behind it….made it with no problem, mind you it was only a one floor trip.

I’ve been spending quite a bit of time on the internet looking for a bicycle well actually looking for a trike. I was looking for a trike with 1 wheel in the back and 2 wheels up front that are used for steering. Found a recumbent tadpole tike which has the drive wheel in the back and steers with two handle bars connected to the front wheels. Brake levers and shifters are on each handle bar, right side has the right brake and rear wheel shifter and the left has the left front wheel brake and the front derailleur shifter. There are a couple of issues that need to be looked at. The higher the seat the easier it will be for me to get in and out of. I’ll have to slide in and out from the wheelchair or if I’m walking I may be able to able to get in and out of it easily. Searched many companies and found Terra Trike in Grand Rapids, Michigan has a tadpole trike with the highest seat at 14.5 inches (36.8 cm) from the ground…it’ll take a little work getting down there and more work getting up….hmmmm…now there some incentive to do Jody’s sit to stands. Must set the goal of getting up from a chair that is 14 inches from the floor…yikes. A little quad, opps a lot of quad strengthening is in order. Other considerations were that the brake lever on the right handle bar could run both brakes and also install the front derailleur shifter to the right handle bar. Sent an email to Terra Trikes and it’s all doable. If ya wanna see the bike opps trike it’s at: http://www.terratrike.com/sportster.php  It’s the SL version. They are presently 9 speeds but they will upgrade to a 10 speed and that would be 30 gears. It was a lot of fun researching all the bikes and components and reading reviews on the different bikes. Nothing beats consumer reviews. It appears that the tadpole bikes will keep up with upright bikes. Another change would be to put a 700 cm wheel as the drive wheel on the back which is up from the 400 cm that is standard. This not only provides better gearing but will also raise the seat a little and every silly millimeter helps. I think I’m excited…Can’t ye tell?

The trike provides more goals, 1. As mentioned to get on and off a 14.5”/36.8 cm seat, 2. To get the left arm straight enough to hang onto the left handle bar and 3. Not only to reach the handlebar but to get the left arm and hand to relax enough while pedaling to allow the arm the help steer. I’ll take that for now and work on the hand to shift and work the brakes later.   

How am I Feeling?

Now this is a tough one. I think this back pain is getting me down a bit. I missed my night meds a couple of times and I take the anti-depressant at night. That may account for some weird dreams and thoughts. I start thinking about what is going to happen 10 years down the road. Darcy won’t be able to keep up at her present level and a retirement home certainly is not an alternative…just gets me down a bit thinking about that stuff in the wee hours of the morning. Keep trying to think positive and that I WILL be up and walking in a few months. It just nags on me a bit. Perhaps I need to see the psychiatrist again in the New Year.

Other than the nagging thoughts at night that I may not get much better, I keep doing all the rehab stuff. Just don’t know if I should stop riding the bike until the tummy bug is gone or just put up with the spasms. I need the bike for some cardio fitness and to strengthen the legs….hmmmm…think I’ll keep riding, perhaps at a lower tension.

Belated Merry Christmas and a Happy New Year and thanks for listening…

Nov 26 to Dec 9

Mon Nov 26: PT in the pool at Parkwood. Laura mentioned that I was doing something special on Wednesday but couldn’t remember what it was. We did some stretching and exercises that loosen the trunk and work the arms. The difference between Parkwood Pool and the Tillsonburg pool is about 5 degrees. Does the warm water ever make a difference. It really helps me relax. But I won’t be giving up the Tillsonburg swim as Yonna is helping me a lot.

Laura called as she remembered what we are doing on Wednesday. That was to get up in the platform walker, which is a walker that allows me to put my arm up at about shoulder level as I can’t hang on a normal walker…yet. 

Tues Nov 27: Got Botox in my left arm. Dr. Potter injected in my bicep and my Finger flexors. The idea is that it weakens the flexors enough to allow the extenders to open my fingers. I will know in a week if it is going to work. Dr. Potter explained the he injects a conservative amount the first time to see how my body reacts to it. If it is favorable he may adjust the dose and do other muscles. Seems that Jody had emailed him about doing my finger and Laura had asked about doing my left foot as the calf is always in spasm and pulls my toes down which causes drop foot. I see Dr. Potter in a month to see how the Botox is working. 

I’ve done 352 K on the bike since June. Doing 15 minute sessions with 3 min cool down between sets.  Going to up it to ½ hour and see how that works….gotta catch Byron somehow. Today rode 3x15 minute sets and one 10 minute set = 55 minutes. Longest time on the bike to date.

Wed Nov 28: I got up in the ‘high walker’ and took 3 steps.  Well not the greatest 3 steps and perhaps the last two weren’t even real steps. I try to bend forward to make my legs move instead of moving my hip through first and following with my leg…gotta lot of work to do. Joining a gym is a must to strengthen the leg. A little disappointed but now I have something to work on. But I do think the high walker has possibilities. The left side is just not able to hold my body weight, even with 4 physios, one in front, one on each side and one behind, I couldn’t take a step with the left leg. I can stand on the right leg and take a step with the left. The problem starts when I try to put weight on my left, my left hip slides out and I can’t stand tall on the leg. Very frustrating….grrr! 

