Dec 9 to Dec 22, 2013

Mon Dec 9^th: The Power chair quit working. The controller would just flash when it was turned on. We called Motion Specialties in London and they couldn’t get here until Tuesday afternoon. Got back in the manual chair...what a pain. I can’t push it with both hands, instead of 2 hands I pull with my right foot. I can move in a straight line but it tightens up my hamstring. Not a good thing. It is funny as Darcy would expect me to do something and I’d just sit there...lol! 

Went to the pool for a swim and concentrated on my left knee flex when walking. It is easier to do in the pool than on dry land. A problem occurs when I step forward on my left, I land on my toes as the ankle won’t bend enough to allow a heel strike. When on my toe I sometimes lose my balance and do a pirouette caused by the buoyancy. 

Tues Dec 10^th: A good therapy session. The student Physio had me walking backwards for about 10 m. I can walk backward but I can only get my left foot back even with the right. Again it is that inability to lift that damn left foot that causes the problem. One interesting thing did happen as I was standing in front of the mat, I actually took about 3 steps without the walking stick. That is the first time that has happened. I’ll try that at home and see how it goes.

I did about 15 minutes of prone standing that is standing and bent over a table. They put my arms out to side and it stretched my left arm. Now, at 6:45 there is a lot of burning pain in my arm at the inside of the elbow. Ah it will go away once I get into bed it will go away...and it did.

Wed Dec 11^th: My own training day. Did weights at the gym. Grandpa is leaving for Florida tomorrow. Took Darcy to the gym and I think she is trained well enough to get me around. She is also there to keep me from overdoing. Hit the pool with Yonna after weights. Had a good stretch. Going to the pool three times a week is helping a lot. Being in the pool is almost as good as therapy at Parkwood.  

Thurs Dec 12^th: Therapy Day. Again the student physio got me going and stretched me out very well and got me doing some shoulder exercises by squeezing my shoulder blades back and down. That is what is supposed to happen when I walk as it will keep my chest up. I must have pulled my shoulders back at least 25 times and I I did another few steps with no walking stick and no-one holding on. Actually walked toward Darcy and put my hand on her shoulder. Gee soon I’ll be walking by myself. A goal would be to walk the dog for 500 m around the crescent by spring.  It may be a bit lofty, but nonetheless a goal. 

Just thinking of the progress to date. The good thing is that I haven’t plateaued. Every week or two there is something new happening.  Usually I don’t notice the little changes but people who haven’t seen for while let me know how I’ve changed since they last saw me. This week it was being able to step without the walking pole, haven’t managed that at home yet....but soon.

Attended the Karate Club’s annual Christmas banquet. It was very well attended, at least 250 and that is with 2 schools having their Christmas pageant on the same night. Great to see the reaction of the kids getting their awards. Hey this ol’ dude got the ‘Spirit Award’ from Sensei John and retired the award. Very humbling as there was a standing ovation. John and I have done a lot of training together. We’d train a couple of nights a week in Karate over and above classes and one night in particular stands out. I started Karate in January 1993 and on April 17^th of that year I was training with John in the arena (concrete floors) when he asked me to attack him for Self Defense #7. He was a Purple belt and I was a Yellow Belt. I didn’t know the attack. He said it’s easy just punch high and I did...he block up and then swept my leg (kicked it out of the way) and hit me across the chest with a forearm strike that sent me flying through the air and I landed on my butt on the aforementioned concrete floor about 10 feet from where he hit me...I did bounce. Those were the days when I wrote down all my workouts. The note was, 'John knocked me on my ass today. I will get even. We would get up at 4:30 AM to be on the road for 5 in time to get a long run (20 to 30 k) in the morning. It was beautiful running while the sun was coming up and Venus was setting. We had to start running from the Rec Center, even though we lived within 800 m of the Rec Centre we’d drive our cars over and start the run there....silly eh? John’s famous line occurred one morning while running up Lisgar Ave as runners always pick up the pace at the end of a run and John actually said “we started running sooner, faster, quicker, earlier today, didn’t we?” Guess that is an accountant’s firm grasp of the English language. Ah, those were the days...Thanks for the award my old friend!

Fri Dec 13^th: Get the bike, get the trailer it’s time to hit Dover for a beer. My Friday the 13^th was for an MRI of my neck...yikes. On Tuesday I wasn’t able to go into the one I had to do in London to get my shoulder looked at. I really need this one on my neck. My good right arm has slowly been losing function. Was able to comb my hair, brush my teeth and eat with relative ease. Over the last 3 or 4 months the functionality has been decreasing. Instead of lifting my arm up to get stuff to my mouth, I just bend my arm at the elbow and bring my head down to meet my fork or toothbrush. Can’t brush my hair and have trouble reaching up to grab the car door to get into the car. I thought it was getting weaker because I wasn’t lifting proper weights. The weights at the gym are just a bit heavy to do all my arm work outs. I mentioned it to Stephanie to see if I could come in early and do a weight program using the pulleys in the gym. She explained to me that there may be some neurological reasons why my arm is getting weaker. She would prefer to get the results from the MRI before setting up a weight program. What happens is a pocket of spinal fluid builds up in the spinal cord and it puts pressure on the nerves. They need a MRI to see those pockets of fluid. A shunt is installed to drain the fluid away. These usually don’t happen until 20 years or so post incident.  The down side is that the shunts can plug up with scar tissue and they have to go in and do it all over again. Hopefully it is just lost strength due to 0not lifting properly. I haven’t lost the range of movement as it goes everywhere they want to put it. I just don’t have the strength to do it. I’ll just have to wait for the report from the powers that be. Dr. Steen should keep quiet and not scare the shit out of me. What happens when I can’t lift my arm is because my shoulder goes up...as soon as the shoulder hikes up the arm won’t go up. 

Sat Dec 14^th: Up at 6:30 and off to Karate at 9:30. Small class as some of them are doing the Christmas thing. Getting into the car was interesting. The road was slippery and I couldn’t hold my left foot under me to stand. Darcy and Frank, yup 79 year old Frank helped me to stand. Didn’t go to Tim’s as the parking lot was covered in snow and I wouldn’t be able to get in the car.

Did a little painting today.  Practicing doing clouds and I need lots of practice although I did try some sunset colours, yellow and orange, which are fun to do but very difficult to get right. I am still trying to learn mixing colours as well. Acrylics dry quickly, for the most part it is painting on dry paint making it difficult to blend the colours. Practice...practice...practice...

Did the normal routine before bed...the bowel care and I can’t believe with all the stuff I take I’m still a bit constipated....grrr! Walked from the washroom back to bed. Did some sit to stands and got into bed.

Sun Dec 15^th: A quiet day. For some reason I was very tight today. Went for coffee with the guys at McD’s. My nose plugged up when I got home and I didn’t eat much lunch, not really hungry.  Don’t know why! The nose stayed plugged until about 6. When it’s plugged, must drink water to stop the mouth from drying out.

Didn’t go to the pool. Watched some videos about mixing colours and practiced painting more clouds.

Oh yes someone shoveled the driveway while we were out at coffee. 

