Jan 14 to Jan 27

Mon Jan 14^th: Hmmmm…strange how things work. I was feeling a bit crappy and went to physio thinking it was going to be a tough day on the treadmill. I had OT first and Jody loosened me up quite a bit. I mentioned to her that my legs have been burning/tingle feeling and I was concerned about nerve pain. Sometimes I read and think too much. I was worrying that I’d be in pain like my buddies Ray and Jack. Jody explained to me that she has never heard of nerve pain this long after an injury. So why am I so tight with all this muscle tone? I do have a sore back which could explain some of the leg stuff but they say that any little infection will cause muscle tone. I don’t feel like I have a urinary tract infection so I will take a sample to the Doc this week.

I was all bummed out because of how I was feeling and the impending treadmill test. Laura worked on my neck and did some stretches and then it was time to get into the sling that suspends me above the treadmill. It is so tight it gave my back a lot of support. The other thing was the burning legs. I had started wearing compression socks again as my left leg was swelling up. Seems they can cause a burning sensation as well….geez…I gotta stop worrying. Well back to the treadmill. The last time I was on it I couldn’t stand on my left leg and my left hip would collapse. Today I was able to stand on my left leg and keep the hip in. I actually took steps and was actually walking for stints of 2, 2, 3, 4 and 5 minutes. Felt good to walk, not perfect by any means and I only had 50% of my weight on my feet but it was nonetheless walking…yeehaw. This now means I’ll be going into the Locomotor Program in 2 or 3 weeks. I’ll be on the treadmill for an hour, 4 times a week and a half hour of therapy. 

Tues Jan 15^th: Yonna got back on Monday and even after being up for 30 hours for the trip home from Hawaii she called this morning and asked if I wanted to go to the pool. It was good getting back to it. Saw my 88 year old girlfriend Rosa who was as happy and encouraging as usual. Yonna had me standing on my own but I wasn’t near the edge of the pool and felt a little uneasy…Yonna said if I wanted to get there had to walk. Eventually she broke down and helped me walk over. 

Got home from the pool and did 20 minutes on the bike at a constant tension of 3. I am still very tight and uncomfortable although it is a little better. The physios asked if I could get my urine checked for and infection, get neck X-ray to make sure all the hardware is still attached and not causing my neck pain. If I don’t have a UTI they want the Doc to check and see if there is anything else going on. Any infection of any kind or as one physio put it a hang nail can cause tone in a spinal cord injured patient.

Wed Jan 16^th: Tone is easing a bit but it’s still there. My back is sore so I can’t go into prone for my massage. Jeanie worked on my arms and did lymph drainage on my knee to relieve the swelling. 

Since it was a nice sunny day we went for a drive to Port Burwell to see the sub. 

Thurs Jan 17^th: Had my first Thursday PT session. There was some concern if the PSW’s would be here at 7 so I’d be ready at 8:45 to leave. As it turned out one of the PSW’s that comes in every other weekend was able to rearrange her schedule and she come in at 10 to 7:00 and I was ready in plenty of time. In PT Laura wanted me to go into prone lying but I couldn’t stay very long as my neck was hurting. Instead we did some sit to stand. Again when I put weight on the left leg, the hip gives out.

Fri Jan 18^th:  PT at 10 and OT at 11. My trunk is very tight and they are convinced that I am fighting something. I have noticed recently that my sputum has colour to it which indicates that I may have another respiratory tract infection.  I am not coughing but I do have a tickle in my chest. I’ m eating oranges which will ward off any cold. I was exposed to a lady with a bad cough at the hair salon on Tuesday, so the incubation period is about right. 

Sat Jan 19^th: Went to Karate class. I just watched but I think I’m ready to start instructing. Also attended a Black Belt workout that focused on self-defense.

The cold is setting and I’m starting to clog up. The back is very tight and sore.  

Sun Jan 20^th: Did a bike for 30 minutes. The back is quite sore and my neck is in spasm so I ain’t a happy camper. Gotta stop bitchin’ about the pain but it’s nagging and there all the time. Just need to take more pain meds…grrrrr. The only solace is that the pain may be the nerves regenerating and it is just a stage I’m going through…let’s hope so.

