June 3rd to June 16th 2013

June 3 to June 16, 2013

Monday June 3^rd:  Therapy in the morning. Becoming a routine…stretch for 40 minutes, then as many walks around the gym as we can get in by 11 o’clock.

The plan had been to do therapy in the morning, lift weights in the afternoon and a trike ride at night for Godelieve’s 80^th Birthday Party in Delhi after the cycling clubs Monday night ride. In the light of not ‘overdoing it,’ Darcy convinced me not to go to the gym. Grandpa came over and put the trike rack on and loaded up the trike. Got to the Belgian Hall in Delhi at about 5:30  and got onto the trike. There were  40 riders out and many new ones. Haven’t been around the cycling club for a couple of years and there are so many new riders that I don’t know. The learn to ride program seems to be working getting new riders for the club.

The group was big enough to break into 2. First group left and I left in between the groups. Didn’t take long for the second group to go by. Told Darcy that I wouldn’t ‘over do it’ and that I’d go 5 k. I did just 5 k. Grandpa and Ken stayed with me. It felt good to be riding with them again. There were a couple of hills on the route and I was able to shift down low enough to get up the short steep one over the railway tracks and up the 200 m one as well. I was a little concerned if I could get up the hills but if I’m in the right gear it works ok. Still have another chainring to go on the front. 

The tone set in right away as the ribs got tight and both hands tightened up. The brake is on the right hand and I must remember to keep my index finger on the brake. My hand is too stiff to be able to squeeze the brake without the finger on it. I was riding at about 12 kph on the flats and got up to about 20 kph on the downhills. Put the brakes on going down the long hill. Don’t trust my bike handling skills to be going 40 kph…at least not yet. Was able to go about 5 kph on the uphills. Got back to the hall and the muscle tone was setting in. It was hard to breathe on the uphills as the rib cage was so tight it wouldn’t expand enough to take a big breathe…or talk. Going to have to work something out for the hills.

It was time to get off the trike. Needed something to hang onto to get off the seat. Pull the trike up to an old steel fire escape where I could hang on. Got my left foot caught under the stair and I couldn’t move forward or backwards and we were stuck. Couldn’t move forward or backward. Darcy suggested that we take my foot out of the pedal and it work. Ken hadn’t seen me for a few months and he was impressed with how much more mobile I was. Guess that is something I don’t see as the changes are so slow.

Tuesday June 4^th: Off to therapy with a lot of muscle tone in my back and legs. Don’t know if I can walk. Got some good stretching in and did a bunch of sit to stands and then did some walking. First lap went fine. Started the second lap and about ¼ of the way around the left leg was too pooped to participate. The tone prevents me from walking properly as I can’t selectively turn muscles on and off. Since the muscles are on I can’t recruit them to walk. Try it…tighten up all the muscles in your legs and take a few steps. Then tighten the back muscles and walk again.

Wednesday June 5^th: Off to the gym with Yonna and Bob. Bob is a friend from New Jersey who I met a few years ago when he was riding from New Jersey to Los Angeles. He has been coming for a visit every year. Thanks to Yonna and Steve for billeting him for3 days. Did a good weight routine and got lots of work done on lefty. Yonna got it into positions it hadn’t been in for a long time. The weights are definitely making my legs stronger but with a cost of tonal overflow. 

Interesting when we got to the gym, Yonna helped me walk in. Instead of going in the members door we went in the staff entrance as it is a little shorter walk, not knowing that the alarm isn’t shut off until the manager arrives at 9 o’clock. We had to listen to it for about 5 minutes.

After weights it was off to the pool for some relaxing and stretching. It was a little hard to relax as the water was quite cold, probably around 80 when usually it is 87 to 89 degrees F. We did some water running in the deep end. That feels good but it indicates that the left hamstring is too weak to bend the left knee very far.

Thursday June 6^th: Woke up with lots of muscle tone. All muscles are affected including my bladder. It is becoming more difficult to start peeing. Must be careful with that as I don’t want to go back to using catheters.

Stephanie and Quin a physio student stretched me for about 50 minutes at therapy. They got me into prone lying but instead of having my face in a face toilet, they had my face hanging over the edge of the matt. No claustrophobia with that set up. They were trying to get me to turn on my left glut independently of the right. I can’t do it. To walk, I need to selectively turn the glut on and off. Eventually I got into a position where I could just turn on the left side…yeehaw…but it very hard if not impossible to get into that position by myself.