Grandpa Bob left for Florida on Thursday, I think it was soon enough to miss all the snow storms.

I felt quite crappy all day. My legs felt tingly especially just above my knees. Didn’t ride the bike. Since I did no exercise, I didn’t fall asleep until 11:30 and slept through to 5:30 when I woke up for a pee. The legs are toned and feel like they won’t work but they do when I go to stand.  My right arm isn’t working that well either this morning.

Mon Dec 16th: Happy Birthday to me! Yikes...67 years old! Right arm ain’t working. Did some light weights on it at home. Can’t lift much...curl 2 pounds ...oopps 1 kg...did 3 sets of 5 and the arm is pooched...very disconcerting. Did some just lifting my arm straight up and couldn’t lift it much past my shoulder...worry, worry, worry!

Went to the pool with Darcy for a swim. Did the usual stretches, walks and work in the deep end. I am now very susceptible to the cold. The pool cools me down and even though I dry off and get dressed in the referee’s room I get cold and outside now makes me colder. By the time I get home the car doesn’t have time to warm up. Once home I put a blanket on my legs and a heating pad in my lap. After lunch I started painting and took off my sweater because don’t want paint on it. Again I cooled down, hands, feet legs and back were very cold and I was very tight...hopefully from the cold and not neurological but I really am afraid that it is...stop thinking...be positive...wait for the docs to tell me what’s going on...damn it. 

Got on the trainer as I thought that may warm me up. Was going to ride for ½ hour, lasted about 60 seconds. My legs tightened up, back and my upper arms became very tight. And I had to get off. Darcy checked and I was cold all over particularly icy feet arms and hands. As I write this I have a sweater on, a blanket and the heating pad. Now my knees and quads are burning and tight, very uncomfortable. Enough whining. 

Ok its 9:30 PM and I just had a panic attack and had to get out of bed. Don’t know why that helps...but here I am writing this. Took an anti-anxiety pill and I’ll wait ‘til that kicks in...Not a good night.

Tues Dec 17^th: Hmmmm....now I’m in my 68^th year. Seems I didn’t sleep well, as I got up at 7 and sat at the computer and kept falling asleep. Therapy was good did some new stepping that I can do at home. Some sitting drills that help my back relax. Stephanie did a good job stretching out the back and arms. Did some interesting walking drills. Walked forward for 15 m, backwards for 15 and sideways first leading with the right then with the left. Leading with the right is the most difficult as I must stand on my weak left leg. Can now lift the left foot off the floor for the first few steps...that’s progress. The leg tires out quickly and I’m not able to bend the knee and lift the leg for very long.

Went to Cora’s for lunch and had Peggy’s Poached...again! Got home at about 2 and the body was starting to tighten up big time. I rode the bike 9.1 K in ½ hour. That tightened up everything even more. Since I stopped riding the bike during the treadmill program, it causes more muscle tone than ever before. Perhaps, the body needs to get accustom to the bike again if I start doing back to back rides and see what happens.

Wed Dec 18^th: No therapy, off to the gym at 9:15 with Darcy. Got the workout done in an Hour. Going to the pool with Yonna and told her we’d be there by 11:30. Arrived in the parking lot at 11:25 and proceed to get out of the car only to find we had forgotten the cushions for the wheelchair. Back home to get them, arrived back at the pool at 11:45, not all was lost, Yonna was doing laps. Good workout. Getting confident and can walk around easily, can catch my balance easily. It would nice if that would translate to dry land walking. The buoyancy in the water helps a lot. Did have a bit of a scare today. I was in the deep end doing my thing hanging on the edge with my right hand. Henry a handicapped guy who is blind moves along the edge of the pool. I let go of the edge to let him go by, not thinking that I have never been in open water with the floats up. My legs started floating up behind me tipping me forward...good thing Yonna was there to rescue me.

I think I have something going on somewhere, bladder, prostate or intestines. I’m all toned up all the time. Even the massage therapist mentioned that my quads were tight and even a massage didn’t loosen them up.

Did a little painting...omg it’s frustrating. Not very good at mixing colours. Practice...practice...practice!

Thurs Dec 19^th: Off to therapy for 11. Arrived 10 minutes early and got some stretching in. Breanne the student got me all stretched out and then got me sitting on an air disc to help me strengthen my core. It seems to work great as I feel the muscles working in my core. Breanne got me up doing sit to stands and then it was walk time. They put the belt on and Stephanie, the physio hung onto the back and I walked about 15 m. Had a bit of a rest, walked backwards for 10 metres, a little rest then did 10 m sidestepping leading with the left, 10 m leading with the right. I sidestepped over to the stairs. A set of 4 steps with a railing on each side. Walking up is easy, step up with the right bring the left foot up. Once at the top, how to get down? Put the left foot down and stand on the left leg and bring the right down. They give me a little more assistance on the way down. A rest...then up again and down, only backwards, that didn’t work all that well. A rest and up again and down again frontwards and that is the way to go. The hour was up and I was pooped. Legs have a lot of muscle tone and are burny/tingly but it felt good climbing the stairs. I wanted to see if I can do stairs and will climb out of the pool one day on the stairs.

Once again to Cora’s with Brian and Dorothea for lunch...yup had Peggy’s Poached again. The waitress and the cashier wondered where Darcy was.

Had a Dr.’s appointment when I got home to see if he can figure out what’s causing my muscle tone. The Dr admits he’s at a loss to know what to do with me. Something has changed that is causing all this tone.  Got a PSA and they will check my urine as soon as I take it in...unable to donate at the office. 

The bad thing is there is no therapy for 2 weeks. I will need to do a lot on my own. I have exercise to do for my core on the cushion. The pool will be closed over Christmas for 3 days, but the gym will be open and I have the trainer to work on.

The hard workout made me very tight and even tightened up my butt which is a bad thing for bowel care. Needless to say I didn’t have a BM which means problems in the morning.

Fri Dec 20^th: You guessed it on the ‘can’ in the morning and a pair of Depends, just in case. Cancelled my gym workout which was too bad as John V was going to take me. Had no accidents all day and I knew I was ok cause I farted at about 2 o’clock. What a relief...ha! It’s the little things that count.

This was a rest day. Painted a bit...practice...practice! Did some stretching and sit to stands and my normal walk and work before bed. Still have a lot of muscle tone in my arms, legs, back and my abdomen. Take pain meds that helps a bit.

Happy Birthday to Kelly my dear daughter...in Australia...miss you!

Sat Dec 21^st: The 21^st was the first day of winter when I was a kid. But it seems the spin of the earth doesn’t exactly match the calendar. Here’s some trivia, the moon is moving away from the earth 1.48 inches a year or 3.78 cm...I thought it was looking smaller the other night...lol!

Coffee in the morning with George and John V and Gavin. Heard a nice story, John V’s stepson, Matt is a special needs boy and he cuts our grass in the summer and shovels the driveway. We gave him a tip for his good work. There was Christmas function  for special needs people in Tillsonburg and 2 of Matt’s friends couldn’t afford to go so, Matt paid for them....now that’s true Christmas spirit.