Mon Jan 21^st: Off to London for OT and PT. In PT we did some stretching and got me into prone lying.  Got over on my tummy and the back goes into spasm and then the shoulders start. To top it off they put pillows under my shoulders and it blocks the air coming into the face support and it ‘feels’ like I can’t breathe…..and a panic attack starts….immediately I have to turn over…grrrrr. It’s a real bummer as I need to lay prone to stretch my back out. They tried another method of having me lay on a ½ ball which means my face is out and it’s easy to breath. It works but puts a lot of pressure on my George but I was able to stay in that position a little longer. They tried a third method. Laying on my back over a 6 inch bolster or roll. This helped a bit and Laura worked at releasing the muscle knots in my neck. She would find a spot and ask if it was annoying, and it was. She would massage it until it relaxed. She did that for several muscles in the neck and throat. It felt good when it was over.

Now that was the bad stuff. Here’s the good stuff. Remember last Monday when I tried the treadmill…well I will be starting the Locomotor Program next Monday….Yeehaw!!!!!!!!!!! It will be 4 days a week, Monday, Tuesday, Thursday and Friday. An hour on the treadmill and ½ hour of physio after. There is a lot of research that shows the program helps regenerate the neurological pathways from the brain to the legs. They won’t guarantee that I’ll walk at the end but I’ll be a lot closer.

Tues Jan 22^nd: Woke up with a tight trunk and legs. Moving and stretching helps to loosen them up a bit. Yonna called and it was off to the pool. Since it was -11` when we left I did put on a touk and gloves. We spent a lot of time stretching and Yonna work on the legs and back. Then did some standing and walking with Yonna holding my right hand and standing in front of me. It was the best I have ever done…Yonna’s words.  For the first several steps, small as they were I was able to actually stand on my left leg and step with the right. Got a lot of work to do as the left leg got tired and I couldn’t hold the hip in very well and my bum stuck out…so we stopped. Practice makes perfect so be careful what you practice. I get out of the pool on a lift and transfer from the lift chair to the wheelchair. I n the past it was a slid from one to the other. Today I held Yonna’s hands or I should say she held mine, I stood up and shuffled over to the front of the wheelchair and sat down….yeehaw!

Finished off the day with ½ hour on the bike and some reading.

Wed Jan 23^rd: Well I now know what happens if you miss meds. I take baclofen to help control muscle spasms. I forgot to take my nighttime pills. The spasms started at about 3 in the morning. By spasms I mean first the left side contracts with my left leg contracting and bending the knee and the muscles on the left side contract and twist my body to the left and then the left are contracts. Before the left side relaxes the right side starts. The right leg contracts and then the right trunk contacts and since the right side is stronger than the left it twists my body to the right and the right arm also contracts. Then it relaxes. This happens usually only when I am in bed. I do have minor spasms in the pool and at physio depending on what they are doing with my left leg. Today was the worst it has been. The tension eased off a bit once I took my morning baclofen.

Got a good massage from Jeanene and that helped a bit. There is no way I could go into prone. I stayed in bed from about 3 to 5:30 and caught up on a bit of sleep. Having 2 days off in a row is a bummer, and gets a little boring particularly when it is -11 outside, too cold to go anywhere. Darcy and I are now Doc’s as we upped my baclofen by 20 mg/day. Took an extra 10 tonight and an extra 10 in the morning…well see what that does to the ol’ spasms in the morning.

Thurs Jan 24^th: The baclofen did work ‘only one big spasm when I first started moving. Even in the pool with Laura, there were no spasms. Looks like I need baclofen

Sort of a sad day as it was my last session with Laura. She has brought me a long way. Back in May when I first started with Laura, it took 4 people to get me into standing position. Now depending on how high the seat is I can get up by myself. She is a great motivator and very enthusiastic and she has done a lot for me. I think most SCI patients tend to bond with the therapist, hell some of them like Rick Hansen even marry them. I’ll miss her, but after the Locomotor Program I will be going back into PT and I asked her to keep a spot open starting April 15^th.