A fear that I am starting to have is that exercise, weights, cycling, walking may cause muscle tone. I am now sure that it does. Stephanie doesn’t want me to do any exercise including weights and riding the bike for a week. All I can do is go to the pool and do some relaxing and stretching.

Friday June 7^th: Once again I learn the value of the meds I am taking. Missed my bedtime pills and woke up at about 4 with every muscle in my body tight. Had a hard time breathing as the ribs were so tight it was hard to expand them. Even the tummy was tight making it hard to belly breathe. So today is the beginning of the rest period. Boring! Not used to sitting around doing nothing.

Saturday June 8^th: Missed karate due to some diarrhea this morning. Now we know it’s not caused by exercise. Another boring day. Did some stretching and did some sit to stands. Even though I didn’t work out the legs are burny/tingly…not a nice feeling. In the morning I am very tight and have one or two spasms. Just thinking that I take baclofen at breakfast, lunch, dinner and at 10 o’clock at night. From 10 pm to 8 am the baclofen may wear off. I think I’ll try taking the baclofen at midnight. 

Not a good day…had to get out of the house a couple of times once to blow the stink off and once to get away from the burny/tingly stuff. Just a very crappy day…tomorrow will be better. Legs were very burny/tingly when I got into bed. Darcy said both legs and my feet were cold…must learn that burny/tingly is cold legs and not nerve pain…that is a relief.

Sunday June 9^th: Hmmmm…crappy day turned into a crappy night. Had to get Darcy up at 2:30 AM to take me to the crapper. Alright after that. Hopefully getting to the crapper will be easier when I can walk to it when I need to.

Went to Karate with the Brown and Red belts. Sensei Calum gave an excellent basics class. Sitting in the chair watching I tightened up. Haven’t done any exercise since Thursday, ye’d think the tone would start easing off…but no…it seems to be spreading to my neck and head. It feels like I have an elastic band wrapped around my chin and over my head. My ears are also numb and my nose is stuffed up. There has to be something else going on that is causing the tone other than the exercise. My lower abdomen is always tight and burns at bit but I put that down to the tone in my lower abdomen. The tone is interfering a bit with my peeing as well. Perhaps it is time to get the bladder and the prostate checked out. I do have BPH but my PSA has been ok.   

Monday June 10^th: Dr’s appointment to see about the bladder/prostate. Interesting method at the Drs. Office. You call to make a same day appointment. That way there is no waiting list. If the day is booked, call back tomorrow. 

Learned something about my thermostat. Mentioned that the legs and feet get burny/tingly, seems it is my response to having cold legs or feet. Got into bed last night and my legs from the knees down were burny/tingly. Darcy felt my legs and they were cold. Covered my legs and put warm socks on and the burny/tingly feeling went away. Not much science behind it but that’s my take on it. Could be easy to repeat the experiment.

Was very tight for physio today and Stephanie spent a lot of time stretching me out before walking. Walked with Stephanie on my left and with the cane on the right…did 3 laps. 

Wednesday June 12^th: No physio…boring day. Got on the trainer for a ½ hour spin. Haven’t been on it for awhile. Don’t know if it was the rest that made it different but my legs felt very strange pedaling. They were burny/tingly while pedaling and felt weak. Least distance logged for long time. Ribs and back tightened up and stayed tight all night. My take is that, I need to do it regularly to see if I can tire the muscles out and the tone will subside…”we’ll see if that is the correct prognosis, Dr. Steen!”

Thursday June 13^th: Very stiff, had to have the PSW help me sit up in the morning. Need to stretch out a lot in the morning. 

No therapy today. Still tight from the trainer yesterday. Taking the antibiotic twice a day. Do not notice any change in the muscle tone. For muscle tone, I take baclofen and nabalone. Nabalone is the pill form of synthetic Marijuana. Doesn’t seem to be working all that well.

Friday, Saturday, Sunday June 14^th 15^th  16^th: The usual stuff, Saturday and Sunday Karate. The big think is the muscle tone. Sunday was not a good day. Muscles were so tight the ribs were hurting. I sat in the chair from 8 in the morning ‘til 7 o’clock at night and that could have something to do with it. Laying in bed does seem to relieve the tone a bit.