Coffee (a decafe) in the afternoon with George and Vern. I spent about 3 hours in McDonalds today. I gotta get a life. Finally found someone who fits my winter cycling jacket. It was always a bit tight on me but fits Vern perfectly.

The muscle tone in my back and legs is getting worse. They are burny/tingly all the time now. Today turned into a rest day as there was no time between coffee breaks to get anything done...feels like I’m back at work! 

Grrrr...no BM again, don’t know what is going on. That means a problem in the morning.

Sun Dec 22^nd: Yup the usual morning after the night before. On with Depends, just in case and I needed them this time. Stomach didn’t feel good all day. Legs are toned so much I don’t even want to go on the trainer. Now, that’s bad when I don’t want to pedal. Missed the swim and missed another coffee at Mc.D’s. Another unscheduled rest day. Did some more painting...still practicing doing clouds. I sit over the table and I get quite stiff while painting. Perhaps raising the table up may help. Didn’t feel too good when I went to bed, tight everywhere.

How am I Feeling?

I am feeling a little apprehensive, well more than that, very concerned about the deterioration of function of my right arm, a long way from where it was 6 months ago. I really don’t want to go back to having someone feeding me again. Just writing this gets me all worked up about it. The MRI should show if there is any pockets of spinal fluid pressing on any nerves. I should wait for the report from Dr. Fehlings, the surgeon in Toronto or from Dr. Potter, the Physiatrist in London. Dr. Steen will consult with both of them but probably not until the New Year. 

I wrote the above paragraph at the beginning of the report. On Thurs the 19^th, I had an appointment with my Dr and he read the report of my MRI. Everything was the same as the last one, no problems. I guess it is true if you doctor yourself you have a fool for a patient. It’s not my neck causing problems. What the hell is it then?

Now here is my second theory. I am taking Lactulose and Senikot which are two compounds that irritate the large intestine to make it contract as my intestines are neurogenic and are not good at pushing the contents out. If it is irritating and contracting too much that could be causing some feedback to my autonomic system causing all this tone...ha...how’s that for doctorIng. I’ll start playing with the Lactulose and Senikot doses and see what happens.

Thanks for listening...

November 25 december 8

Nov 25 to Dec 8, 2013

Mon Nov 25: No therapy today as we are changing over from the treadmill program back to the outpatient program. I am going back to my former physio, Stephanie. Due to her workload I won’t be seeing her until Friday.

Went to the pool with Darcy and did the usual stuff. I am getting much more confident in the pool and I walk unassisted, not hanging on the wall.  I am able to correct myself if I lose my balance. This is a good feature as it teaches me correct steps on land.

Tues Nov 26: No therapy but went to London for Botox. They put it in my forearm to weaken the muscles so my fingers will/may open easier. In my bicep to make it easier to straighten my arm. In my calf so I can pick up my toe easier. After botox it was off to Cora’s for a Peggy’s Poached...2 poached eggs on multi grain toast with a bowel of cottage cheese and ½ a plate of fruit...yum!

Wed Nov 27: Went to the gym with Grandpa. Have to go at 9:30 in order to get to the pool by 11:30. Yonna takes me on Wednesdays. Had a good stretch and a good workout. Rode the trainer for 15 minutes and did 4.4 K. The first day, able to do gym, swim and trainer.

Thurs Nov 28: My therapy got cha0nged from Friday to Thursday at 10. Off at 8:45. It was a bit of an assessment session and I did some walking. That little bit of walking tightened me up.  Was very tight the rest of the day.

There was a Grading at the Karate Club. Couldn’t miss that, from 7 to 9:30 which meant cancelling the PSW and Darcy would do my bowel care. The grading was excellent, watching the little kids get their belts and watching the adults doing more than they ever thought they could do.

Given being tight from my therapy session and sitting in the manual chair for 3 hours at the grading, I didn’t have a BM.

Fri Nov 29: Woke up early and had Darcy put me on the can. A small BM and back on with the Depends...just in case. It was rather an uncomfortable day.

My artist friend, Dawn and her husband Marc stopped by at 9:30 for a visit on their way back to Windsor. Her website is www.dawnbanning.com if you want to check out her art. A talented couple, she paints professionally and he builds gorgeous furniture in his spare time. Of course they wanted to see my painting. I had painted a milk pitcher that I got step by step directions off the net. Still doesn’t look the same as the example. Hard to do detailed work with the shaky right hand. Using only 3 colors, a blue, a dark orange and white. This means a lot of mixing of colour to get it right. i.e. blue and orange make a black, add white for a grey, add white to blue or orange and get various shades of blue and orange...oh what fun trying to match colours, but that is what painting is all about.

Acrylic paint dries out very quickly and I was wasting a lot of paint as gobs of it were drying out on the palette. I got a wet box. It is a plastic box with a sponge in it and a special paper that goes on top of the sponge, to put the paint on. It has kept the paint wet for over a week now...it really does work. I’ll just keep plugging away until I get it right. Nice thing about acrylic is that you can cover mistakes quite easily since it dries so quickly. 

Friday was beer night at Sensei John’s. WE get some different beers and try them all. Due to my intestinal condition at 7 o’clock I didn’t go to beer night....grrr!

The good news for the day is the big BM at night that kept me smiling all night long. Could have gone to beer night after the BM but didn’t want to push my luck.

Sat Nov 30: Didn’t go to Karate clas, thought I’d take a rest. Did some more painting but It’s going to be landscapes as there is no way I can do any detailed work. The hand is just too shaky. 

Sun Dec 1: December is here, can Christmas be that far away? Another Sunday, in the pool at 9 AM for about 45 minutes then off to McD’ for coffee. Did 15 minutes on the bike for a grand total of 4.3 k. Still a little behind my distances from before the treadmill program. Gives me another goal.

Mon Dec 2: Was going to go and lift weights with Grandpa at 9:30. I woke up at about 1:30 with my lower tummy feeling very tight and uncomfortable. By the time I got up at 7:45 I was feeling a touch nauseous. Had a bit of trouble eating breakfast. I got ready to go to the gym anyway. The way the tummy feels it’s seems to be the bladder or prostate causing the problem. Grandpa arrived and I explained the problem and he talked me out of going. We had a coffee instead. Was feeling a little better at noon and Darcy took me to the pool. Being able to float in the water helps me relax a lot. I am able to stretch legs and back that I can’t do on dry land. Got home and was feeling better, got on the bike and did 15 minutes of spinning and went 4.7 K.  Did my usual 10 m walk and sit-to-stands before bed.

Tues Dec 3: Finally a ‘normal’ therapy session. There are students shadowing the physio and the assistants. I am a good guinea pig since there is so much stopping me from walking. There is the knee that doesn’t straighten out, a knee does not bend easily, an ankle that doesn’t bend to get past 90 degrees, a weak calf that can’t pick up my toe. This defines my steps. With the walking pole I lean to the right to make enough room to swing my left leg through. The lean gets the left foot high enough to prevent my toe from catching the floor. This is ‘physio Steen’ speaking but I need to strengthen the left leg to get it strong enough to lift my left foot and bend the left knee. To that end, at the gym I will be strengthening the left leg as much as possible. I would like to be able to stand in one spot and march. I can lift the leg better in the deep end of the pool but out of the pool lifting against gravity, it is very difficult to get it off the floor, even a couple of cms.