Thurs Nov 29: In the pool with Yonna. Did some of the exercises I did with Laura on Monday. Put my feet on Yonna’s shoulders and do leg presses. She’d hold one leg while I’m floating on my back and I move the other leg out and bring it back in quickly which gives resistance and strengthens the hip abductors or is it adductors…one of them anyway. 

After the pool got home and Darcy had taken the Bug…VW bug…to get the lights fix. She drove it to Brantford with no brake lights. She put on the hazards when anyone was behind her. Thought it was going to cost a fortune as there were some lights flashing on the dash for electronic stuff however, it needed a couple of switches and new tail-light bulbs. It’s all working and for 120 bucks, not bad considering it was the dealership.

Fri Nov 30: PT and OT. In PT Emily stretched my hamstrings and quads and got me in prone and did ‘mobs’ on my back…they feel very good. No time to get into the standing table.

Off to OT for 11 o’clock. Jody worked on the left arm and mentioned that the Botox had loosened up the bicep but could not see any difference in the fingers…yet. I should start seeing differences in the fingers by next Tuesday if it is going to work.  We also did some stretching on my back. As mentioned, my back is in tension all the time. Jody had me sitting on the edge of the table and put my forearms on my knees which really stretched my lower back out. With all the stretching it loosened up about 6 inches of my lower back above the tailbone….it felt very good. This is now a stretch that will be incorporated into my workout sessions…like after the bike rides…just hope it loosens up the rest of my back. Once I bend over Darcy will be able to run the vibrator up and down…opps that sounds too kinky, that should be the electric massager not vibrator.

Had a visit from an old rugby buddy, Ed  and his wife Sue. Told us about their trip to Istanbul and there upcoming 6 week trip to New Zealand.

Karen picked up the meds in Delhi, and dropped them off. Friday night just happens  to be veggie pizza night and Karen is a veggie so it worked out great and then she cleaned up the kitchen for Darcy. 

Sat Dec 1: A day off. Didn’t sleep very well as there is trouble with the CPAP. When my nose plugs up I can’t use the nose faceplate and the full faceplate doesn’t work. I slept 2 nights without it and I don’t sleep well without it as I keep waking up. Today I kept falling asleep while I was reading. In fact I was tired when I got up and missed Karate as well.

Sun Dec 2: Since Saturday was such a bust it was time to get the butt in gear. To start, went out to the Mall and had coffee with Grandpa, The Sarge and Uncle Vern. We solved several of the world’s problems but it is the same as solving them over glass of wine but not as much fun. Then home for lunch, an hour reading then 10 sit to stands at the side of the bed. Got into bed for 45 minutes to do some bridging, leg lifts, bicycling and some trunk stretches. Got on the bike for an hour and did 19.2 K. Did another 10 sit to stands with the PSW. Legs were a little pooped when I got into bed.

Back on the nostril CPAP breather but had trouble keeping my mouth shut. Having some strange dreams about fighting through the house doing MMA stuff but always end up pinned and I can’t move…go figure! The CPAP may have something to do with it as it makes a loud hissing sound when I open my mouth as the air blows out of my mouth. Is there an oneirologist out there to interpret my dreams? Yes I looked up oneirologist in Wikipedia.

Mon Dec 3: PT at 11 and was in the pool for an hour and did lots of work loosening up my trunk. The back stretches are helping, I think. Got home at about 1:30 and had lunch…then the Sunday workout kicked in and I had a nap from 3 to 5. Thought it might mess up me up at bedtime but went right to sleep at 11 o’clock. 

Oh yes I am off the sleeping pills and had been cutting then back for a while and was down to 2.5 mg a night so we decided to stop it completely. No withdrawal symptoms to date and I fall asleep relatively quickly. I do 3 sets of exercise before I go to sleep, 10 finger taps with my left hand, 10 shoulder rolls frontwards, 10 shoulder rolls backwards, 10 pelvic tilts, 10 glut flexes holding each for 10 sec, 10 leg flexes tightening up the quads and gluts alternating legs and 10 foot flexes alternating feet. Do it 3 times. Sometimes I fall asleep before it is completed.

Tues Dec 4^th:   To the pool with Yonna. Incorporated more of the exercises we did on Monday in the pool with Laura. Must do longer stands to get some endurance in the legs. Can stand for about 3 minutes need to extend that to 10+ and more. Working on that with the PSW’s at night before bed, try to stand for 3 minutes, the goal is to get to 10.

Biked for 55 minutes, the legs just didn’t get going. Couldn’t get the cadence up and the legs and body became very tight.