How am I Feeling?

Beginning to feel that this is how it’s going to be. If I exercise, I’ll have tonal overflow. That is beginning to sound like a broken record and you have heard enough of that. I start thinking long term and that gets me down a bit. Just have to take it one day at a time or hour by hour in some instances. I’m 21.5 months out from the accident and I have come a long way but this is when the doubts start to get in the way. When I talk to the physios and the Doc’s about the tonal overflow they all just nod and they can’t say if it will get any better. I get the impression that they think it is something I am going to have to live with…..grrrrr. They say, thanks to the Christopher Reeve Foundation that changes can occur as much as 5 years out from the accident. I’ll just keep riding and see if the tone stays the same or gets worse.

Thanks for listening…

May 20 to June 2, 2013

May 20 to June 2, 2013

Monday May 20^tH: No therapy…it’s a holiday…must do my own thing. Went for a coffee with John, Grandpa and the Sarge on John’s deck. Nice to sit outside and suck back a cup of java. Then it was off to the gym for a workout with Grandpa.  

The story of the week is bowels…they ain’t workin’ all that well.. I have been experiencing some episodes of diarrhea that can’t be explained. I usually have a BM every night around 8 o’clock. This week for some reason I didn’t go at night but went twice, Monday and Thursday in the morning.  And each of those were accompanied by an episode of diarrhea. I know diarrhea is probably too much information, but it does impact on what I can do. The ol’ Depends go on if there is any chance of an accident. On Monday at the  gym I did have an accident but thanks to the diaper, no-one knew, or  if they did, they didn’t say anything,

The gym workouts are going well. The legs are getting stronger and  the workout takes about 1 3/4 to 2 hours. Need to shorten it a bit. I have been doing a pyramid on the leg press which takes quite a while. All the other arm and leg exercises, I have been doing 5 sets with low weights and 10 reps. Think I‘ll increase the weight and do fewer reps and see how that works. Although heavier weigh causes more muscle tone,

Darcy’s trike finally’ arrived on Thursday May 23. The Hawk and Clarkie, a couple of old rugby teammates came for a visit on Thursday as well. They timed it just right as they helped unload Darcy’s trike and did some minor adjustments to the trike so Darcy would fit on fit.   

Oh yes, on Friday, May  24. I walked into the gym with Yonna and Grandpa helping.  Walked between stations and walked out to the car after the workout. Didn’t know how well that would work as the legs were a little tired. The left hamstring gets tired and then I can’t bend my knee to lift my left foot. This complicated by the fact that I can’t lift up my toes and that’s when I trip on them. At Parkwood they tie my toes up and that helps keep it out of the way.

On Saturday, May 25, I hadn’t been on the trike since the shorter cranks were installed. Think deep down, I was leery of trying in case they didn’t work. Got on the trike but my left leg is not strong enough the click my cleat into the pedal and Darcy isn’t strong enough to turn my foot and click it in. Rode over to Karen’s and she was able to get my foot in. She was excited to see Darcy and I on the trikes. She got her bike and we did a tour of the subdivision and then rode down to Grandpa Bob’s. Just so happened that Grandpa and Shirley were about to have an afternoon cocktail, and after much arm twisting, we joined them. The beer was excellent but unfortunately it makes me pee and I didn’t bring a urinal. Shirley provided me with a plastic container and all was well. By the end of the day we did about 10k. Felt real good, although Darcy did beat me up all the hills. Must learn to get into a lower gear before the hill starts. The left leg isn’t strong enough to turn the pedals up even the slightest rise if I don’t get into a very low gear. Karen had to push me up one hill….grrr. The trikes handles quite well and really gets going on the down hills. Just must learn to handle the muscle tone. My neck and shoulders were very tight as the seat is a laid back position. I have to hold my head up. Ordered a head rest that attaches to the seat…that should help.

The knee can bend far enough to turn the pedals but it hurts a bit on full flexion. It was a bit sore by the end of the ride. There is tonal overflow big time. When I got up on a Sunday it was hard to stand up  straight  and the legs didn’t want to move and stayed very stiff all day. Exercise is supposed to help muscle tone dissipate.