0n the happy side I bottled 30 bottles of Chocolate Raspberry Port! I had it made at Country Brewmasters and got a nice surprise. I referred a customer to them so it was 20 bucks off the bill. Thanks Marianne.

My computer just quit before we left for London. It froze and I pushed the off button and left hoping that it would reboot when I got home but it didn’t. The light on the switch was still on. We took it to the Computer store on Brock Street and I was prepared for a rebuild and to lose of all my files as I don’t have a backup...doh! Seems laptops do freeze on occasion and it is a matter of holding down the start button or taking out the battery and reinstalling it. The store was very honest as they could have taken it and done a complete rebuild and I would have been none the wiser. And there was no charge. First thing I did was backup my files.

Wed Dec 4: Was a busy day. Off to the gym at 9:30 after the gym into the pool at 11:30 where I may have overdone it a bit. I did several stands on the ladder, that is stepping up on the first step several times. Home by 1:30 and a massage at 2:00. I do cool down as you know my thermostat is broken. Got cooled down in the gym and even a little cooler in the pool. Tried to warm up before the massage but that cools me down more as I am shirtless. My legs and arms and trunk were cold. When my muscles get cold they really tighten up and I feel real crappy. When I shiver it tightens up everything. When a ‘normal’ person shivers the muscles tighten and relax many times, when I shiver the muscles don’t relax. I am writing this in real time and I really feel like shit. I think I lifted too hard worked too hard in the pool and I just checked my blood pressure and it was 202/120. I have no way of alleviating the pain...just took a couple of pain pills, we’ll see how that works and an antianxiety pill. With this dysreflexia, I don’t know if it is the pain causing the increase in BP or a little anxiety thrown in there to top it up. It has subsided a bit and I’m in control once again...for now!

The psych nurse was here to talk about my claustrophobia. I have a MIR coming up on Saturday and that is on my mind as well. Seems a bit ironic that the psych nurse was here and I have a meltdown after she leaves.

Thurs Dec 5: Therapy day. I was tight of course and we got there early and we found a free mat and I did some stretching. One of the students came over and did some good hip stretches. We did some walking and I had a Eureka moment. I was walking with the walking stick and the transfer belt. A bit scary as both physios were behind me and hanging on the belt but it felt like they weren’t holding on...I digress that wasn’t the moment. I sat down in the wheelchair for a rest and when I stood up the physios held my arms away from my body which helps keep my chest up. Remember all the whining I did/do about my butt sticking out as that was caused by my left foot going flat on the floor. Well today for the first time I was able to bend my left knee and pick up my foot and step through. This does two things, first it allows me to take a bigger step with my right leg and it also keeps my butt in. It actually means that I walk straight up rather than bent over at the waist...Eureka! Now I must clarify that the walk was with 2 physios holding my arms. They were just holding my arms, not holding me up. We will see at my walk tonight if I can replicate the walk tonight. I think if I can do it all the time it will alleviate the back pain that is a show stopper most of the time.

Stephanie, the physio also tried to fix my wheelchair setup. The cushion has a dip in it near the back for my butt to sit in with turned up corners that is suppose too put my pelvis in the correct position. I haven’t felt comfortable in it since we got it. I can’t get my butt far enough back on the cushion because it is too long and it hits the back of my knees and won’t allow me to slide back further. The cushion is about 2 inches...5.9 cm too long.

The walk at night was a bit different. It is going to take some getting used to taking a big step with right and picking up the left when using the walking stick. It’s going to take a lot of practice to get it working.

Fri Dec 6: A day off from therapy. Went to the pool and tried to do the walk that I had done at Parkwood. Harder in the pool because of the buoyancy but managed to lift and bend the left leg, it doesn’t look pretty but if I can get the brain to remember the pattern, that’s all that matters. Get that pathway locked into the brain. Can’t lift the leg very well when using the walking stick.

Sat Dec 7: Saturday was the day for the MRI o0n my shoulder and if the medication was enough to mellow me out...it wasn’t. Sad thing was it was0 a big MRI unit but they pushed me a long way in and that set off all my bells and whistles and I had to0 get out. Darcy’s comment was they should have left you in there. I know its ok, I’ve survived a couple 0of 45 minute MRI’s in the past. You’d think I’d be able to handle a 20 minute one. And that’s after all the medication and coaching from the psych nurse. Only thing I can do next week is take more meds and tough it out. You feel like such an idiot after cause you know it is all in your head. I really need the one on the 13^th, guess I better double up on the meds. They are checking my neck for any little vesicles of spinal fluid that may be putting pressure on my spinal cord. They usually don’t happen for 20 years or so after surgery, but we’ll see what’s there, if anything. Gotta stay in that damn tube.

Sun Dec 8:  Hope to go to the pool but Darcy slept in and I let her sleep in, she needs now and again. Off to coffee at McD’s with the guys. Even at lunch hour at McD’s, it is the seniors crowd for the most part a couple of families with kids but mostly seniors. What did I hear that some stores are stopping seniors’ discounts as the seniors are the only ones with money.

How am I feeling?

Getting a little apprehensive about where I am headed. I do know that I am improving but I’m going to plateau soon. Life as a quad isn’t all that nice. Seems there is always something going on. It could be a bowel thing, it could be a bladder thing or something else unrelated to either. It feels like it is harder to get moving in the morning. I am very stiff after lying in one position all night.

Getting claustrophobic again isn’t nice. Must really think this one through on Friday. Just stay in there...damn it!

Thanks for listening...

november 10th- november 24th

Nov 10 to Nov 24, 2013

The week of Nov 10 to Nov 17, going to Parkwood for the Treadmill Program. They worked me very hard both on and off the treadmill. The focus being that I walk straight up without my bum sticking out. It is difficult. The left ankle doesn’t bend and I stand on my toe that makes me lift up in the air. If I go flat footed on the left, it makes my butt stick out. Every night after Parkwood my nose plugs up tight and doesn’t clear up until after bowel care.

The ol’ bowels really control my life. Bowel problems tend to get me anxious which starts the BP going up and getting sweaty etc. Impacted bowels shouldn’t bother me now as I know that we can always work it out but not with a pencil...ha!  It is a painful process but it works. The laxatives seem to be working. One reason that I get impacted is the bowel doesn’t contract properly. With the laxatives I can feel my intestines contract. Normal bowels have peristalsis which moves the material in the right direction in my neurogenic bowel it all contracts at once and it feels very strange but it works.

Monday Nov 18^th: An assessment day for the locomotor program. Stood for 2 minutes, stood for 10 seconds with eyes closed and stood for 1 minute with my feet together which is the tough one to do. Then it was walk time. Walked the length of the gym which is about 50 feet then had a rest and it was up to see how far I could walk in 6 minutes. After a rest it was up and at ‘em. Got 109 feet and I was so pooped the Barry, physio assistant had to catch me. I wasn’t thinking about standing and my legs just gave out. Onto the treadmill for a short session. Was able to do one session for 7 minutes. Then off the treadmill and headed home.

