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….