Darcy really likes her trike as well. Sold the ‘Wizz’, my titanium road bike…sob, sob…pays for the trike though.

Friday May 24^th: The physio must of thought I was nuts. There was some confusion about the schedule as Tues, Thurs, Fri. was changing to Mon., Tues. Thurs. We weren’t sure if it was on or off for Friday and no driver was scheduled and Darcy had a Dr.’s appointment. Found out on Thursday, there was therapy but I had no driver. I had emailed a friend, Paul on Thursday to see if he could drive. I just forgot to have him call instead of emailing back as I wasn’t on the computer to get his response. I assumed he wasn’t coming. Called Parkwood on Friday at 8:30 and told them I wasn’t coming. A few minutes later, Paul was at the door ready to go. Called Parkwood and left a message that I would be there for 10 o’clock. While getting into the chair to go, I had a diarrheal episode….grrrr! Note: Depends do work. Called Parkwood again and left a message that I wasn’t coming…lol! Off-On-Off again in a space of 5 minutes.

Monday May 27^th: Went to the Doc to get some prescriptions filled. He had no solution for the bowel problems. Still have lots of tone. Very hard to  move and to do sit to stands. Went to the gym with Grandpa and had a good workout. Lifting tightens me up even more. Going to have to make some decisions about working out. Was able to get through the workout but all my muscles were like a rock after and it doesn’t go away.

Tuesday May 28^th: Must find out what is causing this bowel problem. Missed therapy today because of it, but there is a story there. Thought I’d take a day off and rest to see if that would reduce the tone…it didn’t. Bowel issues continue. Lots of gas and some intestinal pain as it moves around. Had to go to the can early before the PSW arrived so Darcy did the work of getting me there. Although, undressing me is easier for Darcy as I  can stand to get the pants off rather than rolling around in bed and requires a lot of pulling. Again probably too much info but I needed a shower to clean me up after this episode…

Wednesday May 29^th: Had to cancel my gym workout with Grandpa as I was just too tight. After an internet search it seems that pain associated with bowel problems does cause muscle tone so it may not be the exercise by itself. Time to experiment. Hopefully it is the bowel issue on top of the exercise causing the increased tone. I can live with the tone if it isn’t too strong. I did some net surfing about stretching and muscle tone in people with spinal cord injuries. Guess what? Muscle tone is a shortening of the muscle fibers and stretching is a lengthening of the fibers….dah!!!!!!!!!!!  If I can manage it, stretching needs to happen before AND after any biking, walking or weight lifting. Hmmmm… time to do my favorite exercise. Two things I am not good at doing are, drinking and stretching…guess that’s gotta change. Another thought, what if the increased exercise is causing  diarrhea? Something else to look at. Here’s something else that is too much information. Muscle tone not only affects my legs, arms, back and tummy, it also affects my lower intestines and tightens it all up and makes it difficult to do any bowel functions.

Interesting night. Got ready for bed as usual but then I got very hot and the legs were all burny/tingly and I needed to get outside. Darcy put my shoes on and got the chair ready. I was very uncomfortable and outside seemed to calm me down. When I did get back inside the agitation started again. Don’t know if it was a real panic attack or just because it was hot and muggy. Then it happened again and outside again doing laps of the driveway…settled down and I got to sleep by about 12:30.

The bowel issues seemed to have cleared up. Don’t know if it was caused by a bug or heaven forbid…too much exercise. Don’t want it happening again…as the Doc doesn’t have an answer, we will just muddle our way through it.

Thursday May 30^th: Went to PT for the first time in a week. Stephanie started by loosening me up and then we did a bunch of sit to stands that went ok. Given what went on the past week, I was a little leery about the walking. Didn’t need to be. Tied my toe up and put on the thin walking shoes and  ready to go. The first lap was the best walk that I have done to date. I was able to keep my bum in for most of the walk and I could actually stand on my left leg. Must think about it but I can actually bend my left knee and the hamstring is strong enough to lift the foot off the ground for about ¾ of the lap then I start tripping on my toe. Doesn’t happen with every step and I must think every move to make it work. Don’t get me wrong, if the physios weren’t there I’d fall on my butt on occasion. 