Oh yes another interesting peeing event. On the way home from Parkwood we stopped at a grocery store in Ingersol to get some bottled water with the sports cap as they are easier for me to use. Darcy went in and left me in the car. I told her to no be too long as ‘I may need to pee!’ Well it happened. I had to pee. There was no urinal available. The only thing handy was the garbage bag hanging from the glove box door. It wasn’t too hard to get off. It was full of Kleenex and other paper products. Just hoping there were no holes in the bottom. As it turned out there were no holes…whew and the Kleenex socked up a lot of the liquid and I was left holding the bag until Darcy got back.

Fri Jan 25^th:  I was all toned up this morning when I got up. It did not let up at all by the time I left for London.  Had PT with Emily and did the usual stretching and 20 minutes in the standing table. Standing in the standing table added more tone to my already toned ribs. In OT, Jody and Erin worked on my arms and hands and did a lot of trunk twisting that loosened up my ribs a little.

Got home and the better part of valor won out and I didn’t ride the bike to see if the tone will ease up a little with no activity.

Sat Jan 26^th: This is the week for the PSW to be here at 7 so there is no time issue to get to Karate class. Class was good, Sensei Linda runs a very organized and energy filled class. Get lots of energy just watching a class. It’s good to feel energized. Had a coffee at Tim’s and Darcy thought it would be good to have some lunch.  Instead of chili, my usual lunch fare, I had a bowl of oatmeal porridge. It was quite good, with fruit but a little too much sugar, which should be easy to fix next time.

Did ½ hour on the bike at low tension of 3 and did not push the cadence to see if that would help the muscle tone…it didn’t.  Muscles in the back tightened up and had to take some pain meds…beginning to think this tone is the way it’s going to be. Jodi mentioned that it may ‘not’ go away. Guess I’ll just need to find a coping mechanism… which won’t be more pain meds.

Sun Jan 27^th: Karate class with the Brown belts at 10 am. Yikes I was late…a big no, no…can’t let that happen again.  Went for a coffee with the gang after and had some lunch. Got home did a Karate assignment, outlining the ‘Qualities of a Black Belt’ and how I’d rank myself, 1 to 5….interesting project. You tend to learn a bit about yourself when you start evaluating yourself…a good process. 

Still tight from the bike ride yesterday…so no bike today. Looking forward to tomorrow when I get evaluated for the Locomotor Program. I'll start the actual program on Tuesday for 44 sessions. There is an evaluation at the end and if they think it will be beneficial, they may offer me 22 more sessions. Remember no guarantee of walking but sure headed in the right direction.

Getting ready to hit the hay and do some exercises before the PSW gets here for bowel care.

Thanks for listening….

 will help to

Dec 31st to Jan 13th

Dec 31 to Jan 13

Mon Dec 31^st: Did 16.1 k on the bike. Was going to cut back but I’ll take pain meds if I need to. That’s what they are there for. Yes the back tightened up and so did the arm.  I really should ride the bike every day as I feel so much better after the ride. With a few tight parts.

Called the service provider today to see if we can get the morning workers in here at 7 am. Darcy explained about being in bed for 12 hours and not getting my meds on time, there answer was that we need to be more flexible…well we won’t. I lie in bed on my back and do not move the entire night. 12 hours is too long to stay in one position.  They had originally said they would be in at 9 on New Years day…. we said no. They called back and now someone is coming in at 7.

Tues Jan 1^st: Slept through New Year’s eve but I’m assuming it was the same as last year, sans Dick Clark. Strange dreams last night. I kept thinking air was coming out of my lungs under pressure and my ribs were collapsing when in reality, I had opened my mouth and the CPAP was short circuiting through my mouth. This happened several times but I didn’t figure it out ‘til morning. 

The PSW was here at 6:45…yeehaw . Went to meet the cycling club for the annual Jan 1^st Frost Bite Ride. Last year I talked to all the guys on Skype. This year I got some of the pre-ride Maple Crown Royal and got to see the riders off. Darcy and I had our usual 25 cent bet. She thought there would be 5 riders, I guessed 8. We were both wrong, there were 13. Even 3 ladies showed up. I have found that if you can keep your hands and toes warm you can ride for quite a while. I used those heater packs that kept the fingers and toes nice and cozy.  I could ride comfortably for about 2 hours at – 10 degrees. This is the end of an era, the Ride has always started at Rocket’s lakefront property in Port Dover for the last 14 years. Rocket and Stephanie are moving to Simcoe in February.  Hmmmm…perhaps I’ll be doing the ride next year.