My nose didn’t plug up until I got home. Now, here’s the funny thing about how the ol’ body is wired. At about 5:15 my nose was plugged shut and no air could get through it. Went to have a pee and as soon I started peeing my left nostril opened up completely and stayed open for about  5 minutes and then plugged up again. What’s that all about...eh??

After all that exercise it tightened up the entire body, there was no BM...Yup it even tightens up the bowels...and that is with all the laxatives and a suppository...aka...the Silver Bullet, I am taking.

Tuesday Nov 19^th: Still hadn’t had a BM. Put on the Depends, just in case and cancelled Parkwood as I can’t predict what could happen.  As per usual nothing happened all day. Just waiting for the evening’s BM. FYI... It all came out ok...lol! A relief!  

OH yes, I started painting again with acrylics. Colour mixing is very hard to do...something I’ll have to learn again. My right hand is a bit shaky. I won’t be able to do any fine detailed work but I’ll just have to learn some new ways to put paint down. There is a lot of beginner videos on painting online...I’ve watched a bunch trying to find a technique to use. What got me going on painting again was a picture that Bryce took of Lake Lisgar at sunset. I saw it and said I’d like to paint that. I have some acrylic paint that Dawn gave me way back when in Toronto. Kelly had left all her paints here but some were very old in lead tubes...Yikes! Went on excursions to Curry’s Paint Store in London for some paints and brushes. I painted a glass milk pitcher and that’s when I found out the ol’ hand isn’t to steady for any detail work. I covered the pitcher with a coat of grayish paint and now I have another canvas to paint on. That’s the nice thing about acrylics...they dry fast and you can cover up mistakes. It’s going to take a big learning curve before an attempt to paint Lake Lisgar. Must remember how to mix colours...hard to get the right mix...practice...practice...practice!

Wednesday Nov 20^th:  No therapy today. Went in the pool with Yonna. It was a good workout. Just took it easy in the afternoon. Did some painting...going to try the pitcher again. Everything came out alright at 8 o’clock...

Thursday Nov 201^st:  Last day of the Treadmill program and last day of assessment. Woke up at about quarter to 3, my lower abdomen was aching, a strange feeling. I don’t know if it is a bladder or a prostate problem or because of all the tight muscles. Rather than have Dr. Steen get me all worried, I’ll go to the real doctor on Friday. In the morning!

I was all toned up and it was difficult moving around and I was leery about doing the assessment. Well, when I got to Parkwood and started doing sit to stands. I had one of my better days on the treadmill. They do what is called phasing. Have the treadmill running at .8 miles per hour and they slowly take hands off. On the treadmill, there is a physio holding my pelvis and keeping it in the right position. They stop supporting my pelvis and I walk unsupported...sounds easy but I must pay attention to every move or I’ll start swinging in the harness. Test 2 is removing hands from my legs and feet. I can get down to them holding just my toes.

The walking after was also pretty good. I walked about 110 feet with little assistance. There was a physio on either side, just in case but even when I stumbled when I catch my toe, I was able to correct myself and they didn’t help me. They videoed the walk and they showed me a video of me walking in a highboy walker last January. There were 3 physios helping me and I had my arms braced on the walker. After watching both videos...I have improved, if I do say so myself...yeehaw! I need to get the confidence to walk on my own. Still have a lot to do to walk properly. Must step over my left leg...I still tend to let that left hip stick out. Since I sit so much, it is difficult to straighten out my back. I walk bent forward. It feels straight up but when I see myself in a mirror, I am definitely not walking straight up. Walking bent over causes lower back problems...grrrrr!

Found out I’ll be going back to seeing Stephanie twice a week on Tuesdays and Thursdays at 11:00. That works out well, I can do the gym on Mon, Wed and Fri mornings with Grandpa, in the pool at noon with Darcy or Yonna and ride the trainer in the afternoon. Should be able to build up some endurance with that program.

Friday Nov 22^nd:   Went to the gym for the first time since the middle of September. Darcy came along with Grandpa and I. Got into the gym and got the coat and sweater off and walked to the leg press machine. Did very light sets and only went up to 50 kg. Did 3 sets of 10 on each leg. Did 3 sets of 10 of toe presses to strengthen the calf and to try and stretch the Achilles on the left leg. If I can get some flexion in that ankle it would be so much easier to walk. Walked to the leg extension machine and did 3 sets of 10 reps at 20 kg with each leg.

Moved the chair to the pulley machine and walked to the chair and did a bunch of sets on my arms. I may be a little sore tomorrow but I did take it easy...much to Darcy’s surprise!

After the gym it was home to get into the bathing suit to go to the pool. Darcy took me and stretched out my arms and legs. Did some walking without assistance and not hanging on the wall. I am able to catch myself if I lose my balance and as a safety precaution, there is a float around my chest...just in case. Felt good getting into the deep end and getting the legs moving after doing the weights. I do some exercises at the stairs, I think one day probably when Yonna is with me I’ll walk up the stairs at the pool.

In the deep end I can work on a lot of muscle groups in my hips and upper legs. A big problem is that I have a lot of difficulty lifting my left foot off the ground. It is good exercise in the pool lifting the left leg up.

Saturday Nov 23^rd: Got to Karate class. 79 year old Frank was there doing his stuff...he amazes me. Missed 3 classes, it was good to be back. Did two walks of about 50 feet in the Dojo. Out for lunch at Cultures.

Sunday Nov 24^th: Coffee with the guys at McDonalds. Amazing how the clientele at McDonald’s has changed. Not too many kids anymore, the parents of Gen-X and grandparents of Generation-Y or just a bunch of old fogies drinking coffee with free refills! Did you hear some places are stopping the seniors discounts because the seniors for the most part have all the money...and so?????

How am I feeling?

Yikes my claustrophobia is back or at least on one occasion. We were going to get the car washed at Pioneer on Simcoe Street. The lane to the car wash goes behind the station and is narrow with a wall on right side. There were 3 cars in front of us and when we pulled in behind the last car and I looked behind and then it hit, an anxiety attack about being trapped. I could feel my blood pressure go up and I ‘asked’ Darcy to back up and get out. She did and once out I was alright again. Then I feel foolish as I know it is all in my head. For a while I could control them but this one got away from me. I had one last week in Ingersoll. In a line up for gas...just had to get out.

I was going to take part in a study in Toronto for a Functional MRI. They would tape sensors to my hand and then they would put me in the machine for ½ hour and have me tell them every five minutes what I was feeling. They have the sensors taped to specific nerves in the hand and map the nerves in the neck that run the hand. It would be 3 half hour sessions in the tube. For those of you who don’t know about MIR’s, they slide you in a tube with the top of the tube being about 3 cm from your nose. It is so noisy in there they put on ear protection. When I signed up I thought I’d be able to do it but the more I thought about it the more ‘frightened’ I became, and I cancelled.