The physios hold my hands and move them away from my body when they walk me.  That is to take my hands out of the equation and let my brain focus entirely on my legs and walking. Even though my hands are away from my body, walking still causes tone in my arms and at the end of the lap, Stephanie pries my left hand open to extract her hand. If I don’t trim my nails she would have wounds on her hand. She says her hand goes numb half way around. I squeeze the right hand as well, but it does squeeze unless I consciously think about opening it, which they cue me to do if it squeezes too tight. There is muscle tone in my back and ribs that won’t go away and walking seems to tighten me up just like biking even with stretching….and that is a very big, bolded, caps….GRRRRRRRRR! Dah…perhaps a stretch after would help. Remember after the treadmill Barry and Janelle would aggressively stretch my legs and trunk…why didn’t the penny drop then?????? 

By 5 o’clock it felt like I had a knife stuck in my back. Put Dr. Ho muscle stimulator on my back and that seemed to help a bit. Don’t know if it was the walking or sitting at the computer for 3 hours. Once I got into bed it began to ease off. I think Dr. Ho helped relax it. It should have helped as I had it on for about an hour.

Friday May 31^st: When I wake up every morning I’m very stiff as I don’t move at all during the night. Just stay on my back and don’t move for 10 hours. Need to start a stretching in the morning. The back was a lot better but still tight.

Went to the gym with Grandpa a 9 o’clock.  Starting to be able to get on and off the machines a lot easier. Tried to concentrate on keeping the upper body and the arms relaxed when doing leg presses. Must concentrate on both, lifting and staying relaxed. Seem to be getting the hang of it. I think the weightlifting is paying off. The left hamstring is still very weak but I can notice some changes for the better. Can bend it enough to get the foot out of the car with the seat only ½ way back and it can lift my foot for about ¾ of a lap when walking.

Still can’t curl 5 pound with my right arm… grrr. Only did weights twice this week. It’s better when Yonna comes, she won’t let me cheat on any lifts and it saves interrupting Grandpa’s workout. I know he doesn’t mind but I don’t like bothering him.

Had a coffee with the Sarge and Steve after their golf game…they are so full of it. Had a score card with them shooting under par for the course…yah right…in their dreams!

Did ½ hour on the trainer, that’s 9 k. Haven’t been on the trike, as I sit in quite a laid back position my neck and shoulders get tired from holding my head up. I have ordered a headrest that should be here next week. Holding my head up causes a lot of muscle tone everywhere. Darcy can get me on the trike but she can’t get me off of it, need one other person to give me a boost up. Just can’t get off the 14 inch high seat by myself.

Saturday June 1^st: Where did May go? Woke up tight. Didn’t stretch as I had to get to Karate class. A good class and ol’ Frank is hanging in there. Since was very tight. Decided to take the day off. Sat at the computer for the afternoon and my back was very sore as lean forward to type. Darcy got me this power chair like a ‘lazyboy’ that moves up and down and will even stand me up. I think it will be more useful when I’m walking. I have trouble sitting in it because I can’t get my bum back far enough to sit properly in the chair.   

Sunday May 2^nd: Karate at 9:30 and coffee with the guys and in the afternoon. Muscle tone is getting to be a bother. When I’m in the house and I am tight I sometimes need to go outside to distract myself from the tone. It’s not really a panic attack but just, how should I say, it’s almost similar to one.  Need a change of scenery to take my mind off the tone.

How am I Feeling?

I was thinking the other day about how handicapped I am and how dependent I am on other people. I am a lot better and Darcy’s job is never done. Just to get me ready for bed, she puts the splint on my left hand, puts heel cozies on to prevent getting blisters, moves the night table into position, makes sure the urinals are handy, gets a bottle of water, pulls up the covers, gets the CPAP mask ready, tops up the CPAP machine with water, gets my night time pills, puts the TV remote on my lap. To use the urinal at night, I need light. The remote is to turn it on so I can see.The workers dress me, and shower me and do my bowel care.  

A little concerned about the ‘anxiety’ attacks on Wednesday and Sunday. Don’t know if I need to see the shrink about them or not. It could be dysreflexia. It happens when I am in pain and I get some of the of the symptoms, sweats, a bit of a headache and a type of panic attack. A major symptom of disreflexia is high blood pressure. We checked my BP and it was normal. Don’t know if high BP is a mandatory symptom or not.

Thanks for listening…