Wed Jan 2^nd: Back to PT and the ol’ gang is back and ready to go. Did the usual stretching and did some sit to stands. Showed Laura the ‘new bike’ and told her about the 14” seat height. She got a tape and measured the height of the plinth. It was 23 inches, I can get up from there with a little assistance. It was then moved down to 22, and I got up with a little help. 

Did a stand from the plinth and pivoted into the chair. The good thing was that I put weight on my left leg and moved the right foot. Must really think to stand strong on the left before I move the right. I try to go too fast and move my feet before my body is in the right position to move. Another little improvement is that I can now lift my left leg while sitting in a chair which means some muscles are getting stronger in my hip. 

Thurs Jan 3^rd: Did 11.1 k on the bike in 45 minutes. It tightened me up a bit.

Fri Jan 4^th:  No pool as Yonna left for Hawaii. Did 10 k on the bike in 30 minutes. Riding the bike causes tonal overflow. That means the harder I pedal the tighter my trunk gets. Tonal overflow is different for everyone. My friend Etienne who has a spinal cord injury at about the same place in his neck, has tonal overflow to his legs. He also pedals a bike and then it feels like he has tight bands around his legs and he can’t do anything for a couple of days.

In PT, did some stretching and prone lying and then some standing and doing some weight shifting. They get me standing very tall and keep my butt in. It is hard to do a shift with 3 people hanging on but I was able to put some weight on my left leg and lift up my right leg. Both of the physios mentioned that my legs are getting stronger but there is a long way to go. They want to get me back on the treadmill.

Sat Jan 5^th: Finally got to go to Karate class. The PSW comes at 8:30. Darcy got me up at 7:30 for breakfast and the worker gave me a shower and got me dressed. Did 10 sit to stands and putting weight on moving side to side putting weight on each leg. I can feel the left leg getting stronger as I can stand on it and take most of the weight off my right foot.

Got to class just as they were starting it.  Sensei John got me to the front of the class and it was good watching class again from the front.  It sure was energizing watching everyone train and getting a good sweat on. It is inspiring watching Frank, a 78 year old doing the class. He gets a little frustrated because he forgets his kata moves sometimes, but who cares, he’s there doing it. Probably the only 78 year old doing Karate other than in Okinawa…rah Frank.

Did an hour on the bike at tension 3,4 and 5. It felt ok but the last 30 minutes the cadence sure slowed down. Did 10.4 k in the first ½ hour and 9.1 in the second. We’ll see how the tonal overflow is tomorrow.

Sun Jan 6^th: Well it looks like I’ll be putting up with a tight back and ribs today. Perhaps need to keep the biking down to 30 minutes. Did 10 sit to stands with some weight shifts.

Mon Jan 7^th:  Did 10 sit to stands before going to Parkwood. When I get up I stand tall on one leg and lift the heel off the other to put all my weight on one leg. In the past my left hip would give out but it seems to be able to hold my weight now….hmmmm…another new development. Now when I get into bed from my chair, I stand and pivot. The left leg actually holds all my weight when I lift and move my right foot. Soon I want to be able to stand and pivot to get into the car.

Got into the pool Parkwood. After some stretching they got me standing. Walked backwards across the pool and then forward. That is with a physio on either side with my arms around their shoulders. Pleased with the progress in the pool and the sit to stands, must keep reminding myself to stand tall before I move my feet.

It seems I have tonal overload no matter what I do. The trunk was very tight after doing the walking in the pool. I asked Laura if it will ever go away. She said, “it’s up to me to make it stop.” That is one tough mental exercise.

Tues Jan 8^th: Met my buddy from Parkwood at the Mandarin for lunch...ate way too much but we will do it again next month. Got home and rode the bike for an hour. Laura suggested that I ride for 30 minutes but I have turned the tension down and my trunk isn’t any tighter than when I ride for 30 minutes. I will try drinking lots to see if that helps.