It appears that it is time to call the mental health nurse and find out what’s going on. I am having an MIR on my right shoulder on Dec 7^th in London. Another MIR on my neck on, get this date, Friday, Dec. 13th...damn, I’ll miss Pt. Dover. Darcy already has the Ativan for that event. I couldn’t use Ativan in Toronto as they needed me lucid to answer questions and feel the sensors.

Thanks for listening...

Monday November 11

Sorry about the delay...messed up my passwords and couldn’t get into my blogspot account. Meghan can get in so I emailed this to her. This one is short to make up for all the long ones.

Oct 14 to Nov 3, 2013

Yikes this is the first time I have not written down notes for every day. This may be a short blog…we’ll see. The past 2 weeks have been the same drill as usual, Mon, Tues, Thurs and Friday on the treadmill. Wednesday’s in the pool. But that didn’t work out. As mentioned previously, my lower bowel tightens up when I have a lot of muscle tone and it makes it very difficult to fart and poop. If I don’t have a BM at night I have some Diarrhea the next morning. I put Depends on just in case and I don’t go to the pool in case there is an accident. Missed both pool dates because of it. Even missed the Sunday pool days as well...a big…..grrrr. Missed the wedding of one of the Karate kids…gee how fast they grow…

I do the treadmill for an hour which incorporates walking sessions from 3 to 5 minutes and lots of stepping training and turning around by moving my feet and not shuffling them. Seems I try and stand on my leg before it is ready to take the weight. Must think every time to get the leg ready to take the weight.  After the treadmill it’s overland walking with the walking poles held horizontally or in the bungee walker. These walking sessions tire me out quite a bit and I am just fried after walking. The biggest hindrance to walking is that my upper body is so ridged/stiff/toned, it makes walking difficult. I am on the maximum amount of antispasmodics so I will just have to put up with what I have. The frozen left ankle and a poor moving left hip don’t do anything for my range of movement.

Missed a couple of days on the treadmill just because I had so much tone I couldn’t walk. On those days I’d go to Parkwood and not go on the treadmill and Barry would do some aggressive stretching that helped loosen me up bit.

After the last rant in the last blog about disreflexia and muscle tone we finally figured it out. On Wednesday night, Oct 30, at 8 PM, I couldn’t have a BM. I was feeling very uncomfortable as nothing would move. Blood pressure was getting up into the 150’s/100 so it was time to hit the hospital. Got there at 8:30 and was moved through quickly. I explained the problem and they took an X-ray that proved what a lot of people have said for a long time…I am full of shit! Seems my entire colon was full. Once they determined that, the Doc, who by the way was excellent, came in and said he would leave me in the capable hands of an enema nurse named Connie. I have neurogenic bowel which means I have trouble storing and removing poop. If you want to read more: http://medicine.med.nyu.edu/conditions-we-treat/conditions/neurogenic-bowel#definition

Well, she started. After about 3 tries and 2 bags of enema stuff and drinking 2 glasses of laxatives she was able to get some out but I was still impacted. You have to be a special person to look after impacted patients and have the title of ‘Enema Nurse’. Nurses are very special people.  At 1:30 AM after several attempts, they said needed time for all the stuff to work and I could stay overnight or go home. Chose to go home and wait for it to happen. Nothing happened until 7:00 AM and again at noon.  Oh what a relief it was. Thought that was the end of it but the Doc did say I would see them again…I thought I was done.

Dr. Steen thinks this may have been the problem all along causing my tone, causing the dysreflexia, pain in the bladder and in the prostate for the past weeks and even back to August. Can’t believe how much a full intestine affects my body. The problem is that all the muscle relaxants that I am on also relax my intestines so they don’t contract and move the stuff along. It all just sits there and causes me grief. The solution to the problem is to take more stool softeners and laxatives to stimulate the ol’ bowels into moving. There is a fine line in how much I should be taking…too much and it goes the other way. It is going to be by trial and error. The laxatives are on top of all the fiber that I eat throughout the day. At breakfast, for example, I have mini shredded wheat which has no salt or sugar in it. I add bran buds, hemp hearts, flax seeds, sunflower seeds and raisins plus prunes. Y’d think that’d be enough fibre. But it I guess it isn’t. I figured the fibre would work and I wouldn’t need the laxatives.

I was able to attend the Cycling Club’s banquet on Saturday night. Jeez, I’ve been away 2 years and I didn’t recognize half the people in the room. Good meal of the normal Belgium Hall fare, Fried chicken, cabbage rolls and a chocolate Sunday.

On Oct 25^th I had an appointment with a hand specialist. The Resident came in and did the preliminary examination and said they may be able to get me more movement if they moved some tendons around. The Doc came in and said they couldn’t do the tendon transfer as I had too much spasticity in my hand. In fact it would give the opposite effect that would want. Both Drs. Were excellent but what else would you expect from 2 avid cyclists.

Sunday night it was back to the hospital for another dis-impaction and 2 enemas. Another X-ray showed that there was still a lot left to move…I’m only half full of it now…Ha! The Doc recommended that I up the laxatives for a while. I am taking 2 tablespoons of Milk of Magnesia, a table spoon of Lactolose, 2 teaspoons of RestoraLax, 4 tablets of Ducocet, 2 tablets Senecot plus all the previously mentioned fibre. Should be able to poop through the eye of a needle with all that stuff!

How am I Feeling?

Feeling good that we may have solved some of the muscle tone problem for the time being. Now it is a matter of time before it is resolved. Since I have been on the treadmill program, I stopped riding the trainer and lifting weights. Those two activities got me to where I am now and I would really like to get back at them. I think there are 10 sessions left on the treadmill. The treadmill program has been sort of hit and miss, I missed some and the staff missed some and I wonder if missing sessions defeats the purpose of building new pathways. Guess we’ll see.

I must consciously remember to take the weight off a leg before trying to move it and that is very hard to do! Can’t walk if I don’t do that...must also remember to look up, keep chin in, shoulders back and down, lead with my belly button, stand on my leg while the other one is taking a step, keep my left hip forward and keep my back straight. It is difficult to think of all of these directions when stepping, but if I don’t walking becomes very difficult. Supposedly if I keep walking my brain will start doing it again subconsciously...here’s hoping. I have developed to very bad habits I tend to look at the floor right in front of me and second, I use my left shoulder to do everything. When the left leg won’t move I lift my right shoulder to try and get it up. That’s the pathway my brain has figured out, now I must break that habit.

Thanks for listening…

Sept 30 to Oct 13, 2013

Sept 30 to Oct 13, 2013

Again, no therapy on Monday….grrrr. I just figured out why my right leg was giving out. Last couple of times I was at the pool there were no males around to push me through the dressing room so I propel myself with my right foot forgetting that it stresses the hamstring. That’s why the right leg was giving out when I was walking, the hamstring was fried.  Here I was thinking my good leg was getting weaker. Went to the pool and had another good session. 

Got a call on Tuesday morning that physio was canceled as there was too many staff away sick. That will be 7 days without therapy. Went to the pool again and all the regulars were wondering what I was doing there on a Tuesday. Going to give the bike a rest for a week just to see if that relieves some of the muscle tone which may improve my walking…we’ll see!