Laura, my physio at Parkwood asked if I’d be interested in writing an autoethnography which is according to Wikipedia “a self-reflection exploring personal experience connecting the story to wider cultural, political and social meanings/understandings.” Checked on the internet for examples and how to write one. It would involve a lot of research and I would like to do it. Not ready to put that much time into it. It would be a qualitative report and I’m of a quantitative guy…numbers are better.

Wed Dec 5^th: OT and PT. Jody did lots of stretching of my arm and loosened up my trunk. Yonna drove me to Parkwood and we were discussing what happens in physio and the how it would appear to an outsider. For example I need to turn on my gluts for standing and walking. To make sure it is on the physio will grab my ass and say, “Make it hard!” while I am lying on my stomach. Now what would that look/sound like if someone just walked into the room.

Did some standing with Laura and got into prone and had a great back mobilization of my vertebrae in my back by a student. He mentioned I had about the tightest back he’d ever worked on.

Got another great massage from Jeanie. The face cradle that we use doesn’t really fit me all that well. The hole that my face goes into opens up and my head slides through the hole and my throat rests on the edge. Think we need to put a pillow under my chest to get my throat off the base. We’ll try that next week.

Darcy was having a nap and I woke her up for a pee. She went into the washroom and brought out the drinking mug…we had a good laugh. Perhaps I should start doing it myself which would be less work for Darcy.

Yonna had parked facing the wrong way in front of the house. I mentioned on the way out that it was a parking offense to park that way. Yonna wanted to know if she should go back and change it. I said, "the cops rarely come around here." On the way back, when we turned the corner onto my street, there was a yellow ticket on her windshield. She was quite upset that she got a ticket. When we got in I asked Darcy if she had seen the police, "Only when they drove away" she replied. She asked Yonna to get the ticket. The Sarge and Grandpa had been helping Darcy get the VW in the garage and the Sarge wrote a ticket on yellow paper, "Offence, parking the wrong way, Fine $50, Send money to George and Bob."

Thurs Dec 6^th: In the pool with Yonna and worked on more exercises from Parkwood. Did some stands and weight shifting. I can stand on the right leg and lift the left knee up in the pool but I can’t do it on dry land. It seems that the knee is too stiff on dry land but in the pool the buoyancy helps lift the leg.

Did some biking, as Byron is off there is a little less pressure. Byron is having surgery tomorrow and hasn’t ridden this week so there will be no swelling in his ankle when they take the pins out tomorrow.

Fri Dec 7^th: Off to Parkwood with the Sarge for PT and OT. PT with Emily and did some hamstring and quad stretches and then at the standing table for 20 minutes. It was a good stand as I stayed relatively straight without leaning on the supports or on my arms. Got a good calf stretch while standing on an incline board.

In OT had a good discussion with Jody. Most of my damage is at C5 andC6 with some at C7. The problem is not that there is no nerve impulse it is the brain is confused and sends signals to all the body parts and doesn’t differentiate between parts. The physios and Occupational therapist are trying to make my brain selective in turning on different parts. But when I stand my entire body becomes tense. A drill I am doing is when I am in prone they have me in superman position that is push with my legs to turn them on,  pull my shoulders back and down, then lift my arms and then my head. Once up I turn them off one at a time. Let head down arms down, shoulders down, relax legs and then repeat. Trying to get my brain to turn on separate body parts by themselves.  

At home did some biking and did 1 hour with tension of 20 minutes at 5 to 7, 20 minutes at 3 to 5 and 20 minutes at 5 to 7 and did 20.7 K, most mileage yet.

Sat Dec 8^th: Really feeling the effects of my bike ride. I’m tight all over and had several spasms today. My lower back does loosen up when I sit and bend forward in the chair. Darcy ran the massager up and down my back and that seemed to help. 

Was getting ready to go to Karate but had some diarrhea…grrrr. The better part of valor was to stay home. I put on depends but didn’t need them. I have a dinner to go to tonight and hopefully it doesn’t act up there…I’ll keep the depends on just in case. The dinner worked out very well and I even had some wine and Scotch. Got home at about 1 o’clock and then an hour to get ready for bed so we didn’t get there til 2 o’clock.

Sun Dec 9^th: Got up at 8:30 and went for a two hour coffee break with the guys. A little tired and had a nap in the afternoon. Since there was no bike competition, didn’t need to go on the bike…good thing.

How do I Feel?

The tight body after riding for an hour is something I am going to have to reconsider. Now here’s the catch 22, riding makes my legs stronger and gets the heart rate up which I really need the catch is it tightens up my body for a couple of days after and it may interfere with my therapy. Seems the more tension I put on the tighter I get. Perhaps limiting the ride to 30 minutes with a lower tension may help. Disappointing as I may have to give up the races with Byron. OR perhaps taking some pain meds will help? I’ll just have figure out what will work. In discussion with Jody, she mentioned that when I plateau or stop progressing I will stop therapy but will begin again when I need it and it could go on for years.

I must admit I have been down a bit because of the slow progress but it seems that’s the way it is. Just keep working at it. I have a very enthusiastic physio and she keeps me going and doing new things.

Thanks for listening...