Well I ordered the trike…they are out of stock but the order is in.

Rode the bike for an hour…at lower tension. Felt ok, arms tight after the ride.

Wed Jan 9^th: Well that will be the last hour ride for a while. Had a lot of spasms in bed in the morning.  Got to Parkwood and I could hardly move. Jody in OT tried to loosen me up, it worked little. In PT they tried to get me into prone but my back hurt so much I couldn’t stay there. Had massage from Jeanie and I stayed loose for about an hour. Had to take some pain pills. Not only is my back tight but my legs and shoulders as well.

In OT there was a student OT doing her 7 week practicum and wanted to know what muscle tone is. She now knows.

Thurs Jan 10^th: Still a bit tight and the ol’ back is sore but it is getting better. Back on the bike tomorrow for 2x15 with a 3 minute cool down in between and I’ll limit my workout to some standing and the leg workout in bed. 

Had lunch with Etienne who is walking but is a little down. He can’t workout much because his legs tighten up and his back hurts. He was one strong rider before his injury and now he feels that he can’t do anything because he tightens up the next day. I must take that into consideration and do lighter workout so the trunk doesn’t tighten up but at this point in time I will continue to work out… just be a little smarter. 

Just about had a panic attack, it is strange on what sets them off. I was on the computer and had a sweater on, and started sweating and my nose was plugging up and it was about to start…was able to talk myself out of it, but I really wanted to go outside and get some fresh air…but it passed. Perhaps I do need to see the psychiatrist just to make sure the meds are ok.   

Fri Jan 11^th: PT with Emily and then in the standing table for 20 minutes. Stand on an incline board it gives a very good calf stretch. Don’t know if standing tightens up my trunk or not. Not going to do any biking on the weekend as I want to be without trunk tightness for the treadmill on Monday. They told me on Wednesday that I’ll be on the treadmill on Monday at about 2:15. If I can stand on the left and walk properly I may get into the locomotor program.

Did lots of work getting the program ready for Sunday morning Brown Belt workout. Looking forward to teaching again.

Sat Jan 12^th: Yikes my hour ride on Tuesday is still with me. Need to take extra pain meds, something  I haven’t done for a while. Missed class this morning because I was so tight…grrr. Just rested most of the day.

Sun Jan 13^th: Made it to Karate class and worked with the Brown Belts. They seemed to enjoy the workout. Then went for a coffee. I should be drinking decafe as caffeine gets me ‘excited’ and it’s tough sitting in the chair with a caffeine buzz. 

A friend from the rugby club came for a visit today. I was good to see Bob and Marion.

How am I Feeling?

Right now, Sunday evening, quite frankly not that good…the pain is becoming a factor in my back in particular and with my intercostal muscles tightening, it becomes difficult to breath. Don’t know how to describe it. All the muscles are tight and it feels like I can’t move, but I can. Perhaps that explains the dreams I am having where I am tied up or someone is squeezing me very tight and it usually isn’t a pretty girl doing the squeezing. Guess I’ll just get used to it. In some of the research they say that the pain increases as the nerves get reconnected. Hopefully that’s what is happening. A burning sensation started in my legs on Saturday night even though I did very little exercise other than some sit to stands before bed. Woke up at about 3 and had trouble getting back to sleep. Legs, back and neck were burning. Of course now I am starting to worry that I’ll be having nerve pain in my legs and back. Perhaps it’s time to see the Doc. For sure, no more hour bike rides and lower tension to reduce the tonal overflow.

I’m still looking into the trike and have sent some emails to the company about what I want on it. I asked if they could put a 700c wheel on the back instead of a 26 inch standard. Got a reply from the production manager that the 700c would fit. Next email I ordered a bike with a 700c rear wheel with the components I want on it. The sales rep responded that they only supply 26 inch wheels. I sent a copy of the production manager’s email just to see what happens…haven’t got a reply yet. I am sure he meant that a 700c wheel (a normal road bike wheel) would fit and I could put it on, but that’s not what he said…we’ll see what happens. 

Thanks for listening...

Thanks for listening….

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...