As mentioned Shannon wants me to stand and do things with my hands. I started by standing at the sink and rinsing the dishes. I can see why she wants me to do it. When I am working with my hands, my brain has to keep my balance without me actually thinking about it. It is interesting as I can feel the muscles in my legs contracting and letting go to keep me balanced.  It is similar to standing with your eyes shut. Here’s a picture of me standing brushing my teeth… see no hands...note the bum is out just a bit.

Wednesday it was off to the pool. Yonna was going to take me but she was coming down with a cold and didn’t want to give it to me. Darcy took me and we had the usual workout for about an hour. Jeannie was on for a massage at 2. She worked on my back and left leg. Jeannie does an aggressive massage and there is a certain amount of pain that goes with it. About ½ after the massage, my back started hurting and I had nasty bout of dysreflexia. The blood pressure was getting up to 165/106 and this happened several times. It just feels horrible. I’ve been having a massage at home for over a year and it has never bothered me in the past. Just wondering what’s changed? The massage seemed to have the opposite effect in that it tightened up my back way too much and then it wouldn’t relax. The dysreflexia got worse and I had several episodes. To top it off I didn’t have a BM before bed which increased the chances of dysreflexia. I finally got to sleep after 12 and was up at 6:30. In the morning, I spent most of the time sitting on the can while the PSW was here. She said she would come back and dress me after her next client…what a nice lady…no…she is a very, very nice lady! After dressing, I tried to eat breakfast and could only eat half the bowl….woops almost but an ‘e’ in bowl!

Due to the chances of having a bowel accident, it was on with the Depends for the day. Was going to go out for lunch with Sensei ML but I had to cancel that….big grrrrrr! I have never had my back this tight. It just won’t relax. Seems when I stretch it gets tighter. Last night when my back tightens up my butt tightens up and I can’t poop. I haven’t ridden the bike this week and have just been in the pool 4 times. I have been doing more kicking in the deep end. Hopefully that isn’t causing the problem. A big catch 22, if I work out I tighten up and get dysreflexia…if I don’t work out, I get out of shape. I haven’t been to the gym since I started the locomotor program. Just sitting here typing this on Thursday morning, I am tightening up just sitting here. 

Holy shit! Was Thursday ever a bad day. Had to go to Parkwood for 1 o’clock. On way up I started feeling strange. We arrived a little late but when I told them my problem, they took my BP and it was up around 165/110. They did some stretching but decided it wasn’t a good idea to do the treadmill with elevated BP. The BP wouldn’t come down so they called Angie who is the Physiatrist’s nurse. She came over and checked my bladder with an ultra sound and it had 500 ml in it. Way too much. According to the Dr., if I were a normal person had that much urine in the bladder it would be very painful. I had the dreaded catheter put in and drained the bladder…yikes I don’t like those things. The BP went down a little but then went back up. The Dr. said my pain will cause an increase in BP. Back to the hemorrhoids, No preparation H so Ange put some freezing on them. The BP was hanging around High 150’ and 160’s and even up to the 170’s. They say I have some pain somewhere that is causing it. The Dr. said it is usually visceral…i.e. intestines, bladders etc….but they don’t know what it is.

Got home and the BP was up in the 172/110…now that is a little scary. The PSW comes at 8 o’clock and Darcy put the silver bullet in at 7:30. I was very worried that there wouldn’t be a BM. Well got on the can and it happened almost right away…yeehaw. Got back into bed and checked the heart rate…it was starting to drop and got down to 126/80.

Getting ready to watch the hockey game and my legs stared burning and I had to get up and go for a spin in my chair. Don’t know why that helps It was 10:30. I asked Darcy to change the flannel sheet to a cotton one. Then got into the chair and went out into the garage…and back in and started writing this. Should go to bed as we are off to Hamilton in the morning to see the urologist. Perhaps he can figure out what is hurting down there. Oh yes, when Ange put the catheter in she said the sphincter muscle was very tight and that’s why I couldn’t pee on my own. I just peed now, that is another… yeehaw. Short lived relief as after my trip to the garage my BP was up in the 150’s/110 again.

On Friday morning my BP was up in the high 150’s again and not feeling good at all. Couldn’t eat breakfast. Muscles were so tight over my stomach, I just couldn’t put any food down.  Got into the car and headed off to Hamilton. It was a little rough but we made it. My family Dr. had upped my Flomax to .8 mg/day and the Urologist agreed that an increase may help me peeing. I see him again in 6 weeks to see if the Flomax is working and if not he’ll put me on something else. At the hospital, I peed but only 250 ml which means the bladder still has lots of pee left in it. For a few minutes, the pain seemed to subside and I was able to move around easier, the back and tummy muscles relaxed noticeably. The good news at the urologist was my PSA was down to 1.76, down from 4.5 when I had the prostate infection. 

On the way home we drove through Brantford and past the trails at the bridge over the Grand and past the trail that I took on Aug 20…that didn’t bother me but I started thinking that I will never be able to ride them again and that was a little depressing. I then started thinking, what a great time it was riding on the trail and yup that started me feeling better.  I guess the moral of the story is never look back, you can’t repeat the past…just keep moving forward….cherish the memory.

Went to see my family Doc about my dysreflexia. He adjusted some of my meds. Upped my gavapentin and gave me some other drugs to help alleviate anxiety when I have a high blood pressure attack. This has to be the worst pain day I have had. I have to fart, but can’t and there is a build-up of gas but my intestine is so tight can’t get it out and my ureter is so tight I can only pee 100 ml at a time. Last time I tried there was a lot of pain when the sphincter tried to open and the pee dribbled out. Oh great, just had a pee and it is full of blood and it is very painful and I only peed about 50 ml. Guess perhaps a trip to the hospital to get an ultra sound on the bladder just to see how much is really in there. Now I have the urge to pee about every 10 minutes and all that comes out is about 10 ml of blood. Getting a little concerned. 

At 10 o’clock on Friday night we went to the hospital because the blood wasn’t stopping and my blood pressure was bouncing all over the place. One reading was 192/110 and with bloody urine it was time to go. At the hospital, they got the ultra sound ‘pee detecting unit’ but according to the machine, I had no bladder. I did have a pee of about 200 ml and it was the first time there was more urine than blood, a good thing. They found another ‘pee detecting unit’ and a new nurse and she did find my bladder (a relief to know that I have one…loll!) and there was 108 ml left in it, which is good. However, before we left, the Emerge Dr came in and gave me a prescription for CIPRIL, an antibiotic for my bladder infection.  What...a bladder infection??? That explains all the muscle tone which causes the dysreflexia that causes the heart rate to go up which causes me to feel crappy and it makes me whine a lot. I didn’t have any symptoms no cloudy urine, no real burning, no smelly urine. I’ve probably had it for a while which explains some of the walking problems on the treadmill.  Took a Zopiclcone to get to sleep and slept from 1:00 to 6:30 when the PSW arrived. 

Saturday, we were supposed to be attending Laura and Jeff’s wedding and reception. I feel very bad missing the wedding as I have watched Laura grow from a little white belt kid to a lovely woman and a Black Belt. Sorry, I won’t be there on her special day! But Sensei Bill, her Dad said he’d save me a bottle of wine so not all is lost.

Saturday was a rest day, in the chair writing the blog and in bed watching TV. The muscle tone is bad and my trunk is tight, legs and the hamstring on the right leg almost feels like it is cramping. Even the arms are tight and feel very heavy to move. Took the antibiotic. Just hope the bugs are susceptible to CIPRIL. The lab at the hospital will type the bacteria to see what it is and what antibiotics will kill it.

It is too early to tell if the anti-b is working, although my legs don’t feel quite as tight. Upper body is still tight. Took a Zopiclone again and slept right through ‘til 4:45.  

Sunday was uneventful. Two days of anti-B’s haven’t noticed a lot of change. Still blood in the urine and I have to pee a lot and still only 25 to 50 ml each time. It still is very painful to pee.

Monday morning, still lots of blood, still painful, still only 25 to 50 ml, still frequently with a lot of urgency and only dribbles. Even with the painful pees the blood pressure is staying down. I don’t get it. 

Tuesday morning, woke up tight but there’s hardly any blood in the urine but it is still painful to pee and gets shut off after about 50 ml. Dr. appointment at 1:00. I was feeling shitty but my BP was not up. They really had no explanation of what was happening so they gave me more drugs… MORE DRUGS!!! Just what I need. Tsanidine is a drug for muscle tone but it makes you tired. I start with ½ tablet for 2 days and increase to a full tablet and then if I am not falling asleep they will increase to I ½ tabs.

Then it was off to physio at 2:30, I was so tight there was no treadmill. Barry gave me the best stretch that I have ever had…and that is ever had. He even got my tone down to something reasonable. My stomach muscles were actually soft and relaxed. He started by putting a half roll at my lower back and laid me over it. He then put 4 soft 3 inch balls under my neck, and under each shoulder blade. While I was in this position he stretched my legs and the students stretched my arms. He then removed the half roll as another patient needed it and he put me on 4 more balls. I was actually lying on 8 balls. He got me up into sitting position and pushed my trunk forward which stretched out my back. Felt good.

I think I have figured out part of my peeing problem. Now remember this is Doctor Steen speaking and he has been wrong before. My Flowmax was doubled to 0.8 mg per day. It has the effect of opening the bladder at a much lower pressure, therefore it stands to reason that I would be peeing less volume and more often if the bladder voids with less in it. That is why my BP hasn’t been going up and no dysreflexia because my bladder is empty and not getting overfull... Does that sound reasonable?

Off to the pool for the first time in a while. My midsection and back are tight but we’ll see if the pool helps relax them. The water felt good and Darcy worked on my arms and legs. She put 3 super dense noodles under the small of my back and helps to keep lying flat. I have a float around my chest and one of those air filled travel collars around my neck that keeps my head up.

Yikes…Wednesday night was a very tough time. I had no BM, as my butt was too tight to poop and that always causes me grief. This may be too much info for some but here goes. When I don’t have a BM, the suppository doesn’t get ‘flushed’ out so some remains and starts to burn.  That burn causes muscle tone, you know the drill, it makes everything tingle, neck tight and the most aggravating is my nose plugging up for hours. This may explain some of it but not all of it. Darcy got me out of bed at 11:30 and I stayed up in my chair for an hour…that seemed to help, unfortunately watching my Has lose to Calgary…didn’t help!  The strange thing is, although I was feeling like crap my blood pressure was low at 119/74...what’s that all about? 

Went to therapy on Thursday.  They worked me on the table for ¾ of an hour then got me on the treadmill. Shannon didn’t think I was that tight and my walking wasn’t all that bad. I felt ok but my nose really plugged up on the way home. The nose stayed plugged until 8 o’clock when I had a pee. Did you get that, when I pee my nose unplugs. Is my nose connected to my bladder somehow???? I was tight all night. Got up Friday and I was still tight but feeling better. I think the anti-b’s are working on the UTI.

Friday got to go in the pool with Darcy. Felt very good. Got some good stretching done and kicking in the deep end. Starting to feel better. At the pool, I met someone that I went to high school with. He spent his life in Connecticut and is now back home…I would never have recognized him.

Did the Karate class today and ran the class, thanks to Sensei John for letting me take the class. A bit of the problem is the fact that I am not doing the exercise so I don’t know how tired they are getting. It is hard verbalizing what I want done rather than demonstrating. Made it through and my voice held out for the whole hour. Got home and did 6 k outside on the trike. The shorter cranks helped as there was a lot less knee pain. Strange that the crank is 3 mm shorter than the other set and it makes that much difference.

Well Sunday was a real pain. Darcy took me to the pool and it was almost empty.  For some reason my lower bowel tightened up and I can’t fart. The gas builds up and causes more pain and makes the bowel tighter. The BP is up to 148/95. Just wait until it loosens up. Darcy thinks it is from riding the trike too far. She wanted me to do 1 lap but we did 2. I felt good at the end of the ride.  I sit here typing this on Sunday night, my right leg is tightening up and my hamstring is in a knot, my arms feel tight sand everything feels heavy to move and the whole body is tingling.

Managed to have a BM with a lot of help from Darcy…’nough said! We decided to stop the nabalone, a muscle relaxant which we didn’t think was doing anything…maybe it was! We’ll start it again and see what happens.

How Am I Feeling?

This dysreflexia has got me worried a bit. My BP going up to the 160’s and 170's and the diastolic going up over 110 to 120 can't be that good. The Dr. said it is not in the stroke range. It’s a real bummer if I can’t exercise for fear of getting Dysreflexia. A bummer that last week went so well and now completely the opposite for these 2 weeks. Guess if I was from Great Briton, I’d have said a ‘fortnight’ instead of ‘2 weeks’. Is that correct Sensei Calum? 

What the hell is going on??? They have said I haven’t stopped changing…I thought the changes would be for the better…not for the worse.  Or maybe it is just a short term thing, and it will get better. Since I can’t feel some of the pain for example, when my bladder is overfull, even though I don’t perceive it as pain my brain still can get the inputs and it does its thing such as high BP, stuffy nose, tingling, muscle tone and anxiety.

When I was doing weights in the morning, swimming at noon and bike ride in the afternoon, I never felt this bad. I haven’t been on the treadmill for a week, haven’t ridden the bike or lifted weights. Couldn’t figure out what was happening. Perhaps by the end of these two weeks it will be all gone. I have this very bad habit of over reacting and thinking I will be tight like this all the time now…I don’t take into consideration that it will get better. Seems bladder infections mess up a lot of things and I need to stay calm…they will go away! 

Called my quadriplegic friend, Etienne. He rode Darcy's trike on a Wednesday and went to Grand Rapids the following Wednesday and bought a trike and he sounded very happy with it. He also got a set of rollers and he'll be able to ride it in the house all winter long....aaaannnndddd...we will now be able to race…

Thanks for listening….